Anything I post today will be incoherent and unfocused. I shall refine my thoughts when I feel better.
The medical model. It sucks, even if it does have the ability to make me 'better' (although how you define that is the issue at stake), because I have no power within it. It is designed to normalize, to 'prove' that invisible = nicer than mobility aids (even if that means I am *more* disabled as a result of that invisibility, because at least it's more acceptable in polite society. Tea and scones, anyone?)...
I am very afraid of my physiotherapist. And of the treadmill I think I'm being put onto.
Yesterday I was told that my goal should be to live without mobility aids - and as soon as possible. Never mind the mess that would currently make of my life in between 'walks'. I was not bold enough to explain that my wheelchair and crutches are the exact opposite of what this person thinks they are, that they have given me freedom and a life, and that I will not be giving that up just to make medical people happy. My pain was ignored, my fear of falling and being disempowered was dismissed in favour of confused ideas of "independence" and guilt trips, and I believe that my requests (poorly-expressed as they were) were not listened to. I was told to stand on one leg, I tried and failed, and I was left feeling that this means I will never be a worthwhile member of society. And today I hate myself and my life.
It is entirely possible that some of this is going on more in my bipolar brain than in reality. That doesn't make my fear, distress and hurt any less real. It doesn't change the fact that I am too frightened to explain myself, my needs, my views and the complexities of my condition.
Today I can't stop crying. Church was a mess - I couldn't focus on the beautiful service because I kept looking at my crutches and feeling guilty about them. And thinking that I'm ruining The Girl's life. (She says that's ridiculous. It is, nonetheless, how I am left feeling.) I would like some kind of sedation, please. I am seriously worn out.
If I ask to be taken off the treadmill, will I give up my 'right' to the kind of treatment that I do want?
If I try to stick with this and to express myself better, will I remain quite this disempowered and self-loathing? Is there any way to combine the social model with this kind of intensive, 'rehabilitative' (a loaded term in itself) medical treatment? Are choice, freedom and autonomy ever possible with medical people and their medicalized outlook? Can I ever have control of my own treatment?
If I choose to focus on pain management at the moment and leave the intensive physiotherapy for a time when I can better handle the emotional and physical mess it creates of my life, am I being incredibly selfish? Does it mean I enjoy being sick and want to stay this way?
Is it a bad sign that I'm thinking of ringing all my doctors and asking to be taken off their lists, for everything, including pain treatment?
Is it fair that I can get all the 'rehabilitation' I want, but that pain management clinics have eighteen-month waiting lists? And that no one cares how much it all hurts as long as I stop bothering people with my obvious differences? And that, since fatigue is invisible, doctors would rather I ended up back in bed and seriously curtailing my life and freedom, because at least I'll be able to walk down the road some of the time?
How on earth do you - yes, I mean YOU, Dear Reader - deal with such disempowerment when you want to live by theories of Equality and Human Rights and Choice? How do *I* resolve the dichotomy of theory and practice in my life as an 'ill person'?
When can I write that dissertation on power and control in the sociology of health and illness?
And where do I find an advocate who will co-ordinate my treatment with my needs and choices in mind, and ask me what *I* want?
Any and all answers appreciated, because I feel like I'm losing my mind here.
13 comments:
I hope I don't need to reply to this post. You should know me well enough by now to know what I think.
But I'm replying anyway because it's a way of procrastinating and avoiding washing up.
I'd never live a life without mobility aids. Sorry if the rest of the world thinks my wheelchair is ugly, but I refuse to be made housebound by the worlds attitudes to the aesthetics of disability.
As for "treatment" I'd never do it for aesthetic reasons (i.e. to look normal and not use a wheelchair or have bent bones). I'd only consider treatment for pain relief.
If I was offered a new ankle joint tomorrow I'd probably take it because it should mean less pain. It won't make any real difference at all to my mobility because the rest of my body is still fucked. But I'd be in less pain.
When I was about 13 I was asked if I wanted my right arm straightened. It would have been a purely cosmeitc procedure, to make my arm look "normal". So I didn't have it.
But now because the bones are bent, the muscles are in the wrong position so I get RSI. My arm hurts a lot. If my arm was straight the muscles would be moved into a more "normal" position and so would hurt less. It wouldn't be a cosmetic procedure any more, so I might consider it.
I could not use a wheelchair if I never wanted to leave the house. I could "look normal" but no-one would know because no-one would ever see me looking normal because I'd be a prisoner in my own home. Or I can use mobility aids and live a fairly normal life - I can go to uni, I can go shopping, I can go clubbing, etc.
Like me you have a choice "do I want to look normal or be normal?"
I choose the latter and nothing will make me change my mind. You need to make that decision for yourself.
*offers massive huge hugs... and hopes they don't cause too much pain in the hugging* I'm sorry you feel so dreadful. You ask some masively incisive, challenging questions... far from losing your mind, you're articulating yourself with excruciating clarity. My heart goes out to you.
"How on earth do you - yes, I mean YOU, Dear Reader - deal with such disempowerment when you want to live by theories of Equality and Human Rights and Choice? How do *I* resolve the dichotomy of theory and practice in my life as an 'ill person'?" Can you give me some time to think about that? I will respond, I promise, but it may be via Facebook.
"When can I write that dissertation on power and control in the sociology of health and illness?" Why don't you start now? Actually, I think you already have started. Kleinmann and Foucault spring to mind, too.
"And where do I find an advocate who will co-ordinate my treatment with my needs and choices in mind, and ask me what *I* want?" Not knowing your part of the country so well, I'm not sure. I might have suggested Mind but I'm sure you'll have thought about that already, and I'm not sure if they'd have the experience with physical disabilities. My suspicion is that you'd be far ahead of any advocate in your thinking, even if you're only able to express that in writing. I think that ultimately, what you write will be what liberates you.
I'm sorry to hear that you're experiencing such difficult times, though the one positive that I can see in it all is that as someone with HMS or EDS (can't remember which you have sorry) you are able to access such a wealth of services. In my area of the country none of those things are available.
The international expert on EDS based up north does take a slightly different approach to those in London, and likes to discourage and avoid the use of mobility aids as much as humanly possible, if for no other reason than for most of us using crutches, manual wheelchairs etc will only cause more problems long term. Having said that, I don't know if you were receiving expert physio, but it doesn't sound like they were taking a very practical approach for someone with hypermobile joints.
Core stability work is something greatly emphasised on the HMS site, and though it sounds trite, it really is the only thing that will work, slowly but surely, that and time. It's so soon after you've been diagnosed that perhaps you are expecting a bit too much of yourself? Time to adjust to your diagnosis before anything else may be what you need right now. Eventually you will become your own advocate, but not until you've had the time to find what it is you want and need. Take care of yourself for now, and try not to worry about the professionals, BG x
I'm all out of answers, me, but I can do you some prayer if you like?
Shit, girl, treatment shouldn't be about what you deserve. It should be about finding the right way for YOU to feel better in your every day life. If you need mobility aids, even if you only need them sometimes, there's nothing wrong with that. It shouldn't be a choice between giving them up (regardless of the pain and difficulty involved) and getting treated properly, or not giving them up and not getting treated.
In the UK the right GP is critical, but of course limited to the three or so in your catch area. The difficulty is that for many people in the medical system, their own identity of success and failure is unrelated to you as a person. Doctor's and Specialists fee1 they need to "Diagnose you" even if that means doing a referral and then just waiting months of specialist - what happens to you? There is not special statis chamber for you but from the doctor's point of view they are doing a "good job".
The same with a PT; to them, if you can live without mobility aids they are doing what they have been trained for. I will give you an example, I met a father in gibson whose daughter had Spina Bifida. They told him that if she had an operation at 8 she could be able to "walk like normal" (she currently sort of hopped around and seemed okay with that). He consented. For the next three years she was required to do "Walking therapy" in which it HURT her to walk, and it took her about THREE HOURS to go up the hall and back. The father eventually said, "Give me a wheelchair" and she is back to being able to spend her time doing things instead of walking up and down a hall for half a day. The PT view that as a possible success who "opted out for personal reasons" - from their point of view they HAD her walking, albiet not in any useful form, and that she just "gave up" after "only" three years...
After 10 months of tests, tests, tests, I told the GP of the week that "All I care about is improving my quality of life, if you aren't on board with that, then don't treat me."
A GP can ignore recommendations, and request others. Maybe there is some form of ombudsperson available too.
If it is of any consolation I have I think 4 or is it 5 presciptions for my wheelchair and every EMT, home care middle manager and orderly still wants me to justify to them, in detail, why I need it; because we are obviously wheelchair criminals who must be closely monitored.
To a medical person, the patient and the information they are trying to give is always suspect and the only relable resource THIER observation. I try to take along another person becuase more often they will believe my partner over me, or a tape recorder. Or I just do my research and ask them why haven't they done X yet or Y or Z or if they really think that, then let's do a treadmill test and if I fall and break a limb or die they lose their licence. But then, I'm 'difficult.'
Sara told me she simply remembers and treats them as HER employees; which they are, they are getting paid by you (or on your behalf) - they aren't doing it for free, because you have come, they get paid, which means they can advise you, or refuse to see you but they can't tell you what to do (most often they will simply invite you in, then tell you that you obviously have an attitude which is unwilling to participate in your own healing - see, because THEY never fail, only you do) - I used to file complaints but my GP told me to not bother, as they were frightened little people who would rather throw mud at me than ever admit they were out of their knowledge comfort zone.
Any help?
First, I want to say thank you for doing this blog. It has really opened my eyes to the impediments that those with disabilities face. It all becomes more real when someone you know faces these problems.
Second, you shouldn't feel guilty for using tools which make your life easier.... if so, then we should all feel guilty for using a microwave too, and frankly I think that's a bit ridiculous, don't you?
As you know, rehab was my job. When I was applying for a rehab post, since I didn't know much about rehab nursing (not having done a rehab placement), I looked it up. Here's what I found...
rehabilitation /re·ha·bil·i·ta·tion/ (re?hah-bil?i-ta´shun)
1. the restoration of normal form and function after illness or injury.
2. the restoration of the ill or injured patient to optimal functional level in all areas of activity.
They're trying to achieve one of the above two aims... and from what you say you want, hopefully the second (especially since you're not "after" your illness). The thing is, the physios, doctors, nurses, OTs with all their (our) knowledge and experience are at a disadvantage- our only way of assessing "optimal functional level" is to go by what you *can* achieve- especially if you don't communicate what you *want* to achieve. And even then (from my limited rehab experience) sometimes people say they want to achieve a certain goal, and then get upset when you don't push them past that goal, or they get upset when you try and push them towards it (knowing that things achieved in a physio session need practice and maintainance). Do you see what I'm trying to say? People are complex creatures and often you learn to look at what they're telling you non-verbally rather than verbally, since what they say isn't often what they mean. And sometimes people's non-verbal communication is difficult to read and it leaves us floundering, and usually pushing people too hard or not hard enough.
I'm not making excuses for your physios or doctors- you've had some shocking experiences, and I only hope I'm never unlucky enough to be unwell in any way in your area. I do have a suggestion, however, which I hope will make sense:
As a physio, she should be familiar with the concept of "goal planning", which is a patient centred way of planning what happens next- in hospital it takes a multidisciplinary approach, but in the community, really, all you'd need to do is sit down with your physio, and an advocate (ie The Girl) if you feel that you won't be able to put your view across and... set goals. SMART goals which then provide a basis for what you do in your sessions- then she will know what you want to achieve and hopefully will be better equipped to plan your sessions around those goals. Make it clear that you don't view your mobility aids as a Bad Thing. A lot of people do, and she's probably used to people saying "I don't want to use a wheelchair"... spell it out for her.
I hope that's helpful in some way. I've a lot of information on goal planning (from a professional point of view, but you'll get the idea from it) and SMART goals, if you wanted it sending your way just email me on hayley.baldwin@gmail.com
Hope that's vaguely helpful, sorry for the rambling comment and probable apparent defense of all things medical.
xxx
Lisy: Thanks for explaining that - it's useful. My situation is obviously quite different from yours, though. It's not exactly the same choices I'm making. There may be room for me to make some major 'improvements' here. I just might have to experiment with my health a bit to find out - which is the problem. And there are all sorts of other choices too. I'm thinking about them.
BG: I can only access these services by paying for them. I don't get them free. I *might* be allowed six sessions of physio locally with non-specialists if a decent case is made to say that I need it. I'm not entitled to any free treatment regarding HMS/EDS except for my GP's rather inept attempts to keep me quiet. So, you'll excuse me if I'm not more grateful for having to pay for this woman to be overbearing. We'll be working on core stability - but my old physio (also paid for) was working on that with me for quite some time, and I made absolutely no progress, and my pain levels went through the roof and I was incredibly fatigued and everything got worse. So, we'll see how it goes - but I won't accept 'treatment' that causes me to have to live with more pain.
Rosamundi: Prayer is always a marvellous thing. Especially since I know you won't be praying things like 'Lord, give her healing' (hee hee), but more things along the lines of 'Lord, help her not to kill any physios'. Which I would greatly appreciate :D Cheers.
tanya: Thanks. You're right, it *should* be about that. I just don't know quite how to get that... Hmm.
Sherilyn: Long time no talk! I'm glad you enjoy my blog. And the microwave analogy is making me extremely happy. :) God bless.
Hayles: Don't feel bad for defending Things Medical. I should probably be more grateful than I am for the (limited) medical support I've received. I don't intend to offend you or any other medical person who reads this blog. However, it's very important to me to express these feelings, because I'm entitled to them - particularly since doctors and physios are (largely) the ones who've messed me up, and now I get to feel guilty about the state they've left me in, and I don't think that's fair at all.
Your comments are useful, and I agree that I need to be clearer with the physio and set goals WITH her (although she did all the goal-setting in the first session, and told me what I would be working towards, while paying lip service to 'shared goals', which was part of my problem with the whole thing). I will think and work on the whole concept of communication. Thanks for your input - it's valuable.
Elizabeth: Thanks. Your points about quality of life are *really* useful, and I'm thinking about them, and ways to have enough self-assurance to tell my physio/doctors etc that that's exactly what I want to focus on - at least for now. I don't quite know whether I'll manage it. We shall see. I find the 'employee' concept very helpful.
LWG- I should have read this blog 1st. You said everything that goes on in my little head. every time I go to a new Dr or a new eval. I feel like I have to plead my case for my braces and mobility aids. Its not like I *want* them but I need them. They make life so much easier- although my vanity takes a HUGE hit. So much as I don't even like my husband to see me with them.( thats a whole diff issue) I just want you to know your not alone with these thoughts. I think the specialist don't know that the use of a wheelchair as needed would actually keep us out of one on a daily basis - if allowed early enough before our conditions get worse. PAIN FREE HUGS!
"If I ask to be taken off the treadmill, will I give up my 'right' to the kind of treatment that I do want?"
No. This issue has come up with ME patients and NICE itself has now made it clear that refusing certain aspects of treatment is not a valid reason for other treatments to be refused to you. I wish I had known this when I saw the stupid PM clinic as they were NOT allowed to discharge me b/c I wouldn't do their course.
OK, i'm late coming to this post (I don't know why i didn't see it when you first posted it) - but i wondered whether you had read this article: http://normemma.com/arstairs.htm - thought you might appreciate it...
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