Hello!
There is no point trying to play catch up after all this time so I'll just dive right on in!
This morning, with 7 weeks left until I'm supposed to start work I had an occupational health assessment. I was dreading it! So far there's been the med school handing over to the deanery meeting when I was asked (having just passed the same exams as everyone else) whether I felt I could *really* expect to work to the speed and standard of my colleagues and that I would have to guide them because they're not used to dealing with "people like me". Then because I had to take the year out because access provisions move at glacier pace I have to be investigated by the Gee Em See before they'll grant me provisional registration and they can't guarantee that if the relevant people don't get back to them promptly might not happen before I'm supposed to start work - and because the health board can take 3 months to decide on less than full time training there could be a delay which is in no way my fault. Oh, and my house burned down 3 days after finals.
I just want to do the job I have spent 7 years training for and have qualified for and have in fact been given (but not quite because all of the above).
So, today I saw Dr Occy Health. He took a thorough history - asked which type of Hypermobility Syndrome I have and made the link between dysautonomia and gastroparesis all by himself. He was horrified by all of the aforementioned nonsense and took names and numbers to chase things up.he thanked my partner for coming rather than being strangely confused that someone may need moral support at a big deal appointment. He took a fatigue and pain history which is not only rare of itself but he did it well and in a way that made it sound like he believed I experienced those things. I could go on but you get the idea.
If you are reading this and don't think 'wow!' you either are or have a good doctor. It shouldn't be worthy of comment when an appointment leaves you feeling better, or at least not worse, than you did when you arrived.
7 weeks to go.
At Both Ends of the Stethoscope.
Wednesday, 19 June 2013
Tuesday, 9 April 2013
Post Finals Update
So posting here fell into a finals shaped hole. The good news is that I have emerged with a pass, the not so good news is that 3 days after they finished there was a big fire in our building and so we are out of the flat awaiting cleaning/redecoration/replacement of soft furnishings etc. I'll be posting about that experience at a later date. Suffice it to say, it was pretty traumatic and is still quite rubbish but I'm in one piece as are my darling wifelet and kittycat and we have absolutely beyond amazing friends who have carried us through all the nonsense. And as you'll know there is a lot of of nonsense when insurance companies get involved in anything.
Here is a canter through my exam period and the lessons I learned from it.
The good :
- Starting early. I knew I wouldn't be able to cram in the last few weeks like other folk so I planned around it. Our 4th and 5th years are one unit curriculum wise, so from the start of 4th year I began studying. This may sound ridiculous, but what I mean is that during each block I studied a couple of hours every evening, really getting into the speciality I was doing and making good notes that suit my revision style. This meant that for the most part revision was actually revision. A lot of folk took 4th year as a year off out-of-hours studying but it wouldn't have worked for me (it worked really well for a lot of them - there is no single right way to approach things). My studying didn't actually have quite the same intensity ramp up in the last few months - I just continued spending a couple of hours every evening, admittedly infused with more adrenaline! My need for rest however did ramp up - that was more that my condition is worse now than during 4th year. I spent a lot of time resting (to those of you who have the urge to say 'ooh, lucky' please don't - whilst I enjoy a duvet day as much as the next person, enforced rest that is isolating and restrictive on your other activities is not fun)
- Focusing on self care. Taking full days off as needed, eating sensible food (for which I have to thank my wifelet), letting myself have a good cry from time to time, keeping in touch with friends via text when I didn't have enough energy to see them and having a stop time every evening. The best self care was accidental - two of our dear friends got married in the middle of nowhere in between writtens and OSCEs and we went there for a few days. The change of scene and the fresh air were incredible - and because I did some work while there I didn't panic about not being at my desk (read - in my bed) at all.
- It was the first time I'd have my special exam arrangements in place and having a separate room to allow me to wiggle and pop and stretch to my heart's content without distracting folks plusextra sufficient time (this reference comes from the most amazing series of blog posts on access and education that I have completely lost track of - if you know of the link please comment!) to complete the exam at a speed my poorly fingers would allow.
- Having a study ethos rather than a study plan. In days gone by I've spent many hours making/colouring coding a detailed study plan, only to fall behind or change things up and having to do the whole thing again. This time around I came up with some principles to read when I was unsure of what to study or feeling panicked about what I hadn't covered yet :
1) I will never cover everything
2) Doing past papers is useful, because it is a guide about what kind of depth to go into and what kind of questions may be asked / what kind of answers are expected
3) Identify the major conditions and presentations within a subject and cover the relevant material about those well (for conditions outline definition/aetiology/pathophysiology/clinical features/diagnosis/management/prognosis and for presentations outline differential/key points from history and examination including red flags/investigations and management)
4) Regularly write a list of 5-10 things that you would hate to come up. As you go on this will get more specific (from 'ENT' or 'urology' to 'cerebellar examination' or 'TB pathophysiology'). Resist the urge to make the list longer.
5) Every time you think 'I know nothing about ...' list 10 thing you know about it. (e.g. ENT : thyroid related lumps move on swallowing, big tonsils/adenoids can cause sleep apnea in kids, grommets are tubes through the ear drum). Anything. It doesn't mean you don't need to study, but catastrophising isn't anyone's friend.
- Thinking 'I'm not the best, but I'm not the worst' on loop. Thinking that even if I failed, managing to complete the exams was a massive achievement in itself. Knowing people who passed last year and the level of study that they did and the level of knowledge that they had was very helpful. It gave me something concrete and reassuring to compare myself to. Very few people fail finals but everyone is terrified that it will be them.
The bad :
- No study leave meaning that we were on placement full time right up until the exams. As someone who will need to work part time due to fatigue etc, this was really tough. I think it would have been easier if those organising our placements had taken this into account, but I was being told right up until the end that spending time in the library and not on the wards was a waste of time. At that point it just isn't. Yes, you need to be seeing patients, but if you've had 2 hours of bedside teaching and then spent another few hours seeing several more patients, retreating to the library at the start of afternoon visiting is actually a pretty sensible way to consolidate what you've learned.
- Spending the first minute of every OSCE station having to rearrange furniture so I could fit in the room / get to the patient or task. I think for PACES or whatever I would ask for there to be someone who would go in the changeover gap between stations to sort that out for me. They knew there was a wheelie on the circuit, but noone had really given it much thought (understandably as they'd not been asked to). The worst was the first station where it was impossible for me to get to the patient without lifting furniture so I had to bum shuffle across the bed (patient was on a chair at the other side) to get to them - not the most dignified entrance but I passed the station.
- All of the admin nonsense that falls during exam time. We had to submit a big portfolio of case reports and essays and stuff a couple of weeks before, then there was the SJT nonsense and job ranking and all of these things. All necessary and unavoidable (except for the SJT saga) but still annoying. Also more DSA related nonsense (still don't have any of the equipment and the report when finally submitted 5 months late missed off half the stuff we'd discussed).
- We had 4 OSCEs spread over 2 weeks. They are utterly exhausting in a way that nothing else is. I finished one in serious doubt as to whether I would literally be able to make it home.
The rest :
- Practicing cardio exam on the cat "Skye I'm just feeling your radial pulse. Skye do you have a radial pulse? Skye do you have a radius?"
- Living in scrub bottoms, giant protest Tshirts and my polar bear dressing gown
- Eating mashed potato for 2 meals a day for nearly 3 weeks
- A certain person giving me the fright of my life by blogging good luck for exams a day early! (but otherwise being utterly angelic and wonderful - happy birthday!)
- Another friend getting up during their annual leave to go with me for the start of my written exams to keep me company because the wifelet was working
- Taking a study break to be fed radioactive cornflakes while inside a space ship (aka having a gastric emptying scan)
- Answering a full past paper question worth 20 marks entirely right gained entirely from knowledge I only had from watching ER
- Answering a question on the treatment of croup with "I don't know, but Anne of Green Gables used to swear by belladonna"
Here is a canter through my exam period and the lessons I learned from it.
The good :
- Starting early. I knew I wouldn't be able to cram in the last few weeks like other folk so I planned around it. Our 4th and 5th years are one unit curriculum wise, so from the start of 4th year I began studying. This may sound ridiculous, but what I mean is that during each block I studied a couple of hours every evening, really getting into the speciality I was doing and making good notes that suit my revision style. This meant that for the most part revision was actually revision. A lot of folk took 4th year as a year off out-of-hours studying but it wouldn't have worked for me (it worked really well for a lot of them - there is no single right way to approach things). My studying didn't actually have quite the same intensity ramp up in the last few months - I just continued spending a couple of hours every evening, admittedly infused with more adrenaline! My need for rest however did ramp up - that was more that my condition is worse now than during 4th year. I spent a lot of time resting (to those of you who have the urge to say 'ooh, lucky' please don't - whilst I enjoy a duvet day as much as the next person, enforced rest that is isolating and restrictive on your other activities is not fun)
- Focusing on self care. Taking full days off as needed, eating sensible food (for which I have to thank my wifelet), letting myself have a good cry from time to time, keeping in touch with friends via text when I didn't have enough energy to see them and having a stop time every evening. The best self care was accidental - two of our dear friends got married in the middle of nowhere in between writtens and OSCEs and we went there for a few days. The change of scene and the fresh air were incredible - and because I did some work while there I didn't panic about not being at my desk (read - in my bed) at all.
- It was the first time I'd have my special exam arrangements in place and having a separate room to allow me to wiggle and pop and stretch to my heart's content without distracting folks plus
- Having a study ethos rather than a study plan. In days gone by I've spent many hours making/colouring coding a detailed study plan, only to fall behind or change things up and having to do the whole thing again. This time around I came up with some principles to read when I was unsure of what to study or feeling panicked about what I hadn't covered yet :
1) I will never cover everything
2) Doing past papers is useful, because it is a guide about what kind of depth to go into and what kind of questions may be asked / what kind of answers are expected
3) Identify the major conditions and presentations within a subject and cover the relevant material about those well (for conditions outline definition/aetiology/pathophysiology/clinical features/diagnosis/management/prognosis and for presentations outline differential/key points from history and examination including red flags/investigations and management)
4) Regularly write a list of 5-10 things that you would hate to come up. As you go on this will get more specific (from 'ENT' or 'urology' to 'cerebellar examination' or 'TB pathophysiology'). Resist the urge to make the list longer.
5) Every time you think 'I know nothing about ...' list 10 thing you know about it. (e.g. ENT : thyroid related lumps move on swallowing, big tonsils/adenoids can cause sleep apnea in kids, grommets are tubes through the ear drum). Anything. It doesn't mean you don't need to study, but catastrophising isn't anyone's friend.
- Thinking 'I'm not the best, but I'm not the worst' on loop. Thinking that even if I failed, managing to complete the exams was a massive achievement in itself. Knowing people who passed last year and the level of study that they did and the level of knowledge that they had was very helpful. It gave me something concrete and reassuring to compare myself to. Very few people fail finals but everyone is terrified that it will be them.
The bad :
- No study leave meaning that we were on placement full time right up until the exams. As someone who will need to work part time due to fatigue etc, this was really tough. I think it would have been easier if those organising our placements had taken this into account, but I was being told right up until the end that spending time in the library and not on the wards was a waste of time. At that point it just isn't. Yes, you need to be seeing patients, but if you've had 2 hours of bedside teaching and then spent another few hours seeing several more patients, retreating to the library at the start of afternoon visiting is actually a pretty sensible way to consolidate what you've learned.
- Spending the first minute of every OSCE station having to rearrange furniture so I could fit in the room / get to the patient or task. I think for PACES or whatever I would ask for there to be someone who would go in the changeover gap between stations to sort that out for me. They knew there was a wheelie on the circuit, but noone had really given it much thought (understandably as they'd not been asked to). The worst was the first station where it was impossible for me to get to the patient without lifting furniture so I had to bum shuffle across the bed (patient was on a chair at the other side) to get to them - not the most dignified entrance but I passed the station.
- All of the admin nonsense that falls during exam time. We had to submit a big portfolio of case reports and essays and stuff a couple of weeks before, then there was the SJT nonsense and job ranking and all of these things. All necessary and unavoidable (except for the SJT saga) but still annoying. Also more DSA related nonsense (still don't have any of the equipment and the report when finally submitted 5 months late missed off half the stuff we'd discussed).
- We had 4 OSCEs spread over 2 weeks. They are utterly exhausting in a way that nothing else is. I finished one in serious doubt as to whether I would literally be able to make it home.
The rest :
- Practicing cardio exam on the cat "Skye I'm just feeling your radial pulse. Skye do you have a radial pulse? Skye do you have a radius?"
- Living in scrub bottoms, giant protest Tshirts and my polar bear dressing gown
- Eating mashed potato for 2 meals a day for nearly 3 weeks
- A certain person giving me the fright of my life by blogging good luck for exams a day early! (but otherwise being utterly angelic and wonderful - happy birthday!)
- Another friend getting up during their annual leave to go with me for the start of my written exams to keep me company because the wifelet was working
- Taking a study break to be fed radioactive cornflakes while inside a space ship (aka having a gastric emptying scan)
- Answering a full past paper question worth 20 marks entirely right gained entirely from knowledge I only had from watching ER
- Answering a question on the treatment of croup with "I don't know, but Anne of Green Gables used to swear by belladonna"
Thursday, 10 January 2013
Plodding along
Just a brief update for those who follow my medical happenings here. Final year is hard going physically and emotionally. I am on my final placement before exams just now and I still don't have any of my DSA funding/equipment in place. Working/studying fulltime is exhausting, but won't be for much longer.
I'm scared about finals in a vague way. Scared more about my body falling apart than of screwing up academically. I can't manage to study for infinite hours in the day, but I don't think that's a bad thing. After a certain point passing finals is about practice and holding your nerve rather than stuffing your fit to burst. Well, that's what the folks who've already done them tell me!
I would say I'm please to be approaching the end of all the disability nonsense in the med school, but I don't anticipate work being any better to be honest.
My dysautonomia has been more problematic. I don't know if that's fatigue or progression, but I've been having 'attacks' of very severe symptoms that are quite scary and horrible. On the up side a gastro is finally looking into the nausea.
This is not a chirpy post, but it's where I'm at just now. I'm very tired, but still going just about.
I'm scared about finals in a vague way. Scared more about my body falling apart than of screwing up academically. I can't manage to study for infinite hours in the day, but I don't think that's a bad thing. After a certain point passing finals is about practice and holding your nerve rather than stuffing your fit to burst. Well, that's what the folks who've already done them tell me!
I would say I'm please to be approaching the end of all the disability nonsense in the med school, but I don't anticipate work being any better to be honest.
My dysautonomia has been more problematic. I don't know if that's fatigue or progression, but I've been having 'attacks' of very severe symptoms that are quite scary and horrible. On the up side a gastro is finally looking into the nausea.
This is not a chirpy post, but it's where I'm at just now. I'm very tired, but still going just about.
Wednesday, 5 December 2012
In the Middle : Biopsychosocial Model
This is an interesting topic for me as a medical student and a disabled person, because both groups use the phrase to mean different things, one is seen as a positive thing and the other a negative. I thought I would write this post as a 'translation' of sorts - because I have seen it lead to misunderstandings or arguments. It is almost a 'false friend' situation for the linguists amongst you.
The biopsychosocial model (henceforth BPS) has an understandably bad reputation amongst disabled people. It has been used by many to suggest that people are not impaired by biological disease, but rather by psychological beliefs that they are sick, and therefore as an excuse to deny medical treatment, insurance coverage or benefits applications. These alleged psychological beliefs are of course not deemed 'proper disease' enough to merit psychological treatment, so people are left being told that their illness is 'all in their head' and therefore they just need to pull themselves together.
Before my diagnoses I was frequently told that fatigue, joint pain, dizziness etc was all in my head and therefore that I should ignore it and push through. I asked on several occassions why, if I had a psychological disease I was not being given psychological treatment. (Doctors need to get better at saying 'I don't know'.) There is obviously a lot of hurt and frustration felt by sick/disabled people who have been dealt with in this way. Or, people are 'diagnosed' with social problems, which often intertwines with the 'illness behaviour' narrative - e.g. you are not working therefore you sit at home and worry yourself into being ill, for which the obvious cure is to threaten people on benefits to the point that they no longer live the comfortable, shelterd life which the government seems to think benefit claimants have.
It is however, used in another way. The BPS model has been introduced into some medical schools / postgraduate training as a way to remind doctors that there is more to caring for a patient than the medical model. The medical model is basically 'you have broken your arm, we need to pin it and put it in a cast' or 'you have an infection, you need antibiotics'. It is very much the model that you want doctors to be using when you are being resuscitated after a car crash, but once the immediate danger has passed there are other aspects to consider.
So, as a reminder that a biological disease process (let's say Parkinson's) will have more than purely biological effects. It has psychological effects - in the case of Parkinson's both psychological symptoms such as depression and the general 'reactive' psychological effects that can come with any chronic illness - adjustment to new symptoms, traumatic medical experiences etc. There are also many social effects that come from having a chronic illness - the stigma of appearing drunk for example, as some with Parkinson's can do, the fact that the world is not accessible and is therefore disabling (so we include 'social model' thinking which states that people are not intrinsically disabled, they are disabled by their environment - e.g. stairs with no lift alternative disable some folk with mobility impairments, expectations that a normal working day is 9-5 5 days a week disables folk with chronic fatigue or frequent hospitalisations/medical appointments).
The BPS model was introduced in this context to remind doctors that it is not necessarily enough to give folk some tablets and send them away. The multidisciplinary team (ooh, I get points for using the buzzwords!) is given the recognition it deserves in this context - OTs, Social Workers, chronic illness psychologists (yes, I'm told they do actually exist but I've never seen one in the wild).
In my mind the BPS model as applied this way is a very good thing for chronically sick/disabled people, because it is a much more 'holistic' model than the medical model used in isolation (and I hope it's clear that I think the 'it's all in your head' use of the BPS model is very damaging).
Any thoughts?
The biopsychosocial model (henceforth BPS) has an understandably bad reputation amongst disabled people. It has been used by many to suggest that people are not impaired by biological disease, but rather by psychological beliefs that they are sick, and therefore as an excuse to deny medical treatment, insurance coverage or benefits applications. These alleged psychological beliefs are of course not deemed 'proper disease' enough to merit psychological treatment, so people are left being told that their illness is 'all in their head' and therefore they just need to pull themselves together.
Before my diagnoses I was frequently told that fatigue, joint pain, dizziness etc was all in my head and therefore that I should ignore it and push through. I asked on several occassions why, if I had a psychological disease I was not being given psychological treatment. (Doctors need to get better at saying 'I don't know'.) There is obviously a lot of hurt and frustration felt by sick/disabled people who have been dealt with in this way. Or, people are 'diagnosed' with social problems, which often intertwines with the 'illness behaviour' narrative - e.g. you are not working therefore you sit at home and worry yourself into being ill, for which the obvious cure is to threaten people on benefits to the point that they no longer live the comfortable, shelterd life which the government seems to think benefit claimants have.
It is however, used in another way. The BPS model has been introduced into some medical schools / postgraduate training as a way to remind doctors that there is more to caring for a patient than the medical model. The medical model is basically 'you have broken your arm, we need to pin it and put it in a cast' or 'you have an infection, you need antibiotics'. It is very much the model that you want doctors to be using when you are being resuscitated after a car crash, but once the immediate danger has passed there are other aspects to consider.
So, as a reminder that a biological disease process (let's say Parkinson's) will have more than purely biological effects. It has psychological effects - in the case of Parkinson's both psychological symptoms such as depression and the general 'reactive' psychological effects that can come with any chronic illness - adjustment to new symptoms, traumatic medical experiences etc. There are also many social effects that come from having a chronic illness - the stigma of appearing drunk for example, as some with Parkinson's can do, the fact that the world is not accessible and is therefore disabling (so we include 'social model' thinking which states that people are not intrinsically disabled, they are disabled by their environment - e.g. stairs with no lift alternative disable some folk with mobility impairments, expectations that a normal working day is 9-5 5 days a week disables folk with chronic fatigue or frequent hospitalisations/medical appointments).
The BPS model was introduced in this context to remind doctors that it is not necessarily enough to give folk some tablets and send them away. The multidisciplinary team (ooh, I get points for using the buzzwords!) is given the recognition it deserves in this context - OTs, Social Workers, chronic illness psychologists (yes, I'm told they do actually exist but I've never seen one in the wild).
In my mind the BPS model as applied this way is a very good thing for chronically sick/disabled people, because it is a much more 'holistic' model than the medical model used in isolation (and I hope it's clear that I think the 'it's all in your head' use of the BPS model is very damaging).
Any thoughts?
Thursday, 22 November 2012
Yummy Soft Food
This is a list of soft foods I like and can tolerate. I'm posting it for a lovely friend who has what is technically described as a 'buggered jaw' and a grumpy stomach, but I hope it might be relevant for some other folk too.
Disclaimer : we receive a shocking lack of nutritional teaching at medical school. This is a list of foods I can tolerate as a person with chewing/swallowing/digestion problems. Your body will probably vary. I do know that a varied diet is better nutritionally, and that when we have dietary restrictions we easily fall into ruts of safe food. I started this list to help myself eat a varied diet within my limitations.
Breakfast
breakfast cereal softened in milk
tofu scramble / scrambled eggs
pancakes/french toast (softened with syrup)
yoghurt
hash browns / potato smiles
baked beans / spaghetti hoops
garlic mushrooms
smoothies (I make thicker ones I can eat with a spoon)
porridge (I stir chocolate peanut butter through mine) - the microwave/instant varieties are better because the oats are more broken up and therefore easier to swallow/digest
Soups
I tend to make soups with less thinning liquid than other folk because my tummy prefers it that way
minestrone with tiny pasta
laksa (like thai red curry but soupier)
sweetcorn chowder
tomato and basil
butternut squash and coconut
noodle-y soup
yellow split pea
sweetcorn broth with tofu and scallions (chicken and sweetcorn soup rip off)
carrot and coriander
(okay, this is now just a list of my favourite soups...)
Main Course
mashed potato/shepherds pie
(can add in other root veg for variety/nutrition e.g. swede, carrots)
jacket potato or sweet potato with butter/hummus/baked beans/spaghetti hoops (tuna mayo also)
lentil daal/chili with rice
mushroom/squash risotto
stew and dumplings (fork soft veggies)
veggie burgers/bean burgers/veggie fingers/nut roasts (I imagine fish cakes would be similar)
stuffing (and gravy!)
avocado. with everything.
well cooked pasta (none of this al dente business) chopped up with :
- bolognaise
- pesto
- butternut squash and sage
- blended tomato and veggie sauce
- carbonara (still have to perfect tasty vegan version of this)
rice noodles with tofu and tasty sauce (e.g. sweet and sour)
tofu fried rice (vegan version of egg fried rice)
sandwiches (thin bread slices, plenty of filling = softer)
- hummus
- avocado (current food obsession)
- veggie burgers / veggie fingers
- scrambled tofu
- garlic mushrooms
- nut butter and jam / banana
- pasta sauce
- daal
- butter and jam / marmite
- (vegan) cheese and pickle - the burger slices make softer sandwiches
Puddings
baby food fruit/puddings
canned pears/peaches
dip small pieces of soft fruit e.g. bananas, pears, melon, strawberries into melted chocolate
rice pudding
apple crumble/stewed fruit
cake/biscuit softened in milk
ice cream/sorbet/custard/yoghurt
marzipan/marshmallows (and meringues, one entirely un-veganisable food!)
suck-y sweets
Please add your favourites in the comments (I welcome non-vegan suggestions to help non-vegans who may be reading this - I didn't have the same eating needs pre-vegan so I can't really think of many suggestions!)
Friday, 9 November 2012
Chronic Pain - What to Say
We were having some chat on twitter last night about chronic pain. People made a lot of interesting points and I'm brewing another post that uses those, but I was asked a question by @Tricia_the_doc which I thought was a good place to start : "What are the best tips you can offer docs in terms of things to do or say? (I can guess some of the don't do things!)"
It's an interesting question, because as with many things I am much better at talking about what not to do. With some general disclaimers that this is based on my experience as one person with chronic pain and that others might completely disagree, I came up with the following.
1) And this one is for both 'sides' of the conversation - it's important to recognise the barriers created by previous bad pain management.
As a patient, I recognised that I feel defensive whenever a doctor mentions my pain medication, because so many times in the past I've been told that I don't need it / I'm too young for it / I have a low pain threshold (which is a very stupid reason to deny painkillers) / I'll get addicted etc.
When doctors believe that I'm in pain I am able to relax into a conversation about pain management without worrying that the subtext of the discussion is 'You're not in pain so I'm stopping your painkillers', in the same way that I can have a calm and rational discussion about changing the dose of my asthma inhalers.
I get anxious when doctors threaten to stop my painkillers because I am in pain. The painkillers I use make the pain bearable most of the time. Without them I am in constant, unbearable pain - the kind of pain that sends you out past screaming into practical catatonia. Without meaning to be hyperbolic, threatening to stop my medication is essentially threatening me with torture. So yes, I am anxious.
I would like my doctors to recognise that it is normal for me to feel defensive and anxious about my pain management. Sometimes if I talk to a patient who I sense is becoming defensive in a similar way, I will say 'I believe that you are in pain - I'm asking these questions to get to the bottom of it, not because I'm trying to catch you out'.
2) The tricky bit of chronic pain management of course is patients who you suspect are misusing pain medication in some way - becoming addicted, selling it etc. As someone with chronic pain I am inclined to say that this is not my problem and certainly I believe in erring on the side of caution - I think that I would rather unnecessarily treat someone not in pain than not treat someone who is. However, I also understand that 'drug seeking' wastes time and resources as well as putting people's health in danger.
If a doctor were to think that I was misusing my medication I would appreciate an open conversation with them about it - expressing concern for my wellbeing, offering support, suggesting alternatives - and remembering that many people who misuse pain medication do actually have underlying chronic pain.
3) It is rare for doctors to make positive suggestions about my pain management. Far more likely (most doctors I visit) is for doctors to suggest removing elements of my treatment without asking me what my pain is like or how well controlled it is on my current plan.
If you genuinely think that I might get better results from another medication then I would definitely like to hear about it! However, because of aforementioned anxiety, it would be great for you to make clear that it is my decision and that if it does not work you will re-start my previous medication. Ditto, if you think that I could still be well maanged at a reduced dose because my condition has improved.
A specific word r.e. paracetamol - a lot of my friends on being told that they should take regular paracetamol alongside stronger meds think that this is a sign the doctor hasn't understood how bad their pain is. Make extra clear that paracetamol is actually very effective (even though it can be used for mild pain, that doesn't mean it is a weak drug) and that it enhances the stronger medications.
Non drug treatments are also useful - especially things like mindfulness practice which help people to cope with experiencing pain (the aim of chronic pain management is to manage pain, not to remove it entirely). Please make it clear if you mean this as an adjunct to drug therapy rather than a replacement. See point 1!
If you have anything to add or you have a different perspective, please feel free to share =]
It's an interesting question, because as with many things I am much better at talking about what not to do. With some general disclaimers that this is based on my experience as one person with chronic pain and that others might completely disagree, I came up with the following.
1) And this one is for both 'sides' of the conversation - it's important to recognise the barriers created by previous bad pain management.
As a patient, I recognised that I feel defensive whenever a doctor mentions my pain medication, because so many times in the past I've been told that I don't need it / I'm too young for it / I have a low pain threshold (which is a very stupid reason to deny painkillers) / I'll get addicted etc.
When doctors believe that I'm in pain I am able to relax into a conversation about pain management without worrying that the subtext of the discussion is 'You're not in pain so I'm stopping your painkillers', in the same way that I can have a calm and rational discussion about changing the dose of my asthma inhalers.
I get anxious when doctors threaten to stop my painkillers because I am in pain. The painkillers I use make the pain bearable most of the time. Without them I am in constant, unbearable pain - the kind of pain that sends you out past screaming into practical catatonia. Without meaning to be hyperbolic, threatening to stop my medication is essentially threatening me with torture. So yes, I am anxious.
I would like my doctors to recognise that it is normal for me to feel defensive and anxious about my pain management. Sometimes if I talk to a patient who I sense is becoming defensive in a similar way, I will say 'I believe that you are in pain - I'm asking these questions to get to the bottom of it, not because I'm trying to catch you out'.
2) The tricky bit of chronic pain management of course is patients who you suspect are misusing pain medication in some way - becoming addicted, selling it etc. As someone with chronic pain I am inclined to say that this is not my problem and certainly I believe in erring on the side of caution - I think that I would rather unnecessarily treat someone not in pain than not treat someone who is. However, I also understand that 'drug seeking' wastes time and resources as well as putting people's health in danger.
If a doctor were to think that I was misusing my medication I would appreciate an open conversation with them about it - expressing concern for my wellbeing, offering support, suggesting alternatives - and remembering that many people who misuse pain medication do actually have underlying chronic pain.
3) It is rare for doctors to make positive suggestions about my pain management. Far more likely (most doctors I visit) is for doctors to suggest removing elements of my treatment without asking me what my pain is like or how well controlled it is on my current plan.
If you genuinely think that I might get better results from another medication then I would definitely like to hear about it! However, because of aforementioned anxiety, it would be great for you to make clear that it is my decision and that if it does not work you will re-start my previous medication. Ditto, if you think that I could still be well maanged at a reduced dose because my condition has improved.
A specific word r.e. paracetamol - a lot of my friends on being told that they should take regular paracetamol alongside stronger meds think that this is a sign the doctor hasn't understood how bad their pain is. Make extra clear that paracetamol is actually very effective (even though it can be used for mild pain, that doesn't mean it is a weak drug) and that it enhances the stronger medications.
Non drug treatments are also useful - especially things like mindfulness practice which help people to cope with experiencing pain (the aim of chronic pain management is to manage pain, not to remove it entirely). Please make it clear if you mean this as an adjunct to drug therapy rather than a replacement. See point 1!
If you have anything to add or you have a different perspective, please feel free to share =]
Tuesday, 6 November 2012
All At Once
This is not my most succint post - more of a thought exercise than anything else. I'd be interested to read your thoughts on the subject if you'd like to comment.
Chronic illness is a funny old thing.
In my time on the wards the last few weeks I've talked to a few patients who have been diagnosed with illness or impairment less severe and less disabling than my own but who are receiving intensive, inpatient treatment whilst I am currently 'only' under the care of my GP.
It is hard in my situation not to compare my own experiences with those of the patients I interact with, and I don't believe it is inappropriate as long as it is an occassional ponder on my own time and that if it does affect my interaction with the people I come across as patients, it is in a positive way (for example to remember that I am not a good historian when I am upset and in pain, which helps me to be patient with someone in a similar situation).
Comparisons are of course difficult (especially between different conditions/symptoms) and mostly subjective, but for this train of thought exact comparisons aren't really the point. Nor is the point to downplay these folks' experiences or to suggest that their care is inappropriate, as I don't believe that it is.
The point (finally) is to reflect on the difference between acute and gradual onset of chronic illness or impairment. There are two similar topics that you will have read/heard a lot about if you've been hanging about the sick/disabled blogosphere for a while :
- invisible vs visible illness/impairment
- congenital (from birth) vs acquired illness/disability
I don't hear/read a lot about this particular topic, although it falls in to the same category of illustrating the diversity of experience within our community. It also lends itself to the same 'which situation is better?' philosophising. (Spoiler : tends to come down to 'both have pros and cons' or 'better the devil you know')
It is strange to know that if I had woken up today in this state having gone to bed yesterday perfectly healthy, I would be in hospital now - yet over the course of all of this I have only once been inpatient (impatient is another matter...). This is attributable in various parts to :
- good fortune on my part - some other folk with my conditions are much more severely affected than I and require long stretches in hospital
- medical knowledge, social support, good primary care and accumulated experience and equipment which allow me to manage things at home which I would otherwise need to be admitted for
- and, not so good, some very bad calls made by previous members of my healthcare team
I see these people whose lives have been transformed in an instant and their experience is both entirely familiar and entirely alien.
When I first used a wheelchair, it was an indescribable relief because it dramatically increased what I was able to do and where I was able to go - yet to someone who has suddenly lost the use of their legs using a wheelchair often dramatically restricts their mobility (especially at first).
I have been on regular medication since I was a child. I didn't go from nothing to 22 tablets a day overnight. I am used to the routine of ordering repeats, setting reminders, carrying meds around with me. I am used to balancing side effects with therapeutic benefit. I am used to justifying my use of pain killers to any doctor who vaguely decides I am too young for opiates.
I am used to the restricted diet, to constant pain and nausea, to needing to assert my right to adaptations. I am used to doctors touching my body and to stripping my entire existence down to a list of relevant symptoms. I am used to the paperwork, to complete strangers asking personal medical questions, to needing help with 'basic' things. I am used to putting on a public face because even people who ask how I am don't necessarily want to know.
I have learned these lessons gradually, often the hard way and by making mistakes. I have been mostly taught by other sick and disabled people, including those in my online community. I have had very little multidisciplinary input considering the combined impact of my conditions - and the care that I have received has generally been a fight to access.
I think the learning curve would have been greatly steepened in an acute situation. I think my understanding of the situation would be more medicalised at first if I had been learning how to be in this new body from healthcare professionals rather than from other sick/disabled people. I would have had physio, OT, orthotics and social work involvement from the word go (at least in theory), rather than in a haphazard way.
As for grief and acceptance I am not sure. I know that sometimes it feels easier when a lot of things change all at once and then the dust settles, you can evaluate where you're at and start to move forward. Sometimes it is easier when things happen bit by bit, giving you a chance to catch up and learn to cope with each step. Sometimes it helps to not have a 'normal' before to compare to - I have always been sick to some extent.
I see this process as a journey rather than a binary state. It is amazing in the magnitude of serious illness and disability what it is that really makes you break down. A couple of weeks ago I had a really bad day of grief because I was finding being gluten free so difficult, when in the scheme of things - even the big picture of my dietary restrictions - it's not that big a deal.
And by the way, the things I said I'm 'used to' - it's not quite as simple as that. I suppose I mean that often I can do or experience those things without thinking much about it. Thursday nights I sit down with my dosette box and dole out my pills. Strangers ask what's wrong with me and I say 'that's a very personal question that I'd rather not answer' or 'I have a problem with my joints' depending on situation. But sometimes these inconsequential things are quite unbearable. I can't stand the thought of the BP cuff inflating around my arm one more time. My everyday pain levels are suddenly just too much to cope with.
My take home thoughts are these :
- Acute management is much better than chronic illness management as a general rule. Initial care tends to be better for something that happens 'all of a sudden', but then we all tend to end up in the same slightly leaky boat.
- Tied to this, community access to multidisciplinary support (physio, social work...) needs to be a lot better and easier.
- No matter the speed of onset, chronic illness/disability will often entail a period of adjustment and some degree of grief.
- A really positive aspect of chronic illness/disability can be to share experience/advice/support with individuals who find themselves in the same situation - especially in an 'all of a sudden' context.
Chronic illness is a funny old thing.
In my time on the wards the last few weeks I've talked to a few patients who have been diagnosed with illness or impairment less severe and less disabling than my own but who are receiving intensive, inpatient treatment whilst I am currently 'only' under the care of my GP.
It is hard in my situation not to compare my own experiences with those of the patients I interact with, and I don't believe it is inappropriate as long as it is an occassional ponder on my own time and that if it does affect my interaction with the people I come across as patients, it is in a positive way (for example to remember that I am not a good historian when I am upset and in pain, which helps me to be patient with someone in a similar situation).
Comparisons are of course difficult (especially between different conditions/symptoms) and mostly subjective, but for this train of thought exact comparisons aren't really the point. Nor is the point to downplay these folks' experiences or to suggest that their care is inappropriate, as I don't believe that it is.
The point (finally) is to reflect on the difference between acute and gradual onset of chronic illness or impairment. There are two similar topics that you will have read/heard a lot about if you've been hanging about the sick/disabled blogosphere for a while :
- invisible vs visible illness/impairment
- congenital (from birth) vs acquired illness/disability
I don't hear/read a lot about this particular topic, although it falls in to the same category of illustrating the diversity of experience within our community. It also lends itself to the same 'which situation is better?' philosophising. (Spoiler : tends to come down to 'both have pros and cons' or 'better the devil you know')
It is strange to know that if I had woken up today in this state having gone to bed yesterday perfectly healthy, I would be in hospital now - yet over the course of all of this I have only once been inpatient (impatient is another matter...). This is attributable in various parts to :
- good fortune on my part - some other folk with my conditions are much more severely affected than I and require long stretches in hospital
- medical knowledge, social support, good primary care and accumulated experience and equipment which allow me to manage things at home which I would otherwise need to be admitted for
- and, not so good, some very bad calls made by previous members of my healthcare team
I see these people whose lives have been transformed in an instant and their experience is both entirely familiar and entirely alien.
When I first used a wheelchair, it was an indescribable relief because it dramatically increased what I was able to do and where I was able to go - yet to someone who has suddenly lost the use of their legs using a wheelchair often dramatically restricts their mobility (especially at first).
I have been on regular medication since I was a child. I didn't go from nothing to 22 tablets a day overnight. I am used to the routine of ordering repeats, setting reminders, carrying meds around with me. I am used to balancing side effects with therapeutic benefit. I am used to justifying my use of pain killers to any doctor who vaguely decides I am too young for opiates.
I am used to the restricted diet, to constant pain and nausea, to needing to assert my right to adaptations. I am used to doctors touching my body and to stripping my entire existence down to a list of relevant symptoms. I am used to the paperwork, to complete strangers asking personal medical questions, to needing help with 'basic' things. I am used to putting on a public face because even people who ask how I am don't necessarily want to know.
I have learned these lessons gradually, often the hard way and by making mistakes. I have been mostly taught by other sick and disabled people, including those in my online community. I have had very little multidisciplinary input considering the combined impact of my conditions - and the care that I have received has generally been a fight to access.
I think the learning curve would have been greatly steepened in an acute situation. I think my understanding of the situation would be more medicalised at first if I had been learning how to be in this new body from healthcare professionals rather than from other sick/disabled people. I would have had physio, OT, orthotics and social work involvement from the word go (at least in theory), rather than in a haphazard way.
As for grief and acceptance I am not sure. I know that sometimes it feels easier when a lot of things change all at once and then the dust settles, you can evaluate where you're at and start to move forward. Sometimes it is easier when things happen bit by bit, giving you a chance to catch up and learn to cope with each step. Sometimes it helps to not have a 'normal' before to compare to - I have always been sick to some extent.
I see this process as a journey rather than a binary state. It is amazing in the magnitude of serious illness and disability what it is that really makes you break down. A couple of weeks ago I had a really bad day of grief because I was finding being gluten free so difficult, when in the scheme of things - even the big picture of my dietary restrictions - it's not that big a deal.
And by the way, the things I said I'm 'used to' - it's not quite as simple as that. I suppose I mean that often I can do or experience those things without thinking much about it. Thursday nights I sit down with my dosette box and dole out my pills. Strangers ask what's wrong with me and I say 'that's a very personal question that I'd rather not answer' or 'I have a problem with my joints' depending on situation. But sometimes these inconsequential things are quite unbearable. I can't stand the thought of the BP cuff inflating around my arm one more time. My everyday pain levels are suddenly just too much to cope with.
My take home thoughts are these :
- Acute management is much better than chronic illness management as a general rule. Initial care tends to be better for something that happens 'all of a sudden', but then we all tend to end up in the same slightly leaky boat.
- Tied to this, community access to multidisciplinary support (physio, social work...) needs to be a lot better and easier.
- No matter the speed of onset, chronic illness/disability will often entail a period of adjustment and some degree of grief.
- A really positive aspect of chronic illness/disability can be to share experience/advice/support with individuals who find themselves in the same situation - especially in an 'all of a sudden' context.
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