The last couple of days I've had a fever. That, combined with the marginally hot weather has really pissed off my malfunctional autonomic nervous system. I've spent the last two days with a seated pulse in the region of 120-150, temperature regulation all over the shop and feeling sick. I haven't been in to placement, being as fainting on patients tends to be frowned upon.
I decided to keep my hydro(therapy) appointment, because I hate wasting appointment time. I warned the physio I was having an "ultra-bendy" day, and he seemed to get the picture pretty quickly when both wrists, elbows, shoulders, patellas (patellae?), hips, and several ribs all needed relocating at least once. He said it was useful to see how bad things could be, which is good I think. But then I passed out climbing out of the pool, and had to do some fast talking to not end up in A/E.
Then on the way home, the bus driver didn't stop at my stop, even though I had rung the bell, and then rung it again as he obviously made to not stop. He let me off at the traffic lights because a lady shouted at him for me. This proved to be the last straw for my tear ducts, so I was walking forlornly back to the flat leaking from the eyes, prompting an it-might-never-happen attack from a passer by.
Had I been more coherent and less snotty, I would have been inclined to ask him why exactly he thought I was walking down the street in tears if "it" hadn't already happened.
I get extremely frustrated when I am discriminated against by people refusing to meet my needs, but I am not given to self pity. I would just like to get on with the life I find myself in, thanks. Not that I'm some kind of saint or anything. I've had a few I-just-want-it-to-be-easier crying sessions, but, actually, having a diagnosis at last has made things more cope-able.
What is this "it" to which he was referring? Yes, I am engaged to a beautiful, caring, smart and infinitely capable women, yes I am writing this with a blissed out cat on my feet eating a takeaway (no, my cat is not eating a takeaway), yes I have an education and the chance to do a job that I'm really passionate about, and the best friends and family I could ever ask for. Nothing cancels any of those things out, but I am also coming to terms with a new, life-changing diagnosis, and learning to cope with chronic pain and its friends.
There are worse "it"s, but this is mine, for now. And if you really want to cheer me up, I suggest providing me with one of the following : dark chocolate with ginger bits in, cherry tea, a hug, a hot wheat bag, a compliment on my awesome stripy stick, a new craft project or a vegan cookbook.
Edited to add : cherry tea and a hot wheat bag have just appeared in front of me, and a vegan cookbook is winging its way to us. I love my mrs =)
Thursday, 30 June 2011
Tuesday, 28 June 2011
Unreasonable adjustment?
I've had a lovely couple of days doing a resus training course. I really enjoyed the content, and getting to know some more people in my new-since-intercalating year.
I had one particularly good conversation which started with a girl asking me "How are you getting on this year, because the stick's a relatively new thing isn't it? If it's not too personal?" We then had a really interesting conversation about the parts of the course that we both find difficult, as introverts. She seemed to instinctively understand, as well, the parts of the course that would be difficult as someone with a relatively hidden disability - such as always turning up in new places and working with staff who haven't got to know me, and therefore don't know that I wobble-and-fall-down if there isn't a handy chair.
She couldn't believe that the medical school (or rather some individuals within it) didn't share her common sense. To her it seemed as obvious as it does to me. As I have discovered, which will come as no surprise to some of you, on a personal level folk within the med school do understand. The problem is not that they can't see the issue, the problem is that they cannot see how to deal with the issue within the current way of doing things, and therefore pretend that the issue doesn't actually exist. It's incredibly frustrating, and humiliating - and, over time, leads you to question whether there is actually an issue, or if it's just you being unreasonable. Sometimes it takes someone else to state the obvious to redress the balance.
Has anyone made you feel unreasonable for requesting "reasonable adjustments"? How did you deal with it?
I've updated my links page into two separate pages, Disability and Medicine, and Other Disability Links I hope you find them useful.
I had one particularly good conversation which started with a girl asking me "How are you getting on this year, because the stick's a relatively new thing isn't it? If it's not too personal?" We then had a really interesting conversation about the parts of the course that we both find difficult, as introverts. She seemed to instinctively understand, as well, the parts of the course that would be difficult as someone with a relatively hidden disability - such as always turning up in new places and working with staff who haven't got to know me, and therefore don't know that I wobble-and-fall-down if there isn't a handy chair.
She couldn't believe that the medical school (or rather some individuals within it) didn't share her common sense. To her it seemed as obvious as it does to me. As I have discovered, which will come as no surprise to some of you, on a personal level folk within the med school do understand. The problem is not that they can't see the issue, the problem is that they cannot see how to deal with the issue within the current way of doing things, and therefore pretend that the issue doesn't actually exist. It's incredibly frustrating, and humiliating - and, over time, leads you to question whether there is actually an issue, or if it's just you being unreasonable. Sometimes it takes someone else to state the obvious to redress the balance.
Has anyone made you feel unreasonable for requesting "reasonable adjustments"? How did you deal with it?
I've updated my links page into two separate pages, Disability and Medicine, and Other Disability Links I hope you find them useful.
Labels:
access and adaptations,
disability,
disabled,
eds,
hms,
medic,
medical student,
nhs
Monday, 27 June 2011
Solidarity
I'm really tired.
Over the last year I have watched in horror as the government systematically removes money from the very people and groups who most need it. I have sat here in my flat watching twitter, and the news while thousands gather to protest, because I could not be there myself. I have read story after story of people who will be left with no way forward, with no independence, in poverty and isolation, with worse care - medical and personal. People whose future are swathed in uncertainty.
I have done a bit - I have joined in every online campaign that I've heard about and I've spread the word a bit among some of my friends about what it is that's happening. I have done a bit, but others have given everything that they possibly could have. I have been following the blogs of Sue Marsh and Kaliya Franklin, and I would ask you to read this tonight. These ladies don't have reserves right now, they need more people to join them in saying that this cannot happen in our name. This cannot happen to us - to our partners, our friends, our families. This cannot happen.
I can't do any more right now. I am too tired, and and what I have left I need for doing battle with the med school so that this isn't so tough for the next person. I have posted this here, and I have sent it to my MP. Please show Sue's post to one other person, post it on your blog or facebook, send it to your MP. It's really important. Please read up about what the government's plans will mean - The Broken of Britain is a good place to start.
This is already having a real, and serious impact on people's lives. If it hasn't affected you yet, it will. There is no time left for waiting. Do something, tonight.
Over the last year I have watched in horror as the government systematically removes money from the very people and groups who most need it. I have sat here in my flat watching twitter, and the news while thousands gather to protest, because I could not be there myself. I have read story after story of people who will be left with no way forward, with no independence, in poverty and isolation, with worse care - medical and personal. People whose future are swathed in uncertainty.
I have done a bit - I have joined in every online campaign that I've heard about and I've spread the word a bit among some of my friends about what it is that's happening. I have done a bit, but others have given everything that they possibly could have. I have been following the blogs of Sue Marsh and Kaliya Franklin, and I would ask you to read this tonight. These ladies don't have reserves right now, they need more people to join them in saying that this cannot happen in our name. This cannot happen to us - to our partners, our friends, our families. This cannot happen.
I can't do any more right now. I am too tired, and and what I have left I need for doing battle with the med school so that this isn't so tough for the next person. I have posted this here, and I have sent it to my MP. Please show Sue's post to one other person, post it on your blog or facebook, send it to your MP. It's really important. Please read up about what the government's plans will mean - The Broken of Britain is a good place to start.
This is already having a real, and serious impact on people's lives. If it hasn't affected you yet, it will. There is no time left for waiting. Do something, tonight.
Thursday, 23 June 2011
Hooray for showers!
I had a meeting with an OT the other week. As is becoming the norm, she gave me a whole list of things that would be helpful for me, but said that they didn't have funding to give me any of them*. Except for yet another not-skin coloured brace, one size fits none. Then, she had a brainwave. We still have lots of bathboards in our budget, do you have any problems in the shower?
I used to love showers. A long, warm shower at the end of a hard day was one of my favourite things. But over the last year, it'd become almost impossible for me to have a shower in our current set up, with a shower over the bath. On most days getting in to the bath was about do-able, but climbing back out when everything was slippery was decidedly treacherous. Combine that with my propensity to faint at the sight of hot water these days, and my inability to stand still for any meaningful length of time, and you start to understand the number of bruises, popped out joints and concussions I accumulated.
Yesterday the bath bench arrived. It is very white (one of two NHS regulation colours, the other being not-skin-coloured) and a bit ugly, but hey. It will make transferring in and out my easier, and will mean I can sit down for most of the shower. Privacy, safety and cleanliness, all in one lump of white plastic. And all for like £30. And the mrs is pleased...it's a much easier way to shave your legs than trying to balance like a stork!
* Some really good ideas though - I bought the beautiful device below, a Breville hot cup, on her recommendation, because I keep dumping the contents of just-boiled kettles all over myself. Means I can have a cup of cherry tea even when I'm not being supervised by the mrs. Yum =)
I used to love showers. A long, warm shower at the end of a hard day was one of my favourite things. But over the last year, it'd become almost impossible for me to have a shower in our current set up, with a shower over the bath. On most days getting in to the bath was about do-able, but climbing back out when everything was slippery was decidedly treacherous. Combine that with my propensity to faint at the sight of hot water these days, and my inability to stand still for any meaningful length of time, and you start to understand the number of bruises, popped out joints and concussions I accumulated.
The picture shows a white plastic bath board over a white bath.
The tiles in the bathroom (not mine!) are yellow and blue.
It had got to the point that I was showering maybe once a week, and only with a lot of help, swearing and the aforementioned bruises. Noone (not GP, rheumatologist or physio) thought this was a good enough reason to refer me to OT. I was referred in the end because I "bend my hands in ridiculously disgusting ways", to quote the physio.The tiles in the bathroom (not mine!) are yellow and blue.
Yesterday the bath bench arrived. It is very white (one of two NHS regulation colours, the other being not-skin-coloured) and a bit ugly, but hey. It will make transferring in and out my easier, and will mean I can sit down for most of the shower. Privacy, safety and cleanliness, all in one lump of white plastic. And all for like £30. And the mrs is pleased...it's a much easier way to shave your legs than trying to balance like a stork!
* Some really good ideas though - I bought the beautiful device below, a Breville hot cup, on her recommendation, because I keep dumping the contents of just-boiled kettles all over myself. Means I can have a cup of cherry tea even when I'm not being supervised by the mrs. Yum =)
Tuesday, 21 June 2011
You'll get better, won't you?
Every so often, I find myself tied up in knots by a conversation that goes along these lines :
What's wrong with your knees / feet / hips / legs ?
I have a joint problem / connective tissue disorder / my joints are too bendy /mind your own business
Oh, are they sore?
Yes
You will get better won't you? / How long until you can stop using the stick? / You're too young to have joint problems
[Mumble something incoherent]
I know they "mean well" but can't people engage their brain before they open their mouthes. What am I supposed to say? No sorry, I won't get better, I'll probably just get slowly worse. Or, I'm sorry, I didn't realise 23 was too young, I'll stow my stick away for 60 years shall I?. Or, I'm sorry that my condition upsets you.
What do they expect me to say? How can it "not be fair"? It's my life, who "deserves" it more or less than me?
My friends get to say these things to me, my family. I'm not selfish enough to think that I'm the only person who has to deal with this, and I'm not arrogant enough to tell them how to deal with it. It's a really big deal.
But strangers or vague acquaintances - people on the bus, patients, folk at church, bored med students - please, think. When you think this stuff out loud I am obliged to make it seem alright. To say Oh, it's not so bad, you get used to it, actually the stick really helps. You oblige me to make it something simple, manageable, put-in-a-box-able.
And it's hard to do that, because it's my life. This isn't just about using a stick, it's about a condition that has changed my whole life. It's not all negative, not all the changes are bad - but it has changed my whole life.
It's not like you're stuck for options. Maybe try that must be hard / oh, I hadn't realised / your stick is AWESOME (because it is), or even just OK.
Just, y'know, I've had to reassure 4 complete strangers today. About my health. And that's really tiring.
What's wrong with your knees / feet / hips / legs ?
I have a joint problem / connective tissue disorder / my joints are too bendy /
Oh, are they sore?
Yes
You will get better won't you? / How long until you can stop using the stick? / You're too young to have joint problems
[Mumble something incoherent]
I know they "mean well" but can't people engage their brain before they open their mouthes. What am I supposed to say? No sorry, I won't get better, I'll probably just get slowly worse. Or, I'm sorry, I didn't realise 23 was too young, I'll stow my stick away for 60 years shall I?. Or, I'm sorry that my condition upsets you.
What do they expect me to say? How can it "not be fair"? It's my life, who "deserves" it more or less than me?
My friends get to say these things to me, my family. I'm not selfish enough to think that I'm the only person who has to deal with this, and I'm not arrogant enough to tell them how to deal with it. It's a really big deal.
But strangers or vague acquaintances - people on the bus, patients, folk at church, bored med students - please, think. When you think this stuff out loud I am obliged to make it seem alright. To say Oh, it's not so bad, you get used to it, actually the stick really helps. You oblige me to make it something simple, manageable, put-in-a-box-able.
And it's hard to do that, because it's my life. This isn't just about using a stick, it's about a condition that has changed my whole life. It's not all negative, not all the changes are bad - but it has changed my whole life.
It's not like you're stuck for options. Maybe try that must be hard / oh, I hadn't realised / your stick is AWESOME (because it is), or even just OK.
Just, y'know, I've had to reassure 4 complete strangers today. About my health. And that's really tiring.
Monday, 20 June 2011
Gatekeepers
I am not, by nature, an assertive person. I am getting better at it, but I'm still not great. As you may have gathered, I'm one of these folks who nods meekly on the outside, while seething on the inside and then rants to my other half about all the things I wish I'd said.
This is especially problematic when dealing with doctors. All doctors, especially GPs have essentially two functions :
1) To diagnose / manage conditions and do other doctor-ly things
2) To act as "gatekeepers" to other services
I used to expect my GP to telepathically know that "my joints still hurt" means "please refer me to rheumatology", because I was too afraid of seeming demanding by asking for what I wanted. I'm finding it a bit easier these days, especially since I was introduced to the Assertive Method (really well worth a read, I like to glance over it before each time I go to the GP). For example :
It might not always work, but it is very effective. And, more importantly sometimes, if it doesn't work, you still have your dignity. When your relationship with a doctor is battered and bruised because they constantly seem to disbelieve you, your dignity is important.
I've been on the other side of this tactic - for example a student-led consultation with a gentleman who was completely insistent about getting some diazepam. He would not be talked down, over and over again "I just want my tablets". In the end my GP tutor gave him the prescription.
There is a reason doctors aren't allowed to prescribe for themselves or their nearest and dearest. Sometimes you need a bit of outside impartiality in your life. But, it's important to be educated about your health, and your condition - and sometimes that will mean that you literally do know better than your GP.
How do you guys, especially medics / expert patients, deal with your GPs in their gatekeeping role?
This is especially problematic when dealing with doctors. All doctors, especially GPs have essentially two functions :
1) To diagnose / manage conditions and do other doctor-ly things
2) To act as "gatekeepers" to other services
I used to expect my GP to telepathically know that "my joints still hurt" means "please refer me to rheumatology", because I was too afraid of seeming demanding by asking for what I wanted. I'm finding it a bit easier these days, especially since I was introduced to the Assertive Method (really well worth a read, I like to glance over it before each time I go to the GP). For example :
- Step 1 - I have been telling you about my joint pain for 2 years now, and it's been getting worse, not better.
- Step 2 - I am feeling overwhelmed by these symptoms at the moment, and I don't know how to cope.
- Step 3 - I would like you to refer me to rheumatology so that I can get a proper diagnosis, and some more help.
- Step 4 - What do you think?
- GP - I don't think that's necessary, there's no sign of inflammatory arthritis, your RF and ANA are negative, hypermobility can cause a bit of joint pain etc, etc, etc.
- Step 3 - I would like a referral anyway, so that I can get a proper diagnosis, and some more help.
- GP- OK.
The picture shows a green metal gate with flowers
worked into it. It is dark, and through the gaps you
can see a passing car, and a red traffic light.
worked into it. It is dark, and through the gaps you
can see a passing car, and a red traffic light.
It might not always work, but it is very effective. And, more importantly sometimes, if it doesn't work, you still have your dignity. When your relationship with a doctor is battered and bruised because they constantly seem to disbelieve you, your dignity is important.
I've been on the other side of this tactic - for example a student-led consultation with a gentleman who was completely insistent about getting some diazepam. He would not be talked down, over and over again "I just want my tablets". In the end my GP tutor gave him the prescription.
There is a reason doctors aren't allowed to prescribe for themselves or their nearest and dearest. Sometimes you need a bit of outside impartiality in your life. But, it's important to be educated about your health, and your condition - and sometimes that will mean that you literally do know better than your GP.
How do you guys, especially medics / expert patients, deal with your GPs in their gatekeeping role?
Saturday, 18 June 2011
10 top tips for days of lectures
I've been asked by a couple of people if I can give them some tips about surviving med school with physical / mental health problems, so here is the first in a series of posts with my top tips. They won't make it blissfully easy, but they might help a bit.
(These tips are based on my experience of lectures. As a student on a PBL course, lectures were infrequent, but tended to be grouped together into several hours at a stretch, or an entire 9-5 day with an hour for lunch.)
1) Prepare! Day before (or frantically at the last minute) gather all the meds, splints, cushions, layers of clothes, snacks and drinks you might need. If you have lectures all the time, just leave the stuff together in a bag. If the slides are available before hand, either download them to your laptop, or print them off to save lots of pointless note taking.
2) If you get anxious in big groups of people, you might find the biggest battle is waiting in the throng of people outside and finding a seat. To relax during that high stress time, try listening to good music, reading, flanking yourself with sympathetic friends, or all three. Or wait outside and rush in at the last possible minute.
3) Sit towards the end of a row, so you can make a quick and easy escape if needed
4) If you're in for a long day, take every opportunity to stretch your legs, pee, and change your sitting position even early in the day when you don’t feel so much like you need it. Ditto for pain meds – if sitting for a long time hurts, take meds regularly throughout the day, not just when it starts to hurt.
5) To spread the stress a bit, maximise the number of positions you can sit in by taking an inflatable cushion, a clipboard (so you can write on your lap), and by switching sides of the room halfway through the day so you don't get neck cramp.
6) Switching pens is a great way to delay hand strain or cramp. If you've only one, try wrapping a folded up tissue, or wrapping a hairband around the grip for a change.
7) Some people find dictaphones helpful. I don’t, because I’ll just never listen to it again, but it’s worth thinking about. I’ve never had a note-taker, but I’ve been one. It’s ok to ‘shop around’ if someone’s style doesn’t suit you – if you explain it like that they shouldn’t be offended.
8) If the lecturer mentions your condition, and spouts information that is woefully out of date / horrifically condescending / downright inaccurate etc, etc then tell them! (You can go up to them after if you don’t want to make a fuss in front of everyone) Ditto if their presentation has triggered you in some way, it may be worth mentioning (via the disability service if you don't want to do it in person). *
9) Be realistic. If you aren't going to manage a full day of lectures, decide which ones are likely to be interesting / useful, or the opposite, and prioritise. If you can't physically leave, then let yourself zone out - listen to music, read or put your head down and nap (you won't be the only one...)
10) When you’re planning the rest of the day / evening activities, bear in mind that you’ll have been sitting down for a long time. Maybe plan for a nap / lie down when you get home, and then a bit of a walk / swim in the evening.
(These tips are based on my experience of lectures. As a student on a PBL course, lectures were infrequent, but tended to be grouped together into several hours at a stretch, or an entire 9-5 day with an hour for lunch.)
1) Prepare! Day before (or frantically at the last minute) gather all the meds, splints, cushions, layers of clothes, snacks and drinks you might need. If you have lectures all the time, just leave the stuff together in a bag. If the slides are available before hand, either download them to your laptop, or print them off to save lots of pointless note taking.
2) If you get anxious in big groups of people, you might find the biggest battle is waiting in the throng of people outside and finding a seat. To relax during that high stress time, try listening to good music, reading, flanking yourself with sympathetic friends, or all three. Or wait outside and rush in at the last possible minute.
3) Sit towards the end of a row, so you can make a quick and easy escape if needed
4) If you're in for a long day, take every opportunity to stretch your legs, pee, and change your sitting position even early in the day when you don’t feel so much like you need it. Ditto for pain meds – if sitting for a long time hurts, take meds regularly throughout the day, not just when it starts to hurt.
5) To spread the stress a bit, maximise the number of positions you can sit in by taking an inflatable cushion, a clipboard (so you can write on your lap), and by switching sides of the room halfway through the day so you don't get neck cramp.
6) Switching pens is a great way to delay hand strain or cramp. If you've only one, try wrapping a folded up tissue, or wrapping a hairband around the grip for a change.
7) Some people find dictaphones helpful. I don’t, because I’ll just never listen to it again, but it’s worth thinking about. I’ve never had a note-taker, but I’ve been one. It’s ok to ‘shop around’ if someone’s style doesn’t suit you – if you explain it like that they shouldn’t be offended.
8) If the lecturer mentions your condition, and spouts information that is woefully out of date / horrifically condescending / downright inaccurate etc, etc then tell them! (You can go up to them after if you don’t want to make a fuss in front of everyone) Ditto if their presentation has triggered you in some way, it may be worth mentioning (via the disability service if you don't want to do it in person). *
9) Be realistic. If you aren't going to manage a full day of lectures, decide which ones are likely to be interesting / useful, or the opposite, and prioritise. If you can't physically leave, then let yourself zone out - listen to music, read or put your head down and nap (you won't be the only one...)
10) When you’re planning the rest of the day / evening activities, bear in mind that you’ll have been sitting down for a long time. Maybe plan for a nap / lie down when you get home, and then a bit of a walk / swim in the evening.
*Or if they do it right, it's nice to tell them that, too
Please feel free to add to them if you think I've missed something!
Please feel free to add to them if you think I've missed something!
Thursday, 16 June 2011
Applying for DSA
I don't currently claim DSA (or DLA for that matter) and I never have, although I would have been eligible for each of the last 5 years at uni. In the first couple of years I wasn't aware of it (the disability service as my uni is useless, more on that later), then I didn't believe that my mental health problems were significant enough for me to need help (I did).
In terms of current issues, the disability service wouldn't see me until after I had a diagnosis, which meant a big delay, and then I find out that they "don't deal" with benefits. The union offers can "help me fill in the forms", but I don't really rate them, especially compared to some of the websites there are around.
I was diagnosed in January, and I haven't had a break since. I have other things to spend my time on rather than filling in miles of form, and I am very lucky in that my parents are able to support me for the time being. My plan is to apply for DSA over the summer, and to leave DLA until after my finals next year. I want to wait and see what the DLA situation is by then before putting myself through the hassle.
I'm waiting until the summer because due to some quirk of the NHS, I've had a fees bursary this year so needed to apply through them, but next year I thought I'd be back to my LEA, and it all seemed a bit confusing. Not it seems I'm actually having a fees bursary next year as well, in which case it's the NHS all along. Never simple...
I have been told that applying for DSA is actually a relatively pleasant process. I wish I had applied before, but I am trying to focus on the future these days. I'm told that my diagnosis letter is all I'll really need, plus filling in the forms, and then I'll have an assessment.
Having said that, it all got off to a bit of a bad start. (I wish this was a joke but it's not) I emailled the NHS bursary folk saying "I wondered if I could get some information about applying for DSA", and got a reply saying "please return the attached form together with a psychologist's report". I spent half an hour wondering how intense the process must be if they need a psychologist to assess your mental wellbeing first. Until I figured out that the NHS seem to assume that any disabled medical student is dyslexic. I sent a rather snooty email back asking if a rheumatologist letter would do instead, as psychologists don't tend to deal with joint problems.
Even though there's only a year left, there are some things that would be really help.
Have any of you applied for DSA? Did you have a useful experience?
In terms of current issues, the disability service wouldn't see me until after I had a diagnosis, which meant a big delay, and then I find out that they "don't deal" with benefits. The union offers can "help me fill in the forms", but I don't really rate them, especially compared to some of the websites there are around.
I was diagnosed in January, and I haven't had a break since. I have other things to spend my time on rather than filling in miles of form, and I am very lucky in that my parents are able to support me for the time being. My plan is to apply for DSA over the summer, and to leave DLA until after my finals next year. I want to wait and see what the DLA situation is by then before putting myself through the hassle.
I'm waiting until the summer because due to some quirk of the NHS, I've had a fees bursary this year so needed to apply through them, but next year I thought I'd be back to my LEA, and it all seemed a bit confusing. Not it seems I'm actually having a fees bursary next year as well, in which case it's the NHS all along. Never simple...
and supposed to be much better for bendy hands than
horrible rigid splint supports with velcro-y nonsense all over
horrible rigid splint supports with velcro-y nonsense all over
I have been told that applying for DSA is actually a relatively pleasant process. I wish I had applied before, but I am trying to focus on the future these days. I'm told that my diagnosis letter is all I'll really need, plus filling in the forms, and then I'll have an assessment.
Having said that, it all got off to a bit of a bad start. (I wish this was a joke but it's not) I emailled the NHS bursary folk saying "I wondered if I could get some information about applying for DSA", and got a reply saying "please return the attached form together with a psychologist's report". I spent half an hour wondering how intense the process must be if they need a psychologist to assess your mental wellbeing first. Until I figured out that the NHS seem to assume that any disabled medical student is dyslexic. I sent a rather snooty email back asking if a rheumatologist letter would do instead, as psychologists don't tend to deal with joint problems.
Even though there's only a year left, there are some things that would be really help.
Have any of you applied for DSA? Did you have a useful experience?
Labels:
benefits and support,
disabled,
dsa,
eds,
hms,
medic,
medical student,
nhs
Elective (nearly)
It's going to be an interesting few weeks I think. I'm heading to the country of my woman and her kin to spend a month in paediatrics in July. Hooray!
The pros :
1) Kids are awesome
2) Change of scene after 6 months straight placement here
3) If I help feed the babies, I get to cuddle the babies
4) I mentioned that I was disabled when trying to negotiate hours, and the administrator replied offering to sort me out a permit for disabled parking as the staff car park is up steps, without being asked! Miraculous!
5) I get to meet more of my lovely partner's lovely friends
6) Extra paeds practice before finals, and the chance to fit in some ob/gyn maybe, which I haven't covered yet
7) Daft cat gets to come too
8) I get to blow bubbles on placement without getting funny looks (purely for the kids' entertainment you understand)
The cons :
1) [redacted by my future self]
2) We will be travelling heavy, as daft cat can't just be tucked in a bag or something ;)
3) We end here on Friday afternoon, and start there (~8 hours journey away) on Monday morning
4) Little patients puke up on you more than growed up patients
5) The mrs gets her extroverted nature from her folks, and they always seem to worry that little introverted me is sad, when I'm just being
The pros have it I guess! I'm curious to see how a different (but still NHS) trust / hospital handles disabled staff. I imagine it'll be pretty much the same - good/bad/buttugly.
The pros :
1) Kids are awesome
2) Change of scene after 6 months straight placement here
3) If I help feed the babies, I get to cuddle the babies
4) I mentioned that I was disabled when trying to negotiate hours, and the administrator replied offering to sort me out a permit for disabled parking as the staff car park is up steps, without being asked! Miraculous!
5) I get to meet more of my lovely partner's lovely friends
6) Extra paeds practice before finals, and the chance to fit in some ob/gyn maybe, which I haven't covered yet
7) Daft cat gets to come too
8) I get to blow bubbles on placement without getting funny looks (purely for the kids' entertainment you understand)
The cons :
1) [redacted by my future self]
2) We will be travelling heavy, as daft cat can't just be tucked in a bag or something ;)
3) We end here on Friday afternoon, and start there (~8 hours journey away) on Monday morning
4) Little patients puke up on you more than growed up patients
5) The mrs gets her extroverted nature from her folks, and they always seem to worry that little introverted me is sad, when I'm just being
The pros have it I guess! I'm curious to see how a different (but still NHS) trust / hospital handles disabled staff. I imagine it'll be pretty much the same - good/bad/buttugly.
Labels:
disabled,
eds,
electives and SSMs,
hms,
medic,
medical student,
nhs,
paediatrics
Wednesday, 15 June 2011
It's all going to be alright
After a glum few days (as evidenced by the cheery nature of previous posts), I woke up this morning feeling a bit more rested. I made some yumtastic porridge for me and the girl to celebrate.
Every few months I have a meeting with a doctor who is the pastoral support person for the med school. I go in full of thing to ask / cry / complain about, and I come out 20 minutes later knowing that it's all going to be alright. I remain in a zen state for anywhere between an hour and a month, because Dr A* has a gift.
She listens. How simple does that sound? But I mean really, actively, openly listens. I have never felt judged in that room, I have never felt doubted, I have never felt lazy, or incompetent or weak, or any of the other things that doctors regularly make me feel. I have only ever felt valued, and cared for. It is a space that I can celebrate successes without worrying that they make me seem less unwell. I think I cry and laugh in equal measure. She knows my fiancee's name, knows that I'm vegan, knows where I go to church, knows that I love to cook and sing and travel.
Today we were talking about me working less than fulltime. She accepted my decision, knowing that I would have thought it through. I told her that I was most worried about being resented by my colleagues and feeling like I wasn't properly part of the time, and she said "You know, and I know, that you aren't choosing an easy option. Your training will probably be as hard for you as it is for your fulltime colleagues, and it will be protracted." It made me feel better. I hate people thinking that I'm lazy, it's something that I really don't deal with very well.
The gift of being listened to, even when there's very little pratical she can do for me within the structure of the course, is unbelievable. I'm pretty sure that without Dr A I would have left the course a long time ago, when I was struggling with my mental health.
I hope that I can learn from her how to listen, to my patients, and to my family and friends. To truly listen, not to try and jump in with easy solutions, or to shy away from hearing difficult things because there's nothing I can do to change them. If I can one day do for someone what Dr A has done for me, I will be a happy woman.
*as she shall be known (yes, A stands for awesome...)
Every few months I have a meeting with a doctor who is the pastoral support person for the med school. I go in full of thing to ask / cry / complain about, and I come out 20 minutes later knowing that it's all going to be alright. I remain in a zen state for anywhere between an hour and a month, because Dr A* has a gift.
She listens. How simple does that sound? But I mean really, actively, openly listens. I have never felt judged in that room, I have never felt doubted, I have never felt lazy, or incompetent or weak, or any of the other things that doctors regularly make me feel. I have only ever felt valued, and cared for. It is a space that I can celebrate successes without worrying that they make me seem less unwell. I think I cry and laugh in equal measure. She knows my fiancee's name, knows that I'm vegan, knows where I go to church, knows that I love to cook and sing and travel.
Today we were talking about me working less than fulltime. She accepted my decision, knowing that I would have thought it through. I told her that I was most worried about being resented by my colleagues and feeling like I wasn't properly part of the time, and she said "You know, and I know, that you aren't choosing an easy option. Your training will probably be as hard for you as it is for your fulltime colleagues, and it will be protracted." It made me feel better. I hate people thinking that I'm lazy, it's something that I really don't deal with very well.
The gift of being listened to, even when there's very little pratical she can do for me within the structure of the course, is unbelievable. I'm pretty sure that without Dr A I would have left the course a long time ago, when I was struggling with my mental health.
I hope that I can learn from her how to listen, to my patients, and to my family and friends. To truly listen, not to try and jump in with easy solutions, or to shy away from hearing difficult things because there's nothing I can do to change them. If I can one day do for someone what Dr A has done for me, I will be a happy woman.
*as she shall be known (yes, A stands for awesome...)
Labels:
benefits and support,
disabled,
eds,
hms,
medic,
medical student
Tuesday, 14 June 2011
Ten years time
Today the (future) missis and I were chatting about the future. We know where we want to be in 10 years. She wants to be a GP, with a special interest in the clap clinic, I want to be working a couple of days a week in something medical or paediatrics. We want to be living in the area that we live in now, and working in this bruised and beautiful city where we first met. We will be married, and on the path to adoption. We will be doctors, but not only doctors - we will be mothers, friends, spouses, daughters, sisters, Guide leaders and home-makers. When we get married, we will know what it means to love each other when we're sick and when we're well.
We know what we want our lives to look like, but there's just that little bit of extra uncertainty for us. I need to work less than full-time, and we need to live together because she is my carer. Foundation years are complicated for anyone, but there's just that little bit of extra hassle for us. We will have to be more organised, more disciplined and more patient. We will have less money. Where other people are stretched, we will be stretched just that little bit further.
Add up a lifetime of 'just-a-little-bit-harder's, and eventually you reach the straw that breaks the camel's back. We have given up a lot for medicine, but we will not give up everything. We are living day-to-day to make it through these few months, these few years until we graduate, because you can't study medicine part time. We are living day-to-day on the understanding that one day it will be different. On the understanding that one day those things that make life worth living will not be sucked into the vacuum that medicine creates in my energy.
When is enough, enough?
We know what we want our lives to look like, but there's just that little bit of extra uncertainty for us. I need to work less than full-time, and we need to live together because she is my carer. Foundation years are complicated for anyone, but there's just that little bit of extra hassle for us. We will have to be more organised, more disciplined and more patient. We will have less money. Where other people are stretched, we will be stretched just that little bit further.
Add up a lifetime of 'just-a-little-bit-harder's, and eventually you reach the straw that breaks the camel's back. We have given up a lot for medicine, but we will not give up everything. We are living day-to-day to make it through these few months, these few years until we graduate, because you can't study medicine part time. We are living day-to-day on the understanding that one day it will be different. On the understanding that one day those things that make life worth living will not be sucked into the vacuum that medicine creates in my energy.
When is enough, enough?
Monday, 13 June 2011
Going through the motions
I love medicine. The intricacies of each system of the body, the complexity of patients as people and not diseases, the little surge of smile I get when I make a correct diagnosis, or when I find a vein that no one else did ...I even have a favourite bacteria (it's really very clever).
I am good at what I do. I am not the best, I don't get straight As, I can't name all the bones in the hand or remember more than 3 causes of finger clubbing at any one time, I'm not ground-breaking, I'm nothing special, noone's going to name something after me any time soon, but I am good at what I do. I can get a 4 year old to giggle the whole way through an examination, and muster a good enough my-mum-was-a-ward-sister voice to hush the mouthiest of drunks. I have laughed and cried and sung with patients, I have chased a naked patient making a break for freedom, I have watched patients die. I have made tea, and changed nappies, and taken blood. I am often the first face people will see on a new ward.
I love what I do, and I care about my patients. It has cost the NHS hundreds of thousands of pounds to train me to be a doctor, but there is no guarantee that when I graduate I will be able to work. This might sound like an over-dramatic statement, but it is in fact quite realistic. I am certain that I will not manage to complete the foundation programme on a fulltime basis. It is technically possible to complete it on a less-than-fulltime basis, but it means more hoops to jump through (providing evidence etc), and it is on a pro rata basis (as in, I would still need to be fit to do nights and on calls, which remains to be seen).
Medicine is seeming less and less of a viable career path for me. Even if I become a doctor, my career will not be the career that I had expected. This has been a gradual realisation for me over this last year, and I don't think it's really sunk in. Every time I find myself having a conversation about what the future might look like I get really upset. I feel like I have no other marketable skills - or at least no other marketable qualifications - and that anything else will always feel like second best.
I feel like I've withdrawn a bit from medicine - I'm not excited about placements these days, or wanting to go and spend time on the wards. I feel like I'm just doing what I have to and no more, which isn't like me. It's like I can't bear to get excited about it anymore, because it might not be.
It would be worse if I felt myself physically incapable of practising medicine, but I don't. I'm just not able to work within the training programme as it is - but semantics make no difference. Either way I am shut out of my profession.
I feel numb.
I am good at what I do. I am not the best, I don't get straight As, I can't name all the bones in the hand or remember more than 3 causes of finger clubbing at any one time, I'm not ground-breaking, I'm nothing special, noone's going to name something after me any time soon, but I am good at what I do. I can get a 4 year old to giggle the whole way through an examination, and muster a good enough my-mum-was-a-ward-sister voice to hush the mouthiest of drunks. I have laughed and cried and sung with patients, I have chased a naked patient making a break for freedom, I have watched patients die. I have made tea, and changed nappies, and taken blood. I am often the first face people will see on a new ward.
I love what I do, and I care about my patients. It has cost the NHS hundreds of thousands of pounds to train me to be a doctor, but there is no guarantee that when I graduate I will be able to work. This might sound like an over-dramatic statement, but it is in fact quite realistic. I am certain that I will not manage to complete the foundation programme on a fulltime basis. It is technically possible to complete it on a less-than-fulltime basis, but it means more hoops to jump through (providing evidence etc), and it is on a pro rata basis (as in, I would still need to be fit to do nights and on calls, which remains to be seen).
Medicine is seeming less and less of a viable career path for me. Even if I become a doctor, my career will not be the career that I had expected. This has been a gradual realisation for me over this last year, and I don't think it's really sunk in. Every time I find myself having a conversation about what the future might look like I get really upset. I feel like I have no other marketable skills - or at least no other marketable qualifications - and that anything else will always feel like second best.
I feel like I've withdrawn a bit from medicine - I'm not excited about placements these days, or wanting to go and spend time on the wards. I feel like I'm just doing what I have to and no more, which isn't like me. It's like I can't bear to get excited about it anymore, because it might not be.
It would be worse if I felt myself physically incapable of practising medicine, but I don't. I'm just not able to work within the training programme as it is - but semantics make no difference. Either way I am shut out of my profession.
I feel numb.
Friday, 10 June 2011
Double Standard
You can tell a lot about a consultant using one simple test : when they ask you a question, and you get the answer right, what do they do? The nice ones smile and move on to the next mumbling wreck student. The ones with a god complex keep asking questions until you get one wrong.
If they see you the next day, they're the ones who'll ask you the same question. And you'd better get it right.
My GP has known about my official diagnosis since January (and I first told him what I thought it was - correctly - last summer). He has still (evidently) failed to read anything about it. I just don't understand that mindset. I understand being busy, but to my mind being properly educated about how to manage your patients is not an optional part of the job. If he was supervising me and I suggested a management plan for a patient with a condition I'd never heard of, he'd tell me to go away and read up.
I wouldn't even mind, at this point, if he just said 'you've obviously been reading up about it, tell me what you know'. If he just showed an interest in actually managing things.
Still.
He's better than the locum covering for him last week who told me that I would get better by taking ibuprofen, having physio and losing weight.
She nearly stopped my tramadol, which whilst not being hugely effective, is certainly better than paracetamol alone (does she not think I tried that first? no?). She suggested I only take it when the pain is bad (someone's forgotten her basics of pain management). Oh, and then implied that I was lying about the fact that ibuprofen makes me wheezy. I'm not sure what I would gain from that, but whatever floats your conspiracy theory.
She was confident in her proposed 'cure', despite having never heard of my condition, and being unable to even pronounce it.
And then she told me I was depressed. I'm not.
People keep implying or outright saying that my pain is my former mental health problems in a new guise. So much so that the rheumatologist I saw diagnosed with me with depression. I'm not depressed.
The most frustrating thing is that 1) If people think I have a psychological problem, surely they should refer me back to psych services 2) When I was depressed, it took me months to persuade anyone to do anything. Months. They were so desperate not to 'put labels' on anything that I ended up in a complete mess.
I'm sick of the double standards. I'm sick of learning the art of medicine, but being treated by doctors who don't listen, don't care and don't know anything about my condition. I'm sick of not being well enough to work for the NHS because NHS doctors can't get their act together to manage my illness. I'm sick of the bloody NHS, sick of being a medic, sick of being a patient, sick of being too tired to be anything other than a medic and a patient. I'm sick of being treated like a giant pain in the arse, all the time.
If they see you the next day, they're the ones who'll ask you the same question. And you'd better get it right.
My GP has known about my official diagnosis since January (and I first told him what I thought it was - correctly - last summer). He has still (evidently) failed to read anything about it. I just don't understand that mindset. I understand being busy, but to my mind being properly educated about how to manage your patients is not an optional part of the job. If he was supervising me and I suggested a management plan for a patient with a condition I'd never heard of, he'd tell me to go away and read up.
I wouldn't even mind, at this point, if he just said 'you've obviously been reading up about it, tell me what you know'. If he just showed an interest in actually managing things.
Still.
He's better than the locum covering for him last week who told me that I would get better by taking ibuprofen, having physio and losing weight.
She nearly stopped my tramadol, which whilst not being hugely effective, is certainly better than paracetamol alone (does she not think I tried that first? no?). She suggested I only take it when the pain is bad (someone's forgotten her basics of pain management). Oh, and then implied that I was lying about the fact that ibuprofen makes me wheezy. I'm not sure what I would gain from that, but whatever floats your conspiracy theory.
She was confident in her proposed 'cure', despite having never heard of my condition, and being unable to even pronounce it.
And then she told me I was depressed. I'm not.
People keep implying or outright saying that my pain is my former mental health problems in a new guise. So much so that the rheumatologist I saw diagnosed with me with depression. I'm not depressed.
The most frustrating thing is that 1) If people think I have a psychological problem, surely they should refer me back to psych services 2) When I was depressed, it took me months to persuade anyone to do anything. Months. They were so desperate not to 'put labels' on anything that I ended up in a complete mess.
I'm sick of the double standards. I'm sick of learning the art of medicine, but being treated by doctors who don't listen, don't care and don't know anything about my condition. I'm sick of not being well enough to work for the NHS because NHS doctors can't get their act together to manage my illness. I'm sick of the bloody NHS, sick of being a medic, sick of being a patient, sick of being too tired to be anything other than a medic and a patient. I'm sick of being treated like a giant pain in the arse, all the time.
Thursday, 2 June 2011
Intertwined...
I can't get enough of the NHS.
I've been a patient in 11 hospitals (that I can remember), with an appointment for my 12th next week. This is what a sickly and depressed youth will do for a person. I've also been registered at 4 GP surgeries.
Since I started following the medical path, I've been on placement in 10 hospitals and 7 GP surgeries. I may have just about maxed out the local ones, but there's an 11th hospital around the corner for my elective, and 1 that could potentially be thrown into the mix next year.
Some days one fix just isn't enough. I go from placement to GP appointment and back again, I spend a morning reading practice CXRs with my girlfriend while I'm waiting for my cardiologist to get around to me in clinic, I sneak in an early battering from my physio before a 9 o'clock ward round. Mynightmare favourite is when my rheumy is there handing out timetables at the start of a block.
Yeah, I totally can't get enough of the NHS.
But right now I could really use a holiday. Even if as a mere student I couldn't possibly know what tiredness really feels like*. It's been 5 months since we had a holiday longer than a bank holiday weekend, and there's 2 months left to go. That's hard enough for the non-bendy folk.
Considering that all NHS employees have or will at some point be NHS patients, you'd think they'd spend some time trying to persuade us into healthy working practices. Oh no wait... That's a degree in public health and Bambi-esque naivete** talking.
*Spoken by an FY1 coming off 10 days on call. 'I wish' seemed too churlish a response, so I gave her chocolate instead.
** If you don't get this reference, you are in serious need of West Wing. Now.
I've been a patient in 11 hospitals (that I can remember), with an appointment for my 12th next week. This is what a sickly and depressed youth will do for a person. I've also been registered at 4 GP surgeries.
Since I started following the medical path, I've been on placement in 10 hospitals and 7 GP surgeries. I may have just about maxed out the local ones, but there's an 11th hospital around the corner for my elective, and 1 that could potentially be thrown into the mix next year.
Some days one fix just isn't enough. I go from placement to GP appointment and back again, I spend a morning reading practice CXRs with my girlfriend while I'm waiting for my cardiologist to get around to me in clinic, I sneak in an early battering from my physio before a 9 o'clock ward round. My
Yeah, I totally can't get enough of the NHS.
But right now I could really use a holiday. Even if as a mere student I couldn't possibly know what tiredness really feels like*. It's been 5 months since we had a holiday longer than a bank holiday weekend, and there's 2 months left to go. That's hard enough for the non-bendy folk.
Considering that all NHS employees have or will at some point be NHS patients, you'd think they'd spend some time trying to persuade us into healthy working practices. Oh no wait... That's a degree in public health and Bambi-esque naivete** talking.
*Spoken by an FY1 coming off 10 days on call. 'I wish' seemed too churlish a response, so I gave her chocolate instead.
** If you don't get this reference, you are in serious need of West Wing. Now.
Wednesday, 1 June 2011
Bitterness is not my most attractive quality...
On days like today it takes a good 99% of my combined strength, self-control, fears of repercussion and compassion not to beat certain patients with my stick (with disability comes handy weaponry).
Most patients I see are having a really crappy time - and if they weren't before spending 3h59 on an A/E trolley being target practice for hapless med students, they certainly are after. They are frightened, confused and in pain (and if they weren't before...) and most do their best toget away asap help you find out what's wrong with them. [No, no medical problems. Diabetic, hypertensive, COPD-ish, triple bypass recipient - oh, yes, I was forgetting]
I enjoy placements. I enjoy them because of friendly colleagues, conspiratorial old ladies, dazed men who sing to me, and 30 somethings who share the skittles their kids brought them with said hapless med student.
But on days like today, it takes everything in me not to tell the guy with "11 out of 10" abdo pain that radiates everywhere, and comes with the most impressivevoluntary guarding I've ever seen - who has just tackled the 8 flights of stairs back to the ward from a cig break with ease - that I am in pain every day, so I'm maybe not the person to try it on with.
I bite my tongue, of course, because just sometimes there's a massive gunky appendix, or a scarred and sorry liver lurking in that guy's abdomen. And if not that, there must be something else going on. Because who but a hapless med student would spend 3 days hanging around surgical receiving without getting paid for the privilege - unless they hurt, or they need a bed, or some company, or a fix.
Even if they can saunter up the 8 flights, while I wait 15 minutes for the 1 lift in 4 that is cooperating today.
Most patients I see are having a really crappy time - and if they weren't before spending 3h59 on an A/E trolley being target practice for hapless med students, they certainly are after. They are frightened, confused and in pain (and if they weren't before...) and most do their best to
I enjoy placements. I enjoy them because of friendly colleagues, conspiratorial old ladies, dazed men who sing to me, and 30 somethings who share the skittles their kids brought them with said hapless med student.
But on days like today, it takes everything in me not to tell the guy with "11 out of 10" abdo pain that radiates everywhere, and comes with the most impressive
I bite my tongue, of course, because just sometimes there's a massive gunky appendix, or a scarred and sorry liver lurking in that guy's abdomen. And if not that, there must be something else going on. Because who but a hapless med student would spend 3 days hanging around surgical receiving without getting paid for the privilege - unless they hurt, or they need a bed, or some company, or a fix.
Even if they can saunter up the 8 flights, while I wait 15 minutes for the 1 lift in 4 that is cooperating today.
Labels:
clinical placements,
disabled,
eds,
hms,
medic,
medical student,
nhs
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