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.
At Both Ends of the Stethoscope.
Tuesday, 6 November 2012
Tuesday, 2 October 2012
Infection Control Revisited
I survived my first placement =] It went well all things considered. I was worried that I woud be rusty after my year out, or that adjusting to working from the wheelchair would be difficult, but actually it went pretty smoothly. I got some good feedback about my performance, which was a nice confidence boost with finals looming.
The downside was that I was working 8 hour days 4 days a week. I was therefore either in work, resting or asleep. I did a couple of hours of something else once a week - church or coffee with friends, but in general I was exhausted. Still, I knew that to get through this year would need me to compromise a lot in order for my degree to be finished. When I work, I will work part time and I will have some time and energy - that is what is getting me through.
Anyway! Infection control. I have never found an infection control nurse who could give me any sensible advice for those of us who need walking aids etc. So I've come up with my own.
I've already mentioned my approach to ward infection control as a stick user - my policy was to wash my hands then put a glove over the handle of my stick during a patient interaction, then dispose of the glove and wash my hands after. Plus regular wiping down of the stick handle with surface wipes. Bearing in mind that I clean my pen and stethoscope at the same time, which few doctors/students ever do, it was no bad thing.
As a wheelchair user I've been :
- carrying a small squidgy bottle of alcohol gel with me (because the gel is often at the bottom of the patient's bed or even outside the room and I contaminate my hands if I then move to the patient)
- when I need to move around the patient's bed either foot propelling, dragging myself holding onto the bed or just washing my hands again and wheeling
- gelling my hands again while I'm telling the patient what will happen next rather than as I leave (can't push myself with wet hands
- I'm hoping that on DSA I'll get a spare set of wheels to use at the hospital, which is more hygienic and that I can get push rim covers for them to help with grip as I can't wear gloves on the ward
- first thing, last thing and a couple of times in between I wipe my wheels down with surface wipes - also if there's a chance that body fluids have got on them (e.g. in resus)
I've also been wondering about how splints and tape work with bare below the elbows rules. I know that there are disposable oversleeves available for patient contact for those who need them for religious reasons, but I don't know if that would translate into covering splints. And it would be a bloody faff. Some folk have plastic spints that to a certain extent can be wiped down, but most are fastened with velcro or elastic which can't be. Some folk wear splints in spite of the rules - and in fairness bare below the elbows wasn't an evidence based introduction - it was more common sense than anything else - but I don't know anyone who has had a decent conversation about what is / isnt' acceptable. For example, I imagine one or two silver ring splints would be ok, because those could be cleaning like the plain wedding bands staff are allowed to wear - but more couldn't. Any thoughts folks?
The downside was that I was working 8 hour days 4 days a week. I was therefore either in work, resting or asleep. I did a couple of hours of something else once a week - church or coffee with friends, but in general I was exhausted. Still, I knew that to get through this year would need me to compromise a lot in order for my degree to be finished. When I work, I will work part time and I will have some time and energy - that is what is getting me through.
Anyway! Infection control. I have never found an infection control nurse who could give me any sensible advice for those of us who need walking aids etc. So I've come up with my own.
I've already mentioned my approach to ward infection control as a stick user - my policy was to wash my hands then put a glove over the handle of my stick during a patient interaction, then dispose of the glove and wash my hands after. Plus regular wiping down of the stick handle with surface wipes. Bearing in mind that I clean my pen and stethoscope at the same time, which few doctors/students ever do, it was no bad thing.
As a wheelchair user I've been :
- carrying a small squidgy bottle of alcohol gel with me (because the gel is often at the bottom of the patient's bed or even outside the room and I contaminate my hands if I then move to the patient)
- when I need to move around the patient's bed either foot propelling, dragging myself holding onto the bed or just washing my hands again and wheeling
- gelling my hands again while I'm telling the patient what will happen next rather than as I leave (can't push myself with wet hands
- I'm hoping that on DSA I'll get a spare set of wheels to use at the hospital, which is more hygienic and that I can get push rim covers for them to help with grip as I can't wear gloves on the ward
- first thing, last thing and a couple of times in between I wipe my wheels down with surface wipes - also if there's a chance that body fluids have got on them (e.g. in resus)
I've also been wondering about how splints and tape work with bare below the elbows rules. I know that there are disposable oversleeves available for patient contact for those who need them for religious reasons, but I don't know if that would translate into covering splints. And it would be a bloody faff. Some folk have plastic spints that to a certain extent can be wiped down, but most are fastened with velcro or elastic which can't be. Some folk wear splints in spite of the rules - and in fairness bare below the elbows wasn't an evidence based introduction - it was more common sense than anything else - but I don't know anyone who has had a decent conversation about what is / isnt' acceptable. For example, I imagine one or two silver ring splints would be ok, because those could be cleaning like the plain wedding bands staff are allowed to wear - but more couldn't. Any thoughts folks?
Sunday, 23 September 2012
More on In/visibility
After my last post I found this Invisible Illness questionnaire. I found other people's answers really interesting, so I wanted to have a go! It's quite long, so feel free to skip it =] (For a discussion of the fact that I consider my conditions both visible and invisible, see previous blog post)
First though I wanted to say a huge thank you to one of my friends who reads this blog. Yesterday she had us round for dinner and made a FEAST that encompassed all my foody complicatedness (and indeed her own), which made me feel very loved. And it was DELICIOUS.
1. The illness I live with is :
Ehlers-Danlos Syndrome Hypermobility Type (H-EDS) aka Hypermobility Syndrome (HMS) and
Postural Orthostatic Tachycardic Syndrome (POTS) a type of Dysautonomia
Gastroparesis (GP) aka Delayed Gastric Emptying a type of Dysmotility
which are really just more side effects of EDSy collagen.
(and other bits and bobs that are not so relevant)
2. I was diagnosed with it in:
January 2011 (HEDS/HMS)
May 2012 (POTS)
May 2012 (GP)
3. But I have had symptoms since:
Symptoms since birth, became significant aged 12 or so, which would be 2000ish (HEDS/HMS).
Symptoms blend with HEDS/HMS to some extent, but obvious problems (fainting, etc) started in 2008ish (POTS).
Had periods of gastro problems since aged 10, but current issues started in July 2011 (GP).
4. The biggest adjustment:
Difficult question because it has been so gradual - I think my answer would be very different if I'd gone from perfectly healthy to my current state overnight. Maybe the loss of spontaneity - I can't pop to the supermarket or drop in on someone or book a last minute getaway - everything requires extra planning, pacing, paperwork. Since diagnosis, the biggest adjustment has been learning to listen to my body rather than writing myself off as lazy and forcing myself through.
5. Most people assume:
That because I use a wheelchair I can't walk at all and that because I look otherwise well, I'm not ill. Hence "What happened to your legs?" or "Were you in an accident?"
6. The hardest part about mornings are:
the thick-as-treacle fatigue caused by my blood pressure being in my boots overnight and dislocations/subluxes in my sleep meaning I never properly drop off. Coffee is my friend.
7. My Symptoms:
HEDS/HMS - acute pain from subluxations/dislocations, chronic pain from nerves getting irritated about being bashed around in the process, chronic fatigue from working so hard to stop my joints from falling apart, rubbish proprioception which makes me drop things and fall over and healing sllllowwwwlllyyy
POTS - orthostatic intolerance (which means as soon as I stand up all I can think about is sitting down, until I pass out), corpse feet (technical term describing the purple, mottled and swollen nature of my lower appendages), another helping of fatigue and brainfog
GP - nausea is the main symptom, possibly my least favourite of all - also abdo pain and vomiting
8. A gadget I couldn’t live without is:
My laptop (internet access + TV/film distraction). My wheelchair. The microwave.
9. The hardest part about nights are:
Used to be insomnia. Amitriptyline is my wonder drug. Now mostly that when I get up to go to the loo I forget in my grogginess how clumsy and fainty I am and frequently end up face planting.
10. Tablets a day:
22-26
I keep them in my awesome rainbow pillboxes =]
11. Regarding alternative treatments:Depends what you mean by 'alternative'. I'll just give you an idea of my non-drug treatment.
- Pacing of activity and scheduled periods of rest
- The 'GP friendly' diet I follow
- Using the wheelchair helps with pain, fatigue and falls
- My microwave wheatbag is my best friend
- Journalling and mindfulness-based symptom management
- Compression stockings (I even have a bright purple pair from here!)
- Self-administered physio (at the moment focusing on shoulder stability and core strength)
- Increased salt and liquid intake for POTS (10-20g and 3-4l respectively)
- Splinting and taping joints
- Ginger sweets are fantastic for nausea
12. If I had to choose between an invisible illness or visible I would choose:
Hard to say. I think that no impairments/illnesses are truly visible. You may be able to tell from someone's appearance or the equipment they use that they are disabled, but you are never able to tell exactly how this affects them or what their access needs are. To me chronic illness/impairment as isolating whether visible or invisible. The day-to-day frustrations are just a bit different (e.g. not being offered a seat on the bus vs. being expected to explain your health issues to anyone who asks).
13. Regarding working and career:
I am a medical student. I love the medicine and hate the disability-related nonsense involved in every single step of medical school. I would like to work in a hospital-based medical speciality but haven't decided which one. I like working with kids and older people. I am interested in the coordination of medical services for folk with complex chronic illness, especially young people, those at the transition between paediatric and adult services, and management of acute sickness in those with chronic illness.
14. People would be surprised to know:
It is not much easier to navigate the NHS as a patient because of my medical training. I still struggle with being assertive, I still get messed around by doctors. I have no regular consultant follow-up, no physio, no treatment for POTS or GP. I still don't know how to deal with it when I know more about my condition than the doctor I am talking to, especially when the doctor is telling me I am wrong.
15. The hardest thing to accept about my new reality has been:
The logistical nightmare of needing a lot of medical and social support. The paperwork, the endless phonecalls, needing a GP letter to confirm everything I ever say about myself, waiting lists, assessments and more paperwork. Having to be polite to people who've really screwed up because they are the gateway to the services that I need. Being made to feel like I am asking for ridiculously extravagant things, rather than help to wash and dress myself and to put food on the table.
When you have limited energy your capacity for nonsense is dramatically reduced.
16. Something I never thought I could do with my illness that I did was:
I don't know! Learning to drive I guess, although I haven't passed my test.
17. The commercials about my illness:
None of them are well known or well funded enough to have them. I like to think they would be drawn by Stickman Hannah though (that is her official title).
18. Something I really miss doing since I was diagnosed is:
Wandering. I can't walk far at all and I can't self-propel far outside. One day when I have a powerchair I will be able to wander again, and I can't wait!
19. It was really hard to have to give up:
There is little that I have had to give up outright. There is a lot that I have had to significantly cut back on.
I shower once a week, not every day (used to be my way of winding down in the evening, now it's something I dread). Can only play my cello, or sing for a few minutes on a good day (practiced cello 2-4 hours a day as a teenager). I can have one sip of alcohol, but no more and I'm on a very restricted diet (vegan, gluten free, low fat, low fibre).
I can't do anything without being conscious of pacing and of how my body is feeling. Being spontaneous and relatively carefree was hard to lose.
20. A new hobby I have taken up since my diagnosis is:
Crochet. It's a great activity for downtime as long as I rest my wrists regularly.
21. If I could have one day of feeling normal again:
I would probably go for a walk with Beanie and my dad - with a football to kick around as we go (me and my dad used to do this when I was a teenager), have a leisurely lunch, wander through my favourite bit of the city where they have all the craft and foodie shops, then cook dinner for my friends. Nothing complicated.
22. My illness has taught me:
to listen to my body, to stand up for myself, to relax and rest, the importance of a good GP, which of my friends I can really trust and how interdependent human beings are.
23. Want to know a secret:
I have never really wished to get better. I have wished many, many times for much better health and social care.
24. But I love it when people:
Ask what I need from them and then listen when I answer. Call or text to see how I'm doing. Come and visit me at home when I can't get out and then don't comment on the messy flat or me being in my PJs. Remember my access needs when planning get togethers, or check my needs with me.
25. My favourite motto, scripture, quote that gets me through tough times is:
Life is not about waiting for the storm to pass - it's about learning to dance in the rain - Vivanne Grenne
26. When someone is diagnosed I’d like to tell them:
If you have been told for years that you are imagining things or exagerrating, it will take time to learn to trust your body again. Use the internet sensibly - sharing experiences can make you feel less alone, but you have to remember that everyone's experience of these conditions is different - don't scare yourself with the horrow stories of the worst-affected people when your symptoms are relatively mild. Find a GP who listens to you and is willing to learn about your condition and advocate for you. Practice being assertive - it will be one of the most useful skills you learn. Learn to rest and to enjoy caring for your body, rather than feeling guilty about it.
27. Something that has surprised me about living with an illness is:
How much paperwork there is. How weird people get about illness/disability. How badly coordinated healthcare is for folk with complex chronic illness and how difficult it is to access social care services as a young person.
28. The nicest thing someone did for me when I wasn’t feeling well was:
So many things. The day A came straight from work in one hospital to sit with me in A/E at another when I was waiting to be admitted and Beanie was still at work. S who lies down on the floor and cuddles me when I faint, until I come round. And of course Beanie, who cooks for me, nukes my wheatbag tirelessly, goes to fetch me medicine, strokes my back while I puke and refuses to let me take myself too seriously.
29. The fact that you read this list makes me feel:
like you must be nearly as good a procrastinator as me ;)
30. Something I want people to take away from this:
Chronic illness is a difficult path to navigate alone. If you are ill, you will need to find peace with the fact that you need to rely on others more (as everyone does in some way). You will need to learn to be assertive and to listen to your body. If you have a friend who is ill, keep in touch with them - a lot of friends will drift away, don't be one of them.
First though I wanted to say a huge thank you to one of my friends who reads this blog. Yesterday she had us round for dinner and made a FEAST that encompassed all my foody complicatedness (and indeed her own), which made me feel very loved. And it was DELICIOUS.
1. The illness I live with is :
Ehlers-Danlos Syndrome Hypermobility Type (H-EDS) aka Hypermobility Syndrome (HMS) and
Postural Orthostatic Tachycardic Syndrome (POTS) a type of Dysautonomia
Gastroparesis (GP) aka Delayed Gastric Emptying a type of Dysmotility
which are really just more side effects of EDSy collagen.
(and other bits and bobs that are not so relevant)
2. I was diagnosed with it in:
January 2011 (HEDS/HMS)
May 2012 (POTS)
May 2012 (GP)
3. But I have had symptoms since:
Symptoms since birth, became significant aged 12 or so, which would be 2000ish (HEDS/HMS).
Symptoms blend with HEDS/HMS to some extent, but obvious problems (fainting, etc) started in 2008ish (POTS).
Had periods of gastro problems since aged 10, but current issues started in July 2011 (GP).
4. The biggest adjustment:
Difficult question because it has been so gradual - I think my answer would be very different if I'd gone from perfectly healthy to my current state overnight. Maybe the loss of spontaneity - I can't pop to the supermarket or drop in on someone or book a last minute getaway - everything requires extra planning, pacing, paperwork. Since diagnosis, the biggest adjustment has been learning to listen to my body rather than writing myself off as lazy and forcing myself through.
5. Most people assume:
That because I use a wheelchair I can't walk at all and that because I look otherwise well, I'm not ill. Hence "What happened to your legs?" or "Were you in an accident?"
6. The hardest part about mornings are:
the thick-as-treacle fatigue caused by my blood pressure being in my boots overnight and dislocations/subluxes in my sleep meaning I never properly drop off. Coffee is my friend.
7. My Symptoms:
HEDS/HMS - acute pain from subluxations/dislocations, chronic pain from nerves getting irritated about being bashed around in the process, chronic fatigue from working so hard to stop my joints from falling apart, rubbish proprioception which makes me drop things and fall over and healing sllllowwwwlllyyy
POTS - orthostatic intolerance (which means as soon as I stand up all I can think about is sitting down, until I pass out), corpse feet (technical term describing the purple, mottled and swollen nature of my lower appendages), another helping of fatigue and brainfog
GP - nausea is the main symptom, possibly my least favourite of all - also abdo pain and vomiting
8. A gadget I couldn’t live without is:
My laptop (internet access + TV/film distraction). My wheelchair. The microwave.
9. The hardest part about nights are:
Used to be insomnia. Amitriptyline is my wonder drug. Now mostly that when I get up to go to the loo I forget in my grogginess how clumsy and fainty I am and frequently end up face planting.
10. Tablets a day:
22-26
I keep them in my awesome rainbow pillboxes =]
- Pacing of activity and scheduled periods of rest
- The 'GP friendly' diet I follow
- Using the wheelchair helps with pain, fatigue and falls
- My microwave wheatbag is my best friend
- Journalling and mindfulness-based symptom management
- Compression stockings (I even have a bright purple pair from here!)
- Self-administered physio (at the moment focusing on shoulder stability and core strength)
- Increased salt and liquid intake for POTS (10-20g and 3-4l respectively)
- Splinting and taping joints
- Ginger sweets are fantastic for nausea
12. If I had to choose between an invisible illness or visible I would choose:
Hard to say. I think that no impairments/illnesses are truly visible. You may be able to tell from someone's appearance or the equipment they use that they are disabled, but you are never able to tell exactly how this affects them or what their access needs are. To me chronic illness/impairment as isolating whether visible or invisible. The day-to-day frustrations are just a bit different (e.g. not being offered a seat on the bus vs. being expected to explain your health issues to anyone who asks).
13. Regarding working and career:
I am a medical student. I love the medicine and hate the disability-related nonsense involved in every single step of medical school. I would like to work in a hospital-based medical speciality but haven't decided which one. I like working with kids and older people. I am interested in the coordination of medical services for folk with complex chronic illness, especially young people, those at the transition between paediatric and adult services, and management of acute sickness in those with chronic illness.
14. People would be surprised to know:
It is not much easier to navigate the NHS as a patient because of my medical training. I still struggle with being assertive, I still get messed around by doctors. I have no regular consultant follow-up, no physio, no treatment for POTS or GP. I still don't know how to deal with it when I know more about my condition than the doctor I am talking to, especially when the doctor is telling me I am wrong.
15. The hardest thing to accept about my new reality has been:
The logistical nightmare of needing a lot of medical and social support. The paperwork, the endless phonecalls, needing a GP letter to confirm everything I ever say about myself, waiting lists, assessments and more paperwork. Having to be polite to people who've really screwed up because they are the gateway to the services that I need. Being made to feel like I am asking for ridiculously extravagant things, rather than help to wash and dress myself and to put food on the table.
When you have limited energy your capacity for nonsense is dramatically reduced.
16. Something I never thought I could do with my illness that I did was:
I don't know! Learning to drive I guess, although I haven't passed my test.
17. The commercials about my illness:
None of them are well known or well funded enough to have them. I like to think they would be drawn by Stickman Hannah though (that is her official title).
18. Something I really miss doing since I was diagnosed is:
Wandering. I can't walk far at all and I can't self-propel far outside. One day when I have a powerchair I will be able to wander again, and I can't wait!
19. It was really hard to have to give up:
There is little that I have had to give up outright. There is a lot that I have had to significantly cut back on.
I shower once a week, not every day (used to be my way of winding down in the evening, now it's something I dread). Can only play my cello, or sing for a few minutes on a good day (practiced cello 2-4 hours a day as a teenager). I can have one sip of alcohol, but no more and I'm on a very restricted diet (vegan, gluten free, low fat, low fibre).
I can't do anything without being conscious of pacing and of how my body is feeling. Being spontaneous and relatively carefree was hard to lose.
20. A new hobby I have taken up since my diagnosis is:
Crochet. It's a great activity for downtime as long as I rest my wrists regularly.
21. If I could have one day of feeling normal again:
I would probably go for a walk with Beanie and my dad - with a football to kick around as we go (me and my dad used to do this when I was a teenager), have a leisurely lunch, wander through my favourite bit of the city where they have all the craft and foodie shops, then cook dinner for my friends. Nothing complicated.
22. My illness has taught me:
to listen to my body, to stand up for myself, to relax and rest, the importance of a good GP, which of my friends I can really trust and how interdependent human beings are.
23. Want to know a secret:
I have never really wished to get better. I have wished many, many times for much better health and social care.
24. But I love it when people:
Ask what I need from them and then listen when I answer. Call or text to see how I'm doing. Come and visit me at home when I can't get out and then don't comment on the messy flat or me being in my PJs. Remember my access needs when planning get togethers, or check my needs with me.
25. My favourite motto, scripture, quote that gets me through tough times is:
Life is not about waiting for the storm to pass - it's about learning to dance in the rain - Vivanne Grenne
26. When someone is diagnosed I’d like to tell them:
If you have been told for years that you are imagining things or exagerrating, it will take time to learn to trust your body again. Use the internet sensibly - sharing experiences can make you feel less alone, but you have to remember that everyone's experience of these conditions is different - don't scare yourself with the horrow stories of the worst-affected people when your symptoms are relatively mild. Find a GP who listens to you and is willing to learn about your condition and advocate for you. Practice being assertive - it will be one of the most useful skills you learn. Learn to rest and to enjoy caring for your body, rather than feeling guilty about it.
27. Something that has surprised me about living with an illness is:
How much paperwork there is. How weird people get about illness/disability. How badly coordinated healthcare is for folk with complex chronic illness and how difficult it is to access social care services as a young person.
28. The nicest thing someone did for me when I wasn’t feeling well was:
So many things. The day A came straight from work in one hospital to sit with me in A/E at another when I was waiting to be admitted and Beanie was still at work. S who lies down on the floor and cuddles me when I faint, until I come round. And of course Beanie, who cooks for me, nukes my wheatbag tirelessly, goes to fetch me medicine, strokes my back while I puke and refuses to let me take myself too seriously.
29. The fact that you read this list makes me feel:
like you must be nearly as good a procrastinator as me ;)
30. Something I want people to take away from this:
Chronic illness is a difficult path to navigate alone. If you are ill, you will need to find peace with the fact that you need to rely on others more (as everyone does in some way). You will need to learn to be assertive and to listen to your body. If you have a friend who is ill, keep in touch with them - a lot of friends will drift away, don't be one of them.
Sunday, 16 September 2012
(In)visible illness
So it's the very last day of Invisible Illness Awareness week. Nothing like leaving things until the last minute =]
I wanted to share with you a witty yet moving account of my experiences with visible and invisible illness, but last night's bout of painsomnia probably put pay to that. Suffice it to say, if what follows is actually understandable English (or really any language of any kind) we're chalking it up to a win, mmmk?
On the face of things I might not seem to have a lot to say on the subject of invisible illness, what with the wheelchair being a bit of a giveaway and everything, but it turns out I have a thought or two squirelled away for a rainy day.
Firstly, I (as with many others whose impairments/illnesses are now visible) lived with invisible illness for many years - in my case 10 years of invisible illness that had a significant impact on my day-to-day life (plus minor chronic health issues since the word 'go').
My invisible health conditions morphed over the years from fatigue + depression, to fatigue + fainting + joint pain / instability and as gradually more splints, meds and mobility aids came into the picture it all became more and more visible.
My second point is that although as a wheelchair user I am obviously disabled, I still consider myself to be living with invisible illness.
Part of this is because of the assumptions that people make about why people (especially young people) use wheelchairs. I get a lot of 'what happened to your legs?' or 'when was your accident'. People see me using my wheelchair and I assume that I can't walk - to the point of someone passing comment when I stand up at least once a day.
True, part of the reason I use my chair is because I can't walk very far at all, and because it is a wobbly and precarious experience - but I don't only use the chair because of my mobility.
I also use my wheelchair because of the pain that walking causes me, because of the dizziness and fatigue that standing causes, because of the poor muscle tone that makes sitting in other chairs without postural support absolutely exhausting. People don't see that when they look at me. Nor do they see the brainfog, nausea, insomnia, heat intolerance etc.
Also, when I'm not using my wheelchair (or my assortment of splints, sticks or monitors) I don't look visibly ill as long as I'm sitting or lying down. Unless you know what to look for that is (purple feet, strange contortions and transparent skin being some of my telltale signs to those in the know). In this way my illnesses are relatively invisible compared to someone living with a condition such as Down's Syndrome that can be fairly recognisable to the general public.
In some ways these distinctions don't really matter. There are comparative advantages and challenges to both invisible and visible illness/impairment. Chances are that most people you know will at some point have an invisible health condition - high blood pressure, depression, MS, endometriosis (yay! I can still remember 4 whole conditions after my year out) - you would think this would mean that we'd be better at expecting this.
Better at planning events to be intrinsically accessible rather than bolting access on at the end (and remembering that access =/= wheelchair accessible, even if there were such a thing as generically accessible to all wheelchair users). Better at asking people how they're doing and really taking the time to listen. Better at checking in with folks who've dropped off the radar and continuing to visit a sick friend in the hospital when they're still there 3 months after they were admitted. And, for what it's worth, better at talking about health, illness and disability without staring, pointing or asking 'what happened to your legs?'.
Chronic illness can be really isolating and complicated. When I was first ill, a lot of people didn't know and a lot of those who did found it awkward / difficult to talk about my mental health problems. That stigma made it hard for me to be open about my experiences. These days I think that my wheelchair sometimes creates a visible barrier between me and other young people who are not disabled. It is a constant reminder to them that my life is different to their experiences I think. I am very lucky to have a few close friends who know and care about all the health nonsense that's going on. They mostly have health issues of their own so we have a shorthand to a certain extent.
It's a strange thing, visible invisibility. Especially for those of us with rare diseases that most doctors couldn't spot. I was just wondering, really, if anyone else feels the same way?
I wanted to share with you a witty yet moving account of my experiences with visible and invisible illness, but last night's bout of painsomnia probably put pay to that. Suffice it to say, if what follows is actually understandable English (or really any language of any kind) we're chalking it up to a win, mmmk?
On the face of things I might not seem to have a lot to say on the subject of invisible illness, what with the wheelchair being a bit of a giveaway and everything, but it turns out I have a thought or two squirelled away for a rainy day.
Firstly, I (as with many others whose impairments/illnesses are now visible) lived with invisible illness for many years - in my case 10 years of invisible illness that had a significant impact on my day-to-day life (plus minor chronic health issues since the word 'go').
My invisible health conditions morphed over the years from fatigue + depression, to fatigue + fainting + joint pain / instability and as gradually more splints, meds and mobility aids came into the picture it all became more and more visible.
My second point is that although as a wheelchair user I am obviously disabled, I still consider myself to be living with invisible illness.
Part of this is because of the assumptions that people make about why people (especially young people) use wheelchairs. I get a lot of 'what happened to your legs?' or 'when was your accident'. People see me using my wheelchair and I assume that I can't walk - to the point of someone passing comment when I stand up at least once a day.
True, part of the reason I use my chair is because I can't walk very far at all, and because it is a wobbly and precarious experience - but I don't only use the chair because of my mobility.
I also use my wheelchair because of the pain that walking causes me, because of the dizziness and fatigue that standing causes, because of the poor muscle tone that makes sitting in other chairs without postural support absolutely exhausting. People don't see that when they look at me. Nor do they see the brainfog, nausea, insomnia, heat intolerance etc.
Also, when I'm not using my wheelchair (or my assortment of splints, sticks or monitors) I don't look visibly ill as long as I'm sitting or lying down. Unless you know what to look for that is (purple feet, strange contortions and transparent skin being some of my telltale signs to those in the know). In this way my illnesses are relatively invisible compared to someone living with a condition such as Down's Syndrome that can be fairly recognisable to the general public.
In some ways these distinctions don't really matter. There are comparative advantages and challenges to both invisible and visible illness/impairment. Chances are that most people you know will at some point have an invisible health condition - high blood pressure, depression, MS, endometriosis (yay! I can still remember 4 whole conditions after my year out) - you would think this would mean that we'd be better at expecting this.
Better at planning events to be intrinsically accessible rather than bolting access on at the end (and remembering that access =/= wheelchair accessible, even if there were such a thing as generically accessible to all wheelchair users). Better at asking people how they're doing and really taking the time to listen. Better at checking in with folks who've dropped off the radar and continuing to visit a sick friend in the hospital when they're still there 3 months after they were admitted. And, for what it's worth, better at talking about health, illness and disability without staring, pointing or asking 'what happened to your legs?'.
Chronic illness can be really isolating and complicated. When I was first ill, a lot of people didn't know and a lot of those who did found it awkward / difficult to talk about my mental health problems. That stigma made it hard for me to be open about my experiences. These days I think that my wheelchair sometimes creates a visible barrier between me and other young people who are not disabled. It is a constant reminder to them that my life is different to their experiences I think. I am very lucky to have a few close friends who know and care about all the health nonsense that's going on. They mostly have health issues of their own so we have a shorthand to a certain extent.
It's a strange thing, visible invisibility. Especially for those of us with rare diseases that most doctors couldn't spot. I was just wondering, really, if anyone else feels the same way?
Thursday, 9 August 2012
Caught in the Middle
I spent 24 hours in the local surgical admissions unit this week getting some much needed IV fluids and continuing my search for the perfect anti-emetic.
I'd spent quite a lot of time on this ward during placement and I knew a couple of the junior doctors. The staff all knew that I was a medical student (every medical letter written about me begins 'this 24 year old medical student' but that's a whole other post) and so (curtains not being soundproof) did the other women in my ward.
In this way I am never just a patient, I am a patient that is a medical student. It comes with certain expectations - I will not complain when things are delayed because I know how chaotic it is to work a receiving shift, I won't go out for a cigarette with the others, I will be a good historian even at midnight when I'm really sick. From the outside those expectations look different I think - my roommates couldn't believe that as a medical student I wasn't given a private room for example.
In the same way, now I use the wheelchair and am in other ways visibly impaired I am never just a medical student. I am a medical student that is a patient. Some consultants think this gives them permission to ask me intrusive personal questions 'so what's wrong with you then?'. Others think that this will make me super-empathetic towards patients or that I chose to be a doctor because of my experiences as a patient.
There is overlap and divide between these two identities.
My experience as an acute patient was also very different to my roommates for another reason - they were otherwise pretty healthy. To them this was an acute episode of ill health which could be expected to resolve completely. To me it was an exacerbation of an existing condition, which had a knock-on effect on my other conditions. I couldn't take the first two medications suggested because they would interact with my other meds. The hospital could not cater to my complex dietary needs. I had to try and rest without the special cushions that I have at home to hold my joints in place overnight. Hospitals are not designed to care for patients with complex chronic conditions, with the possible exception of well-run care of the elderly units.
Our expectations of treatment were a lot different - they were expecting to be all better by the time they went home. I left as soon as my symptoms reached a level where I knew I could manage at home. When I told one of them that I had experienced moderate to severe nausea constantly for over a year now she was completely horrified.
I just don't know how to integrate my experiences. How to use my medical knowledge without irritating my doctors, how to treat patients better because of what I've learned from being sick. It is a work in progress and I imagine it always will be.
I'd spent quite a lot of time on this ward during placement and I knew a couple of the junior doctors. The staff all knew that I was a medical student (every medical letter written about me begins 'this 24 year old medical student' but that's a whole other post) and so (curtains not being soundproof) did the other women in my ward.
In this way I am never just a patient, I am a patient that is a medical student. It comes with certain expectations - I will not complain when things are delayed because I know how chaotic it is to work a receiving shift, I won't go out for a cigarette with the others, I will be a good historian even at midnight when I'm really sick. From the outside those expectations look different I think - my roommates couldn't believe that as a medical student I wasn't given a private room for example.
In the same way, now I use the wheelchair and am in other ways visibly impaired I am never just a medical student. I am a medical student that is a patient. Some consultants think this gives them permission to ask me intrusive personal questions 'so what's wrong with you then?'. Others think that this will make me super-empathetic towards patients or that I chose to be a doctor because of my experiences as a patient.
There is overlap and divide between these two identities.
My experience as an acute patient was also very different to my roommates for another reason - they were otherwise pretty healthy. To them this was an acute episode of ill health which could be expected to resolve completely. To me it was an exacerbation of an existing condition, which had a knock-on effect on my other conditions. I couldn't take the first two medications suggested because they would interact with my other meds. The hospital could not cater to my complex dietary needs. I had to try and rest without the special cushions that I have at home to hold my joints in place overnight. Hospitals are not designed to care for patients with complex chronic conditions, with the possible exception of well-run care of the elderly units.
Our expectations of treatment were a lot different - they were expecting to be all better by the time they went home. I left as soon as my symptoms reached a level where I knew I could manage at home. When I told one of them that I had experienced moderate to severe nausea constantly for over a year now she was completely horrified.
I just don't know how to integrate my experiences. How to use my medical knowledge without irritating my doctors, how to treat patients better because of what I've learned from being sick. It is a work in progress and I imagine it always will be.
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.
Subscribe to:
Comments (Atom)