Perceptions and Family and Grouchiness

To begin with a Note To Self: given that you have poor circulation, do not lie in bed resting your laptop on your feet for extended periods of time. Ow ow ow. So anyway, now that the feeling has finally returned to my right leg...

And then there was Christmas.

"You'll love my new house," says my mother. "It's nearly a bungalow. Just one or two steps inside." Yes, just two - flights. Two big flights of stairs. You enter at kitchen-level, then you have to go down to the basement for the lounge, and up to the first floor for the bedrooms. I was up-and-down so often in the two days I was there that I ran out of tramadol and may have killed off my knees altogether. I also had to refuse to sit at her kitchen table, which was so high up that I kept falling off the stools. She couldn't find a plastic chair for the shower (although I'm sure I mentioned it), so I didn't. Then there was my dad's, where I was persuaded to go for A Walk. It was short, but it was a mistake. Next time I will try to remember that the crutches are for support and preventing nasty falls, not for encouraging me to take up bloody hiking. Not even for 100 metres. Shame, really. No shower there either. I'm happy to have returned home to my lovely safe bath bench and PA. It was all quite good otherwise, though. I slept a lot. I played with my baby niece, who seems to like me. Midnight Mass at the Minster - ooh, alliterative - was awe-inspiring. I enjoyed hanging out with family - which is, um, unusual and interesting. But good.

Perceptions are funny things. My perception of life, access, prejudice, disability, all these issues and more, has changed drastically over the past couple of years, give or take. I was into the disability rights, but I didn't fully understand things like the importance of accessible transport and shops (not to mention homes), the whole issue of independent/inclusive living, or (in the less-political arena) what it's like to be in pain 24-hours a day (actually I always lived with a fair amount of pain that doctors told me was 'normal', but having that suddenly increase to levels of 'not normal by anyone's perception of anything that might ever possibly pass for normal' is a bit different). I mean, I had awareness of these things, but I didn't really *get* them. And that was with a half-decent understanding of Disability Equality.

So I'm not all that bothered by my mother's perception that her house is almost accessible, because I can see how I wouldn't have noticed the two flights of stairs myself just a couple of years ago. And because, once she did realise the problem, she was lovely and wouldn't let me climb those stairs too often, and made me sit down while she arranged everything (much as I protested), and encouraged me to take regular naps, and baked me a lemon drizzle cake (ah, the taste of childhood) and all of that. Her new-and-improving attitudes took down a few social barriers, if they couldn't do much about the physical ones. And that's new. Same goes for the better reactions of other family members. They're getting the point. I like it. Next year I'll try and find ways to be more useful.

So that's just a little passing thought for the day. I am working on the annual pre-NYE post. It may or may not materialize. I'd like to avoid it being too maudlin this year, and so let's get some of that out of the way now: I am not sleeping, I'm too tired to move, I miss my Girl (who went away for a very long family holiday), I experienced my curry dinner in reverse thanks to painkiller side effects last night, and if I want to be (relatively) pain-free I have to pay for it in far too many ways because tramadol is EVIL (but truly marvellous for three hours at a time - it's just a shame about the mess it makes of the following twenty-four hours). And I was stuck in bed today because I overdid it yesterday (Luna is a truly marvellous thing, but I really need to learn that I can't push myself in her for half an hour and still expect to feel all right the next day). And I still don't know what I'm doing about work. And I'm in a crappy mood. Oh, and people keep asking me if I am OK. No, I am not bloody OK. I am grouchy, people. You have been warned. Merry Christmas. But I am consoling myself with season three of Buffy. There is very little that's more wonderful than watching 'Doppelgangland' in your pyjamas at 6pm on a Saturday. Happy weekend, folks. :)

Little Ironies and Other Fun

I'm interviewing for a temporary PA today, to 'fill in' while my own marvellous-but-Canadian PA is away for three weeks. (The best people always have drawbacks. That's presumably related to why they're the best.) I have two people coming over, at 2 and 3, and I'm worrying about the state of the house and that I'm too tired to wash my hair. Oh dear. Let's hope one of these people is good. The Girl went off to places foreign yesterday, and I have things to do. Including the enormous project of my Direct Payments returns, on which I have a few days' reprieve because my printer broke down but I'll be in trouble if it isn't done *really soon*, and planning exactly when and how I want to use this cover PA. It then occurs to me that all of this PA/DP stuff may not be worth the trouble it takes to manage it. But ah well.

So I had this dream last night in which I was researching my autobiography, and was cleverly magicked away to my childhood in order to take notes. The Girl was there. It was all very vivid, although it bore no relation to any memories, and I got Wales and Ireland confused, and it all appeared to be set largely in the 1940s. On waking, it made me ponder some interesting ways of structuring autobiographical material, which was quite fun for about a minute and a half.

I am feeling quite crappy. It is cold. No matter how much I blast out the central heating, it doesn't seem to make a difference. I shall now go and put my slippers in the microwave, which will help.

My Slippies may be the best present I've ever had. The amazing TechGirl got them for me last year, when I was in bed a lot (and regularly very cold). Two minutes in the microwave and it's like summer has arrived in your feet. And they're lavender-scented.

In other really-not-exciting-at-all news, I need to contact the Disability Employment Advisor (aka complete idiot at the jobcentre who wanted me to become a dinner lady), but a) it's Christmas and b) I don't really want to talk to an idiot. I need advice about incapacity benefit, though, and whether it would be possible to 'turn' my job into Permitted Work (by only doing about 7 hours a week), in a view of the fact that I was on incap. before - do not yet know if this is possible. I tried to e-mail the jobcentre, and had the e-mail redirected to some sort of central advisory moron who told me that I needed to talk to my local DEA. Well, yes, that was what I told them... Or I might just go back to work come January. I'm exhausted, but I'm bored again. That's never good. I could try to argue 'them' down to 16 hours a week. 'They' will want me to come in later (like that's ever any good to me), because it's better for the college and they won't notice. I will state that I'm leaving earlier. This will cause resentment. I will win, because I'm in that kind of mood right now. I may also be refusing to go to inaccessible buildings and do too much fatigue-causing activity. Let them try forcing me. And now I shall stop this extremely dull work-and-benefits talk, as there are more amusing things to discuss. Such as how I'm going to manage three train journeys in three days next week, and how long it's going to take me to write up a schedule for the cover PA, and whether parts of me are actually going to fall off in response to this cold. Yes indeed.

Knowing When To Give Up

How do you know when to throw in the towel on something that you've been fighting to carry on with, despite finding it really tough?

There are two dimensions to my problems at work. They are interacting and making each other worse (reminds me of two impairments I know quite well, that I could use as a very appropriate metaphor). 1. Work is not accessible - on so many levels. Going in today would involve pain, exhaustion, stress and worsening of my condition - that could all be avoided if the institution was more willing to adapt to my needs. 2. I am not well enough to work three days a week. But I am stuck in the benefits trap, because going down to two days would lose me my tax credits. So isn't it great that work just makes me more unwell...? And round we go again.

So, it was not without some relief that, when I fell, hit the side of my bed and subluxed my shoulder this morning, I realised that I'm really not up to working at the moment.

And then I e-mailed work, and got back the most curt response that I may ever have seen in my life. But it's all right, because they're "sorry" I'm not feeling well.

The Girl-Who-Is-Incredible-And-Brilliant got me an appointment at the doctor's. It's with Crappy Doctor, of 'made me feel rubbish for bothering her last week' fame (who is at least better than no doctor at all. I wanted Lovely Doctor, but we can't have everything now can we children). And so it transpires that I am sitting here researching whether I can afford to go back onto Incapacity Benefit, still keep my job (but for so few hours that it's barely worth it), still get support from Access to Work (thereby not having to give up the wonder that is Luna), and still bring in enough money to pay the bills. The answer is 'possibly'. The question is whether work will like this idea. If I give them the choice between this and losing me altogether, they may put up with it. Or they might decide I'm not really worth all this fuss. At this point, that would be fine by me.

I await an actual acknowledgement from the Powers That Be that work is just not accessible enough for me, and that they are causing their own chaos. It will never be forthcoming, but I live in hope. The problem is with society, people - not with me.

I hate the cold and I'm moving to Florida.

Current Update: So. I am off work sick. The cold makes me unable to get out of bed, which is not all that good for one's teaching career. This is only actually the second day I've missed this week - the joy of being on an 18-hour alternate days contract. I'm hoping to be back by Friday. The doctor, having made me sit in the waiting room for fifty minutes, gave me two minutes of her time (because obviously it was my fault she was running behind). The first thing she asked was why I was using crutches. Then she reluctantly agreed to sign me off for 'two to three days' (so precise, so helpful, so utterly stupid for having no frigging idea what happens to the body of a person with several conditions when they all start interacting because of the cold, and if I want a whole week I'm bloody well taking it. Mainly because I can't get out of bed). Then she said she'd look into the pain clinic for me. Just like the other GP was supposed to a month ago. I love the NHS to death. (My own, probably.) Then she told me to get a flu jab (but I'd have to come back later that day, which of course is so easy when it takes me all day to recover from having to make my way up there and back). Then it was clear she wanted me out of there. I'm going to book all my appointments in advance, with the decent doctor, from now on. It will mean waiting twenty years, of course. By which time I'll be feeling better.

But in more interesting news, yesterday I met a very accommodating person from the local Physical Disabilities Team (oh how wonderfully medical model). All she really did was ask us what we wanted. This was good, as The Girl - who represents her country in Talking at the Olympics - did a lot of saying how I *like* my wheelchair and crutches. Sometimes I talked, too. In between panic attacks. Anyway, she was very supportive, and is going to send a copy of her report to Evil EDS Physio. This may or may not help matters. The waiting list for physio with these people is months just for six sessions, so who knows whether it'll happen. But at least I stood up for myself. Briefly.

Leeds Update: I forgot to say how much I enjoyed visiting Leeds, didn't I? 'Twas fab. I need to write letters of complaint to GNER (for the amazing disappearing ramp that was nowhere to be seen at the station at Leeds), to Travelodge (for the amazing wheelchair-accessible room that becomes non-accessible between booking and arriving), and to God (for all the amazing sodding hills). The representatives of the Equality Service, the Accommodations office and the department were all marvellous. The dept people were so laid back that I got quite confused. They said "See you next year" so they must have liked me. I still need to write the actual application form. I'm getting there with it, although it rather sounds like I'm disappearing up my own backside a lot. Striking a balance between "I am but an ignorant fool who wants to sit at your feet and learn everything that there is to know, O great academic heroes" and "I'm too awesome for this course" is hard. Especially when you're bipolar.

And now I crawl back to the kitchen for another cuppa, changing the DVD on my way, as it could be a while until I can get up again. Anyone for Buffy?

Physiotherapy Nightmares

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.

In which I get Stuff, apply for Courses, go to Markets, and annoy a Girl.

I feel that I am spending too much time with The Girl*. She brings out a very odd side of me. We've spent the morning side-by-side in bed, both with laptops, reading the same blogs. There was a slight time delay between laughs while I read a joke first and then she caught up. We are not cool. Then she broke a cup - an honour generally reserved for me and my pointless over-bendy hands - and was eulogizing it. ("Oh, dear cup, your life was too short. Although you survived longer than any other piece of crockery I own." I did point out that she owns several other cups from the same set, and the statement is therefore inaccurate.) And now she's coming up with philosophical theories to explain why the world appears to slow down when you have a traumatic event (like, um, breaking a cup). She needs her own blog. I think that's today's project. Along with going to Camden Market to buy weird stuff. A Tibetan fleece has been mentioned.

So. Next week I'm going up to Leeds to visit the Centre for Disability Studies in an attempt to work out whether they'll accept my application for the MA in Disability Studies (or possibly the one in Equality and Diversity, which would include many of the same modules, and I would still intend to a Disability Studies dissertation). It must be a good sign that they're willing to meet me. The Accommodation Office is also being very helpful, showing me around some accessible rooms in halls on/near campus. I really mustn't get my hopes up - especially because I've done no sociology study before, which might mean I won't exactly be a preferred candidate if they have a lot of applicants. But, I want this. This really hit me earlier this morning (while I was sitting on the toilet, and thinking about things while wondering how I was going to get up again - I still don't have a toilet frame from the OT). I haven't been this excited about something since, ooh, about two years ago this month, when a certain virus kicked a certain genetic condition from a low-level problem into a full-blown, painful, completely exhausting, thoroughly depressing and very dull mess. (And I maintain that it's not anti-social model to get irritated with my impairment occasionally.)

I mean, I've been into Disability Studies for a long time. I first discovered it around 1997, when the social model was much more the domain of academics than 'ordinary' disabled people (now there's an unhelpful binary opposition for you), and we weren't really expected to understand it - and definitely not to question it, work with it, play with it, develop it, live it. All the things that many of us mere mortals do with it now, whether affectionately, critically, suspiciously, devotedly or philosophically. From the moment I encountered the disability rights movement, I knew I was going to be what Tom Shakespeare calls a "critical friend" of the social model. In all my reading and considering of social-contextual approaches to disability since then, I haven't encountered someone saying exactly what I want to say. But I can't yet voice my response to the social model, to the disability rights movement that I have great affection and respect for (but that I've never felt all that included in, for all manner of reasons), because I don't yet have the academic understanding, the terminology, the history, the sociology. And I want to. My painful exhausting depressing dull condition could be a real positive here, because not much else would give me the time and opportunity to go for this. Not to mention the focus, and revitalization of my interest in disability rights and Disability Studies, that it's providing. So. We shall see.

In other news, we're rather pleased that we're starting to learn how to take on the system and win. Two weeks ago I asked my social worker for three more Direct Payment hours per week, plus extra hours for the various times The Girl will be away over the next few months. And - most interestingly, as my social worker had no experience of this ever happening in his area before - we asked if I could take my PA on holiday with me in January, so I didn't have to compromise my dignity and continually ask my friends for assistance. I thought I'd get one, maybe two of those requests granted, especially as social worker wasn't looking positive about any of it. Yesterday we heard that I've got three and a half extra regular hours (where the other half hour came from, I don't know), plus *everything* else I asked for. At work, I now have a PDA to do my paperwork on (still no automatic doors into the other building, but you can't have everything all at once in this world of corporate leviathans) and a decent chair and other helpful desk stuff is on its way. In the OT/physio world, I have crutches that are helping me getting around a bit easier, because wobbling on a stick and occasionally falling off it was getting dull. The crutches are marvellous, although I'm trying to balance my need for a bit of exercise with not overdoing it just because I think I can. That way lies pain, suffering and The Girl picking me up off the floor a lot. So, yes. Stuff. Lots of it. And a bit of support. And just about enough money to cope. I'd say that life's starting to look a bit brighter, but I might jinx it. Also, my readers come to read my rants, not to see me being smug about getting things. So I shall be quiet now. But I wanted a teeny tiny celebration of me and my Girl and our teeny tiny bit of success. Yes.

Right. We are now off to Camden Market. That is, if I can tear The Girl away from the audioblog she's created in the hour it took me to write this, and is now finding very entertaining to play with. And because I object to a blog that's inaccessible to D/deaf people by definition, I'm guessing I'll be doing the transcribing. Because it's not like I have enough to do.


*I don't, of course. I'm always complaining that I don't see her enough. Actually, I think I swing between the two extremes...