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...

Breaking Down Barriers

Some people would look at my job and wonder what on earth I've got to complain about. I'm allowed to spread my 18 hours of work over three days per week. It's sort of related to what I'm trained to do. I work in a reasonably accessible place - an accessible toilet (shame about the non-disabled people who've managed to get hold of a key and keep breaking the door-closing mechanisms, so that I have to play contortionist in order to close the toilet door behind me), not *all* the doors are so heavy that I sublux my shoulder trying to open them (just some), the staff room's next door to my office and the room I mostly work in is just down the hall...

But the attitudes of people in my workplace are a bit - well, it's hard to pin down what's wrong with them - but it's sort of a 'this far, no further' attitude. I've had meetings with managers in which I've asked for reasonable adjustments that would cost nothing and bother no one, but because they're a variation on the norm, or mark me out as a different, they've been refused (as being 'unreasonable', essentially). When I asked for a phone to be put on my desk so I didn't have to get up out of my chair to answer it every five minutes, six senior managers appeared in my office and discussed this 'problem' very loudly in front of all my colleagues - I still don't have a phone (but now I refuse to answer any calls). One of my duties is in another building on the site, involving me crossing a lot of uneven ground for about 400 metres, and opening some extremely heavy doors including two sets of double doors - one day soon, these are going to cause me some real injury. My complaint about this, and suggestion for an easy solution involving me staying in my own building (it would only take a tiny reorganization of one other person's schedule) has been met with such shock and confusion that I may as well have asked for something that was going to cost £millions. Earlier this week I was abandoned during a fire alarm because procedures went wrong and they forgot me - I ended up having to negotiate two flights of stairs - subluxed a joint in my foot that still hasn't stopped trapping nerves - exhausted myself - and then was told I still had to go over to the other building. My manager thinks reasonable adjustments are 'unfair' because not everyone gets them. Attitudes. Not so good. No overt disablism - more like ignorance and institutionalized stubbornness.

In addition, at the moment I rather feel like I'm wasting what little energy I have on a job that I don't really enjoy and which doesn't make the most of my training and experience. Am I supposed to settle for this? The British Government, it seems, would say yes. (Just look at recent reports on what's going to happen to Incapacity Benefit to give you an idea of their thinking on this.) But why? Before I became disabled, I was told to be ambitious, to push myself, to aim high. Then I became ill with mental health problems and was told my goals should be reduced. Then there was The Wheelchair, and my DEA started putting me forward for jobs as a dinner lady. When I was previously heading for posts in middle management and beyond. Um. What? No. I've been doing this job for two months, and already I'm deeply unsatisified with it. And bloody exhausted.

So I'm probably going to apply for a Master's, hopefully to start next September. I'll be paying for it myself, of course. And retraining after just three years in my previous job is not ideal - especially when I *really* loved teaching. Alas, the stress levels and un-inclusive policies (and many other problems) did not create a sustainable environment for me to work in. Maybe, through studying a completely different subject, I can start to move into another area of work that I'll actually enjoy. I hope so, because I really want to work and to enjoy working. But I won't achieve either of these things if I keep trying to work in my current sector - education. It isn't set up for disabled people, generally speaking (there may be educational establishments that are the exception to this rule). And that's a real shame. Maybe if more students had disabled teachers they'd develop more inclusive attitudes.

In response to the Government, I'd like to state that I WANT TO WORK. In particular, I would like nothing more than to return to my previous job. But the barriers there are too difficult for one person to climb over. Especially from a wheelchair (and with joints that don't work and fatigue that won't lift and mental health problems and a learning difficulty and a very understandable headache). I think this disablist wall needs an automatic door put in...

Conclusions? I have none, really - feel free to give me yours.

Stuff Wot Happened

Well, I was awake at half-past five in the morning, again. This irritating state of affairs, dear readers, has arisen because of a wonderful painkiller called tramadol - it does quite good things for my pain levels, and horrific things to my head and my sleep patterns and my ability to walk in a straight line (which was never that great to begin with). Can't win. Apparently this is typical of this exciting condition thatI've just found out I have - painkillers aren't all that effective, so the side effects aren't often worth the effort. Fabulous. A condition with the effect of chronic pain, on which painkillers have no effect. Clearly God has a sense of humour. Bah.

However, the main events of the past month have been largely satisfactory, with just a few things bringing me down. I shall discuss some of these events. (Aren't you lucky.)

I've been stressing about the whole DLA saga since January, when I first applied, and especially since March, when I applied to appeal the decision (of lower rate care - I got higher mobility). A couple of weeks ago I went before a panel to argue my case. After much crying, arguing, stressing, trying to persuade a doctor that EDS is a real condition, and generally losing the plot, I was awarded higher rate care (and the higher rate mobility was confirmed).* This is simply marvellous. The backpay will help me if I go for the course I'm thinking of taking next year - but that's another story for another post. It generally helps me in a number of ways that are Very Good, not least because it gives me a bit more money to live on - which I desperately need if I'm going to fund my own physiotherapy for the EDS.

Meanwhile, I've fallen in love - yes, I have a new woman. (See above.) She's crazy, and lovely, and always wants to be on the go, and gets me from place to place much more easily than I ever thought a manual wheelchair could. She is called Luna (we went through several Harry Potter names before settling on that one - she just wasn't a Bellatrix or a Rowena). She is fabulous.**

Beyond that, nothing particularly exciting going on here. Work is driving me slightly crazy. The meeting that I set up with Personnel was OK, but not great. After a fifteen-minute detailed discussion over whether I could leave half an hour early on days when I was tired, which left me feeling incredibly guilty for being ill, I chickened out of asking for even more flexibility in my hours/days. It was never going to happen. These employers are quite good when it comes to physical adaptations - I got a sliding door put in between my office and the staff room in the space of two weeks - but they can't cope with anything unusual, and they don't quite understand the concept of reasonable adjustments. Yes, I should be fighting for my rights and the rights of future disabled employees. But at some point I need to stop being an ambassador for disability equality, and start getting on with being a teacher. If I don't, I'm going to go a bit mad. I'm already feeling very low about my career, my future job prospects, my ability to balance work with being a rather ill person, etc. I have A Plan for getting myself out of the drudgery, but it's going to take some time. Meanwhile, I'll be the one asleep on the desk in the corner...

*The Girl tells a different story. She swears I cried for exactly the right amount of time (about 45 seconds, she says, which was apparently my quota), said all the right things, defended myself and my condition admirably, and was able to argue like the coherent professional I am (heh) while also demonstrating that I am useless enough to meet the higher rate criteria. The woman is delusional, but she's convinced that's how it went.

**The Girl gets a bit upset when I'm this excited about her. Heh.

Good and Less Good

I'm blogging to the tune of: Another Case of Milton Jones. There's some very surreal comedy on Radio 4 at the moment. I approve. Now I just await the return of The Museum of Everything and my life will be complete.

Good things from this week: There is a new addition to my extended family, and she is tiny and beautiful. Also, the wonder that is Camden Council has - rather grudgingly - agreed to give us £300 compensation for the appalling mess they made of that tiny adaptation to our side gate that should have taken them five minutes but actually took five months.

Slightly less good things from this week: I hate change. I really do. It makes me extremely grouchy and causes migraines and chocolate binges and panic attacks. I haven't eaten Opal Fruits since they rebranded them 'Starburst'. I spent a week frantically cleaning and reorganizing after Buffy ended. When I started going out with my Girl, I sat at the top of the stairs all weekend feeling deliriously happy, but nonetheless very confused. It is therefore not all that surprising that for the past couple of weeks I have been feeling quite rubbish. Even though, technically, nothing at all has changed. I have a new diagnosis - OK, not new, just newly discovered, and responsible for all my problems, from pain to anxiety: Ehlers-Danlos Syndrome (hypermobility type, also known as type III), a rare genetic connective tissue disorder. I already know everything I need to about how this affects me, and probably how it's going to affect me for the forseeable future. So I really should be nothing more than relieved to have the correct diagnosis and some possible treatment options. Except that I'm not particularly relieved. For the first week I was pissed off, stressed out, worried and depressed. Now I just feel stranded. At least when the dx was Fibromyalgia (which I still have, but apparently it's secondary to this 'root cause' thing), there was a possibility that I would spontaneously improve at some point, and that I could at least keep things under control. There are a wider range of possible outcomes from this one. There are also possibliities for treatment, but none of that comes cheap (of course) - and in the meantime, no one's telling me what I should do to help myself, while there seems to be a variety of opinions as to what the prognosis might be. And there's the fact, as I ranted about over at 'Ouch' earlier in the week, that my mother was trying to get me a diagnosis of something along these lines when I was two years old, and that had the doctors listened back then (or even just two years ago), many of my problems could have been prevented. But then, what can you do? I'm working on undoing some of the damage. Progress reports to follow...

I'm finding work very tricky at the moment. It's nothing serious, but rather lots of little things that are starting to add up.

For example. Yesterday I made a quiet request to my line manager, who works in the same office as me, that she talk to the buildings manager about putting a phone on my desk. When I'm in the office I fold up my wheelchair and put it in a corner - because staying in it can give me back problems - but the phone is over at the other side of the room, so I have to get out of my chair several times an hour to answer it, and this can be an effort, as getting out of a chair is often harder for me than walking. Recently I've just stopped answering it at all, but this isn't ideal. Suddenly, about *seven* managers and maintance people start wandering into the office, demanding (loudly) to know what I want, telling me (more loudly) that it isn't possible, and then storming out leaving me feeling appalling. This very public display of my disability was then extended into an office-wide discussion of what might be done to give me access to the phone, from which two options were raised: I either have to move desks, which I'm not happy about as I'm in an ideal place for everything else, or I have to stay in my wheelchair and wheel over to the desk. I left saying that I'd think about it another time, as I was so upset that I didn't want to deal with it all. I don't think that my access needs should be discussed so publicly and treated so tactlessly - but I'm terrified to raise it, because I don't want to get a reputation for being difficult. I've already had two meetings with my line manager in which I said I wasn't happy with aspects of the job. None of this is making me look like a dedicated professional.

This is all being made worse because the ironically-named Access to Work are being utterly crap. I'm being made to wait forever for a specialist consultant to come and assess my needs at work, meaning that I have nothing official to give to my employers, meaning that all the little changes I could do with are not happening. When I've raised some of these, I've had very little support from my managers, and nothing is changing. But again, since none of these are major issues, I don't feel able to kick up a fuss about them. I'd look unprofessional and whiney.

Oh, and the job itself is turning out to be much less creative and interesting than I had originally been made to believe it would be. Working with the students is great, but I have very little responsibility, and there's lots I'd like to get involved with that isn't my remit. Also I've just been told that I have to see five (or more) students every (six-hour) day I work - and we're talking seriously intensive one-to-one work here, for which I need time to plan and write up paperwork. Fortunately, the other person who does the same job as me isn't mad on that idea either, so together we might be able to negotiate that down.

On the other hand, working with the students is REALLY great. And I've got several with interesting access and support needs. So this could eventually lead to more interesting work in the area of equality and diversity in a college. Which is something I'm very keen on.

So I'm going to sit here and nurse my stress headache, while thinking about whether I should just quit, or hang in there and try and work out what to do about the various problems. Blah.

I'm reading: The Book of Dave. A fantastically chilling juxtaposition of the present-day life of a deranged cab driver and the future dystopia that his unpleasant ideas create. Disturbingly thought-provoking satire. Oh, and it's by the awesome Will Self. Absolutely everyone should read this.

Work, rights and the pointless law that is the DDA

I miss working in the classroom. I really, really miss it. My new job isn't going too badly, but the admin-heavy, individually-focused work is lacking the excitement of group teaching. Things may improve when the project I'm involved with gets off the ground. We shall see. I need to think about where I'm headed and what I want to do with myself in the future, both immediate and longer-term. The uncertainty created by ongoing medical stuff and an unclear prognosis is causing me worry. But that's for another post, when I've got it figured out a bit more clearly. In the meantime, being a disabled working person is tricky. Access to Work are utterly useless - the financial support they promise seems to be mostly mythical, and they create far more work for me than they improve things. I have been asking them if they could come and assess my needs at work for about four weeks now. No sign of them making any effort to follow through on that. I have written angry e-mails, TG has telephoned, I have thrown tantrums and threatened to hand in my notice - nothing. Helpful. Then there's the joy of trying to explain why it's difficult for me to cross three buildings in my wheelchair more than about twice a day. My manager's reasonable adjustment for that one was that I should have my lunch over in the other building. How do I explain that being isolated from my colleagues, my desk and all my resources and records is not exactly an answer? But I can't ask for any more considerations to be made for me at the moment, as the college has been making a whole lot of changes for me, and I've also been making it clear that I'm not exactly sure how well the job is going. Tricky, very tricky.

Did I write here about my accident? I fell backwards off a wheelchair ramp going up to a bus. It was a very badly designed ramp. I could have been very seriously hurt (although fortunately I didn't suffer too much more than a mild concussion and whiplash), and Marvin hasn't been right since (but then, he is a chair of a certain age). I am now too afraid to use buses alone. Needless to say, we are sueing the bus company involved. Not sure how that's going to go yet. I was quite disturbed to find out this week that the DDA doesn't cover the physical features of buses, only the service they provide - meaning that the law has absolutely no teeth at all when it comes to making transport accessible, and that the only way I can get some kind of improvement on these buses (and make sure this doesn't happen to anyone else) is to try and extort money out of them. This goes against most of my principles, but what else can I do? We live in a society where there are no individual rights, only corporations and capitalism. This distresses me quite seriously.

Sick, sick, sick

I have a cold. It's a really nasty cold. I blame the woman at work who insisted on coming in all week, despite being ill, because she thought she'd be letting the team down by staying at home. I'd have much preferred having to cover her work than the current 'wasted weekend' situation that is emerging. I'm trying to work out how to put into words that this might actually be a good thing, but I can't quite explain. Something about how I don't think of myself as 'sick' as much as I used to, and how I'm adjusting fairly well to my impairment and how to live and work around it, so that I notice the difference. That sort of thing. OK, never mind. I'm miserable, all right? Stupid idiots who think that just because they can work through illness, it's fine to infect everyone else, including those who can't physically stay upright through a cold because it turns life into a mega sucky pain-fest. They are bad people.

In unrelated news, why are pubs so sodding inaccessible? Today the new PA and I went off looking for a venue for something (long story, don't ask) that has to be in a new location because the weather isn't likely to hold for much longer. I had to get out of my wheelchair about six times just to get over teeny tiny steps that could be ramped with the smallest quantity of concrete and some imagination. Won't be so much of a problem in the new manual, at least. Which I have chosen. It's going to be nice. Now we start the major battle with Access to Work over whether or not they're going to pay for it. They'd better agree soon, as it's going to be a four-week wait once it's ordered, and poor Ethel isn't really working out. This week was long and very tiring.

I shall now cease complaining and return you to your regularly scheduled programming of upbeat yet cuttingly sardonic observational wit. Thank you.

Progress Report

This will not be a particularly witty or inspired post, as I'm in ever-increasing shedloads of pain. This is because I fell out of my wheelchair going up the ramp to the number 46 bus (oh yes, I plan to shout VERY LOUDLY at the relevant bus company about their shoddy ramps), landed on my head, got concussion and now have whiplash (which is so much fun on top of a chronic muscle pain condition). The weekend was a complete wash-out because they gave me diazepam to relax my neck, but mostly all it did was make me sleep all day. And now I'm just bitter. So, instead of a thought-provoking piece of writing on the evils of PAIN, have a 'five things'.

1. Work. This is going fine. I am getting around the building fairly well in my rented wheelchair - I'm calling her Ethel, as she's slow and slightly arthritic but perfectly pleasant in her own way. The job itself is a little dull while we're waiting for students to join the new study skills centre, and mostly involves administering fairly boring tests and collating the results. For hours at a time. It will get good soon, though, I'm sure. Had to miss yesterday due to needing my whiplash treated. I think people understood.

2. Wheelchair services. I am a bit irritated with them. While I understand that they have limited funding and therefore have to work by certain rules, those rules don't take into account many real-life situations, as far as I can see. They'll only give me a chair that no one with chronic pain could even think of self-propelling in. I now have to hold out and hope that Access to Work make up the shortfall towards a decent wheelchair. In the meantime, I went to get fitted for a better one: a lovely, *green* (hee! hope I don't regret that decision in a year's time - but it was that or rather dull blue or red or black) Kuschall Compact, with various adjustments being made so I can push it well without tipping out. I'm very excited. Now I just hope the ubiquitous and ever-irritating government organizations will let me have it.

3. Fun things. The gate got sorted out - did I mention? Threatening to sue Camden Council actually worked, and now I have access to my flat. This is very good. We are having a party in a week and a half (not specifically to celebrate the gate, although there should definitely be a 'happy access' cake). Hmm. Party. I should probably plan it.

4. Medical stuff is making me very unhappy. I'm arguing with doctors again. I think I'm making the right decisions, but my desire for a second opinion (sort of) about something is turning into a bigger battle than I expected. I'm going to plough on, though. I am nothing if not determined.

5. I have to get up and get dressed now, so I can meet my new PA (marvellous woman) at the supermarket and go shopping. Ethel and Marvin say 'bye'.

Work and Stuff OR Why People Insist on Pushing: a rather long-overdue update

I started this in Word and attached it to an e-mail for copying into the blog later. This is because not only is my new workplace’s computer use policy 'no personal internet use between 8 and 6', but they also *block* everything from livejournal to gmail between those times. Cruel isn't the word. I remember my first teaching job, when I was the only person in the English department who understood computers enough to know what the word 'internet' meant. How things have moved on. Gripe moan whinge, etc.

On Monday I finished day three of New Job. I was in on Thursday for the ubiquitous staff training day, then I did Friday and yesterday, so the 'off' day today was very much appreciated. I’m only supposed to do 18 hours a week, but of course I can already see myself regularly doing three full days (at least). The job title involves something rather vague about learning, and I’m still slightly mystified as to what it actually involves, but it seems to be somewhere between a literacy teacher and one-to-one learning support. This should be quite good. Yesterday I was staffing four highly irritating sessions of literacy and numeracy testing, which mostly involved thirty students at once shouting "Miss! My computer won’t work!" Loudly and repeatedly. For an hour at a time. Ah, education, how I’ve missed you.

Everything else is stress stress stress, from the joy of waiting for wheelchair services to the joy of waiting to see if the Council are actually going to force us to take them to court (I'm almost hoping they do, as it would be immensely interesting and might involve financial compensation. Although I'd prefer to be able to access my own home. Obviously). It's all getting there, though. Today we went off to collect my new, if temporary, lightweight wheelchair. It's self-propelling, as it's mainly for indoor use at work, but I tried it out on the high street today. I don't know if my hands will ever 'do' self-propelling, mostly thanks to very-bendy fingers that just don't work properly, but using it at work might 'train' them to do the right thing. It will certainly be more use than Marvin. (Sorry, Marvin. You're great at open-air festivals and going up hills, but you're not made for small doors. It's not that I don't love you, it's just that we want different things. In particular, your habit of losing footplates in the middle of the street is just annoying.)

And talking of the new wheelchair, how's this for ridiculous? I'm crossing the road this afternoon - a little more slowly than I would in Marvin, but not struggling too much - when a well-meaning bloke says "Do you want help?" Then, in response to my clear "No thank you, I'm fine," he grabs hold of my handles and starts pushing me. Again I ask him to stop, and he ignores me. Finally I bark "OI! DON'T DO THAT!" and then lecture him about how, unless specifically asked, he should not be offering help to disabled people who are getting along fine on their own, because it's patronising and insulting. He rushes off, embarassed. Why does this keep happening to me?? It's particularly funny when I'm in my powerchair, which clearly pushes itself, and am still getting offered 'help'. I must look intrinsically helpless. (Admittedly, not long after this I did ask The Girl to come and give me a push. That's different. I know her, I rang her to ask, and even she doesn't grab me and shove me into roads without making sure I actually want a push. Although I'm sure she occasionally feels like doing that.)

Side-note: Shall I name the new wheelchair? I may only have her for a couple of weeks. It would be nice to be friendly, though. Suggestions welcome. Hope everyone's having a good week! Enjoy being useful members of society, economically or otherwise.

Access Most Areas

Tonight's post brought to you by an inability to sleep (I knew I shouldn't have had that cup of tea directly before going to bed). Why do lava lamps take half an hour to warm up? Quite apart from the colossal waste of energy (when I die and go to heaven, God will send me away because I single-handedly killed off the planet with my love of 1970s-style molten meditation), it means I can't have it lull me to sleep without waiting around for it to start.

Anyway, enough of the pointless rambling, as we return to the slightly more pointed rambling. I'm just back from the ever-fabulous Greenbelt, a very open-minded Christian arts festival that I go to most years. And I have to say that, despite a few problems, provisions for wheelchair users were really very good (although I wouldn't mind joining their Access Team and helping them find ways to keep the accessible toilets free of idiots who can't be bothered to queue and the lifts free of bored teenagers just along for the ride). It was an odd weekend. Not like most Greenbelts, where I usually pack six seminars, two worship sessions, a lot of hanging out at the campsite, and something artsy and alternative into each day. In total over the three-and-a-half day weekend, I went to four talks - two by the same speaker, because he was funny and awesome and talked about love and made me cry (in a good way) - and I just didn't DO a lot, really. Partly that was because there was a feeling of 'this has all been said before' this year. I was hoping for more of the new, edgy, challenging, justice-focused, forward-thinking theology and spirituality that I usually associate with the festival. I wonder whether it was just a less-inspiring year than usual, or whether Greenbelt is losing its edge. We shall see. But it was also because we weren't camping. With Marvin in tow, and the necessity of charging him up regularly, plus my need for a decent's night sleep every now and then, we stayed in a local B&B. This was comfortable and accessible, but I won't be doing that again - I missed too much of the festival atmosphere, just by not being there after 9 or 10 most nights. That said, I accessed it all in the best way I could, and it went OK. Marvin ('leccy wheelchair) was my saving grace, although I did have to take a deep breath each morning before driving out into the crowds and hoping for the best (responses to me ranged from the usual stares as I got out and left my wheelchair behind while I went to the loo, to glares from the dozens of people who kicked my foot-rests while I was stationary but still seemed to think it was my fault). All-in-all, not bad. There are more spiritual-type thoughts going on in response to a few things that I heard/took part in while there, but those will have to wait until I've formed slightly more coherent responses to them than someone said something, it was in a tent, it was nice, it made me feel warm and fuzzy inside, also it was sunny, also I ate potato wedges, other pleasant but ultimately meaningless post-festival hippy thoughts. In other related news, thanks to the sunshine all weekend, I am a quite impressive shade of brown. Not impressive in the general sense, you understand, but more in a 'I didn't think people of Irish origin could tan at all' sense. It's made me happy, anyway.

And now we're back to reality: writing letters in which I threaten to sue my local council (just as soon as my printer can be persuaded to start working), interviewing prospective PAs (at least one of whom I dearly hope will be able to make it into work more than once a week), panicking over Access to Work applications gone wrong (but it's all good, because even though they can't buy me a shiny new wheelchair right now, they're hiring one for me in the meantime, and would I like to choose it myself? Ah, if only all government organizations could be this lovely). Holidays can't last forever, people - there are whole hordes of people just queueing up to get a chance to make my life difficult. What fun that must be for them. And I start work on Thursday. Argh.

It would all be so easy if it weren't for...1

First, there's the amazing disappearing PA. She's been wonderful and awesome for most of the two-and-a-half months during which she has had the pleasure (that may be an exaggeration) of being in my employ. She's good. She runs around the house, like me on the wrong dose of antidepressants, zooming effortlessly from one task to another and then asking what else she can do for me. Efficient, I think the word is. And friendly, and all of that. But she misses a day a week, every single week, and has vanished from this dimension entirely since Thursday. I should contact an agency and get someone temporary in. However, the last time I used an agency it was like volunteering to have my internal organs boiled in jam. Plus, the woman may turn up again like nothing happened on Monday. Erk.

Then there's the Council that's STILL refusing to tell me why they won't fix a lock onto the gate even though they know it's a requirement of the DDA that they do. Thanks to them, I'd be entirely housebound if it weren't for my PA. (Oh...) In the meantime, aforementioned Council has told its contractors to work through the weekend on the renovations on the flat opposite, 8am to 9pm, including on SUNDAY (it's the Lord's day, people, and I need to sleep through it), even though the same Council's own noise restrictions ban them from doing so. Arse crap bugger.

Then there's the neighbours of whom I am now so nervous - thanks to the 'she doesn't really need that wheelchair' incident I may have mentioned before - that my garden is becoming overrun with weeds (think Day of the Triffids only on a slightly smaller scale) because I'm too afraid to go outside. Gaaah.

And why can't I get Facebook to let me play Scrabble online?

And why is Hebrew such a tricky language, what with those weird random letters that all look the same?

And why have I run out of TV series on DVD to watch?

And why will no one come out to the pub with me tonight?

Blah.

¹I had several non-ranty thoughts that were going to become a variety of interesting blog posts, but none of them made it through. I may be losing the plot ever so slightly. I really, really want to go back to work... Which meaks it a good thing that I got the job.

Interviews, access and other great joys of life

Sorry about the long silence. I was away. Now I am back. Not much has changed at the Would-Be-Superbly-Accessible-If-The-Council- Would-Get-Their-Act-Together Flat. All is good otherwise, though.

I finally got a visit from an occupational therapist. I was referred to them back in the dawn of time (OK, March). Then I was told it would be a year-long waiting list. Then I wrote to complain and ask what exactly I was supposed to do about the fact that they had banned me from taking a bath (no, seriously) and then stuck me at the bottom of the waiting list and buggered off. Then, as if entirely by magic, The Girl got a phone call saying someone would be with us in five weeks, to sort out the most immediate problems. You see? I'm always saying complaining works. Now if only that applied to the sodding Council. But I just can't be bothered to update on the train wreck that is a tiny reasonable adjustment to the side gate of my building, and the fact that a certain North London borough council keep giving me excuses for why they can't just get on with the bloody work. Um. Where was I? Ah yes, the OT. She was nice. A BSL user, so she came with an interpreter - I wished I had the confidence to say a few things in her language, but Stage 1 BSL has only really taught me how to say 'thank you', 'toilet' and 'turn left and the library is at the end of the corridor', so it would have been a limited conversation. Anyway, it was another round of the same sorts of detailed, slightly tortuous questions that I'm getting so used to, but it was worth it. I've now been promised a bath-board, plus a few other things including a trolley to carry things round on, if I want one (I'm considering it, although it may make me feel even more like an 80-year-old than I already do, but then it would also mean fewer cups of tea ending up all over the floor). She also had a look at the access arrangements for the flat, and she may be able to intervene with the Council for me. Hurray. Except that I got the impression it would take a long time. Of course. Nothing ever happens in less than six months. Ever.

Yesterday I also had a job interview. Yes, folks, I'm actually considering returning to the wonderful world of Being An Economically Useful Member of Society. It's scary, but generally a positive thought (at the moment, while actual work is still long ago enough that I don't remember how exhausting it all is). I could do the job with my eyes shut and my wheelchair batteries removed, but I'm not sure how much I really want it. The thought of taking less-than-exciting work, even if it's still in my general 'field' of education, is depressing me slightly at the moment. But of course, we all know the joy of the six months stuck in bed if I overdo it. Dilemmas, people. I'm applying for actual teaching jobs too, then we'll see how it all goes. Access to Work, and what they can help me with, might make or break it all yet.

Note to self, for future job interviews: Do not agree to hand-write a case study for half an hour. Remember to sit properly. Insist on regular breaks. And do not, ever, under any circumstances, let them make you sit a numeracy test. The helpful-sounding offer of “We’ll give you an extra half hour, since you’re dyspraxic” turns out only to extend the terrible pain. Argh.

Everybody needs bad neighbours

I'm applying for a job. Wish me luck. Of course, this means procrastination from writing application forms (why do supporting statements have to be so long? why? why??), which means an update. While watching the entire ninth season of 'Friends' and pretending to tidy the house (my PA is eternally absent - a bit more about that later). So just a very short update then. Really.

OK. Here's a question for other people who live in that ever-exciting world where terms like 'reasonable adjustments' and 'Social Model' actually feature in your conversation, especially you recently-disabled types (isn't life great when you're just learning this stuff?)... What do you do with neighbours who resent you because you use a wheelchair, which means that they have to be "inconvenienced" by, say, (very small) adaptations to outside doors? Ever since we moved to this gorgeous new almost-accessible ground flat, I have firmly believed that several of the neighbours in our block of flats are engaging in a campaign of intimidation against the irritating disabled resident. Mostly this is down to paranoia (I'm bipolar. It's nothing if not entertaining), but the little pointed comments and complaints really do start to get a bit irritating. Particularly amusing was the woman who worried aloud about her "poor plant" because my wheelchair was stored next to it. While folded up. Folded up, people! *cough* OK, calming down now. And then yesterday I realised it wasn't all paranoia, when a run-in with certain neighbours over aforementioned very small adaptations to entrances ended with comments about how inconvenient it all is*, and how I can't really be disabled because I do gardening on good days...

So, between all that neigbourly fun, and the PA who can't sort out her home life enough to come to work at all ever, and the NHS wheelchair service that won't review me for a new chair until bloody October, and the impending DLA appeal that (for which, apparently, I at least have a good case) - well, I'm a little bit on edge this week. And currently refusing to leave the house in case I meet scary people in the hallway. Still, life is generally good. I'm looking for part-time work (did I mention how long my supporting statements have to be? I did? OK then). I'm also soon to be going away as a volunteer on a young people's activity week. Yay for keeping busy. If I don't get to do something meaningful and interesting soon, I may have to take all ten DVD boxsets of Friends and dump them out of the top floor window of a far more accessible building than the one in which I currently live. Boredom. It's even less fun than Fibromyalgia.

*I was particularly amused by The Girl's response to this, which was something along the lines of "You think you're inconvenienced? Try having to get a wheelchair in and out of this building. You bitch."**

**I may have added the 'you bitch' part for my amusement. I wasn't actually there, so I can make it sound good in my own imagination. Did I mention how bored I am? I did? OK then.

It's Official...

I'm sane. Hahahaha. *ahem* No, really... While it's hard to decipher anything psychiatrists ever say, she seemed to be leaning towards a cyclothymia diagnosis, not bipolar disorder (whether or not I was bipolar in the past). Which gives me something in common with Stephen Fry (hurrah). Either way, she disagrees with my (very stupid) GP, and says there's no possibility that I'm relapsing. Good-oh. She was a nice lady and spent an hour with me. We really liked her - right up until the point when she told me I'd have to wait six to eight months for CBT for anxiety management. She was sweet enough to apologise for this (and for the way that disabled people get treated in this country in general - that nearly made me laugh out loud - poor, sweet doctor). Still, despite the irritation of falling through yet another net and having to wait yet another forever for necessary treatment, it was nice to hear that this is not all in my head. I mean, I never thought it was - but being told quite clearly that I am having nothing but normal responses to a very stressful eighteen months is a good thing. I shall try to use this as a weapon to beat several GPs over the head with.

Plus? I'm sane. Me. That's truly brilliant. I'm still giggling. (Non-maniacally. Obviously.)

In other updates:

- The Girl - is bravely temping her way through life as a receptionist so she can support her lazy g/f, although I made her take today off. Not that we can afford for her to do so, but I needed a chaperone in case I jumped in front of a bus on my way to the psychiatrist's. She looked after me very well, and I appear to have survived the whole experience reasonably well.

- Our flatmates - are very lovely people who enjoy sharing a DVD and a bottle of a wine with us. I am going to teach English to Flatmate 1, who wants to do her Master's over here. Flatmate 2 is useful and can install dishwashers.

- TV - We are enjoying Jekyll and still catching up on Sex in the City. I greatly adored this week's Doctor Who, and wished I had been the genius at the BBC who thought of John Simm (who is in a play at Trafalgar Studios - I may have to go). Lost season three ended very cruelly and now I have to wait til February for the next installments. Nothing else is on. They need to make more good TV so I can have something to do with my time.

- Work - looks increasingly unlikely in the near future, especially as I can't even make it to my one-hour-a-week voluntary thing in a local school, currently because my wheelchair has broken down.

- Other stuff - we went to a Spoonie meet-up at the weekend, which was fab. Otherwise, I'm ridiculously bored. Any and all offers to visit me are very welcome, especially if visitors are accompanied by wine. It's my birthday quite soon. I will be turning Very Old. I may celebrate by staying in my pyjamas and ordering pizza. Also with wine. Wine is good. Bring wine, people.

(Cross-posted, as I am very tired bunny, and have been for the last two weeks. Looking forward to the end of this particular horrific flare-up, and the chance to leave the house, resume normal blogging service, etc.)

Developments, hydrotherapy, all that stuff

Things not to do before hydrotherapy:

- Forget to shave your legs
- Forget to cut your toenails
- Spend ages getting your new hair to look just right (forgetting that you're about to immerse yourself in, um, water)
- Zoom around the Royal Free Hospital's corridors in a powerchair playing 'dodge the nurse' while taking out your antipathy towards the NHS on their non-automatic doors
- Grab a take-away cup of tea, trying to drink it while you zoom down aforementioned (maze-like) corridors in a valiant effort to get to your appointment on time, spilling it all over the NHS's hallowed halls and causing porters to glare at you.

Last week I went to hydrotherapy with only my stick to help me, which turned out to be a bad move as I was in quite significant pain afterwards - not to mention the endless corridors I had to walk around. The Royal Free is one very confusing mess of hallways that go nowhere. I still can't find the visitors' cafe, although I did stumble upon it on my first visit there (when a physiotherapist made me cry). Anyway, I don't think I was judged too much for being in a chair. Physios tend to glare at walking aids as though you're committing a terrible crime by even carrying them around with you, but I seemed to get away with the wheelchair better than I do with my stick. Maybe they fear the DDA. Probably not, but I can fantasize.

So, yes. We found a flat. After two weeks of going around and around and around the houses, and finding that said houses were never even vaguely accessible (oh yes, says the letting agent, there's completely flat access to the house, and then we arrive and there are about sixteen steps up to the front door), we realised that we were looking at the wrong end of the renting market. Small one-bedroom flats and studios in this area are conversions of Victorian buildings. The Victorians liked steps, they really really did. Hundreds of the bloody things. As soon as we started looking at purpose-built blocks, 'ground floor' started to mean just that. Finally. Within two viewings we had signed a contract for a lovely little flat. Slightly run-down, maybe, but with two decent-sized bedrooms (we're going to get a flatmate in for the second), lots of space, flat access and outdoor storage for the wheelchair, and a massive area of shared garden that's set aside just for our use. I shall become a gardener, yes I shall. If I can find a chair that sits me close to the ground comfortably. Or a very large beanbag.

Church yesterday. God was definitely rolling his eyes at me, in a "I do keep telling you to stop worrying" type way. He finds me amusing like that.

Another brief update, only it probably won't be that brief.

This is a cross-post, as I am completely out of energy, and anticipate being so for some time. Sorry...

So, yes. Let's clarify what's going on in life ("Life? Don't talk to me about life") at the moment, since my brief updates have been rather crap recently. Basically, we're losing our home through a lack of money (technically it's more complicated than that, but it nonetheless wouldn't be happening if I could work). After a hellish week of flat-hunting, which led us to conclude that it's utterly impossible to find wheelchair-accessible housing in London, we have signed a contract for a semi-accessible place not far from where we live now. It's a very, very tiny studio flat (which means we'll be living in one room plus a small bathroom). I'm supposed to be getting help with adaptations to housing from the local occupational therapy department (who we really need to see, because of various problems with this place, not least the huge flight of stairs going up to it), but we've just found out there's a ten-month waiting list to see them. Nice...

I was just about coping OK with all this, until last night when I fell apart completely and had a fabulous two-hour panic attack. Today this was compounded when I dragged myself out to my hydrotherapy appointment and then found out it was cancelled. I burst into tears and ended up in a bit of a state, mostly because I'm in a lot of pain after last week's appointment and needed to see someone to discuss it. So they found me the physiotherapist, who sat and talked with me for a while. He was clearly really worried about my situation, and was offering to find me a better walking stick and so on, but I just had to get out of there as I was in a terrible state. However, I might take him up on that next week, as I keep falling...

Meanwhile, I was supposed to have an appointment with the mental health team today, but The Girl is working and can't take me, so that's had to be cancelled. They're hoping they can visit me at home, but I've no idea when that will be. In the meantime, I am really not coping. (Actually, I'm probably coping quite well under the circumstances, for someone with a history of mental health problems - but I would like to be coping better.) Oh, and we have to start packing everything up and selling almost everything we own, so that we can fit ourselves into the tiny studio flat... (All offers of packing help much appreciated - we will give you food in return. *grin*)

Oh, and I have to file my request for an appeal for Disability Living Allowance by Friday, because the idiots in the DLA office didn't bother to tell me until recently that I'd been refused it nearly a month ago (the details got 'lost in the post'), and so I've run out of time for that. Still wondering whether I should bother, given the stress it will cause me. I also still don't know what's going on with my Incapacity Benefit, i.e. whether I'll have any money to live on at all or whether it will all be taken away from me...

And finally: We invited the world's most fundamentalist, homophobic, boring and weird relatives (mine, ergo entirely my own fault) over for dinner, back in January when we thought they were sure to refuse. They said yes. Of course, we didn't realise back then how much stress we'd be under now. I'm trying to get my brain and body to stop threatening to hurt me in cruel and unusual ways, The Girl is working both daytime AND evenings on different shows, we have to move house and sell all our stuff, we may be too poor to feed ourselves quite soon, and now we're having bigoted scary relatives (and their son, who is, um, difficult) over for dinner. OH MY GOD. Anyone else feel like the world hates them and wants them to know it?

The Great London Trek went well, which is the one bright spark in everything that's going on at the moment...! We'll be collecting pledges this week, and The Girl promises to write a proper update about the walk itself at the Trek blog very soon.

It's 'brief update' time

Can't manage much of a post, as I'm off to join The Girl in the Great London Trek...! So, in brief: house-hunting is appallingly stressful, and it's only our second day on the case. We're having to down-size massively, and it's a pain. Between the need for good access (which just does not exist in most of London's housing) and the fact that I get tired verrrry easily, I think this move is going to be difficult. The stress of only being able to afford somewhere very tiny, unless we make a huge gamble/take a big risk, is also rather exhausting. I mostly want to sleep. But we soldier on - in this case, across London for FMS Awareness Day. The Girl is already near the centre of town, so she's going at quite a pace! Proper updates on the walk to follow once we've finished it.

There will very soon be a final Fibro Friday update from me at the Great London Trek. Happy International M.E./CFS and Fibromyalgia Awareness Day (tomorrow), all.

I am tired...

Two stories: invisibility

Only a week too late for Blogging Against Disablism Day (punctuality is overrated), I want to tell two stories, about visibility and invisibility.

The first involves me and my wheelchair (good old Marvin, who is still falling apart beneath me on a regular basis, but gets me to the libraries and bookshops). I'm in a cafe which shall remain nameless because its reputation would do nothing for the I live an ethical lifestyle and believe in social justice image which I am keen to hang on to. Having paid for my food, and while waiting for the helpful server to bring it to me, I've just moved away from the counter to put my money away. I reach for my bag, but I leave one strap across the back of the wheelchair - much as I keep one strap over my arm when I reach for my bag while I'm walking.

Suddenly, a staff member who has clearly had too much of the wrong sort of disability awareness training grabs the strap of my bag. I don't hear her say "Here, I'll help you," because I'm busy panicking that someone is trying to rob me. I grab it back and yell "Get off me!" before realising that she actually thinks she's being helpful. I back away from her at 4mph, suggesting that she might want to ASK next time before being that helpful again. This incident is then almost repeated, with just slight variations on a theme, when a cleaner makes a similar error in judgement about whether I want to transfer into a chair or not. (I don't.)

This is a fairly average experience for a person using a wheelchair, and I've only just begun to experience the whole world of weird ways in which people react to me when I'm not so much walking as the other thing. Still, I don't mind that much. I mean, obviously I get irritated on occasion, and in this instance I was all ready to write to the restaurant involved offering them half decent equality training to go with their exciting new ramp and automatic doors. (They'd have been so pleased.) But there's a reason why I didn't.

The second story takes place with my stick. (I haven't named her yet. Suggestions on a postcard, please.) It's hard to choose just one story, since there are so many like this, but let's go with another experience at exactly the same cafe, to make all things equal. I spend five minutes standing in the queue, with no facilities offered for those of us who can't stand for that long without significant pain resulting. I ask for help and am ignored. I get my food and drink (no offer to bring it to my table this time) and struggle to carry it to my table, limping across the cafe with my stick under my arm. Just as I'm nearly at a table, my tray flings itself towards the floor, in that way that things I'm carrying have a habit of doing. After a silent moment in which I curse Fibromyalgia and all its minions, I bend down and struggle to pick up whatever I can reach. Every head in the room turns towards for me, then turns away again. Does an ever-caring staff member offer to help? What do you think? Eventually someone cleans up the mess, but I'm already half-way out the door by that point.

This situation, too, is not uncommon. I feel just as ignored and embarassed every time I get complaints because I'm slow to get money out of my purse when my hands aren't working, every time I stand with my stick in full view of everyone in a crowded train carriage and don't get offered a seat, every time someone gives me that but you're young and healthy look when I go into an accessible toilet. Amusingly, most of these incidents take place while I'm carrying a stick - I'm not even that hard to spot. I no longer leave the stick at home, even on the few days when I don't really need it. And things are even trickier for those whose impairments are completely hidden.

Invisible disability has two aspects: impairments that cannot be seen and social prejudice that is rarely recognised. I'll never forget my wheelchair-using colleague who once told me, at an NUS Disabled Students' conference no less, that mental illness and other invisible conditions "aren't really disabling" and that I should just be thankful I could walk. Or the Deaf friend who took offence when his hearing impairment was referred to as a hidden disability and responded with an irate "No, it's a real, physical impairment" - implying that invisible conditions are not. That's when I first realised that I was, once again, lost in a limbo of invisbility (one might cross reference bisexuality here). In celebration of Blogging Against Disablism Day (even though I missed it), I'd like to highlight the prejudice and stigma associated with so many impairments that can't be seen, and the reality of invisible disability.

So I shall keep on laughing at the stupid people who think they're being helpful or nice or inclusive by treating me like an idiot when I'm using a wheelchair. They need educating, absolutely, and they need to rethink their attitudes. But I, personally, prefer those 'trying to be helpful' attitudes to the way I get treated when I'm invisible. I'm sick of everything from "You look fine to me" to suggestions of miracle cures to it's all in your head syndrome to being ignored by social services to being turned down for benefits to being mistreated by ignorant doctors to being ignored by the world. Invisible disability. It exists. We exist. We complicate things - social policy, medicine, education, employment, the law. And we're a fairly permanent fixture. Hi there. :)

So in celebration of Blogging Against Disablism Day on 1st May, remember that many disabled people get lost in the crowd a whole lot. Ever thought of offering your seat on the bus to the person who looks like they need it? It might make them more irritated than you can imagine. Or they might appreciate it more than you can imagine. If it were me? It could go either way. (Isn't that the nice thing about being an individual? Not to mention a manic depressive. *grin*)

Little update... Social care has been approved and is being sorted. DLA hasn't, and I may appeal. Lyrica is helping with pain. Life is crazy. We need to move house (again) and I don't know how we're going to find somewhere with half-decent wheelchair access which we can also afford. Hydrotherapy is incredibly painful, but good. I love my girlfriend, of whom I am particularly proud this week. I am happy. Don't forget the Great London Trek - it's this Friday, so please get sponsoring us! Help raise awareness of one of those invisible conditions that need to be taken much more seriously by medical professionals and many others in the UK. And thank you!

Are you out there, Mr Politician? OR The support systems that are making me more ill

So. The government has this big 'drive' going on to get disabled people back to work. It's nice that they've found something to keep themselves occupied with over there in Whitehall. Me? I have bigger things to worry about right now. Mostly problems that are ultimately created by, hang on, I know this one - Whitehall. Let's have a look at them one at a time, shall we?

First: the social care package.
Reasons for wanting this: it would allow me to become less reliant on my partner, who currently does practically everything for me. I am tied to doing things - from bathing to eating to going to the post office - on her schedule, meaning that I can't live a particularly independent life. Or make my own cups of tea, which is more of an issue. Tea is important.
How it would help me to get back to work: I won't be doing any kind of work at all until I am given the opportunity to live an independent life. The inequalities that I currently face need to be addressed, ideally through personal assistance that I can control myself. Cups of tea would be nice, too.
Progress on getting this: Slow. But happening. Apparently my complaint (seven pages long, with about twenty pages of supporting evidence) is being taken seriously. This could, of course, mean absolutely anything - and we might find I get turned down next week (or that they find six more weeks' worth of reasons to ask for 'more information'). Not sure what would happen then. I suppose we shall see.

Next: Incapacity Benefit.
Reasons for wanting this: I'd like to be able to buy food. Perhaps the odd box of tea, too.
How it would help me get back to work: If I can stop fighting for all of this 'support' and start getting a REST, I might actually have a chance of being able to direct my limited energy towards constructive things. Like teaching the nation's youth, perhaps. Gosh, there's a novel idea.
Progress on getting this: I'm still waiting to hear anything back from the benefits people, who asked me to fill in some kind of 'capability for any work' form, even though I'd only been on benefits for six weeks (these forms are supposed to be filled out after 28 weeks). So, if they take me off benefits now, I shall be really angry. I might throw things. After that, I might set up camp outside the grand gates of Downing Street, in my wheelchair, and see what they do with me next. I'm sure I could get some of my mates to volunteer to bring me cups of tea.

And finally: Disability Living Allowance. After over two months of hellish stress while I tried to get my DLA care allowance raised from 'lower' to 'middle' rate, I've just this morning been told that they will not reconsider my level. The next step is to appeal - if my mental health can deal with that process. It may well not survive it.
Reasons for wanting this: As other people with chronic health conditions reading this will know, disability is not exactly the world's greatest leveller. The costs involved in just being a disabled person are quite amazing - more so if you can't work. Which is even more fun when the reason you can't work is that you don't have the time or energy to do any 'recovering' because fighting the systems that are supposed to provide you with 'support' is making you more unwell... Explain that one to me, Mr Politician.
How it would help me get back to work: See above. The three-hour panic attack I had after learning today that my DLA reconsideration attempt had failed is another clue. These benefits application processes have been far more exhausting, over the last few months, than my ten years' experience of teaching 16- to 19-year-olds ever was.
Progress on getting this: Um... Since the vast majority of people are turned down at the first application and have to appeal, I should probably be pleased that I got the high rate mobility and low rate care allowances that I already receive. So why does today's decision bother me so much? I think because it's yet more proof that nobody cares. That you can work in the public services and 'give back' (whatever that means) for years, but the minute you get ill and need support yourself, you won't get it. That once more I'm being made out to be a liar, or a whinger, or a scrounger. None of which I am.

Because, you see, I'm barely coping - I'm not living. But I want to live, and have an independent life, and teach, and travel, and see my friends, and go for a drink in the pub once in a while, and WORK, and do all those things you're not supposed to want to do when you get ill...

...or are you? It's all quite confusing really.

The government's continuing inability to give me the support that is supposed to be available to disabled people in order to allow us to live independent lives is disabling me. Funny, that. So, no, Mr Politician - I will not be going back to work next week. Or the week after. Or any time soon, unless you decide to give me the support that I need to do so.

Meanwhile, I'm off to work out whether my hands are going to let me make my own cup of tea, or whether they will conspire with the dodgy kettle tipper to make me live on orange juice. Since I won't be putting up with any more crushing disappointment today, they'd better be working. Also because the vicar's coming round. Wishing you a good, stress-free day, folks.

All the fun of the mental health system: another brief update

I'm back in *it*. Oh yes I am. What excitement! I was referred to the mental health team (i.e. a barmy!doctor) this morning. My medical notes now contain the immortal words "patient denies depression." Haha. I anticipate making it very clear that I am not experiencing symptoms of bipolar disorder (please - I'm more normal than the vast majority of the population, at the moment) and get them to certify me as sane. It might help with getting better treatment. I don't believe anything can be done about my anxiety, thanks to not being able to up my dose of antidepressants - but if seeing someone from the 'team' will help useless!doc to feel better about it all, then I'm fine with that. I'm pretty sure he thinks I'm manic. I shall enjoy proving him wrongwrongwrong.

Nonetheless, I have had a hell of a few days. Extreme, utterly irrational levels of anxiety have led me to become familiar with most of the floors in our flat, and to do a lot of throwing (my mobile phone survived it, miraculously). Around this irrational behaviour I have managed to fit twenty-four straight hours of obsessive thinking (which is much less interesting than it sounds) and about ten hours of letter-writing, information-gathering and viewpoint-challenging. God bless OCD: if nothing else, it makes me get things done. I'm screaming 'discrimination' at my local council (who have become the most pressing problem, recently) with regards to care, or the lack of it. We shall see how that goes.

Normal service of proper, thoughtful, issue-based, spell-checked posting will resume as soon as my brain crawls out of the hole it's dug itself into. I look forward to it.

Brief update (in which I rant)

See? This is what happens when you allow yourself to get addicted to the internet. You go off and sulk for a week, and you think it must be much longer because you haven't been gone this long since about 2002. OK then. Life is just peachy. I've been on incapacity benefit all of six weeks and the government is already trying to get me off it. Because, yeah, being able to stay awake for all of three hours at a time makes for a highly productive teacher. Officially, and according to that 'British law' thing they used to take seriously, all I'm supposed to be sending in for 28 weeks is doctors' notes. But because the government wants to 'crack down' on 'benefit fraud', after just six weeks I (being so special) get to go through the extreme stress and worry of being examined by a stranger who has probably never heard of M.E. or FMS and will think I'm lying for the fun of it. Yes, because living on less than £60 a quid a week and lying in bed doing nothing and seeing no one ever is so much more fun than when I used to have a good job that I loved and made quite a decent living from thankyouverymuch. Because I want to be sick and in pain and losing everything I ever worked for, for the fun. Because, of course, like all sick people, I'm just plain lazy. Because being too ill to go to your support group, or to lift the batteries into your wheelchair so you can charge it up so you can just get to the post box, is so much fun in itself that I'd like to starve too. Because I'm so grateful to the government for taking twice as much money off me in council tax than they give me in 'handouts' that I think they can just take that off me too. Because paying National Insurance contributions for ten years is really worth it when you get so much good value back for your hard-earned tax money. Because bipolar disorder, doctor phobia, chronic pain and severe fatigue make it so much fun to go through endless medical examinations from the Department of Work and Pensions, who bring new meaning to the terms 'arse' and 'elbow' and 'don't know' and 'from'. Because it's all just great fun. New Labour. What a triumph. I don't care much of a mess the other lot of idiots would make, it couldn't be as bad as the months of bureaucratic crap that has caused me so much stress that I can't quite believe how appalling their record with me currently looks, and NO ONE gets to call me naive for not remembering how bad the Tories were unless they've had six months of the same. Thank you. Oh - and because it's actually a bit upsetting that the longer I spend not getting better, the more likely it starts to look that this is going to be a really quite long-term thing. Nice. But that's a whole other thought process and I'm not letting myself go there just yet, or I might fall apart entirely, and I need not to do that right now. And, finally and most ironically, because the one thing that might help me start to get better enough to go back to work might be, oh, I don't know - LESS STRESS. Idiot government.

Edited To Add: And I've just heard that social services, who have been umm-ing and ahh-ing for about six weeks over what has been made clear to them is an urgent need for care hours, and have requested (and got) ALL the medical confirmation of ALL my symptoms and ALL the ways they affect me, are STILL asking for more fucking information. While I go without showers for days on end, have now fallen several times in the past week, am not eating properly and keep making myself sicker through doing too much. I feel like giving up, telling them all where to go, crawling into bed and just bloody well staying there. Fuckers.

In good news, I seem to be able to read a bit again. We have been watching House MD, which is truly fantastically addictive (although it either freaks The Girl out when the needles appear, or just turns her into a hypochondriac). I sold some crap on ebay. I bought an iPod that I can't afford. We went to see some family members (others are pretending I don't exist). I'm avoiding church. We're still trying to work on the Great London Trek site, but I'm mostly too sick and the other one's mostly too busy. We had people over for pizza, which made me a bit tired. Um. That's about it, really.

PictureBlog - Marvin Story

It occurred to me that I have not posted much about Marvin (the 'leccy wheelchair - he's clunky and complains a lot - paranoid android - geddit?), or the positive effects on my general health and mobility that I've had recently from using a wheelchair. Then I was posting on the 'But You Don't Look Sick?' posting boards about wheelchairs and Why They Are Good, and it made me remember that I have not yet done so here. So today you can blame everyone there for my spewing forth rubbish. They'll be so pleased.

Being stuck in the house for the last few months has caused me some moderate depression - and a lot of anxiety. While we were waiting for our NHS chair (which we knew would be bulky and heavy, and I have no muscle strength for self-propelling anyway), we found a seven-year-old electric chair for sale that was sitting in someone's garage, for a fantastic price. As I keep saying to The Girl: it's possibly the best little investment I ever made. (Admittedly, the best investment I made prior to this was my Creative, which was never very user-friendly and has now died, just as its one-year warranty runs out. So as investments go, this is definitely better.)


Marvin. As you can see, he takes up half the downstairs hallway. I pray daily that I will never have to try and get him up the stairs.


Mind the blinding light. (Tremble in fear, cars, for I approach!) The Girl, as we see here, tends to do the putting together of Marvin. Which takes effort. I can manage all by myself on a reasonable day, though. Go me, etcetera.


Yes, I know I look awful in this picture.

I now use Marvin to get myself around most of the time. We sometimes switch to the manual chair (mostly because we can get it into the car, which is useful) when we go to the supermarket or a restaurant or even the theatre. (I still can't believe that I am actually able to go to the theatre again now. How good is that?!) As a result of these wheelchairs, especially the 'leccy one, I am getting my life back - getting around on local buses, attending church social events, about to start an art class, even looking into voluntary work and (for later on) paid part-time work... I've accepted that I'm not going to be back to my former self (that'll be the obsessive workaholic volunteer-for-everything can't-say-no adrenaline junkie, then) anytime soon. But, I feel like I'm starting to have access to things that I had lost. I wasn't prepared to give up completely - which I was in danger of doing - and the wheelchair has started to mean that I don't have to. I'm good with that.

And yes, it's also strange, in lots of ways. Ten years in disability rights activism, and I never really thought about how non-disabled people see wheelchair-users as either entirely invisible or very excitingly obvious!... or why dropped kerbs are important... or why steps can pose a bit of a problem to some people... We focus on what we know. And I know some of the stuff that comes with being disabled. I'm just learning how to walk the tightrope between the worlds of visible and invisible disability. Which, in a 40kg wheelchair, gets risky. (Look, I made a funny! ...*ahem*) But I shall save the ruminations on 'becoming more visible' for another time.

In short, I think wheelchairs are a fantastic spoon-saver.* I don't understand why half the medical community (and most of the rest of the world) thinks they're a bad thing that will somehow reduce our mobility. My mobility has increased since I started using the electric chair, because I'm not collapsed in bed, exhausted from post-exertional fatigue, the whole time. I don't need to use it if I'm walking short distances, and I even had one day last week when I didn't need to use my stick! I am seeing it as part of my way back into the 'real world'. If I want to work and have a life again, I need to do some of that from a wheelchair. I don't care. I can teach from a wheelchair, and I plan to do just that. I shall be a useful member of society yet. I can work on my return to being a walking member of society later.

*A phrase we use at the BYDLS posting board. Which is a very good place.

Cross-posting somewhere, soon, I'm sure...