We were having some chat on twitter last night about chronic pain. People made a lot of interesting points and I'm brewing another post that uses those, but I was asked a question by @Tricia_the_doc which I thought was a good place to start : "What are the best tips you can offer docs in terms of things to do or say? (I can guess some of the don't do things!)"
It's an interesting question, because as with many things I am much better at talking about what not to do. With some general disclaimers that this is based on my experience as one person with chronic pain and that others might completely disagree, I came up with the following.
1) And this one is for both 'sides' of the conversation - it's important to recognise the barriers created by previous bad pain management.
As a patient, I recognised that I feel defensive whenever a doctor mentions my pain medication, because so many times in the past I've been told that I don't need it / I'm too young for it / I have a low pain threshold (which is a very stupid reason to deny painkillers) / I'll get addicted etc.
When doctors believe that I'm in pain I am able to relax into a conversation about pain management without worrying that the subtext of the discussion is 'You're not in pain so I'm stopping your painkillers', in the same way that I can have a calm and rational discussion about changing the dose of my asthma inhalers.
I get anxious when doctors threaten to stop my painkillers because I am in pain. The painkillers I use make the pain bearable most of the time. Without them I am in constant, unbearable pain - the kind of pain that sends you out past screaming into practical catatonia. Without meaning to be hyperbolic, threatening to stop my medication is essentially threatening me with torture. So yes, I am anxious.
I would like my doctors to recognise that it is normal for me to feel defensive and anxious about my pain management. Sometimes if I talk to a patient who I sense is becoming defensive in a similar way, I will say 'I believe that you are in pain - I'm asking these questions to get to the bottom of it, not because I'm trying to catch you out'.
2) The tricky bit of chronic pain management of course is patients who
you suspect are misusing pain medication in some way - becoming
addicted, selling it etc. As someone with chronic pain I am inclined to
say that this is not my problem and certainly I believe in erring on the
side of caution - I think that I would rather unnecessarily treat
someone not in pain than not treat someone who is. However, I also
understand that 'drug seeking' wastes time and resources as well as
putting people's health in danger.
If a doctor were to
think that I was misusing my medication I would appreciate an open
conversation with them about it - expressing concern for my wellbeing,
offering support, suggesting alternatives - and remembering that many
people who misuse pain medication do actually have underlying chronic
pain.
3) It is rare for doctors to make positive suggestions about my pain management. Far more likely (most doctors I visit) is for doctors to suggest removing elements of my treatment without asking me what my pain is like or how well controlled it is on my current plan.
If you genuinely think that I might get better results from another medication then I would definitely like to hear about it! However, because of aforementioned anxiety, it would be great for you to make clear that it is my decision and that if it does not work you will re-start my previous medication. Ditto, if you think that I could still be well maanged at a reduced dose because my condition has improved.
A specific word r.e. paracetamol - a lot of my friends on being told that they should take regular paracetamol alongside stronger meds think that this is a sign the doctor hasn't understood how bad their pain is. Make extra clear that paracetamol is actually very effective (even though it can be used for mild pain, that doesn't mean it is a weak drug) and that it enhances the stronger medications.
Non drug treatments are also useful - especially things like mindfulness practice which help people to cope with experiencing pain (the aim of chronic pain management is to manage pain, not to remove it entirely). Please make it clear if you mean this as an adjunct to drug therapy rather than a replacement. See point 1!
If you have anything to add or you have a different perspective, please feel free to share =]
At Both Ends of the Stethoscope.
Showing posts with label being a bendy. Show all posts
Showing posts with label being a bendy. Show all posts
Friday, 9 November 2012
Tuesday, 6 November 2012
All At Once
This is not my most succint post - more of a thought exercise than anything else. I'd be interested to read your thoughts on the subject if you'd like to comment.
Chronic illness is a funny old thing.
In my time on the wards the last few weeks I've talked to a few patients who have been diagnosed with illness or impairment less severe and less disabling than my own but who are receiving intensive, inpatient treatment whilst I am currently 'only' under the care of my GP.
It is hard in my situation not to compare my own experiences with those of the patients I interact with, and I don't believe it is inappropriate as long as it is an occassional ponder on my own time and that if it does affect my interaction with the people I come across as patients, it is in a positive way (for example to remember that I am not a good historian when I am upset and in pain, which helps me to be patient with someone in a similar situation).
Comparisons are of course difficult (especially between different conditions/symptoms) and mostly subjective, but for this train of thought exact comparisons aren't really the point. Nor is the point to downplay these folks' experiences or to suggest that their care is inappropriate, as I don't believe that it is.
The point (finally) is to reflect on the difference between acute and gradual onset of chronic illness or impairment. There are two similar topics that you will have read/heard a lot about if you've been hanging about the sick/disabled blogosphere for a while :
- invisible vs visible illness/impairment
- congenital (from birth) vs acquired illness/disability
I don't hear/read a lot about this particular topic, although it falls in to the same category of illustrating the diversity of experience within our community. It also lends itself to the same 'which situation is better?' philosophising. (Spoiler : tends to come down to 'both have pros and cons' or 'better the devil you know')
It is strange to know that if I had woken up today in this state having gone to bed yesterday perfectly healthy, I would be in hospital now - yet over the course of all of this I have only once been inpatient (impatient is another matter...). This is attributable in various parts to :
- good fortune on my part - some other folk with my conditions are much more severely affected than I and require long stretches in hospital
- medical knowledge, social support, good primary care and accumulated experience and equipment which allow me to manage things at home which I would otherwise need to be admitted for
- and, not so good, some very bad calls made by previous members of my healthcare team
I see these people whose lives have been transformed in an instant and their experience is both entirely familiar and entirely alien.
When I first used a wheelchair, it was an indescribable relief because it dramatically increased what I was able to do and where I was able to go - yet to someone who has suddenly lost the use of their legs using a wheelchair often dramatically restricts their mobility (especially at first).
I have been on regular medication since I was a child. I didn't go from nothing to 22 tablets a day overnight. I am used to the routine of ordering repeats, setting reminders, carrying meds around with me. I am used to balancing side effects with therapeutic benefit. I am used to justifying my use of pain killers to any doctor who vaguely decides I am too young for opiates.
I am used to the restricted diet, to constant pain and nausea, to needing to assert my right to adaptations. I am used to doctors touching my body and to stripping my entire existence down to a list of relevant symptoms. I am used to the paperwork, to complete strangers asking personal medical questions, to needing help with 'basic' things. I am used to putting on a public face because even people who ask how I am don't necessarily want to know.
I have learned these lessons gradually, often the hard way and by making mistakes. I have been mostly taught by other sick and disabled people, including those in my online community. I have had very little multidisciplinary input considering the combined impact of my conditions - and the care that I have received has generally been a fight to access.
I think the learning curve would have been greatly steepened in an acute situation. I think my understanding of the situation would be more medicalised at first if I had been learning how to be in this new body from healthcare professionals rather than from other sick/disabled people. I would have had physio, OT, orthotics and social work involvement from the word go (at least in theory), rather than in a haphazard way.
As for grief and acceptance I am not sure. I know that sometimes it feels easier when a lot of things change all at once and then the dust settles, you can evaluate where you're at and start to move forward. Sometimes it is easier when things happen bit by bit, giving you a chance to catch up and learn to cope with each step. Sometimes it helps to not have a 'normal' before to compare to - I have always been sick to some extent.
I see this process as a journey rather than a binary state. It is amazing in the magnitude of serious illness and disability what it is that really makes you break down. A couple of weeks ago I had a really bad day of grief because I was finding being gluten free so difficult, when in the scheme of things - even the big picture of my dietary restrictions - it's not that big a deal.
And by the way, the things I said I'm 'used to' - it's not quite as simple as that. I suppose I mean that often I can do or experience those things without thinking much about it. Thursday nights I sit down with my dosette box and dole out my pills. Strangers ask what's wrong with me and I say 'that's a very personal question that I'd rather not answer' or 'I have a problem with my joints' depending on situation. But sometimes these inconsequential things are quite unbearable. I can't stand the thought of the BP cuff inflating around my arm one more time. My everyday pain levels are suddenly just too much to cope with.
My take home thoughts are these :
- Acute management is much better than chronic illness management as a general rule. Initial care tends to be better for something that happens 'all of a sudden', but then we all tend to end up in the same slightly leaky boat.
- Tied to this, community access to multidisciplinary support (physio, social work...) needs to be a lot better and easier.
- No matter the speed of onset, chronic illness/disability will often entail a period of adjustment and some degree of grief.
- A really positive aspect of chronic illness/disability can be to share experience/advice/support with individuals who find themselves in the same situation - especially in an 'all of a sudden' context.
Chronic illness is a funny old thing.
In my time on the wards the last few weeks I've talked to a few patients who have been diagnosed with illness or impairment less severe and less disabling than my own but who are receiving intensive, inpatient treatment whilst I am currently 'only' under the care of my GP.
It is hard in my situation not to compare my own experiences with those of the patients I interact with, and I don't believe it is inappropriate as long as it is an occassional ponder on my own time and that if it does affect my interaction with the people I come across as patients, it is in a positive way (for example to remember that I am not a good historian when I am upset and in pain, which helps me to be patient with someone in a similar situation).
Comparisons are of course difficult (especially between different conditions/symptoms) and mostly subjective, but for this train of thought exact comparisons aren't really the point. Nor is the point to downplay these folks' experiences or to suggest that their care is inappropriate, as I don't believe that it is.
The point (finally) is to reflect on the difference between acute and gradual onset of chronic illness or impairment. There are two similar topics that you will have read/heard a lot about if you've been hanging about the sick/disabled blogosphere for a while :
- invisible vs visible illness/impairment
- congenital (from birth) vs acquired illness/disability
I don't hear/read a lot about this particular topic, although it falls in to the same category of illustrating the diversity of experience within our community. It also lends itself to the same 'which situation is better?' philosophising. (Spoiler : tends to come down to 'both have pros and cons' or 'better the devil you know')
It is strange to know that if I had woken up today in this state having gone to bed yesterday perfectly healthy, I would be in hospital now - yet over the course of all of this I have only once been inpatient (impatient is another matter...). This is attributable in various parts to :
- good fortune on my part - some other folk with my conditions are much more severely affected than I and require long stretches in hospital
- medical knowledge, social support, good primary care and accumulated experience and equipment which allow me to manage things at home which I would otherwise need to be admitted for
- and, not so good, some very bad calls made by previous members of my healthcare team
I see these people whose lives have been transformed in an instant and their experience is both entirely familiar and entirely alien.
When I first used a wheelchair, it was an indescribable relief because it dramatically increased what I was able to do and where I was able to go - yet to someone who has suddenly lost the use of their legs using a wheelchair often dramatically restricts their mobility (especially at first).
I have been on regular medication since I was a child. I didn't go from nothing to 22 tablets a day overnight. I am used to the routine of ordering repeats, setting reminders, carrying meds around with me. I am used to balancing side effects with therapeutic benefit. I am used to justifying my use of pain killers to any doctor who vaguely decides I am too young for opiates.
I am used to the restricted diet, to constant pain and nausea, to needing to assert my right to adaptations. I am used to doctors touching my body and to stripping my entire existence down to a list of relevant symptoms. I am used to the paperwork, to complete strangers asking personal medical questions, to needing help with 'basic' things. I am used to putting on a public face because even people who ask how I am don't necessarily want to know.
I have learned these lessons gradually, often the hard way and by making mistakes. I have been mostly taught by other sick and disabled people, including those in my online community. I have had very little multidisciplinary input considering the combined impact of my conditions - and the care that I have received has generally been a fight to access.
I think the learning curve would have been greatly steepened in an acute situation. I think my understanding of the situation would be more medicalised at first if I had been learning how to be in this new body from healthcare professionals rather than from other sick/disabled people. I would have had physio, OT, orthotics and social work involvement from the word go (at least in theory), rather than in a haphazard way.
As for grief and acceptance I am not sure. I know that sometimes it feels easier when a lot of things change all at once and then the dust settles, you can evaluate where you're at and start to move forward. Sometimes it is easier when things happen bit by bit, giving you a chance to catch up and learn to cope with each step. Sometimes it helps to not have a 'normal' before to compare to - I have always been sick to some extent.
I see this process as a journey rather than a binary state. It is amazing in the magnitude of serious illness and disability what it is that really makes you break down. A couple of weeks ago I had a really bad day of grief because I was finding being gluten free so difficult, when in the scheme of things - even the big picture of my dietary restrictions - it's not that big a deal.
And by the way, the things I said I'm 'used to' - it's not quite as simple as that. I suppose I mean that often I can do or experience those things without thinking much about it. Thursday nights I sit down with my dosette box and dole out my pills. Strangers ask what's wrong with me and I say 'that's a very personal question that I'd rather not answer' or 'I have a problem with my joints' depending on situation. But sometimes these inconsequential things are quite unbearable. I can't stand the thought of the BP cuff inflating around my arm one more time. My everyday pain levels are suddenly just too much to cope with.
My take home thoughts are these :
- Acute management is much better than chronic illness management as a general rule. Initial care tends to be better for something that happens 'all of a sudden', but then we all tend to end up in the same slightly leaky boat.
- Tied to this, community access to multidisciplinary support (physio, social work...) needs to be a lot better and easier.
- No matter the speed of onset, chronic illness/disability will often entail a period of adjustment and some degree of grief.
- A really positive aspect of chronic illness/disability can be to share experience/advice/support with individuals who find themselves in the same situation - especially in an 'all of a sudden' context.
Thursday, 14 June 2012
GP Chronicles
May I say again that my new GP rocks?
To those of you with competent GPs this post might seem really boring. It is just a summary of a GP appointment. I have never had a good GP before and I know a lot of folk who are disabled or living with chronic illness do not have a GP who understands how complex, exhausting and paperwork-laden that can be.
Today's appointment (because you are all desperate to know) was about my tummy meds. I've been on metoclopramide to increase my gastric emptying and was helping with the worst of the pain / nausea. Great, except that it was making me twitch/tremor all over the shop. It's been a month and I have a general rule with medications that I stick side effects out for a month if I possibly can to see if they'll die down (obviously, this is not always possible so you have to use common sense - when I tried trazodone ages ago it made me throw up every day for a week, so I stopped it then). For example, the first few days of taking this drug I had an awful taste in my mouth. I'd had it before and knew that within a week it should go, which it did. The twitches didn't and in fact have been getting worse, so lovely GP has taken me off them because of the risk of this being the start of a movement disorder. Metoclopramide is one of few options for gastroparesis/delayed gastric emptying that is now off the table. There was a good chance of this anyway, as a young woman but I'm a bit bummed anyway.
Then we had a discussion (yes, a real discussion where she listened to me and everything) about the relative benefits and risks of domperidone vs prochlorperazine. She went with prochlorperazine because domperidone has risk of similar movement disorders to metoclopramide (although the risk is much less). I pointed out that the endoscopy had confirmed her suspicions of delaye gastric emptying and that domperidone is a prokinetic. She went to make a prescription for domperidone but the computer told her that domperidone + amitriptyline risks prolonged QT (a dodgy heart rhythm that can be very bad) so as amitriptyline is very important for my pain management we decided maybe prochlorperazine would be better. The computer told her that prochlorperazine can increase the effects of amitriptyline and tramadol so she warned me it might make me super sleepy. So she double checked in the BNF to see if there was an alternative, which there wasn't.
She gave me with the prescription with instructions to stop the metoclopramide for a few days to let things settle, to give the prochloperazine a go and see how I get on with it and a warning to come back if my twitches don't resolve when I stop the metoclopramide. She also said that she's not ruling domperidone out, but that we would have to figure out how to use it safely if that becomes necessary.
I left promising to tell my body to behave better for next time and she laughed.
----
Does this all sound normal to you? If you'd told me a year ago I could leave a GP appointment not wanting to cry I wouldn't have believed you. To have a GP who smiles when she sees me, takes me seriously, asks my opinion and listens to it, has a good idea of my knowledge base (so didn't need to explain long QT but did tell me the more common name for prochlorperazine, stemetil) warns me about medication side effects, tells me to come back if I need to and laughs with me is nothing short of incredible. Since I changed GPs I have had 3 consultant referrals, support for DLA, blue badge and DSA applications and have made some actual progress in managing all the bendiness. I feel very, very lucky.
To those of you with competent GPs this post might seem really boring. It is just a summary of a GP appointment. I have never had a good GP before and I know a lot of folk who are disabled or living with chronic illness do not have a GP who understands how complex, exhausting and paperwork-laden that can be.
Today's appointment (because you are all desperate to know) was about my tummy meds. I've been on metoclopramide to increase my gastric emptying and was helping with the worst of the pain / nausea. Great, except that it was making me twitch/tremor all over the shop. It's been a month and I have a general rule with medications that I stick side effects out for a month if I possibly can to see if they'll die down (obviously, this is not always possible so you have to use common sense - when I tried trazodone ages ago it made me throw up every day for a week, so I stopped it then). For example, the first few days of taking this drug I had an awful taste in my mouth. I'd had it before and knew that within a week it should go, which it did. The twitches didn't and in fact have been getting worse, so lovely GP has taken me off them because of the risk of this being the start of a movement disorder. Metoclopramide is one of few options for gastroparesis/delayed gastric emptying that is now off the table. There was a good chance of this anyway, as a young woman but I'm a bit bummed anyway.
Then we had a discussion (yes, a real discussion where she listened to me and everything) about the relative benefits and risks of domperidone vs prochlorperazine. She went with prochlorperazine because domperidone has risk of similar movement disorders to metoclopramide (although the risk is much less). I pointed out that the endoscopy had confirmed her suspicions of delaye gastric emptying and that domperidone is a prokinetic. She went to make a prescription for domperidone but the computer told her that domperidone + amitriptyline risks prolonged QT (a dodgy heart rhythm that can be very bad) so as amitriptyline is very important for my pain management we decided maybe prochlorperazine would be better. The computer told her that prochlorperazine can increase the effects of amitriptyline and tramadol so she warned me it might make me super sleepy. So she double checked in the BNF to see if there was an alternative, which there wasn't.
She gave me with the prescription with instructions to stop the metoclopramide for a few days to let things settle, to give the prochloperazine a go and see how I get on with it and a warning to come back if my twitches don't resolve when I stop the metoclopramide. She also said that she's not ruling domperidone out, but that we would have to figure out how to use it safely if that becomes necessary.
I left promising to tell my body to behave better for next time and she laughed.
----
Does this all sound normal to you? If you'd told me a year ago I could leave a GP appointment not wanting to cry I wouldn't have believed you. To have a GP who smiles when she sees me, takes me seriously, asks my opinion and listens to it, has a good idea of my knowledge base (so didn't need to explain long QT but did tell me the more common name for prochlorperazine, stemetil) warns me about medication side effects, tells me to come back if I need to and laughs with me is nothing short of incredible. Since I changed GPs I have had 3 consultant referrals, support for DLA, blue badge and DSA applications and have made some actual progress in managing all the bendiness. I feel very, very lucky.
Wednesday, 13 June 2012
Hope
I am not having a good day. My tummy's been asleep the last couple of days so I've been nauseated, and none of my meds seem to have been absorbing (which won't be helping the stomach either) so I'm in a lot of pain of one kind and another and a bit fed up.
It's verging on that tunnel-vision can't be distracted from, can't do anything else, feels like it will never end kind of pain/nausea. It shakes my confidence in my ability to manage my condition. It makes it hard to remember that life is not always this way and that at some point in a few days or a few weeks it will hopefully get a bit better, as it has done before. It makes me think that there is no way I am ever going to get back to uni, because there is no way I could study / work feeling the way I do today.
I know that this is probably just payback for a couple of weeks of busy days and being a bit lax on my tummy friendly diet plan over the (not)wedding/honeymoon, or to do with the anxiety surfacing around my driving test / everything that needs to get done before I get back to uni, or another infection like the bronchitis I had a few weeks back. I know that one or all of these has triggered this flare and that it will ease, but I'm scared that it won't. I get scared every time that I won't recover. I have found as well that each flare has residue - they all leave things a little or a lot worse than before. So I'm lying here wondering what's going to be different now.
So much so negative. I feel like I should apologise. I know it can be hard to stay positive when you feel like others are dragging you down, so I'm sorry if this is too much negativity. I know that other folk, including other folk who will read this have much more to deal with right now that me.
There's obviously a lot of great stuff going on for me at the moment and I am thankful for all of it. I should say that. The good and the bad are running in parallel like they always do.
This was supposed to be about hope though, so I will get round to that. Chronic illness brings its fair share of bad days. I find that it helps to accept that and be prepared for days when you feel hopeless. I have a stack of books / kindle list of books that make me feel better - either funny things or books about mindfulness (for example How to be Sick which I read on honeymoon and highly recommend). I have several playlists depending on which breed of bad day I'm in - angry music, weepy music, gentlyacousticyhappy music. I have a bad day box full of distractions - games, bubbles, felting and card-making supplies.
Most important to me is a small black notebook which I call my 'bad day book'. I started this book in the middle of a severe depressive episode / fatigue flare and am still adding to it. It is full of quotes - some cheesy'n'inspirational, some from the Bible, some from books I have read on mindfulness or recovery, some silly poems. After I've finished this post I'm going to write the vows we used at our blessing in to it. The aim was to have a book full of gentle, hopeful, positive words that have meant something to me during previous bad times, to keep me going. On bad days I read those words, sometimes I draw pictures to go with them or add new quotes in. It helps a little. Often helps me to identify the particular emotion - fear or grief or anger - that is contributing to a bad mood.
One of the readings we used at the blessing (found here) includes this :
"And in the moments – because they will come –
when...the story of love feels like it has no words left to be told,
may the silence that stretches before us
be filled with the faith
of the echo
of the memory
of the love
spoken into the world
before all time began."
Sometimes that's what bad days feel like 'the faith, of the echo, of the memory, of hope'. A tiny whisper of hope is enough to keep you going.
It's verging on that tunnel-vision can't be distracted from, can't do anything else, feels like it will never end kind of pain/nausea. It shakes my confidence in my ability to manage my condition. It makes it hard to remember that life is not always this way and that at some point in a few days or a few weeks it will hopefully get a bit better, as it has done before. It makes me think that there is no way I am ever going to get back to uni, because there is no way I could study / work feeling the way I do today.
I know that this is probably just payback for a couple of weeks of busy days and being a bit lax on my tummy friendly diet plan over the (not)wedding/honeymoon, or to do with the anxiety surfacing around my driving test / everything that needs to get done before I get back to uni, or another infection like the bronchitis I had a few weeks back. I know that one or all of these has triggered this flare and that it will ease, but I'm scared that it won't. I get scared every time that I won't recover. I have found as well that each flare has residue - they all leave things a little or a lot worse than before. So I'm lying here wondering what's going to be different now.
So much so negative. I feel like I should apologise. I know it can be hard to stay positive when you feel like others are dragging you down, so I'm sorry if this is too much negativity. I know that other folk, including other folk who will read this have much more to deal with right now that me.
There's obviously a lot of great stuff going on for me at the moment and I am thankful for all of it. I should say that. The good and the bad are running in parallel like they always do.
This was supposed to be about hope though, so I will get round to that. Chronic illness brings its fair share of bad days. I find that it helps to accept that and be prepared for days when you feel hopeless. I have a stack of books / kindle list of books that make me feel better - either funny things or books about mindfulness (for example How to be Sick which I read on honeymoon and highly recommend). I have several playlists depending on which breed of bad day I'm in - angry music, weepy music, gentlyacousticyhappy music. I have a bad day box full of distractions - games, bubbles, felting and card-making supplies.
Most important to me is a small black notebook which I call my 'bad day book'. I started this book in the middle of a severe depressive episode / fatigue flare and am still adding to it. It is full of quotes - some cheesy'n'inspirational, some from the Bible, some from books I have read on mindfulness or recovery, some silly poems. After I've finished this post I'm going to write the vows we used at our blessing in to it. The aim was to have a book full of gentle, hopeful, positive words that have meant something to me during previous bad times, to keep me going. On bad days I read those words, sometimes I draw pictures to go with them or add new quotes in. It helps a little. Often helps me to identify the particular emotion - fear or grief or anger - that is contributing to a bad mood.
One of the readings we used at the blessing (found here) includes this :
"And in the moments – because they will come –
when...the story of love feels like it has no words left to be told,
may the silence that stretches before us
be filled with the faith
of the echo
of the memory
of the love
spoken into the world
before all time began."
Sometimes that's what bad days feel like 'the faith, of the echo, of the memory, of hope'. A tiny whisper of hope is enough to keep you going.
Wednesday, 23 May 2012
Lots of (Good) News
I thought we could do with a little positivity after my previous overwhelmed and gloomy post. In bullet point form :
- My communication cards arrived. I haven't had to use them yet (typically).
- I got my discretionary blue badge.
- To celebrate I got a pretty holder for my blue badge which arrived super quickly in the company of the radar key* I'd never quite got round to ordering before.
- The next day my DLA letter arrived - I got high rate mobility and mid rate care as I hoped. I was expecting to have to go all the way to tribunal so that was a welcome surprise. The awards are indefinite, which for me will probably mean until I'm assessed to transfer to PIP at which point anything could happen.
- This means that I can apply for a motability car. I can't tell you how much of a relief that is. My driving test is coming up pretty soon so I'm hoping that this run of positivity will extend that far!
- The payments get backdated to when I got the form in February which means that I can afford a couple of impairment related things (such as an exercise bike to maintain muscle tone in my legs) that I couldn't afford before.
- I had a cardiology appointment yesterday. This would not normally be good news. I asked him about my diagnosis and we had quite a useful conversation, the upshot of which was that I have autonomic dysfunction (quelle surprise) which 'seems to be more the POTS than the bradys and the vasovagal' (and I quote). He is king of vague and his English is not great, but in short I have (the) POTS. As with every diagnosis it's bittersweet - yay I know what the incurable chronic illness I have is called. Tis a step in the right direction anyhow.
- And best of all, my civil partnership is one week tomorrow and the blessing is two days after that. Exciting!
I feel a little guilty because I know that a lot of you are not having a good time of it right now, but equally I know that noone recognises the importance of enjoying the good times like folk who have more bad days than most. So for now I'm enjoying good fortune, keeping out of the heat (DLA backpay meant that I could buy a decent fan to stop me collapsing several times a day every time the temperature goes over 20 degrees) and resting up before the big day(s) (long weekend really).
*Radar keys unlock disabled toilets signed up to the radar scheme (in a lot of public places like stations and shops the toilets are locked to stop people trashing the place etc. This is good because I'll stop having to go round the houses to find the person who knows where the key is, but I don't like the system at all. Well, rather, I don't like that it has to exist, as in I don't like that disabled toilets are locked. But that's another post.
- My communication cards arrived. I haven't had to use them yet (typically).
- I got my discretionary blue badge.
- To celebrate I got a pretty holder for my blue badge which arrived super quickly in the company of the radar key* I'd never quite got round to ordering before.
- The next day my DLA letter arrived - I got high rate mobility and mid rate care as I hoped. I was expecting to have to go all the way to tribunal so that was a welcome surprise. The awards are indefinite, which for me will probably mean until I'm assessed to transfer to PIP at which point anything could happen.
- This means that I can apply for a motability car. I can't tell you how much of a relief that is. My driving test is coming up pretty soon so I'm hoping that this run of positivity will extend that far!
- The payments get backdated to when I got the form in February which means that I can afford a couple of impairment related things (such as an exercise bike to maintain muscle tone in my legs) that I couldn't afford before.
- I had a cardiology appointment yesterday. This would not normally be good news. I asked him about my diagnosis and we had quite a useful conversation, the upshot of which was that I have autonomic dysfunction (quelle surprise) which 'seems to be more the POTS than the bradys and the vasovagal' (and I quote). He is king of vague and his English is not great, but in short I have (the) POTS. As with every diagnosis it's bittersweet - yay I know what the incurable chronic illness I have is called. Tis a step in the right direction anyhow.
- And best of all, my civil partnership is one week tomorrow and the blessing is two days after that. Exciting!
I feel a little guilty because I know that a lot of you are not having a good time of it right now, but equally I know that noone recognises the importance of enjoying the good times like folk who have more bad days than most. So for now I'm enjoying good fortune, keeping out of the heat (DLA backpay meant that I could buy a decent fan to stop me collapsing several times a day every time the temperature goes over 20 degrees) and resting up before the big day(s) (long weekend really).
*Radar keys unlock disabled toilets signed up to the radar scheme (in a lot of public places like stations and shops the toilets are locked to stop people trashing the place etc. This is good because I'll stop having to go round the houses to find the person who knows where the key is, but I don't like the system at all. Well, rather, I don't like that it has to exist, as in I don't like that disabled toilets are locked. But that's another post.
Wednesday, 25 April 2012
Lots of firsts =]
Today I have done the following things for the first time :
- booked my practical driving test
- made my own 'baby' food
- bought a wobble cushion (to help with core stability)
- bought kinesio tape (for proprioception - don't worry bendies, I remembered to buy undertape as well)
- bought vega vegan / gluten free protein powdery stuff (as part of my more liquid diet - see previous post)
- bought nuun and high 5 zero electrolyte replacement fizzy tabs
- bought summer arthritis gloves (too hot for my winter ones)
- bought a book about POTS (the kind of dysautonomia I almost certainly have)
All of these things cost me money. All of them are only necessary either because of my impairment/s* or because I am disabled. Yes, some of it is stuff that in an ideal world a physio or OT would have given me, but we don't live in an ideal world. It takes a lot to persuade the NHS to give you something (e.g. a splint) and when they do it tends to be low quality (designed for short-term wear for an acute injury), ugly (beige - don't get me started on the racial privilege behind the term 'flesh coloured'), 'unprofessional' (for aforementioned reasons get scruffy and dirty quickly, uncomfortable (in a one-size-fits-none kind of a way e.g. cheap splints that don't adjust well enough to work with everyone's body), designed to be hidden (see beige) and therefore somewhat disablist (I would rather have a choice of colour to go with what I wear that isn't scruffy, dirty and ugly so that I could wear my splints without feeling the need to hide them. I am not ashamed of my bendy joints).
If you want something different - something designed for longterm use in the confidence that it will be replaced when necessary, something smart / pretty, something that fits properly so I can actually use it rather than it ending up in the splint graveyard - then it can take years, and complaints, and being a pain in the arse, and feeling like you are being done a favour. And even then you will be expected to compromise - price rules. If I buy things myself then I get to choose the design and colour, I get to look at the ethical practices of the company I'm buying from. I get to decide when it needs replacing, and when it's just not working. The only downside is not being able to try things out beforehand, but there are online reviews and return policies, and shops.
Let me give you an example. I needed lighter compression gloves (having bought the thicker ones myself) for the not-winter. My OT only had lycra ones (snags easily) in beige (gets grubby quickly) poorly made (seams started unravelling after 1 hour) with fingers (I need fingerless so I can you know write/type/crochet/eat). They were only useable when I cut the fingertips off and sewed them up, but even so I doubt they'll last a wash. I don't understand why there can't be a prescription like system when if something works you can get it again when the typical lifespan of the product has passed (e.g. yearly). Well, I do understand. The NHS does not always do chronic illness well. 'Health' and 'disability' equipment has a massive mark-up. Especially anything that's a bit different. To get high compression tights / socks that aren't black / beige I need to import them from the states. The tights cost £60, plus postage, plus import tax. I guess this is partly any 'speciality' and partly because they are designed to function alongside US insurance companies and people who can afford to pay them.
Today's 'firsts' cost about £200. I have been delaying getting hold of things I really need because I didn't have the money, I am lucky that my parents were able to help me out. This is why I need DLA - because being disabled is expensive - both in day-to-day stuff (e.g. learning to drive costs more in an automatic than a manual) and in specific equipment.
On a more positive note, each one of these things represents a step forward in the holistic management of my health. None of it's 'fire fighting'. It's all planned, it's all part of a system, it's all a little bit of the whole. I'm feeling good about that.
If you've tried any of the products listed can you comment and let me know how you got on with them? Thanks =]
*What do you guys think? Do multiple medical conditions / symptoms equal multiple impairments? Or is it all together my impairment singular? Does it matter? Am I rambling?
- booked my practical driving test
- made my own 'baby' food
- bought a wobble cushion (to help with core stability)
- bought kinesio tape (for proprioception - don't worry bendies, I remembered to buy undertape as well)
- bought vega vegan / gluten free protein powdery stuff (as part of my more liquid diet - see previous post)
- bought nuun and high 5 zero electrolyte replacement fizzy tabs
- bought summer arthritis gloves (too hot for my winter ones)
- bought a book about POTS (the kind of dysautonomia I almost certainly have)
All of these things cost me money. All of them are only necessary either because of my impairment/s* or because I am disabled. Yes, some of it is stuff that in an ideal world a physio or OT would have given me, but we don't live in an ideal world. It takes a lot to persuade the NHS to give you something (e.g. a splint) and when they do it tends to be low quality (designed for short-term wear for an acute injury), ugly (beige - don't get me started on the racial privilege behind the term 'flesh coloured'), 'unprofessional' (for aforementioned reasons get scruffy and dirty quickly, uncomfortable (in a one-size-fits-none kind of a way e.g. cheap splints that don't adjust well enough to work with everyone's body), designed to be hidden (see beige) and therefore somewhat disablist (I would rather have a choice of colour to go with what I wear that isn't scruffy, dirty and ugly so that I could wear my splints without feeling the need to hide them. I am not ashamed of my bendy joints).
If you want something different - something designed for longterm use in the confidence that it will be replaced when necessary, something smart / pretty, something that fits properly so I can actually use it rather than it ending up in the splint graveyard - then it can take years, and complaints, and being a pain in the arse, and feeling like you are being done a favour. And even then you will be expected to compromise - price rules. If I buy things myself then I get to choose the design and colour, I get to look at the ethical practices of the company I'm buying from. I get to decide when it needs replacing, and when it's just not working. The only downside is not being able to try things out beforehand, but there are online reviews and return policies, and shops.
Let me give you an example. I needed lighter compression gloves (having bought the thicker ones myself) for the not-winter. My OT only had lycra ones (snags easily) in beige (gets grubby quickly) poorly made (seams started unravelling after 1 hour) with fingers (I need fingerless so I can you know write/type/crochet/eat). They were only useable when I cut the fingertips off and sewed them up, but even so I doubt they'll last a wash. I don't understand why there can't be a prescription like system when if something works you can get it again when the typical lifespan of the product has passed (e.g. yearly). Well, I do understand. The NHS does not always do chronic illness well. 'Health' and 'disability' equipment has a massive mark-up. Especially anything that's a bit different. To get high compression tights / socks that aren't black / beige I need to import them from the states. The tights cost £60, plus postage, plus import tax. I guess this is partly any 'speciality' and partly because they are designed to function alongside US insurance companies and people who can afford to pay them.
Today's 'firsts' cost about £200. I have been delaying getting hold of things I really need because I didn't have the money, I am lucky that my parents were able to help me out. This is why I need DLA - because being disabled is expensive - both in day-to-day stuff (e.g. learning to drive costs more in an automatic than a manual) and in specific equipment.
On a more positive note, each one of these things represents a step forward in the holistic management of my health. None of it's 'fire fighting'. It's all planned, it's all part of a system, it's all a little bit of the whole. I'm feeling good about that.
If you've tried any of the products listed can you comment and let me know how you got on with them? Thanks =]
*What do you guys think? Do multiple medical conditions / symptoms equal multiple impairments? Or is it all together my impairment singular? Does it matter? Am I rambling?
Wednesday, 4 April 2012
#nogobritain
I'm sure you'll have heard about NoGoBritain - a campaign about the lack of accessible public transport provision, spearheaded by Tanni Grey-Thompson. Today if you visit #nogobritain you will see people live-tweeting their experiences of public transport provision. If you've not encountered these stories before they could be shocking, but a lot of disabled people could have reeled them off before they were even posted. A lot of public transport is still not accessible for physically disabled people (and a lot, I think, could be done to improve access for people who are learning disabled or have mental health impairments). Here, off the top of my head is a list of some ways public transport is not accessible to me.
Starting with when I was a wobbly walker rather than a wheelie :
- 'perching' benches that don't let you take your weight off your feet were no good for me
- buses with steps = ouch + trip hazard
- bus drivers almost never wait for people to sit down before pulling off (the number of falls this caused me I can't even count)
- this is compounded by wet and slippery floors (maybe can't be helped, but is still an access problem)
- the priority seats fill up first because they're closest to the door, and you'd be astounded at the effort people go to to avoid eye contact when they're sitting in them. People will point blank ignore requests, or simply refuse to move even when they've said that they don't need the seat
- that's if you can even get to the priority seats through the crowd of people standing (I used to leave early for uni to avoid rush hour)
- the number of times I was shouted at, sworn at, threatened, even physically assaulted on one occassion for not 'giving up my seat for someone who needs it' (can't possibly be disabled at 20) would make you disbelieve my earlier point!
- bus drivers here only stop if you've got up an are standing by the door. Ringing the bell isn't enough. Even when there are posters in the bus saying 'stay in your seat until the bus has stopped'
- you have to get to and from the bus stop. This is a problem of joined up design. For example, my local hospital is up hill, about 150m from the nearest bus stop, when a lot of the patient group are likely to use public transport (and the tiny car park makes it the only sensible option) and those going to a hospital are more likely than other destinations to have mobility impairments.
And that's just buses! Other forms have similar issues, but some extra...
- train stations an underground stations often feature stairs quite heavily
- mobility assistance needs to be booked 24 hours in advance, and requires being able to climb into the blue buggies
- underground stations are ridiculously hot and crowded, which as someone who faints frequently makes them no go areas
- when platforms are not put up on the departure board until 5 minutes before departure, or there are last minute platform changes, this is very problematic - I was once knocked over and stood on during a last minute platform change on my journey to a placement
- equally when long distance trains turn off reservations because the train is busy or whatever, this means that those who need a chair are often not able to find one. If you can find a member of staff then they can help, but when corridors are crammed full or they're far away this just isn't possible. One journey I ended up sitting in the luggage rack. Another (particularly memorable) journey was spent sitting on the floor of the toilet.
Since being a wheelie, I face many of the same issues. There is the benefit that no matter what happens I always have somewhere to sit. However, there are plenty more problems to replace that one! :
- Any time I want to use a train, I have to tell the station 24 hours in advance
- This by no means guarantees that the booked assistance will arrive. I now phone ahead to the station I'm going to an hour and half an hour before I get in to make sure they come to get me. Even if I can get myself and my wheelchair off the train without a ramp I generally can't make it all the way down a long platform under my own steam.
- I've had mobility assistance personnel forget about me, attempt to wheel me and the ramp simultaneously nearly pushing me off the edge of a platform, call me 'the wheelchair', dislocate my wrist by starting to push my chair when I'm already pushing, yadayadyada
- I can't get to my closest bus stop under my own steam because the pavement is so cracked and cambered
- I've found that 1 in 3 buses will be successful for me - 1 won't stop or the driver will say the ramp is broken / they have a bad back / there's a pram in it, 1 won't be accessible and 1 will let me on
- Particularly the route running to the hospital that most of my treatment is based out of never runs an accessible bus. I think this is because they are smaller and the roads are small are tight cornered, but the whys don't really matter when they have the same effect. Legally they'll have to solve it by 2015 anyway. In theory.
- Some local bus stops are too small for the bus to actually pull in to the pavement because there are cars parked at each end - this means the bus is too high from the ground for the ramp to work
- Some local buses have a kind of passageway through to the wheelie space, which is too narrow for my standard sized wheelchair to fit through
- On trains without a wheelchair space I just kinda have to sit by the doors. On a busy service this is really scary when a wave of people just rushes at you. Also, I'm at crotch/bum height to some and armpit height to others. Joy.
- I have had people remove to move luggage from the wheelie space (I know the luggage racks are small, but if you brought 2 smaller bags rather than 1 big one it would fit in the overhead rack / under your seat / on your lap). I have had people hem me in with luggage so I couldn't use the toilet for an entire journey. For that matter, the toilets are not accessible for me without assistance.
- There are normally 1 or 2 wheelchair spaces on a train. If they're booked you have to change your plans. If the standard class space is booked but the first class is not, you can't use the first class space without a first class ticket.
I'm sure I've forgotten some.
As well as this, being out in public as a wheelchair user can be quite scary. I've been shouted at and had stuff thrown at me, and it's a year since I've been using a chair at all - 6 months since I've been using it regularly.
For that matter, taxis are rubbish too sometimes, but that's not the point of today. They are the only way that I can leave the house independently at the moment. I'm learning to drive so that I can have some more independence, and not have to rely on taxis which are expensive and unreliable. Ideally I would be able to have my car for some things and use public transport for the rest - I don't want to be reliant on a car - but that own't be possible at the moment. It's too unpredictable, and as someone with chronic fatigue and chronic pain, I can't be as flexible (pun intended) about things like how long I'm out of the house as other people.
Small improvements will be helpful, but not helpful enough. Because my home isn't level access I couldn't store a powerchair or mobility scooter. It's this compound inaccessibility that is really disabling. Getting to an inaccessible bus from an inaccessible home on inaccessible pavement going to an inaccessible workplace. Without the support of my partner to help me use public transport, or money from my parents that allows me to use taxis sometimes (although my activities are very limited by my taxi budget) I wouldn't be able to leave the house at all.
Starting with when I was a wobbly walker rather than a wheelie :
- 'perching' benches that don't let you take your weight off your feet were no good for me
- buses with steps = ouch + trip hazard
- bus drivers almost never wait for people to sit down before pulling off (the number of falls this caused me I can't even count)
- this is compounded by wet and slippery floors (maybe can't be helped, but is still an access problem)
- the priority seats fill up first because they're closest to the door, and you'd be astounded at the effort people go to to avoid eye contact when they're sitting in them. People will point blank ignore requests, or simply refuse to move even when they've said that they don't need the seat
- that's if you can even get to the priority seats through the crowd of people standing (I used to leave early for uni to avoid rush hour)
- the number of times I was shouted at, sworn at, threatened, even physically assaulted on one occassion for not 'giving up my seat for someone who needs it' (can't possibly be disabled at 20) would make you disbelieve my earlier point!
- bus drivers here only stop if you've got up an are standing by the door. Ringing the bell isn't enough. Even when there are posters in the bus saying 'stay in your seat until the bus has stopped'
- you have to get to and from the bus stop. This is a problem of joined up design. For example, my local hospital is up hill, about 150m from the nearest bus stop, when a lot of the patient group are likely to use public transport (and the tiny car park makes it the only sensible option) and those going to a hospital are more likely than other destinations to have mobility impairments.
And that's just buses! Other forms have similar issues, but some extra...
- train stations an underground stations often feature stairs quite heavily
- mobility assistance needs to be booked 24 hours in advance, and requires being able to climb into the blue buggies
- underground stations are ridiculously hot and crowded, which as someone who faints frequently makes them no go areas
- when platforms are not put up on the departure board until 5 minutes before departure, or there are last minute platform changes, this is very problematic - I was once knocked over and stood on during a last minute platform change on my journey to a placement
- equally when long distance trains turn off reservations because the train is busy or whatever, this means that those who need a chair are often not able to find one. If you can find a member of staff then they can help, but when corridors are crammed full or they're far away this just isn't possible. One journey I ended up sitting in the luggage rack. Another (particularly memorable) journey was spent sitting on the floor of the toilet.
Since being a wheelie, I face many of the same issues. There is the benefit that no matter what happens I always have somewhere to sit. However, there are plenty more problems to replace that one! :
- Any time I want to use a train, I have to tell the station 24 hours in advance
- This by no means guarantees that the booked assistance will arrive. I now phone ahead to the station I'm going to an hour and half an hour before I get in to make sure they come to get me. Even if I can get myself and my wheelchair off the train without a ramp I generally can't make it all the way down a long platform under my own steam.
- I've had mobility assistance personnel forget about me, attempt to wheel me and the ramp simultaneously nearly pushing me off the edge of a platform, call me 'the wheelchair', dislocate my wrist by starting to push my chair when I'm already pushing, yadayadyada
- I can't get to my closest bus stop under my own steam because the pavement is so cracked and cambered
- I've found that 1 in 3 buses will be successful for me - 1 won't stop or the driver will say the ramp is broken / they have a bad back / there's a pram in it, 1 won't be accessible and 1 will let me on
- Particularly the route running to the hospital that most of my treatment is based out of never runs an accessible bus. I think this is because they are smaller and the roads are small are tight cornered, but the whys don't really matter when they have the same effect. Legally they'll have to solve it by 2015 anyway. In theory.
- Some local bus stops are too small for the bus to actually pull in to the pavement because there are cars parked at each end - this means the bus is too high from the ground for the ramp to work
- Some local buses have a kind of passageway through to the wheelie space, which is too narrow for my standard sized wheelchair to fit through
- On trains without a wheelchair space I just kinda have to sit by the doors. On a busy service this is really scary when a wave of people just rushes at you. Also, I'm at crotch/bum height to some and armpit height to others. Joy.
- I have had people remove to move luggage from the wheelie space (I know the luggage racks are small, but if you brought 2 smaller bags rather than 1 big one it would fit in the overhead rack / under your seat / on your lap). I have had people hem me in with luggage so I couldn't use the toilet for an entire journey. For that matter, the toilets are not accessible for me without assistance.
- There are normally 1 or 2 wheelchair spaces on a train. If they're booked you have to change your plans. If the standard class space is booked but the first class is not, you can't use the first class space without a first class ticket.
I'm sure I've forgotten some.
As well as this, being out in public as a wheelchair user can be quite scary. I've been shouted at and had stuff thrown at me, and it's a year since I've been using a chair at all - 6 months since I've been using it regularly.
For that matter, taxis are rubbish too sometimes, but that's not the point of today. They are the only way that I can leave the house independently at the moment. I'm learning to drive so that I can have some more independence, and not have to rely on taxis which are expensive and unreliable. Ideally I would be able to have my car for some things and use public transport for the rest - I don't want to be reliant on a car - but that own't be possible at the moment. It's too unpredictable, and as someone with chronic fatigue and chronic pain, I can't be as flexible (pun intended) about things like how long I'm out of the house as other people.
Small improvements will be helpful, but not helpful enough. Because my home isn't level access I couldn't store a powerchair or mobility scooter. It's this compound inaccessibility that is really disabling. Getting to an inaccessible bus from an inaccessible home on inaccessible pavement going to an inaccessible workplace. Without the support of my partner to help me use public transport, or money from my parents that allows me to use taxis sometimes (although my activities are very limited by my taxi budget) I wouldn't be able to leave the house at all.
Wednesday, 29 February 2012
Rare Disease Day
It's the 5th international Rare Disease Day today. This year's theme is Solidarity.
I don't have anything particularly groundbreaking to say, but I'd like to write a bit about what it feels like to have a rare disease and why solidarity has been so important to me in my bendy journey.
Please also read BendyGirl's post on it here.
I'd like to start by saying that I am one of the lucky ones.
My condition is relatively common - I'm not one of seven people in the world with it, it's not a never-before-seen syndrome without a name, about half of doctors I mention it to show at least a brief flicker of recognition, there are national support groups for the different aspects of my condition, there are specialists who dedicate a large portion of their working life to the management of bendies. And, diagnoses are increasingly common as awareness increases - it's certainly more common than it was thought 10 years ago, although it's still rare. I have two friends with the same condition that I knew before I was diagnosed and many more since.
I am also lucky because my condition is sort-of not life-limiting. 'Sort-of' because it is sometimes. Other subtypes have a worse prognosis, indeed my subtype is commonly said not to be life-limiting at all, but you don't have to spend long in the online EDS community to know better.
For me (and everyone's experience will of course be different) having a rare disease means being disbelieved, means frustration, isolation, exhaustion and endless reams of paperwork. It means days when all the rubbish surrounding EDS is almost worse than the symptoms themselves. It means sharing my personal medical details with every medic who asks in the hope that they'll recognise EDS in someone else. It means constantly finding that bits and bobs of your life are 'not normal' "what do you mean you can't scratch the whole of your own back?". It means setting firm boundaries - with friends and family, with healthcare professionals, with work, with myself. It means constant self-advocacy.
It also means community - other bendies, other folk living with rare conditions, other disabled people. Other people who can say that most powerful phrase "me too". It means being able to draw on collective wisdom and to share tips in turn. It means finding out which friends will come and sit in front of the TV with me while I slur at them incoherently, or to scrape me of the floor if I fall and Beanie's out, or remember when I have important appointments, or celebrate the small acheivements, or advocate for me when I just can't anymore, or offer a shove without being asked and then take off at a run cackling maniacally, or remind me that it is enough simply to be me.
It means identifying as disabled and solidarity with other disabled people in the face of discrimination and cuts to benefits and services or lack of provision in the first place. It means recognising the intersection of non-privileged identities and solidarity with other people who face discrimation, violence and oppression because of their race, gender, sex, sexuality, class, or other factors.
It means feeling really, really alone and then realising that you aren't so alone after all.
I don't have anything particularly groundbreaking to say, but I'd like to write a bit about what it feels like to have a rare disease and why solidarity has been so important to me in my bendy journey.
Please also read BendyGirl's post on it here.
I'd like to start by saying that I am one of the lucky ones.
My condition is relatively common - I'm not one of seven people in the world with it, it's not a never-before-seen syndrome without a name, about half of doctors I mention it to show at least a brief flicker of recognition, there are national support groups for the different aspects of my condition, there are specialists who dedicate a large portion of their working life to the management of bendies. And, diagnoses are increasingly common as awareness increases - it's certainly more common than it was thought 10 years ago, although it's still rare. I have two friends with the same condition that I knew before I was diagnosed and many more since.
I am also lucky because my condition is sort-of not life-limiting. 'Sort-of' because it is sometimes. Other subtypes have a worse prognosis, indeed my subtype is commonly said not to be life-limiting at all, but you don't have to spend long in the online EDS community to know better.
For me (and everyone's experience will of course be different) having a rare disease means being disbelieved, means frustration, isolation, exhaustion and endless reams of paperwork. It means days when all the rubbish surrounding EDS is almost worse than the symptoms themselves. It means sharing my personal medical details with every medic who asks in the hope that they'll recognise EDS in someone else. It means constantly finding that bits and bobs of your life are 'not normal' "what do you mean you can't scratch the whole of your own back?". It means setting firm boundaries - with friends and family, with healthcare professionals, with work, with myself. It means constant self-advocacy.
It also means community - other bendies, other folk living with rare conditions, other disabled people. Other people who can say that most powerful phrase "me too". It means being able to draw on collective wisdom and to share tips in turn. It means finding out which friends will come and sit in front of the TV with me while I slur at them incoherently, or to scrape me of the floor if I fall and Beanie's out, or remember when I have important appointments, or celebrate the small acheivements, or advocate for me when I just can't anymore, or offer a shove without being asked and then take off at a run cackling maniacally, or remind me that it is enough simply to be me.
It means identifying as disabled and solidarity with other disabled people in the face of discrimination and cuts to benefits and services or lack of provision in the first place. It means recognising the intersection of non-privileged identities and solidarity with other people who face discrimation, violence and oppression because of their race, gender, sex, sexuality, class, or other factors.
It means feeling really, really alone and then realising that you aren't so alone after all.
Tuesday, 21 February 2012
Pacing, Guilt and Self Compassion
This is one of those blog posts that started as a comment but got too long! Before you read this, please head over to Everyday Wishes and read Jo's post on pacing, which is great. Jo writes really interesting posts about living (versus surviving) life with chronic illness so have a click around while you're there =]
I think one thing about pacing folk don't talk about a lot is how spoon sucking guilt is. Pacing can cause guilt for so many reasons. The worst for me is when someone else has to pick up the slack when I don't do something - e.g. I don't do the washing up so Beanie has to do it. I worry a lot about the environmental impact of driving (or being driven) everywhere, of pre-prepared food, of all the packaging my meds come in. I hate hate hate it when people think that I'm lazy.
This guilt has got a lot easier to deal with. If I'm honest the biggest part of this acceptance was external validation. It is a lot easier for me to assert my boundaries with friends/family now 1) they know that I'm sick 2) that diagnosis has given me a framework for understanding my body, which means that I can explain that I need to save spoons, rather than just saying "I'm tired".
That's not to say it's not still hard. It will be a lot easier to pace guilt free next year when Beanie is working and we can afford a cleaner, for example.
Also, part of the privilege of having a visible impairment* is that strangers question me a lot less. If the guy delivering my supermarket shop sees me in my chair he isn't annoyed that I've asked him to bring heavy shopping upstairs to my flat.
External recognition has been incredibly helpful, but I am also learning to respect and assert my needs, and my wants.
It has meant coming to a new understanding of my body. I have lived in boom/bust since certainly my early teens and my way of coping until recently had been to budget 'bust time'** - for example a weekend away would take a couple of weeks to recover from so those two weeks of only getting up for lectures/placement would just be the price. Every couple of years I would have a breakdown, scrape through academically, pick up the pieces and start again. This cycle was making me sick, was ruining my career before it'd even started and was putting enormous pressure on my relationships because I was so unreliable.
It was never going to be sustainable. I am now aware that if I'm ever going to be a doctor I am going to need to be very careful with my energy. I am also aware that medicine is not worth all my energy. If it ever gets to the point where the day-to-day of medicine leaves me with no energy to enjoy my family and friends, no energy for creativity or grappling with big and important ideas, then I have to stop. No matter what anyone says, you can't be a good doctor that way.
(Sadly, I'm also aware that next year a lot of this wil have to go out of the window, but for a few months I can deal with studying and recovering from studying being it if that means I graduate. Although I have to say that I'm dreading it more than a little.)
Pacing teaches me to respect that creative and spiritual expression are access needs and priorities if I am to be healthy. It teaches me to be patient and mindful. It has encouraged me to try and make our home a beautiful, welcoming and peaceful space because I spend a lot of time here (remember Cousin Helen from What Katy Did?).
This self-respect in term has fed and been fed by my political understanding of disablement. Pacing teaches me to respect myself as a person beyond capitalist understandings of productivity and efficiency. My worth is not based on money. I have intrinsic value as a person. As a person I deserve love and respect, and therefore everyone I meet deserves the same.
But because life is never simple...
Sometimes I have 'meta guilt' about feeling guilty for pacing because it doesn't fit with my understanding of disablement. I feel guilty that I can afford to pace in this way, because I have the money to (although I equally recognise that I can't afford not to). Still when pacing starts to work and I feel a bit better, I decide that I'm being overdramatic, ease up, and crash. I let people who don't take my condition seriously make me believe that I'm being lazy and should do more. I have to be mindful not to completely give up any responsibility for housework etc, even if I can only do teeny tiny bits. Sometimes I feel left out or lonely, sometimes I get bored, sometimes I get frustrated. Often I get angry when people say stupid things like "oh, I wish I could take it easy like you do, I just have to be all go, go, go or I get bored".
It's baby steps I think.
Pacing means making lots of little decisions every day and then letting them go. Sometimes you'll make the wrong decision, you'll learn from it and move on. Sometimes you'll be in a position where making the wrong decision in terms of pacing is the right thing to do. Making the decisions gets easier, living with the decisions get easier, resting get easier, downscaling activities gets easier. And for me, the effort is totally worth it.
*I recognise the really complex interaction of relative non/privilege being those with in/visible impairments, this is not me saying that visible impairments always make life easier
**I recognise the pun. As to whether or not it was intentional, I couldn't possibly comment ;)
I think one thing about pacing folk don't talk about a lot is how spoon sucking guilt is. Pacing can cause guilt for so many reasons. The worst for me is when someone else has to pick up the slack when I don't do something - e.g. I don't do the washing up so Beanie has to do it. I worry a lot about the environmental impact of driving (or being driven) everywhere, of pre-prepared food, of all the packaging my meds come in. I hate hate hate it when people think that I'm lazy.
This guilt has got a lot easier to deal with. If I'm honest the biggest part of this acceptance was external validation. It is a lot easier for me to assert my boundaries with friends/family now 1) they know that I'm sick 2) that diagnosis has given me a framework for understanding my body, which means that I can explain that I need to save spoons, rather than just saying "I'm tired".
That's not to say it's not still hard. It will be a lot easier to pace guilt free next year when Beanie is working and we can afford a cleaner, for example.
Also, part of the privilege of having a visible impairment* is that strangers question me a lot less. If the guy delivering my supermarket shop sees me in my chair he isn't annoyed that I've asked him to bring heavy shopping upstairs to my flat.
External recognition has been incredibly helpful, but I am also learning to respect and assert my needs, and my wants.
It has meant coming to a new understanding of my body. I have lived in boom/bust since certainly my early teens and my way of coping until recently had been to budget 'bust time'** - for example a weekend away would take a couple of weeks to recover from so those two weeks of only getting up for lectures/placement would just be the price. Every couple of years I would have a breakdown, scrape through academically, pick up the pieces and start again. This cycle was making me sick, was ruining my career before it'd even started and was putting enormous pressure on my relationships because I was so unreliable.
It was never going to be sustainable. I am now aware that if I'm ever going to be a doctor I am going to need to be very careful with my energy. I am also aware that medicine is not worth all my energy. If it ever gets to the point where the day-to-day of medicine leaves me with no energy to enjoy my family and friends, no energy for creativity or grappling with big and important ideas, then I have to stop. No matter what anyone says, you can't be a good doctor that way.
(Sadly, I'm also aware that next year a lot of this wil have to go out of the window, but for a few months I can deal with studying and recovering from studying being it if that means I graduate. Although I have to say that I'm dreading it more than a little.)
Pacing teaches me to respect that creative and spiritual expression are access needs and priorities if I am to be healthy. It teaches me to be patient and mindful. It has encouraged me to try and make our home a beautiful, welcoming and peaceful space because I spend a lot of time here (remember Cousin Helen from What Katy Did?).
This self-respect in term has fed and been fed by my political understanding of disablement. Pacing teaches me to respect myself as a person beyond capitalist understandings of productivity and efficiency. My worth is not based on money. I have intrinsic value as a person. As a person I deserve love and respect, and therefore everyone I meet deserves the same.
But because life is never simple...
Sometimes I have 'meta guilt' about feeling guilty for pacing because it doesn't fit with my understanding of disablement. I feel guilty that I can afford to pace in this way, because I have the money to (although I equally recognise that I can't afford not to). Still when pacing starts to work and I feel a bit better, I decide that I'm being overdramatic, ease up, and crash. I let people who don't take my condition seriously make me believe that I'm being lazy and should do more. I have to be mindful not to completely give up any responsibility for housework etc, even if I can only do teeny tiny bits. Sometimes I feel left out or lonely, sometimes I get bored, sometimes I get frustrated. Often I get angry when people say stupid things like "oh, I wish I could take it easy like you do, I just have to be all go, go, go or I get bored".
It's baby steps I think.
Pacing means making lots of little decisions every day and then letting them go. Sometimes you'll make the wrong decision, you'll learn from it and move on. Sometimes you'll be in a position where making the wrong decision in terms of pacing is the right thing to do. Making the decisions gets easier, living with the decisions get easier, resting get easier, downscaling activities gets easier. And for me, the effort is totally worth it.
*I recognise the really complex interaction of relative non/privilege being those with in/visible impairments, this is not me saying that visible impairments always make life easier
**I recognise the pun. As to whether or not it was intentional, I couldn't possibly comment ;)
Tuesday, 31 January 2012
31st January
Today last year I got my official bendy diagnosis.
It was awful.
Not the diagnosis part. Finally having a name to put to the symptoms, being able to make some sense of them, that part was incredible - but that part had happened 8 months before thanks to a chance comment by a friend about her sister.
This time last year my suspicions were confirmed by a rather unpleasant rheumatologist who abandoned me into a new life with no information or follow-up.
Luckily the wonderful folk at the HMSA forum were there to answer all my questions and help me pick up the pieces.
Today we have thoroughly reclaimed the date 31st January in our household. It shall henceforth be remembered as the day Beanie's wedding dress arrived, and (this just in folks) the day I passed my driving theory test.
Hooray!
It was awful.
Not the diagnosis part. Finally having a name to put to the symptoms, being able to make some sense of them, that part was incredible - but that part had happened 8 months before thanks to a chance comment by a friend about her sister.
This time last year my suspicions were confirmed by a rather unpleasant rheumatologist who abandoned me into a new life with no information or follow-up.
Luckily the wonderful folk at the HMSA forum were there to answer all my questions and help me pick up the pieces.
Today we have thoroughly reclaimed the date 31st January in our household. It shall henceforth be remembered as the day Beanie's wedding dress arrived, and (this just in folks) the day I passed my driving theory test.
Hooray!
Breakthrough
Again, catharsis and too-early morning ramblings. Feel free to skip.
Dear GP,
It's 5.25 am. I got up to take painkillers at 5. Pain woke me up at 3.30. I'd been counting down the minutes to my last dose at midnight so I wasn't expecting to get much sleep. I held off taking the dose this morning until I had to, because a dose this early means I have to skip one of my normal daily doses and I have my theory test later on.
This is what I mean when I say my pain meds aren't adequate. I'm not looking for all of my pain to go away and I know I need to find balance between pain management and being able to function in a non-zombie fashion. I resent it when you tell me to try non-pharmacological options because that silences and devalues all of the work I have done over the years to manage my own pain non-pharmacologically. All of the work I continue to put in.
Most of the time I don't know what's breakthrough pain and what's just unmanaged chronic pain. The tramadol/paracetamol/amitriptyline keep it manageable on the good days. Most days it doesn't touch it. In your opiates are sedating 'splaining you forget just how bloody distracting and soul sucking pain is. I know you find it hard to believe because the one time you took a 30/500 cocodamol you got really drowsy, but there it is. I can't concentrate when every joint in my body is screaming.
It's 5.30 am. The left side of my body is in spasm from the sacroiliac down. I have nothing to ease the spasm, despite asking, nothing to add in to my normal meds to ease the pain of four major joints all forced into partial dislocation by angry, knotty muscles.
When you don't treat my pain, you make me feel like a liar, you make me feel like you don't care, you make me feel like someone who isn't worth taking the time to treat and then by extension you make me feel like someone who deserves to be in pain.
I don't know how I let you inside my head enough that you are able to make me feel like I'm someone who deserves to be in pain that doesn't really exist. You make me doubt my own senses.
Do you know how many times after our appointments I've had to stop taking all my medications, to get the full burning picture of pain back just to prove to myself that I wasn't making it up?
The thing that scares and confuses me most is that if you were sitting here in front of me I wouldn't be able to tell you this. I would ask for something for the breakthrough pain, you would refuse (I'm on plenty of opiates for someone of 24 you would say, you don't want me to be really sleepy and zombied tomorrow, I need to learn to cope with pain and not be reliant on painkillers, I'm lucky really because I don't have rhumatoid arthritis and have I given any more thought to taking that herbal remedy that's an unproven treatment for a disease I don't have?) and I would cry. I would beg. You would tell me that I really should stop taking the tramadol regularly, because you're obviously building up tolerance so of course it won't help.
Beanie would try to fight my corner for me, but because she's a medical student, she's obviously doing it to be a know-it-all, not because she's the one who holds me and strokes my hair, sings to me, distracts me, loves me when the pain is unbearable.
And anyway, because this is the truly relevant question, how's my mood? I say that it's fine, that I'm not in pain because of depression, that I was very depressed for a very long time but I'm not anymore. You will tell me, with no apparent understanding of the irony, that chronic pain can cause depression, y'know. I will not shout you're telling me my pain is all in my head but that the pain is causing the pain to all be in my head, while refusing to treat the pain or the serious psychological pathology that you are claiming is the thing causing my life to fall apart?
Nor will I shout when I *was* depressed you treated me like I was making it up, like I wasn't worth wasting time on and therefore like I deserved to be depressed. Sound familiar?
Nope. Once again I would just get the message that I am a liar who deserves to be in pain.
That is too messed up. What's the point of practising assertiveness when that's not even the problem? When it's just that I'm dealing with "health" professionals who make me feel like I'm not worth self-advocating for? How did this situation end up in such an awful mess?
I'm so scared that this experience is going to poison every GP relationship I ever have. Logically I know that there are good doctors out there. I know some of them. But pretty much every doctor-patient relationship I've had has been so screwed up that I can't trust that it will ever be better. I'm so worried that the new GP will see my old notes, with lacklustre descriptions of a young woman with a mental health history, chronic fatigue and chronic pain, and just draw the same conclusions as you have obviously drawn about me.
You know what I should say? I am worth fighting for. I will not let you devalue my experiences and my work in caring for my own body. I will not let you devalue the experiences and caring work of Beanie and other family and friends. I will not let you make me doubt myself or my body anymore.
Flo
Dear GP,
It's 5.25 am. I got up to take painkillers at 5. Pain woke me up at 3.30. I'd been counting down the minutes to my last dose at midnight so I wasn't expecting to get much sleep. I held off taking the dose this morning until I had to, because a dose this early means I have to skip one of my normal daily doses and I have my theory test later on.
This is what I mean when I say my pain meds aren't adequate. I'm not looking for all of my pain to go away and I know I need to find balance between pain management and being able to function in a non-zombie fashion. I resent it when you tell me to try non-pharmacological options because that silences and devalues all of the work I have done over the years to manage my own pain non-pharmacologically. All of the work I continue to put in.
Most of the time I don't know what's breakthrough pain and what's just unmanaged chronic pain. The tramadol/paracetamol/amitriptyline keep it manageable on the good days. Most days it doesn't touch it. In your opiates are sedating 'splaining you forget just how bloody distracting and soul sucking pain is. I know you find it hard to believe because the one time you took a 30/500 cocodamol you got really drowsy, but there it is. I can't concentrate when every joint in my body is screaming.
It's 5.30 am. The left side of my body is in spasm from the sacroiliac down. I have nothing to ease the spasm, despite asking, nothing to add in to my normal meds to ease the pain of four major joints all forced into partial dislocation by angry, knotty muscles.
When you don't treat my pain, you make me feel like a liar, you make me feel like you don't care, you make me feel like someone who isn't worth taking the time to treat and then by extension you make me feel like someone who deserves to be in pain.
I don't know how I let you inside my head enough that you are able to make me feel like I'm someone who deserves to be in pain that doesn't really exist. You make me doubt my own senses.
Do you know how many times after our appointments I've had to stop taking all my medications, to get the full burning picture of pain back just to prove to myself that I wasn't making it up?
The thing that scares and confuses me most is that if you were sitting here in front of me I wouldn't be able to tell you this. I would ask for something for the breakthrough pain, you would refuse (I'm on plenty of opiates for someone of 24 you would say, you don't want me to be really sleepy and zombied tomorrow, I need to learn to cope with pain and not be reliant on painkillers, I'm lucky really because I don't have rhumatoid arthritis and have I given any more thought to taking that herbal remedy that's an unproven treatment for a disease I don't have?) and I would cry. I would beg. You would tell me that I really should stop taking the tramadol regularly, because you're obviously building up tolerance so of course it won't help.
Beanie would try to fight my corner for me, but because she's a medical student, she's obviously doing it to be a know-it-all, not because she's the one who holds me and strokes my hair, sings to me, distracts me, loves me when the pain is unbearable.
And anyway, because this is the truly relevant question, how's my mood? I say that it's fine, that I'm not in pain because of depression, that I was very depressed for a very long time but I'm not anymore. You will tell me, with no apparent understanding of the irony, that chronic pain can cause depression, y'know. I will not shout you're telling me my pain is all in my head but that the pain is causing the pain to all be in my head, while refusing to treat the pain or the serious psychological pathology that you are claiming is the thing causing my life to fall apart?
Nor will I shout when I *was* depressed you treated me like I was making it up, like I wasn't worth wasting time on and therefore like I deserved to be depressed. Sound familiar?
Nope. Once again I would just get the message that I am a liar who deserves to be in pain.
That is too messed up. What's the point of practising assertiveness when that's not even the problem? When it's just that I'm dealing with "health" professionals who make me feel like I'm not worth self-advocating for? How did this situation end up in such an awful mess?
I'm so scared that this experience is going to poison every GP relationship I ever have. Logically I know that there are good doctors out there. I know some of them. But pretty much every doctor-patient relationship I've had has been so screwed up that I can't trust that it will ever be better. I'm so worried that the new GP will see my old notes, with lacklustre descriptions of a young woman with a mental health history, chronic fatigue and chronic pain, and just draw the same conclusions as you have obviously drawn about me.
You know what I should say? I am worth fighting for. I will not let you devalue my experiences and my work in caring for my own body. I will not let you devalue the experiences and caring work of Beanie and other family and friends. I will not let you make me doubt myself or my body anymore.
Flo
Sunday, 29 January 2012
In which I terrify a (relatively) junior doctor
Where was I? Oh yes, that's right, GP appointment on Friday.
I know that you all find the ins and outs of my healthcare endlessly fascinating - this is mainly for catharsis and memory prompting, so feel free to skip it.
Twas a doctor I'd not met before - either a locum or a trainee, who seemed very young. I would place her at GPST1 (3rd year out of med school), although I wouldn't have been surprised if she was even an FY2. Anyway, she was young.
My two aims for the appointment were to :
- give some excerpts from my DLA form (walking, falling, cooking, washing and 'day in the life') and ask someone to write a report to submit as evidence
- get my meds put on repeat (besides my inhalers, thyroxine is all that's on my repeats list and I haven't taken that in 5 years or so)*
Neither of these is something I would have chosen to take to a GP I've never met before, but the way that the surgery is set up now it's almost impossible to get an appoitnment, let alone an appointment with someone you've met before. Not that I really want to see the regular one anyway. Yes this is one of the ever increasing list of reasons that I am on the market for a new GP.
So, I told her that I was applying for DLA and that I'd brought some information about my day-to-day for whoever would fill in the form to use alongside my notes. She said she would give it to the doctor I normally see, I said that that seemed sensible and went to move on to point number 2.
She then said "so why are you applying for DLA?". I was a bit confused, so kind of stuttered "err...mobility, care...err" *gestures to the wheelchair*. Then said that I have HMS, caused by EDS - not a flicker of recognition. Great.
And no go on the repeats. They don't want to put tramadol on repeat because they like to keep an eye on folk on strong painkillers. I said this would be fine if anyone had ever 'kept an eye' on me, and if every doctor I had seen over the last year hadn't tried to stop it. Which is what happens when you have pain meds on acute prescriptions.
Then I said that I'm leaving anyway, because I'm sick of being treated like crap, not having my pain managed and seeing a different doctor every time I go.
For some reason she took this as a prompt to try and be the one to 'keep an eye' on my pain management. This involved at various points :
- "have you considered homeopathy?" (Want to guess what Beanie's response was?)
- "I don't think a pain management referral would help because they'll only be able to try stronger painkillers - tramadol's related to morphine you know"
- "we need to keep an eye on it because opiates are addictive"
Interspersed with me saying "there's no point anyway, I'm registering with a new GP when I have the report to go in with my DLA form" and her ignoring that and continuing to say things that showed her faiure to grasp :
1) basic principles of pain management and pharmacology
2) that someone who is only 24 / has a condition she'd never heard of could be in enough pain that the idea of 'something stronger than tramadol' wasn't completely ludicrous
3) that given the choice between being prescribed tramadol and not having the pain to start with, my decision would be fairly obvious
4) that I am a medical student (and therefore hadn't even glanced at my notes - it's clearly marked on there after I got frustrated with the last person to talk to me like I knew nothing about anything**)
And then just tucked in there at the very end as an afterthought :
- "What is it that hurts?"
*sigh*
I really want access to teach some of this stuff to medical students. Y'know - basic pain management, expert patients, chronic disease managment (not just acute management of patient's with chronic diseases, or tick box exercises that monitor only common things - depression / diabetes / hypertension etc). That added to my dream curriculum of disability awareness and how the social model of disability, medical model and biopsychosocial framework all have a place in healthcare. Not to mention some proper diversity and equality training - covering relationships with colleagues (the whole team - cleaners, managers, nurses, everyone) as well as patients. Oh, and some idea of how to navigate the healthcare system as a medic-patient. Especially parts of the system that remain clothed in a stigma that medical schools are making no real effort to disperse. Telling medical students who have mental health problems that they shouldn't feel ashamed is not a solution. Removing the institutional prejudice against them is.
Well. It was nice to get that off my head. (For the life of me I can't work out what's wrong with that last sentence... oh well)
* It gets irritating to order the 18 pills I take a day, plus liquid medicine and cream, every month especially because they always manage to forget to prescribe a least one thing. Not to mention the 3 meds I continue to buy OTC because they refuse to prescribe them (have discussed all with pharmacist who has said they're alright to use as I am).
** Admittedly taking the 'I'm a medical student' shortcut is taking a privileged wiggle out of doing some expert patient / patients have a right to make informed decisions about their own health - so you should make sure they actually understand rather than fobbing them/us off with lacklustre 'jargon free' nonsense non-explanations like 'young women your age do faint a lot' - based advocacy. I wish I always had those spoons.
I know that you all find the ins and outs of my healthcare endlessly fascinating - this is mainly for catharsis and memory prompting, so feel free to skip it.
Twas a doctor I'd not met before - either a locum or a trainee, who seemed very young. I would place her at GPST1 (3rd year out of med school), although I wouldn't have been surprised if she was even an FY2. Anyway, she was young.
My two aims for the appointment were to :
- give some excerpts from my DLA form (walking, falling, cooking, washing and 'day in the life') and ask someone to write a report to submit as evidence
- get my meds put on repeat (besides my inhalers, thyroxine is all that's on my repeats list and I haven't taken that in 5 years or so)*
Neither of these is something I would have chosen to take to a GP I've never met before, but the way that the surgery is set up now it's almost impossible to get an appoitnment, let alone an appointment with someone you've met before. Not that I really want to see the regular one anyway. Yes this is one of the ever increasing list of reasons that I am on the market for a new GP.
So, I told her that I was applying for DLA and that I'd brought some information about my day-to-day for whoever would fill in the form to use alongside my notes. She said she would give it to the doctor I normally see, I said that that seemed sensible and went to move on to point number 2.
She then said "so why are you applying for DLA?". I was a bit confused, so kind of stuttered "err...mobility, care...err" *gestures to the wheelchair*. Then said that I have HMS, caused by EDS - not a flicker of recognition. Great.
And no go on the repeats. They don't want to put tramadol on repeat because they like to keep an eye on folk on strong painkillers. I said this would be fine if anyone had ever 'kept an eye' on me, and if every doctor I had seen over the last year hadn't tried to stop it. Which is what happens when you have pain meds on acute prescriptions.
Then I said that I'm leaving anyway, because I'm sick of being treated like crap, not having my pain managed and seeing a different doctor every time I go.
For some reason she took this as a prompt to try and be the one to 'keep an eye' on my pain management. This involved at various points :
- "have you considered homeopathy?" (Want to guess what Beanie's response was?)
- "I don't think a pain management referral would help because they'll only be able to try stronger painkillers - tramadol's related to morphine you know"
- "we need to keep an eye on it because opiates are addictive"
Interspersed with me saying "there's no point anyway, I'm registering with a new GP when I have the report to go in with my DLA form" and her ignoring that and continuing to say things that showed her faiure to grasp :
1) basic principles of pain management and pharmacology
2) that someone who is only 24 / has a condition she'd never heard of could be in enough pain that the idea of 'something stronger than tramadol' wasn't completely ludicrous
3) that given the choice between being prescribed tramadol and not having the pain to start with, my decision would be fairly obvious
4) that I am a medical student (and therefore hadn't even glanced at my notes - it's clearly marked on there after I got frustrated with the last person to talk to me like I knew nothing about anything**)
And then just tucked in there at the very end as an afterthought :
- "What is it that hurts?"
*sigh*
I really want access to teach some of this stuff to medical students. Y'know - basic pain management, expert patients, chronic disease managment (not just acute management of patient's with chronic diseases, or tick box exercises that monitor only common things - depression / diabetes / hypertension etc). That added to my dream curriculum of disability awareness and how the social model of disability, medical model and biopsychosocial framework all have a place in healthcare. Not to mention some proper diversity and equality training - covering relationships with colleagues (the whole team - cleaners, managers, nurses, everyone) as well as patients. Oh, and some idea of how to navigate the healthcare system as a medic-patient. Especially parts of the system that remain clothed in a stigma that medical schools are making no real effort to disperse. Telling medical students who have mental health problems that they shouldn't feel ashamed is not a solution. Removing the institutional prejudice against them is.
Well. It was nice to get that off my head. (For the life of me I can't work out what's wrong with that last sentence... oh well)
* It gets irritating to order the 18 pills I take a day, plus liquid medicine and cream, every month especially because they always manage to forget to prescribe a least one thing. Not to mention the 3 meds I continue to buy OTC because they refuse to prescribe them (have discussed all with pharmacist who has said they're alright to use as I am).
** Admittedly taking the 'I'm a medical student' shortcut is taking a privileged wiggle out of doing some expert patient / patients have a right to make informed decisions about their own health - so you should make sure they actually understand rather than fobbing them/us off with lacklustre 'jargon free' nonsense non-explanations like 'young women your age do faint a lot' - based advocacy. I wish I always had those spoons.
Monday, 23 January 2012
GP saga, installment the 5001st
Things seem a little less bleak. The to-do list remains long and complicated, but it doesn't feel impossible. So, 3 weeks of respite before the despair hits again.
I've made tremendous progress on the new GP front. Almost as much progress as I can have made without actually having a new GP.
My friend who lives near me and has the same condition likes her GP. I am in catchment for that GP and it was on my shortlist of GPs because 1) they have a website 2) you can order repeat scripts online 3) their 'about us' section is very cute, and they say lovely things about being a training practice and having med students 4) their website has access information for the practice, which most don't 5) it's one of the closest to where I live 6) there's ok parking
Unfortunately there's a but.
I phoned the surgery today to confirm what it says on the website, which is that if you're already registered with another GP in the local area, you have to meet with one of the partners to explain why you want to move, and they decide whether or not to take you on.
I'm hoping that explaining that being a patient with a chronic health condition who is essentially registered with a drop-in clinic which can't offer any continuity of care will be enough to convince them. The fact that even when I'm able to drive I won't be able to access that surgery independently (it's at the top of a pedestrianised hill) would be another good reason.
I don't want to push the fact that my quality of care has been so poor, because I know that it sometimes causes GPs to 'close ranks' a bit. If I have to I will though.
I suppose I also have the fact that I can't register at the very closest GP to my house because both the partners there once shouted at me in front of a waiting room for of people for poitely insisting that they refer a friend in crisis to the appropriate mental health services. The fact that said friend was soon after admitted for several weeks maybe proves that I wasn't being quite as unreasonable in my request as they made out.
Basically, I very much hope that this is good news. Fingers crossed =]
I've made tremendous progress on the new GP front. Almost as much progress as I can have made without actually having a new GP.
My friend who lives near me and has the same condition likes her GP. I am in catchment for that GP and it was on my shortlist of GPs because 1) they have a website 2) you can order repeat scripts online 3) their 'about us' section is very cute, and they say lovely things about being a training practice and having med students 4) their website has access information for the practice, which most don't 5) it's one of the closest to where I live 6) there's ok parking
Unfortunately there's a but.
I phoned the surgery today to confirm what it says on the website, which is that if you're already registered with another GP in the local area, you have to meet with one of the partners to explain why you want to move, and they decide whether or not to take you on.
I'm hoping that explaining that being a patient with a chronic health condition who is essentially registered with a drop-in clinic which can't offer any continuity of care will be enough to convince them. The fact that even when I'm able to drive I won't be able to access that surgery independently (it's at the top of a pedestrianised hill) would be another good reason.
I don't want to push the fact that my quality of care has been so poor, because I know that it sometimes causes GPs to 'close ranks' a bit. If I have to I will though.
I suppose I also have the fact that I can't register at the very closest GP to my house because both the partners there once shouted at me in front of a waiting room for of people for poitely insisting that they refer a friend in crisis to the appropriate mental health services. The fact that said friend was soon after admitted for several weeks maybe proves that I wasn't being quite as unreasonable in my request as they made out.
Basically, I very much hope that this is good news. Fingers crossed =]
Sunday, 4 December 2011
It's getting better all the time
This has been a good week in many ways. I have the new wheelchair, which is light and comfortable and supportive, I've had another driving lesson, which I enjoyed as much as the other two and I've made a bit more progress on my DLA form. I feel like I'm finally making progress back towards coping at med school when for so long I've been going in completely the other direction.
Progress looks different to how I'd imagined.
When I decided to take this year out I was still fixed in keepingoing mode. In my head I was getting up and going into placement every day, and the problem was that it was leaving me knackered, miserable and ill. The objective reality was very different. I've struggled with the timetable of clinical placements all the way through uni for various intersecting reasons, but this last year especially.
My attendance and learning were enough that I'd been signed off from placement (up until the last one which I don't think I would have) but I felt very much like I was just going through the motions. I was in the hospital for the least amount of time that I could get away with, and even though that meant I was getting a lot of studying done, my confidence around patients had gone. Indeed, until I started using the 'chair just before I left most time on the ward was little more than an exercise in staying upright/conscious.
I don't think you ever fully realise how bad something is when you're inside it. I had in my head that I would be fine once I'm working part-time. Now that I've got a realistic idea of just how little I can manage if I'm pacing to a consistent level I know that it's going to take a lot to get me back to uni in any kind of a healthy way. And it needs to be healthy. I will not sacrifice my health, or the safety of my patients, to hold onto a dream that's not meant to be.
It's going to take :
- help with my morning routine (for example dressing/brushing my hair, moving around because I'm more fainty/fall-y, making coffee/breakfast etc)
- a short commute in accessible buses that go pretty much door to door or a car and a parking permit that will mean that I can stay in a disabled bay all day (and not only for the 4 hours allowed by the private car park people)
- my wheelchair with adaptations to make it work friendly, such as a holder for an alcohol hand gel dispenser and somewhere to store tuffie wipes for my push rims, a trabasack (I'm getting once for Christmas!) for carrying things like mini sharps bins and needles/syringes etc, and a big sign that says
- a cool vest - wards are kept warm which makes my fainting and slurrydrunkyshakyjerky spells a lot worse plus compression stockings and a heart rate monitor
- reasonable adaptation to placement (such as my supervisor contacting me at least 2 weeks in advance of each month-long placement and providing a timetable, only being placed at hospitals within a short commute etc) which are enforced by the medical school
- being really assertive about my access needs, sticking to a routine, taking my meds etc
- and for studying purposes a laptop I can carry, with voice recognition software (this post has taken 9 hours over 2 days to write, as do most), and a chair/table configuration that works
Baby steps of progress are great. They are much better than going backwards. But to sort all of this out will need : a DLA application, social work assessment, application for NHS bursary, DSA assessment, passing my driving test and some hard dealings with the medical school (I think it's going to get to the point of reminding them of their obligations under the DDA via a lawyer...)
There's still so much to do, and it's all exhausting - and all this need to prove that there's something wrong makes me doubt myself over and over again.
At least now I have a realistic picture of what managing my own care is going to take.
Now I just need to eat this elephant (not really, poor elephants!) one nibble at a time...
Progress looks different to how I'd imagined.
When I decided to take this year out I was still fixed in keepingoing mode. In my head I was getting up and going into placement every day, and the problem was that it was leaving me knackered, miserable and ill. The objective reality was very different. I've struggled with the timetable of clinical placements all the way through uni for various intersecting reasons, but this last year especially.
My attendance and learning were enough that I'd been signed off from placement (up until the last one which I don't think I would have) but I felt very much like I was just going through the motions. I was in the hospital for the least amount of time that I could get away with, and even though that meant I was getting a lot of studying done, my confidence around patients had gone. Indeed, until I started using the 'chair just before I left most time on the ward was little more than an exercise in staying upright/conscious.
I don't think you ever fully realise how bad something is when you're inside it. I had in my head that I would be fine once I'm working part-time. Now that I've got a realistic idea of just how little I can manage if I'm pacing to a consistent level I know that it's going to take a lot to get me back to uni in any kind of a healthy way. And it needs to be healthy. I will not sacrifice my health, or the safety of my patients, to hold onto a dream that's not meant to be.
It's going to take :
- help with my morning routine (for example dressing/brushing my hair, moving around because I'm more fainty/fall-y, making coffee/breakfast etc)
- a short commute in accessible buses that go pretty much door to door or a car and a parking permit that will mean that I can stay in a disabled bay all day (and not only for the 4 hours allowed by the private car park people)
- my wheelchair with adaptations to make it work friendly, such as a holder for an alcohol hand gel dispenser and somewhere to store tuffie wipes for my push rims, a trabasack (I'm getting once for Christmas!) for carrying things like mini sharps bins and needles/syringes etc, and a big sign that says
- a cool vest - wards are kept warm which makes my fainting and slurrydrunkyshakyjerky spells a lot worse plus compression stockings and a heart rate monitor
- reasonable adaptation to placement (such as my supervisor contacting me at least 2 weeks in advance of each month-long placement and providing a timetable, only being placed at hospitals within a short commute etc) which are enforced by the medical school
- being really assertive about my access needs, sticking to a routine, taking my meds etc
- and for studying purposes a laptop I can carry, with voice recognition software (this post has taken 9 hours over 2 days to write, as do most), and a chair/table configuration that works
Baby steps of progress are great. They are much better than going backwards. But to sort all of this out will need : a DLA application, social work assessment, application for NHS bursary, DSA assessment, passing my driving test and some hard dealings with the medical school (I think it's going to get to the point of reminding them of their obligations under the DDA via a lawyer...)
There's still so much to do, and it's all exhausting - and all this need to prove that there's something wrong makes me doubt myself over and over again.
At least now I have a realistic picture of what managing my own care is going to take.
Now I just need to eat this elephant (not really, poor elephants!) one nibble at a time...
Friday, 2 December 2011
I will not be embarrassed anymore.
When bureaucrats ask me to outline my personal care needs in excruciating detail,
I will say : my partner helps me shower
And we enjoy it
- there have to be some perks, right?
If they find me 'not crippled'
I won't feel like a liar, because I know better.
I will not apologise for being an inconvenience
when I need a ramp to access public transport.
Even if I hadn't planned to travel 24 hours in advance.
Nor will I apologise when someone trips over me,
because they're not looking out for people at wheelie height
(I might apologise if I run over their feet. Unless they really deserve it)
When my speech is slurred and my brain is foggy,
or I need to lie flat to stop fainting
when I lock and pop with each step
like someone's cut a puppet's strings,
when I arrive on wheels with a stethoscope
I will wear a Tshirt that says
"keep staring, I might do a trick"
When I am working part-time,
and colleagues tell me I have it easy,
I will invite them to walk a mile on my knees
or wheel a mile on cambered, cracked pavement
and then report back.
I get to do FY1 and FY2 just like them,
(and FY3 and 4 and even 5
- whatever gets the hours done)
And when fellow 20-somethings
look scandalised by talk of prolapse, constipation
or 'little accidents'
falls, faints and full carrier bags from the pharmacy,
I will be thankful that my friends can see the funny side
and the not-funny side;
who get that honesty is vulnerable but silence is isolating.
Next time I'm on the train, and someone hems me in with suitcases
And says "just ask if you need to get out"
I will smile
"that's fine
- as long as you don't mind asking my permission before you go for a wee"
I will keep talking about the worst times of my life
because stigma and silence kills.
I will be assertive about my access needs at med school,
and take no nonsense from my GP.
I will keep shouting "it's a miracle!"
when people stare at the wheelie walking.
And when Beanie kisses the top of my head
when I'm wheeling down the street
I won't scan faces
wondering what people think of our relationship
from the outside.
I will just tip my head back
and smile.
Fuck narrowly defined normality.
I will not be embarrassed anymore.
I will say : my partner helps me shower
And we enjoy it
- there have to be some perks, right?
If they find me 'not crippled'
I won't feel like a liar, because I know better.
I will not apologise for being an inconvenience
when I need a ramp to access public transport.
Even if I hadn't planned to travel 24 hours in advance.
Nor will I apologise when someone trips over me,
because they're not looking out for people at wheelie height
(I might apologise if I run over their feet. Unless they really deserve it)
When my speech is slurred and my brain is foggy,
or I need to lie flat to stop fainting
when I lock and pop with each step
like someone's cut a puppet's strings,
when I arrive on wheels with a stethoscope
I will wear a Tshirt that says
"keep staring, I might do a trick"
When I am working part-time,
and colleagues tell me I have it easy,
I will invite them to walk a mile on my knees
or wheel a mile on cambered, cracked pavement
and then report back.
I get to do FY1 and FY2 just like them,
(and FY3 and 4 and even 5
- whatever gets the hours done)
And when fellow 20-somethings
look scandalised by talk of prolapse, constipation
or 'little accidents'
falls, faints and full carrier bags from the pharmacy,
I will be thankful that my friends can see the funny side
and the not-funny side;
who get that honesty is vulnerable but silence is isolating.
Next time I'm on the train, and someone hems me in with suitcases
And says "just ask if you need to get out"
I will smile
"that's fine
- as long as you don't mind asking my permission before you go for a wee"
I will keep talking about the worst times of my life
because stigma and silence kills.
I will be assertive about my access needs at med school,
and take no nonsense from my GP.
I will keep shouting "it's a miracle!"
when people stare at the wheelie walking.
And when Beanie kisses the top of my head
when I'm wheeling down the street
I won't scan faces
wondering what people think of our relationship
from the outside.
I will just tip my head back
and smile.
Fuck narrowly defined normality.
I will not be embarrassed anymore.
Thursday, 24 November 2011
Differential
I was talking to the lovely Bendy Girl on twitter earlier about the number of diagnoses I fielded before finally discovering that my childhood (and adulthood) flexibendyparty tricks had everything to do with the joint pain, fainting, fatigue, nausea, IBS, panic attacks etc that I had taken to the doctor at one time or the other.
It's quite common for bendy folk to have a whole ream of diagnostic 'horses' tried on for size before anyone suggests the 'zebra' that sticks.*
Our conversation got me to thinking of all the different things I've been diagnosed with or tested for over the years.
- depression (my main pre-bendy diagnosis at the grand old age of 13 - in retrospect a lot to do with fatigue and overworking combined with a good helping of fuckedupchildhood - I don't doubt that I was depressed at various points but I think that it was secondary to chronic pain and fatigue which I didn't understand or know how to express)
- hypothyroidism (my psychiatrist was so convinced that my depression/fatigue had a physical basis that when my thyroid levels came back normal I was sent for a thyroid stimlation test, and put on thyroxine for several years under the care of an endocrinologist)
- anaemia (again, psychiatrist was convinced there was a physical cause - I wish she had trusted hereself more)
- SAD (my mother was convinced that it was lack of sunlight causing depression - in retrospect probably a combination of weather-worsened bendy problems and the most stressful/busy period of the year for me school wise)
- BPD (I was a young woman who self-harmed, go figure.)
- CFS/ME (I had fatigue and I wasn't anaemic)
- bulimia (gastric stasis plus mental health issues, apparently quite a common issue in adolescent bendies)
- leukaemia (fatigue plus constant, un-fading, unexplainable bruises)
- being overweight (true, but used to explain joint pain, reflux/gastritis and asthma when I'm not hugely overweight)
- B12 deficiency (as above)
- schizoaffective disorder (turns out barely sleeping for several months - as in 2-3 hours per night maximum - will do funny things to your brain)
- swooning (not in so many words, but my GP's explanation for my up to 10 times a day fainting is that 'young women faint')
- rheumatoid arthritis (young woman with severe joint pain)
- fibromyalgia (the rheumy I saw thought that my fatigue and pain must be a sign of fibro, despite diagnosing me as bendy, showing just how little she knows about EDS)
- vaso-vagal syncope (this diagnosis is still standing - it's pretty much Latin for 'you faint', and as such is a prime example of doctors putting the presenting complaint into poshmedicwords and offering that as an explanation)
- somatisation disorder (posh medic for "it's all in your head" - not to be confused with "you're making it up", the idea being that it's a physical expression of mental distress - often confused with "you're making it up" and therefore frequent accusations of this are made with no referral to psychiatric services for treatment of what is an actual disorder)
- Factitious disorder ("you're making it up" not to be confused with somatisation disorder - I apparently get my kicks out of hanging out in NHS waiting rooms, taking 20 pills a day, being too ill to carry on with uni, needing my partner to shower me - well, ok, that one's not all bad - drinking pints of salt water, using a wheelchair, losing consciouness in public, slurring my words and seeming drunk, subluxating and dislocating my own joints, etc.
As each differential was disproven, I was more and more treated like I was faking, and less and less like a human being. Noone referred me for psychological help to deal with a serious somatisation or factitious disorder. Even though I have a diagnosis now, as my GP knows so little about EDS, I go through the same shit every time I need to discuss a new symptom - I have a genetic disorder that affects pretty much every system in my body, but my GP can only just get his head around the fact that it affects my joints.
Maybe it will help you to understand if I tell you that I put off going to the GP for months when I had the awful bruises that led him to seriously consider that I had leukaemia (bruising as it turns out is just another EDS quirk), because I felt so awfult that I could well believe that I was dying. That looks awfully melodramatic written down, but it is what it is.
Every failed test (yes, what should have been good news, felt like a failure) was just more evidence to myself that I was making this up, that everyone gets tired, everyone gets sore, and it was only me who was too lazy lazylazylazy to get to the end of the day without crying. When everyone tells you that you are lying when you tell them you don't feel well, that there's nothing wrong with you, that you're lazy if you get the bus into uni instead of walking, you take that message into the core of you.
You know that I didn't realise that I'd had joint pain for years until I went to my friend's house one day and the air was thick with weed, and the pain went away? I had been told there was nothing wrong with me so often that I couldn't even work out what pain felt like.
Finally realising that not everyone felt this way every day, finally finding out about EDS and talking to people who'd had the same experiences as me, that was life-changing. I could finally listen to my body and believe what it was telling me. If I'd been diagnosed at 13 when I first started to be significantly disabled by EDS, things would be very different for me now.
I understand that the collection of symptoms - pain, fatigue, IBS, headaches, fainting - could all be explained by depression. I understand that they are all associated with "heart sink" "worried well" patients. I understand that doctors don't get it right all the time. But when you are told for years that you are lying, how are you supposed to trust yourself? I don't know if I'll ever not feel like I've been let-down by these doctors and the system they work in.
When you work through a differential, first you check for the fatal things, and then the common things. If you don't find either, you don't just stop looking. You start looking for the stuff that's less common. I want to tattoo on the arm of every medical student and doctor "sometimes it's zebras".
*as the old medical adage goes : when you hear hoofbeats, think horses not zebras.
It's quite common for bendy folk to have a whole ream of diagnostic 'horses' tried on for size before anyone suggests the 'zebra' that sticks.*
Our conversation got me to thinking of all the different things I've been diagnosed with or tested for over the years.
- depression (my main pre-bendy diagnosis at the grand old age of 13 - in retrospect a lot to do with fatigue and overworking combined with a good helping of fuckedupchildhood - I don't doubt that I was depressed at various points but I think that it was secondary to chronic pain and fatigue which I didn't understand or know how to express)
- hypothyroidism (my psychiatrist was so convinced that my depression/fatigue had a physical basis that when my thyroid levels came back normal I was sent for a thyroid stimlation test, and put on thyroxine for several years under the care of an endocrinologist)
- anaemia (again, psychiatrist was convinced there was a physical cause - I wish she had trusted hereself more)
- SAD (my mother was convinced that it was lack of sunlight causing depression - in retrospect probably a combination of weather-worsened bendy problems and the most stressful/busy period of the year for me school wise)
- BPD (I was a young woman who self-harmed, go figure.)
- CFS/ME (I had fatigue and I wasn't anaemic)
- bulimia (gastric stasis plus mental health issues, apparently quite a common issue in adolescent bendies)
- leukaemia (fatigue plus constant, un-fading, unexplainable bruises)
- being overweight (true, but used to explain joint pain, reflux/gastritis and asthma when I'm not hugely overweight)
- B12 deficiency (as above)
- schizoaffective disorder (turns out barely sleeping for several months - as in 2-3 hours per night maximum - will do funny things to your brain)
- swooning (not in so many words, but my GP's explanation for my up to 10 times a day fainting is that 'young women faint')
- rheumatoid arthritis (young woman with severe joint pain)
- fibromyalgia (the rheumy I saw thought that my fatigue and pain must be a sign of fibro, despite diagnosing me as bendy, showing just how little she knows about EDS)
- vaso-vagal syncope (this diagnosis is still standing - it's pretty much Latin for 'you faint', and as such is a prime example of doctors putting the presenting complaint into poshmedicwords and offering that as an explanation)
- somatisation disorder (posh medic for "it's all in your head" - not to be confused with "you're making it up", the idea being that it's a physical expression of mental distress - often confused with "you're making it up" and therefore frequent accusations of this are made with no referral to psychiatric services for treatment of what is an actual disorder)
- Factitious disorder ("you're making it up" not to be confused with somatisation disorder - I apparently get my kicks out of hanging out in NHS waiting rooms, taking 20 pills a day, being too ill to carry on with uni, needing my partner to shower me - well, ok, that one's not all bad - drinking pints of salt water, using a wheelchair, losing consciouness in public, slurring my words and seeming drunk, subluxating and dislocating my own joints, etc.
As each differential was disproven, I was more and more treated like I was faking, and less and less like a human being. Noone referred me for psychological help to deal with a serious somatisation or factitious disorder. Even though I have a diagnosis now, as my GP knows so little about EDS, I go through the same shit every time I need to discuss a new symptom - I have a genetic disorder that affects pretty much every system in my body, but my GP can only just get his head around the fact that it affects my joints.
Maybe it will help you to understand if I tell you that I put off going to the GP for months when I had the awful bruises that led him to seriously consider that I had leukaemia (bruising as it turns out is just another EDS quirk), because I felt so awfult that I could well believe that I was dying. That looks awfully melodramatic written down, but it is what it is.
Every failed test (yes, what should have been good news, felt like a failure) was just more evidence to myself that I was making this up, that everyone gets tired, everyone gets sore, and it was only me who was too lazy lazylazylazy to get to the end of the day without crying. When everyone tells you that you are lying when you tell them you don't feel well, that there's nothing wrong with you, that you're lazy if you get the bus into uni instead of walking, you take that message into the core of you.
You know that I didn't realise that I'd had joint pain for years until I went to my friend's house one day and the air was thick with weed, and the pain went away? I had been told there was nothing wrong with me so often that I couldn't even work out what pain felt like.
Finally realising that not everyone felt this way every day, finally finding out about EDS and talking to people who'd had the same experiences as me, that was life-changing. I could finally listen to my body and believe what it was telling me. If I'd been diagnosed at 13 when I first started to be significantly disabled by EDS, things would be very different for me now.
I understand that the collection of symptoms - pain, fatigue, IBS, headaches, fainting - could all be explained by depression. I understand that they are all associated with "heart sink" "worried well" patients. I understand that doctors don't get it right all the time. But when you are told for years that you are lying, how are you supposed to trust yourself? I don't know if I'll ever not feel like I've been let-down by these doctors and the system they work in.
When you work through a differential, first you check for the fatal things, and then the common things. If you don't find either, you don't just stop looking. You start looking for the stuff that's less common. I want to tattoo on the arm of every medical student and doctor "sometimes it's zebras".
*as the old medical adage goes : when you hear hoofbeats, think horses not zebras.
Tuesday, 22 November 2011
Tiny losses, tiny let-downs
I find making new friends and meeting new colleagues quite tricky. Partly I think because I'm an introvert, and most people aren't, so it takes a lot of energy for me to do sociable-type things like going to lunch with the whole gang every day rather than curling up in a quiet corner with a book.
I also don't feel like I have a lot in common with other students - my life looks very different in significant ways like disability, or longtermlivein relationship, or queerness - but it's generally the seemingly less significant bits that actually make me feel like an alien - being vegan, doing activism, being Christian but not the kind of Christian the majority of Christian students seem to be. And things that shouldn't matter, but still hurt, like everyone else taking the shortcut to the canteen down the back stairs while I have to go round via the lift, with a merry "see you there". Lunch with a group of people I don't know is my idea of hell. I end up feeling weird, feeling 'other', feeling inferior and fatlazystupidhorrible.
I have friends in medical school, close friends, friends I would eat lunch with every day, it's not that I'm a social outcast. It's just that when you're in a year group of 300, the chance of being placed with someone you're close to is slim. Even when you're in the same hospital as a friend, meeting for lunch is a challenge when each of you is at the whim of whichever consultant you're stalking that day.
A big consideration for me when I chose to intercalate (take a year away from med school to get a BSc) was that I would end up in a different year group. The way things worked out meant that most of my close friends (although not my best friend) intercalated, so I had plenty of familiar faces in the new year group, but it was still quite hard. Now I'm taking this year out, it will happen all over again, except without the scattering of familiar faces to make it easier.
I've come to realise that this is going to happen every year now, for at least the next ten. Working less than fulltime will mean that those I start the foundation programme with will finish in half the time, leaving me with a new batch, and the same will happen in specialist training.
In a lot of ways this doesn't worry me - I have friends and a support network that is not dependent on who I'm working with. I don't feel the urge to socialise a lot out of work with my colleagues in big groups - and I often can't manage the activities anyway - clubbing, late nights, lots of drinking don't go well with my wonky bod (although this is another part of introversion that people don't really understand and I don't think it helps me in terms of fitting in).
But I'm worried about constantly meeting new people (and along with that constantly fielding 'what's wrong with you?' or 'you don't eat cheese?' or 'so what does your partner do, is he a doctor?'). I'm worried about resenting friends who can chug through life at 'normal' place, or being told that I have no right to be stressed/tired during FY1 when I work less than fulltime or don't do certain shifts.
I was talking to the mrs about this yesterday. It's not easy to let myself work through all these little bits of conceptual sadness, these little losses of stuff that isn't yet. I feel so angry, so sad, so let down. I can't think about it, because if I let it overwhelm me, they'll be so much more to grieve for. I'm finding it hard to be at church at the moment, and I think that this is why. It's the only time in the week that I can't control the direction my mind wanders. That wouldn't be a bad thing - I want to work through this stuff, want to name it, to feel it, to put it aside or act on it as appropriate - but I don't get the whole way through the process. I just go to church, get upset/angry, and then come home feeling like shit. I don't know how to make it better. I know it's hard for the mrs that I don't go, but I can't face it. I don't want to keep going to church and leaving in tears.
And you know, I'm actually really happy. I have a beautiful mrs, and lovely family/friends, and a daft cat. There's just this bit of me that's hurting, that hurts more every time I have to fight with my GP to provide the healthcare I need, or listen to the med school's bullshit about why they can't make adaptations. Every time people's words and actions seem to scream that I'm a lazy, inconvenient liar who they wish would disappear.
I also don't feel like I have a lot in common with other students - my life looks very different in significant ways like disability, or longtermlivein relationship, or queerness - but it's generally the seemingly less significant bits that actually make me feel like an alien - being vegan, doing activism, being Christian but not the kind of Christian the majority of Christian students seem to be. And things that shouldn't matter, but still hurt, like everyone else taking the shortcut to the canteen down the back stairs while I have to go round via the lift, with a merry "see you there". Lunch with a group of people I don't know is my idea of hell. I end up feeling weird, feeling 'other', feeling inferior and fatlazystupidhorrible.
I have friends in medical school, close friends, friends I would eat lunch with every day, it's not that I'm a social outcast. It's just that when you're in a year group of 300, the chance of being placed with someone you're close to is slim. Even when you're in the same hospital as a friend, meeting for lunch is a challenge when each of you is at the whim of whichever consultant you're stalking that day.
A big consideration for me when I chose to intercalate (take a year away from med school to get a BSc) was that I would end up in a different year group. The way things worked out meant that most of my close friends (although not my best friend) intercalated, so I had plenty of familiar faces in the new year group, but it was still quite hard. Now I'm taking this year out, it will happen all over again, except without the scattering of familiar faces to make it easier.
I've come to realise that this is going to happen every year now, for at least the next ten. Working less than fulltime will mean that those I start the foundation programme with will finish in half the time, leaving me with a new batch, and the same will happen in specialist training.
In a lot of ways this doesn't worry me - I have friends and a support network that is not dependent on who I'm working with. I don't feel the urge to socialise a lot out of work with my colleagues in big groups - and I often can't manage the activities anyway - clubbing, late nights, lots of drinking don't go well with my wonky bod (although this is another part of introversion that people don't really understand and I don't think it helps me in terms of fitting in).
But I'm worried about constantly meeting new people (and along with that constantly fielding 'what's wrong with you?' or 'you don't eat cheese?' or 'so what does your partner do, is he a doctor?'). I'm worried about resenting friends who can chug through life at 'normal' place, or being told that I have no right to be stressed/tired during FY1 when I work less than fulltime or don't do certain shifts.
I was talking to the mrs about this yesterday. It's not easy to let myself work through all these little bits of conceptual sadness, these little losses of stuff that isn't yet. I feel so angry, so sad, so let down. I can't think about it, because if I let it overwhelm me, they'll be so much more to grieve for. I'm finding it hard to be at church at the moment, and I think that this is why. It's the only time in the week that I can't control the direction my mind wanders. That wouldn't be a bad thing - I want to work through this stuff, want to name it, to feel it, to put it aside or act on it as appropriate - but I don't get the whole way through the process. I just go to church, get upset/angry, and then come home feeling like shit. I don't know how to make it better. I know it's hard for the mrs that I don't go, but I can't face it. I don't want to keep going to church and leaving in tears.
And you know, I'm actually really happy. I have a beautiful mrs, and lovely family/friends, and a daft cat. There's just this bit of me that's hurting, that hurts more every time I have to fight with my GP to provide the healthcare I need, or listen to the med school's bullshit about why they can't make adaptations. Every time people's words and actions seem to scream that I'm a lazy, inconvenient liar who they wish would disappear.
Friday, 4 November 2011
Make believe
I'm not even sure if this post makes any sense. It will at least manage to explain why it doesn't make much sense. I'm swimming through treacle.
From Monday I am going to start a thought experiment (check me out, I'm all Derren Brown-y!). I am going to pretend that I have a job and that my job is filling in my DLA form. I will try to spend my week in the way that I would advise someone else in my position to.
This might sound extreme, but the cold weather has brought with it a pain spike and consequent sleep buggeration, so some combination of pain/fatigue/brainfog is destroying my motivation and concentration.
When I'm talking to someone, or cuddling the cat, or curled up in bed listening to the radio, I'm all there. When I sit down to work on my DLA form or to address some of the other 1500 tasks on my to-do list I find myself drifting off into the middle distance and staring at the wall for hours. My head is so cotton-wooly that it's hard to get to the end of a complete thought.
It's not that I'm not getting anything done, just that everything takes hours longer than it should, that even small periods of concentration (like phoning the bank to ask for my customer number) seem to drain me to a ridiculous extent.
I think maybe getting out of the house to go somewhere else and work on the form would help, but I don't know where I could get to. My independent mobility is very limited at the moment, although hopefully the new chair will help. If I can get so I can easily take the bus on my own, then I can go to the library, which would be nice.
So, I'm going to make myself a timetable, set myself up to work in the study, and make a nice to-do list which is acheivable and has lots of small tasks to tick off. My timetable's not too ambitious, but it's a much more regular routine than I was managing before I was off. It's looking something like : up/dressed/breakfast by 10.30*, alternating tasks every half hour (or more frequently depending how shot my concentration is) until 1ish, lunch and internet messing around, 2-4 some more tasks from the to-do list, then a lie down, then dinner, then flop with a craft project for the evening.
I think by pretending I'm at work, therefore the deadlines I set myself are more concrete, that I might get a bit more done. This plus dividing each job into small tick-off-able tasks should help. I hope =/
*I have a bit of an issue about telling people when I get up. It makes me feel really lazy. Since I've had a few weeks of decent sleep I've been managing to get up by half 9, which is early for me to wake up naturally. It takes me a long time to get going even then - I have to follow a certain routine of meds and exercises to get near to awake. I hate mornings. Mornings hate me.
From Monday I am going to start a thought experiment (check me out, I'm all Derren Brown-y!). I am going to pretend that I have a job and that my job is filling in my DLA form. I will try to spend my week in the way that I would advise someone else in my position to.
This might sound extreme, but the cold weather has brought with it a pain spike and consequent sleep buggeration, so some combination of pain/fatigue/brainfog is destroying my motivation and concentration.
When I'm talking to someone, or cuddling the cat, or curled up in bed listening to the radio, I'm all there. When I sit down to work on my DLA form or to address some of the other 1500 tasks on my to-do list I find myself drifting off into the middle distance and staring at the wall for hours. My head is so cotton-wooly that it's hard to get to the end of a complete thought.
It's not that I'm not getting anything done, just that everything takes hours longer than it should, that even small periods of concentration (like phoning the bank to ask for my customer number) seem to drain me to a ridiculous extent.
I think maybe getting out of the house to go somewhere else and work on the form would help, but I don't know where I could get to. My independent mobility is very limited at the moment, although hopefully the new chair will help. If I can get so I can easily take the bus on my own, then I can go to the library, which would be nice.
So, I'm going to make myself a timetable, set myself up to work in the study, and make a nice to-do list which is acheivable and has lots of small tasks to tick off. My timetable's not too ambitious, but it's a much more regular routine than I was managing before I was off. It's looking something like : up/dressed/breakfast by 10.30*, alternating tasks every half hour (or more frequently depending how shot my concentration is) until 1ish, lunch and internet messing around, 2-4 some more tasks from the to-do list, then a lie down, then dinner, then flop with a craft project for the evening.
I think by pretending I'm at work, therefore the deadlines I set myself are more concrete, that I might get a bit more done. This plus dividing each job into small tick-off-able tasks should help. I hope =/
*I have a bit of an issue about telling people when I get up. It makes me feel really lazy. Since I've had a few weeks of decent sleep I've been managing to get up by half 9, which is early for me to wake up naturally. It takes me a long time to get going even then - I have to follow a certain routine of meds and exercises to get near to awake. I hate mornings. Mornings hate me.
Tuesday, 1 November 2011
Progress Report = Drunk Zombie
Tonight I am starting to get a bit worried about how I'm going to get everything done that I need to this year. It's 5 weeks since I left med school, and I'm still really struggling with energy/motivation/concentration/brainfog. I feel like I've wasted a month.
I'm scared of starting to drive, because it's a completely new skill and one I don't think will come particularly naturally. I haven't started to exercise, because my local council gym with a swimming pool is 15 minutes away from the nearest bus stop and I haven't figued out one that will be more accessible. The DLA form is really hard going and the local CAB-type place has a 6 week waiting list for helping to fill them in. I still haven't sorted out a plan of action with my GP, or even managed to get an appointment with a non-locum. I haven't agreed any adaptations with the medical school for next year. I feel a bit sick thinking about it all.
Not only is my brain calling me a fail because of the above lack of progress, but I also feel like I'm not entitled to feel stressed about how much there is to do when all my friends are getting ready for their finals / enduring junior doctor-ness. And I feel like crap because I'm not able to do stuff around the house (like laundry, washing up) for Beanie when she's so busy and I'm just sitting around the house all day. And then every few days I decide that I'm being lazy and it's all in my head so totally push the boundaries and then can't do anything for the next few days.
I'm trying so hard to be compassionate towards myself. I would never call someone else in my position lazy, or say that someone was useless if they couldn't work/help around the house.
I think I had this idea that without med school taking up time I could just replace that with working towards all these things that need done. I hadn't quite got my head around just how much my attendance had fallen off, how ill I was feeling every day, how exhausted I was. The difference I suppose is how I'm choosing to spend my energy, and also that I'm trying really hard not to go over my budget and thus end up in the bood/bust cycle that was breaking me.
I keep trying to remind myself that I have been doing stuff, that I am making progress, that it will be alright. I've been to two protests, organised and run a weekend event for the charity I'm a trustee of, visited my parents and friends, made a long train journey alone in the wheelchair, live tweeted the Lords committee stage of the Welfare Reform Bill, applied for a driving license, researched and started my DLA form, ordered the new wheelchair and done a lot of reading and craft. More importantly I've got into a routine with food, meds, self-managent and sleep. I can really feel the difference, but it takes a lot of time and motivation to keep on top of it all.
I told myself at the start of this whole thing that my priorities for this year were maximising my health (physical/mental/social/spiritual), applying for DLA and learning to drive. Put like that it doesn't sound so daunting. But tonight it also seems huge and unmanageable and scary. I need the energy/motivation/concentration to make a plan and stick to it, but even the idea of that is too much. I really feel like I need some help to manage it all, but I can't really think of any way to make that happen.
Seriously, if you could see me now, you would get the brainfog thing. I look/feel like a drunk zombie. I hope it'll lift a bit tomorrow now I've had a chance to rest after the weekend...
I'm scared of starting to drive, because it's a completely new skill and one I don't think will come particularly naturally. I haven't started to exercise, because my local council gym with a swimming pool is 15 minutes away from the nearest bus stop and I haven't figued out one that will be more accessible. The DLA form is really hard going and the local CAB-type place has a 6 week waiting list for helping to fill them in. I still haven't sorted out a plan of action with my GP, or even managed to get an appointment with a non-locum. I haven't agreed any adaptations with the medical school for next year. I feel a bit sick thinking about it all.
Not only is my brain calling me a fail because of the above lack of progress, but I also feel like I'm not entitled to feel stressed about how much there is to do when all my friends are getting ready for their finals / enduring junior doctor-ness. And I feel like crap because I'm not able to do stuff around the house (like laundry, washing up) for Beanie when she's so busy and I'm just sitting around the house all day. And then every few days I decide that I'm being lazy and it's all in my head so totally push the boundaries and then can't do anything for the next few days.
I'm trying so hard to be compassionate towards myself. I would never call someone else in my position lazy, or say that someone was useless if they couldn't work/help around the house.
I think I had this idea that without med school taking up time I could just replace that with working towards all these things that need done. I hadn't quite got my head around just how much my attendance had fallen off, how ill I was feeling every day, how exhausted I was. The difference I suppose is how I'm choosing to spend my energy, and also that I'm trying really hard not to go over my budget and thus end up in the bood/bust cycle that was breaking me.
I keep trying to remind myself that I have been doing stuff, that I am making progress, that it will be alright. I've been to two protests, organised and run a weekend event for the charity I'm a trustee of, visited my parents and friends, made a long train journey alone in the wheelchair, live tweeted the Lords committee stage of the Welfare Reform Bill, applied for a driving license, researched and started my DLA form, ordered the new wheelchair and done a lot of reading and craft. More importantly I've got into a routine with food, meds, self-managent and sleep. I can really feel the difference, but it takes a lot of time and motivation to keep on top of it all.
I told myself at the start of this whole thing that my priorities for this year were maximising my health (physical/mental/social/spiritual), applying for DLA and learning to drive. Put like that it doesn't sound so daunting. But tonight it also seems huge and unmanageable and scary. I need the energy/motivation/concentration to make a plan and stick to it, but even the idea of that is too much. I really feel like I need some help to manage it all, but I can't really think of any way to make that happen.
Seriously, if you could see me now, you would get the brainfog thing. I look/feel like a drunk zombie. I hope it'll lift a bit tomorrow now I've had a chance to rest after the weekend...
Tuesday, 25 October 2011
When concentration wanders off...
This blog post came out of a conversation on twitter about the difficulty of motivating yourself / getting work done when your concentration is bad for whatever reason (fatigue, anxiety, distraction etc). This is either going to make me sound hideously preachy, or militarily organised. I am neither. These are the techniques that I have learned over years of brainfog and depression, for actually managing to get anything done. In this way I am having quite a productive day despite the fact that my sensory processing today is simulating being wrapped in cotton wool underwater.
They give me a framework in which I don't need heroic amounts of motivation to battle through the fog. They might seem intense at first, but structure has really helped me, so it's worth a try. If you've got someone to help you hold yourself accountable for what you get up to over the day, all the better.
The very first thing on the list is to give yourself the best basis for concentration. As far as you are able get plenty of rest, eat enough and healthily, get some fresh air in your lungs, manage pain and anxiety etc. We are not machines, and as such to stay active our body and brain needs varied stimulation (why not switch between cleaning the bathroom and studying infectious disease for the ultimately engaging Saturday morning?) and regular periods of rest (every 90 minutes for me) and re-fueling (leave your desk to eat lunch and you combine the two).
Also identify your primary distractions, and deal with them. For example, when I'm writing a blog post, my natural inclination is to hop between tabs to twitter or my blog reader, where I inevitably forget was I was doing in the first place. To manage this, I have this open in a separate browser window, and every 10 minutes I give myself 5 minutes of browsing time, with an alarm that goes off at the end to remind me to start again. I find silence causes me to wander off into my brainbox, and I can't resist the urge to sing along to music, so I am writing this to a background of radio 4. If your distractions are worries, or anxieties, try taking 5 minutes to write them all down before you start work, as a symbol for setting them aside.
Realise that different days / moods suit different tasks. Today's brainfog means that anything creative / requiring sustained thought is out, but practical target-driven tasks are fine (email this question to such-and-such, book cinema tickets, write blog post from these notes, bullet point mobility issues for DLA application).
Make a to-do list, split into topics (such as current placement / revision / audit). Separate any big jobs into sub-tasks (such as write essay plan / draft introduction / run journal search). Assign each task to the category now, soon or sometime (I do this by highlighting each category in a different colour). Write a date/time to complete for everything in the 'now' category, and write a date/time to review the list.
Don't let this take any longer than 10 minutes. You can always add things later.
If you have a period of time (say an afternoon) and you have several tasks on the list for that time, there are a couple of ways to approach things.
Think about balance between activities - sometimes it's easy to group similar activities together, like getting several phonecalls out of the way in one go, but sometimes you need to break things up - so writing an essay in half an hour bursts interspersed with 10 minutes of cleaning the bathroom
Are you particularly dreading anything on the list? if it's a short activity (e.g. a phonecall) do it first. Then give yourself a reward - a piece of chocolate, or 15 minutes rocking out to the Beatles. If it's a longer activity (like cleaning the flat or writing an essay) spend 10 minutes assembling everything you need, then 20 minutes doing something else on the list. Then come back to it and spend 20 minutes doing an overview (writing an essay plan or doing a quick tidy round of the whole flat) and 10 minutes doing something else on the list.
Take a break, make a cup of tea, and then spend an hour getting as much done as you can (imagine you only have an hour to do the whole thing). If you find yourself getting too bogged down - spending ages tidying one little drawer, or over-policing and re-editing one particular sentence - take a deep breath, move to a different room / paragraph and keep going. You can come back to the detail later.
I know that it sounds brutal, and impossible, but getting into the habit of finishing the big picture first makes tasks seem so much less daunting.
If it's an essay, aim to have a general draft of the essay done within the hour, even if some paragraphs are only sentences or bullet points. Then work out how much time you have left to work on it, and split that time up between each paragraph / section, filling in the detail. Again, if you get too bogged down, stop and come up for air.
If you get to the end of the time period, and you haven't finished the tasks on your list, don't panic. Think about the now/soon/sometime model, decide when to do it, and then mentally set the task aside until then. Use this as a learning experience - it will help you to be more realistic about what is possible to get done in a given length of time. If you are constantly running out of time for the tasks you have to get done, you need to have a serious think about whether you have taken on too much.
Remember, it's always better to tell people early on that you won't get something done, rather than in a panic at the last minute - this goes for uni deadlines, jobs lists on placement, cooking dinner for your flatmates.
For studying, rather than writing, I use a slightly different technique. This is much more personal, and depends a lot on what you're learning, and how you best absorb / remember information. I'll write about that a bit tomorrow maybe.
They give me a framework in which I don't need heroic amounts of motivation to battle through the fog. They might seem intense at first, but structure has really helped me, so it's worth a try. If you've got someone to help you hold yourself accountable for what you get up to over the day, all the better.
The very first thing on the list is to give yourself the best basis for concentration. As far as you are able get plenty of rest, eat enough and healthily, get some fresh air in your lungs, manage pain and anxiety etc. We are not machines, and as such to stay active our body and brain needs varied stimulation (why not switch between cleaning the bathroom and studying infectious disease for the ultimately engaging Saturday morning?) and regular periods of rest (every 90 minutes for me) and re-fueling (leave your desk to eat lunch and you combine the two).
Also identify your primary distractions, and deal with them. For example, when I'm writing a blog post, my natural inclination is to hop between tabs to twitter or my blog reader, where I inevitably forget was I was doing in the first place. To manage this, I have this open in a separate browser window, and every 10 minutes I give myself 5 minutes of browsing time, with an alarm that goes off at the end to remind me to start again. I find silence causes me to wander off into my brainbox, and I can't resist the urge to sing along to music, so I am writing this to a background of radio 4. If your distractions are worries, or anxieties, try taking 5 minutes to write them all down before you start work, as a symbol for setting them aside.
Realise that different days / moods suit different tasks. Today's brainfog means that anything creative / requiring sustained thought is out, but practical target-driven tasks are fine (email this question to such-and-such, book cinema tickets, write blog post from these notes, bullet point mobility issues for DLA application).
Make a to-do list, split into topics (such as current placement / revision / audit). Separate any big jobs into sub-tasks (such as write essay plan / draft introduction / run journal search). Assign each task to the category now, soon or sometime (I do this by highlighting each category in a different colour). Write a date/time to complete for everything in the 'now' category, and write a date/time to review the list.
Don't let this take any longer than 10 minutes. You can always add things later.
If you have a period of time (say an afternoon) and you have several tasks on the list for that time, there are a couple of ways to approach things.
Think about balance between activities - sometimes it's easy to group similar activities together, like getting several phonecalls out of the way in one go, but sometimes you need to break things up - so writing an essay in half an hour bursts interspersed with 10 minutes of cleaning the bathroom
Are you particularly dreading anything on the list? if it's a short activity (e.g. a phonecall) do it first. Then give yourself a reward - a piece of chocolate, or 15 minutes rocking out to the Beatles. If it's a longer activity (like cleaning the flat or writing an essay) spend 10 minutes assembling everything you need, then 20 minutes doing something else on the list. Then come back to it and spend 20 minutes doing an overview (writing an essay plan or doing a quick tidy round of the whole flat) and 10 minutes doing something else on the list.
Take a break, make a cup of tea, and then spend an hour getting as much done as you can (imagine you only have an hour to do the whole thing). If you find yourself getting too bogged down - spending ages tidying one little drawer, or over-policing and re-editing one particular sentence - take a deep breath, move to a different room / paragraph and keep going. You can come back to the detail later.
I know that it sounds brutal, and impossible, but getting into the habit of finishing the big picture first makes tasks seem so much less daunting.
If it's an essay, aim to have a general draft of the essay done within the hour, even if some paragraphs are only sentences or bullet points. Then work out how much time you have left to work on it, and split that time up between each paragraph / section, filling in the detail. Again, if you get too bogged down, stop and come up for air.
If you get to the end of the time period, and you haven't finished the tasks on your list, don't panic. Think about the now/soon/sometime model, decide when to do it, and then mentally set the task aside until then. Use this as a learning experience - it will help you to be more realistic about what is possible to get done in a given length of time. If you are constantly running out of time for the tasks you have to get done, you need to have a serious think about whether you have taken on too much.
Remember, it's always better to tell people early on that you won't get something done, rather than in a panic at the last minute - this goes for uni deadlines, jobs lists on placement, cooking dinner for your flatmates.
For studying, rather than writing, I use a slightly different technique. This is much more personal, and depends a lot on what you're learning, and how you best absorb / remember information. I'll write about that a bit tomorrow maybe.
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