Bits And Pieces

Just a quick one to mark the last day of Thing-A-Day 2008, in which I have achieved a massive (for me) 22 posts in 29 days. Not quite perfect, but not bad. Now that I've started posting more regularly, maybe I can keep it up. It's a positive habit. I don't have enough of those.

Apologies to everyone who's posted interesting comments to which I have yet to respond. I'll get onto it when I'm not dosed up to the eyeballs with tramadol. I should probably go and sleep that off.

Here are the updates.

• Work very busy. Got an actual apology for "the confusion" re my sick pay from the head of Personnel, and an offer of five extra days of annual leave to make up for the days I wasn't paid for over Christmas. Wonders will never cease.
  

• It's quite funny that, just as I quit Ouch!, two online friends from two different countries are about to be featured on the podcast. The global disabled community is really rather tiny.
  

• Am on CSI season six.
  

• Still on the diet.
  

• TG minus one, and I am happy.

The Damage Doctors Do

Yanub, a fellow EDS-er, said this in a recent post:

"As far as I'm concerned, doctors aren't worth seeing unless you already know what you need and can spell it out for them. And half the time, you are worse off for having consulted them in the first place."

This was in response to Elizabeth's recent posts about the way her doctors treat her. Elizabeth herself, in a recent post, really got me thinking when she mentioned gender in conjunction with the very poor way she gets treated by medical types. I don't think it can be a co-incidence that I know several men, mostly older than me, with life-altering conditions who have retained their autonomy and capacity for choice over treatment - in stark contrast to my situation and that of other disabled women I know. My father, for example, who entirely self-manages his bipolar disorder and is treated with respect by his audiologists in relation to his deafness. He's in his fifties, he was non-disabled until he was in his thirties, he went to Oxford, he sounds and appears very middle class, and he's a man. I think that may be a near-perfect combination of factors for demanding respect from medical professionals. Whereas it seems that having a condition that doesn't show much in tests and is entirely invisible, along with being female, young, gay and constantly anxious around doctors, isn't the best recipe for success with the medical profession.

Today, I finally got a letter - a month after my assessment - from the patronising, dimissive and really quite stupid psychologist who recently assessed me for CBT. In much the same way as with my quest to get some physiotherapy, my attempts to get support with anxiety have led to my being sent round and round and round the houses of the Camden PCT (which seems, as The Girl and I noted today, to have a policy of only employing idiots). It is now nine full months after my first assessment with a psychiatrist at the mental health centre - it took so long partly my referral got 'lost'. When I worked out that something was wrong, I asked my GP to refer me to their own practice psychologist, who refused to see me as (once again) I'm too complicated a case for them. Then last month, with the referral finally having gone through, I had the mental health centre psychologist's assessment (yes, it really is just one long never-ending round of assessments with this PCT). Her recommendation in this letter she's just sent me? She's referring me to the psychologist at my GP practice... It's physiotherapy all over again. Referral after slow referral, and everyone says I'm too tricky. Oh, well I'm so sorry for bothering you with my complex case. How appallingly selfish of me.

Beyond that, though, it's the tone of this letter that's really pissing me off. There are several references to what I 'believe'. She believes that she has had Ehlers-Danlos Syndrome all her life. No, I think what I told you was that it's a genetic condition (is this not a fairly straightfoward description? should I have brought out little pictures of DNA strands?) for which I have medical evidence dating back to the age of two and which a consultant recently *confirmed* that I was born with. (Not that I can understand why this was mentioned in the letter anyway - I can only assume that she wanted to cast doubt on my 'belief' about it.) She believes that not a great deal can be done to help her with pain and mobility. Actually, I was just told by an anaestheologist in a pain clinic that they will not be giving me any other pain treatment than what I've already got (which is pretty much useless), and I've been having endless assessments and sitting on endless waiting lists for physiotherapy for six fucking months. But never mind that, because clearly it's all my own fault, as ever. She told me that she did not want to be seen alone because of her severe "doctor phobia", so I saw her with her partner (her quotation marks). I'm not even going to start with what's clearly behind that one. She has had "brief" medical advice and is being referred to UCLH (again, her quotation marks - I don't know what they're about). This sentence makes light of my two-and-a-half years of hell over trying to get a diagnosis and treatment against the determination of the health services *not* to take me seriously, and of the incredible mess of mis-diagnosis that meant I had to TELL the doctors what was wrong and who to refer me to before I could get any help at all.

The difficulty is that there's nothing overtly wrong with any single reference or phrase in this letter. It looks OK. But I know - and she knows she's pointing out to me - that I pissed her off by asserting my own agenda, by challenging her assumptions, by having opinions, by insisting on having a witness in the room during my assessment, probably even by turning up in a wheelchair.

It stops. Now. I refuse to live in this no-treatment, no-interest, no-help limbo between 'too complicated' and 'coping too well'. I would rather go without medical 'help' except in emergencies, and for basic medication. No more assessments - beyond the one for physio at UCLH, which I have to have, but which will be the last. No more tests. No more consultations. I will see my GP for medication (and she will give me some pain relief that I can actually tolerate). I will go to this psychologist that I've been referred to, unless they refuse to see me (again), in which case I will walk away - I will see them on my terms, and I will personally be arranging for detailed explanations for them regarding EDS, dyspraxia and my long medical history, and this will be taken seriously or I will not see them anymore. Easy. My life. My choices.

And I will be replying to this idiot's letter with as much medical evidence, and evidence of my mobility and other impairments, as I can dig up from my ever-growing medical files. Just so she thinks twice before she refuses to take a disabled patient seriously again.

Any further advice on how to be taken seriously by a medical profession that isn't sure whether it believes in your condition and doesn't care anyway would be very, very much appreciated.


In other news, I need a new writing gig (for complex reasons that I won't get into). I'm thinking about where to send my stuff and who might be interested in it. More thought needed. Hmm.


TG minus two days - thank God

Highlights Of My Week So Far

- I have a new amplified TV aerial, which means that, despite the very weird complete lack of signal (TV or radio) I usually get in the room where I have the second telly, I'm now getting five channels in there. I am currently watching Newsnight from bed. How exciting.

- I have discovered that, not only does BBC Three show Torchwood two days early, it also puts it on the iPlayer the same day. Far too exciting. This week's episode was grand. Loving that, and also Ashes to Ashes (even though, as I was saying to Lisy today, it doesn't have the ambiguity that made Life on Mars so interesting).

- I have a dyspraxia assessment lined up for the weekend after next. This could be really good or really bad. Technically, my EDS diagnosis may preclude me from getting a diagnosis (for rather silly reasons relating the fact that medical types haven't done enough research into these impairments, and the connections between them, yet). Which won't change the fact that it's been clear I'm dyspraxic since forever, that I was given an informal dx years ago by an Ed Psych, that I'm really quite proud of myself for the coping strategies I've developed with little or no guidance, and that I'm starting to understand my own brain and the way it works to a degree that I find very useful. But having a proper diagnosis would help a lot. Not least with DSA. Well, we shall see how it goes.

- I am mastering the driving, at least around the local area. By 'mastering' I of course mean 'attempting to go five minutes down the road, ending up in the middle of the Congestion Zone going ever further west on a major road through central London, ringing The Girl (in Moscow), shrieking at her down the phone, and demanding directions back to where I wanted to go - since she, rather ironically, had an A to Z there with her and I didn't have one in the bloody car in the middle of bloody London'. But later in the day I went back in the same direction and successfully negotiated the Local One-Way System of Doom, getting to where I wanted to go and even arriving (almost) on time. And I haven't hit any lamp posts. Yet. So that's all good. Except that getting the wheelchair out of the car is not good for my back or shoulders. Hmm.

- I got a bag of nice new work clothes from Freecycle.

- I'm thinking about institutional disablism, and to what extent I'm willing to take a stand against it. Especially when no one would notice the very tiny stand that's all I can take. But that's hardly the point. The Principle Is The Thing.

- I chickened out of today's pain clinic appointment. This is good because I would have lost the plot entirely if I'd had to go alone. This is bad because the next appointment they could offer me is in the last week of July. I'm still laughing. It's all fodder to use against the GP in my demands for what I want. Go me, with the plotting and the being of evil. Even if only by accident.

This has been a possibly-quite-dull attempt to keep my posting levels up to *nearly* daily. Even if not quite.

TG minus three days

ARGH

I am so angry.

This emotion has characterized my weekend. And why? Because of something important or serious? Hardly. That wouldn't be like me at all. No, it's because of things I alluded to in my last post. Words on a screen. Virtual communities. Places where I want to fit in, but can't - because of my views on everything from the Social Model* to non-disabled people**. Because of the ways I express myself (not always all that well, apparently). Because of who I am and how others react to that.

And then I went out for a pint of milk in an effort to calm down, and I went on one crutch because it's only across the road. And I'm waiting for the little man to change to green, because when you walk slowly it isn't all that safe to try to cross the road while traffic is rushing past. And a man, who has clearly just crawled out of the pub down the road, grabs me by the arm and says "Do you need any help, love?" And I recoil, and move away, and say "No, thank you," in a rather pissed-off tone, and then have to repeat that several times as the man seems determined to help me across the road (while traffic is still moving at quite some speed).

I need some new activities for a while, ones that don't involve messageboards or internet-based worlds. Although, saying that, I've just started posting at Disaboom. It seems to be more of a wide-ranging community than others where I have more, um, interesting debates (of the sort that don't do my little brain any good at all). It's very American in terminology and approach. But if I can get past that, it might be fun. Beyond that, though, I need to do other things. I just don't have the energy for much reading or socializing - especially with work (I'm back tomorrow, after a week off for half term. Blah to that). I've just discovered 4OD and BBC iPlayer. I think I'll retreat into cult TV for a few weeks. It's nice and safe, is TV. If I disagree with something, I can find something else to watch.

Now that's revolutionary.

*A good thing. Not without exception, but nearly.
**Not all evil oppressors from whom we should separate ourselves at all costs because we're vastly superior and/or need protection (or something).

TG minus five days

Community

I've never fitted in very well.

At school I was the silent one who didn't feel the need to speak. If I didn't open my mouth until lunchtime, whose business was that but mine? As a teenager, I didn't feel an overwhelming need for any kind of social life - my own company was generally more diverting than that of others my age, who tended to have odd obsessions with things like boys (that was always going to go well) and clothes (even better) and make-up (are we seeing a pattern yet?)... Sixth form was a bit better, when I was discovering interesting music that others appreciated too. I had several people I talked to at breaks and even occasionally on the phone. Always one at a time, of course - groups were never my thing.

At university I was a bit distracted by some quite serious mental health problems, which kept me from noticing that I was still very uncomfortable with people. I didn't know how to act in groups - they made me feel strange, and I couldn't be myself or say what I meant in them. I formed intense friendships that turned out to be largely one-sided. I was uncomfortable with my own oddness. At the time I put most of this down to my dodgy mental state. It was only later that I realised it was mainly just a continuation of weirdness that had always been there.

Internet forums were a delightful alternative to conventional socializing. I found two messageboards in particular, around this time, where I learnt that there were ways to communicate that didn't involve the discomfort and exhaustion of face-to-face discussion. It seemed almost possible to avoid the negative side of the group dynamic altogether in those particular online settings. No awkwardness, no shyness, no having to think on my feet when my brain doesn't work that way, lots of time to consider what I was saying, lots of ways to avoid discussions that weren't helpful or interesting or possible.

I don't know why my early experiences of internet messageboards were almost entirely positive, but they were - I can only remember a very small number of negative experiences related to these two posting boards. Maybe part of it was that the internet was still new as a setting for discourse. Whatever it was, though, I haven't been able to replicate that experience in an internet forum since. And I do keep trying.

Today I was again reminded that now, even on the internet, I can't escape the 'group fear' and the not-fitting-in. Group dynamics are everything, online or not. Strong personalities take charge. People hand out roles and fit themselves into boxes. Inconsistencies are everywhere. There is no justice. I don't speak the language, I don't know the rules, and I'm always falling behind everyone else. You could even call it 'disabling'. If you wanted to.

I'm hugely lucky that I have friends who understand that I mostly need one-to-one interaction, a girlfriend who thinks like me on this issue, and people in my life who don't mind my social quirks and oddities. But still. Sometimes I'd like to fit in *just* a little a bit better, even so.

TG minus seven days

Bit Tisp - Tips - That Thing. You Know.

Am a little bit tipsy because the really wonderful bottle of wine that my dad gave me over Christmas had been open a week and it would have been a terrible shame not to finish it.

This cold is making me really miserable and generally ruining a perfectly good week off. I was supposed to go to a Lenten 'alternative' Mass this evening, incredibly ancient liturgy with indie music, that I was *seriously* looking forward to. I was too unwell to go. This is irritating. I'm supposed to be more or less 'over' my post-viral illness, but every time I get a cold it knocks me out for a week. I would have preferred that week not to be over the half term break. Oh well. At least I had the' flu jab, otherwise I'd have been out for a month at some point this winter. That would have been tricky and quite dull.

My garden is developing. I got out there for about twenty minutes today - probably longer than I should have been outside, with a cold - and cleared a decent stretch of flowerbed. There's some kind of weedy bulb infecting the whole of my garden including the lawn, making it very hard to clear around the 'proper' plants. I may or may not attempt to get the lawnmower out later in the week. I wonder if it's possible to mow the lawn from a wheelchair.

If you'll excuse me, I have to get back to Torchwood and Ashes to Ashes. God bless the very-creative BBC and all who sail in her. (I swear I'll do my bit in return by writing something for them this week. Maybe.) Cheers, people.

TG minus one week and three days

Saying No

I have another appointment at the amusingly-titled 'pain management clinic' next week. They sent me a text message to remind me. How kind. Now I'm going to be panicking all week, instead for just a few days beforehand. Lovely.

I've never been very good at saying no. I'm eternally determined to please all of the people, all of the time, and preferably all at once. I particularly seem to want to make doctors happy. And it's not getting me good treatment (in either sense of the word).

I'm tired of being treated like a small, rather stupid child by doctors. It's time to learn how to say 'no' to them. Even though that's going to mean a - probably temporary - refusal to work with them.

I've been thinking about this a lot, since October especially. I get diagnosed with a genetic condition that no medical professional spotted despite dozens of opportunities in childhood, and maybe hundreds in the past two years. What's the response from doctors? Do they apologise for being wrong for all those years? For treating me like I was stupid and attention-seeking and crazy and wasting their time? For inflicting, indirectly, damage that is unlikely to be reversed now? No. It's still Try Harder - Do More - Keep Going - Push Through The Pain - Do More Damage - Look More Normal - Be More Acceptable - Play Our Games.

No.

One thing I have firmly decided is that if they're going to continue to refuse me the help I ask for - from physio with local people who I trust, to any reasonable level of pain control - then I'm not turning my life upside down and shoving it in the toilet just to make them happy. I'm accepting the UCLH referral because they're apparently very good. But I'll walk away if they ask me to give up any more of my quality of life just so they can exchange my wheelchair for looking more 'normal' and being in a hell of a lot more pain. Which they don't want to help me to control anyway... (Anyone else ever feel like they're stuck in someone else's experimental hamster wheel?) Someone else is going to get used to hearing 'sorry, I can't help you' now. I wonder if they'll put up with it as quietly as I have up to now.

So, that text message ruined my day. I was going to sort out my garden and everything. Maybe tomorrow. I'm going to go and practice some driving now. Later, peeps.

I watch too much television

I think I've missed two days of updates. (To be fair, I did write yesterday, but elsewhere.) I blame having to organize YLGC meetings and having a really awful cold. I stayed in bed yesterday, then today I moved onto the sofa. Much CSI has been watched. That programme does a lot of representing of disability, and a wide range of disability-related issues at that. Are some of the writers disabled? There can be no other reason, surely, in our world where crip issues are considered so minority-interest that most producers would stick them on Radio 4 at one o'clock in the morning between Today in Parliament and the National Anthem if they had the chance. The only representation I didn't like so far was a violent bipolar girl (oh how original), but even that had an almost Social Model twist to it. Interesting stuff all round.

I should perhaps be reading sociology, but there is no energy. Maybe tomorrow. Although I also want to sort out my garden and go to Argos. We shall see how the weather turns out.

This has been another 'My life is very dull. Why am I telling you this rubbish?' post. OK then.

That beautifully ironic misnomer, 'Access to Work'

How about 'We Block Your Access to Work' or 'We Laugh At Your Inability To Open Large Double Doors Without Regularly And Painfully Subluxing Your Shoulders, You Scrounger' or 'Your Appalling Lack of Access Is Our Profit' or 'We Pay Our Assessors Six Times What You Earn Per Hour So That They Can Recommend Products That Bear No Relation To Your Needs'? Other suggestions gladly accepted.

Here is an e-mail I sent to my 'Access to Work' advisor this evening. Note that I attempted to be polite. I probably failed in a major way, though... E-mail is slightly edited to protect my identity (don't much care about anyone else's!), but very little has been taken out.

Dear Ms -,

Thank you for organizing the ergonomic and complex assessments for me, which have now resulted in some of my equipment arriving (I am still waiting for the desk chair - I'll let you know when it arrives). Some of the equipment is unsuitable and will have to be sent back, but some of of it is going to be very helpful. Many thanks.

I have been contacted by [name of assessor] at [name of company that carries out AtW's assessments]. He wanted to do an assessment of the physical premises at which I work. You may remember that I was asking urgently for such an assessment back in August, and that I was told repeatedly, both by yourself and [assessment company] that it was not possible. I have had to tell [assessor] that, since my contract ends in July - and he says that the assessment plus work on the buildings is likely to take longer than this - I cannot agree to this assessment at the moment, as it would not be of any use to me.

For your information, in relation to future jobs that I may have, [assessor] has said that I must have this assessment done at the earliest possible opportunity when I am in my next job. I would like to ask that this request is upheld, so that I need not wait so long again for the work premises assessment. The delays incurred because of confusion over whether or not such an assessment was necessary have caused me a lot of pain and stress, including having to have several weeks off work recently. I very much hope that I will now be able to keep going until July, but this is by no means certain, largely because of the building where I work, as well as the way that my employer asks me to move around a large, only partly-accessible campus so often during my working day.

Naomi -

Some more background to this is that I was asking for this assessment to be done, as a matter of urgency, between August and November (when I gave up asking, out of sheer exhaustion). Two of this company's assessors, who came to do IT and workstation assessments for me, recommended that the building assessment was done as soon as possible. Nothing happened. I continued to ask my AtW advisor for it, as the manager of the assessment company was getting nasty and practically accused me of being demanding, and still nothing happened. Then I went off work for six weeks. Now the manager of the assessment company is ringing, only six months too late, to ask if I'd like this assessment. Not only that, but he rather patronisingly told me today to get this assessment done "as quickly as possible in any future jobs you are in. Don't leave it this long in future." Oh, well, thank you so much for the advice. I only wish I'd thought of it myself. *headdesk*

Oh, and this fantastic equipment that arrived today, most of which is completely unsuitable? I've been waiting for it since November.

Yes, I forgot to post yesterday. It's been a *really* long week. Work is manic, I had to meet a scary official of the Church of England on Wednesday (the joys of being a PCC member), and I actually managed to drag myself to the pool on Thursday and do fourteen lengths through quite some pain. I want to get into a sport that I can do from my wheelchair. I just can't find one that doesn't involve hand-eye coordination or possible dislocations. I may go for something that could cause dislocations anyway. I haven't had one since I was a child, so my joints may have stiffened up just enough to avoid them now. And it would hardly be the end of the world anyway. Hmm. Must try to find out if any interesting classes are running locally and whether they'd let me do an activity from a wheelchair. I'll avoid discussing my diagnosis in too much detail. :-D


Edited to add: Yay! The Puddle is OK! And it's growing. Hurrah. The little things...

The Diversity of God: Ash Wednesday, Lent and Beyond

I've had three experiences recently that have left me contemplating the incomprehensible, all-encompasing and totally inclusive diversity of She Who Is. Some have been good experiences, others have been bad. They are shaping my Lent, so I thought I'd write about them.

The first of these moments was on Ash Wednesday. I was in a shitty mood, and really not in the right mindset for repentance or solemnity. I was at the start of this sudden increase in pain I've been having recently, and it was making me cranky. I sat at the front, in front of the pew (as my church, accessible as it is, doesn't have a good space for wheelchairs). Another wheelchair user, in a big bulky powerchair, joined me up there. We had a conversation about the pros and cons of electric wheelchairs. I wasn't very up for the chat, though, as I was having a bit of an anti-crip day. If I remember correctly, I'd spent the day trying to find some way to talk to other disabled people about pain and impairment, and I felt judged for it. As I often do. Pain can be a taboo subject among some disabled activists - absolutely not all, but a few - since it really isn't very social model. I'd been feeling like I was trying to fit models, moulds and modes of being that I didn't fit into. Yet again, a square peg for a round hole. Not welcome in either the non-disabled or the disabled world. (All of this is my perception, and may not all be reality. That isn't the point, though. What's important is that I felt this way.) It had got so bad that I was really missing the times before the wheelchair when I could melt into crowds and be invisible - all I wanted was to be healthy and sitting at the back of the church, not the front. And then I felt guilty for that trechery against my community, too. Lovely vicious cycle, there.

Remember that you are dust, and to dust you shall return...

And then little things began to come together. I couldn't tell you exactly what it was. Part of it was the priest speaking movingly about a family member's death in his sermon. A big part of it was the Ash Wednesday liturgy with the ashes on the forehead that symbolise death, mortality, suffering, repentance, commitment. Some people might find the Ash Wednesday service quite depressing. Not when it's closer to your reality than anything else you've experienced in ages, though. I got the distinct sense that God was pointing out to me (with infinite, slighty amused patience - I'm a slow learner) that She has more than enough room for my pain (and my shitty mood, and my determination to ignore everyone around me, and my lack of gratitude for everything good in my life, and my pissed-off-ness at the bus driver who'd called me Wheelchair and his ridiculously steep bus ramp, and my pain again). Immense, incomprehensible Diversity. Bigger than any limited concept of inclusiveness that my little mind can conceive.

The second experience was in a Quaker meeting that I went to at the weekend. I've been to a couple of Quaker meetings before, and enjoyed them. They're meditative, reverent and personal settings for experiencing the mystery of God. I'm impressed by the holiness of the lifestyles of the Quakers that I meet - whose commitment to peace, to activism for and with the oppressed, to protecting the planet, to a God who accepts all people regardless of sexuality or other unimportant issues, puts my limited understanding of God to shame. Yet Quaker meetings are as far from my brand of worship as you can get. I find God in symbols and images, in ritual and liturgy, in communion and communal response. They do none of these things. God within each of us is all that they need. Though it's not my style, I admire that so much. We're all children of the same very Diverse God. It's amazing how wide a range of beliefs and styles and choices that Diversity can encompass.

The third incident was this evening. I won't say much about it, because I've gone on too long. But I was faced with someone whose views on God and His (this person's God is definitely a 'He') ways would have left me feeling guilty, pointless, unwelcome and discriminated against in the past. But I didn't need to persuade him (although of course I tried *grin*) of my reality, of the Diversity of my God. It was enough that God was quietly reminding me throughout to be grateful that I am starting to learn something of how massive, broad and all-encompassing She is, and that I have a church home where I am encouraged in this aspect of my journey of faith. I have a long way to go, but I'm so glad I didn't get 'turned off' God by those who tried to persuade me that there is only one way to understand God. I would really have missed out.

This Lent I celebrate my own welcome into the Diversity of God by trying to understand something of how utterly massive it is, and I repent of my stubborn inability to see Her in everything and everyone. Even bus drivers. Even faceless bureaucrats. Even irritating managers. Even those who don't make room for others and their individual forms of faith. Even Evangelicals. While I have the greatest respect for those who don't believe in God (and I love a good debate with them about faith and related matters), I'm so glad that my journey has taken me towards a greater understanding of the incomprehensible One, not away from it. Here's to the rest of that journey.


In mostly-unrelated news, can I just make an impassioned request to everyone who ever talks to me in person? I have been told FOUR TIMES today that I "look really well". There is no good answer to this one, people. I could depress you and say "Actually, I feel utterly appalling, can barely put one foot in front of the other, am in more pain than I've had to experience for about a year and don't know why, am generally really living up to the 'invisible' part of the phrase 'invisible condition', and please could you be so good as to call an ambulance if I pass out." Or I could smile and nod and say "Thanks", and feel absolutely awful about it. I usually do the latter. Don't make me. Cheers.

Because I Have Nothing To Write

...and the Evil formerly known as Amorphia is on her way over, so I'll have no time to write later, I thought I would do a round-up of Sites I Am Reading at the moment.

Puddleblog is genius. This week, I am concerned about the puddle. What if it evaporates as it thaws out? Or turns into mucky slush and ends up as nothing but wet dirt? It's worrying.

Ooh! is a discussion site for crip types. It's laid back and small enough to be fun. We mostly talk nonsense. It's good.

My little area of London is the talk of the country at the moment, and it's not having a nice time. Poor old Camden. The bus thing was on a road I know well.

An Ouch! user, Miika, has set up a blog called Mobilise UK to inspire action, especially against the media with its blatant disablist attitudes and anti-disability bias. It's come out of the Rod Liddle situation, which is discussed a bit on the blog. I'm still considering my responses here, but expect a proper update in the form of a 'Campaigns and Issues: Part II' as soon as I can get my thoughts together. This blog has some really good advice for complaining against media publications that mistreat us. We need to show them they're not getting away with it anymore. And soon, because the anti-disabled feeling in this country is reaching quite terrifying levels. Ask Fran Lyon, Katie Thorpe, anyone who's ever been on Incapacity Benefit - and of course, Brent Martin...

And finally, talking of Ouch!, don't forget that lovely site, or their messageboards. A marvellous source of many 'hurrah! it's not just me!" moments.

Being Helpful - a little true story

So I'm getting the train home from visiting a friend. I've just had a bit of an argument with the train manager, who had put a different wheelchair user into my pre-booked wheelchair space. I was put into first class as an apology, which went some way towards making me feel better about it (although a similar thing had happened on the way over, where they also forgot to meet me at the platform and I had to lift my chair off the train, so at this point I am generally not happy with First Great Western trains. But I digress, as always). In the process of having insisted that a staff member came onto the train with me to find me a seat and fold my wheelchair, I attracted the attention of the man who's sitting across the aisle from me. He's maybe in his fifties and a bit scruffy for a first class passenger, I think to myself, in my judgemental way (it's all society's fault. I used to be a good socialist who only made judgements about posh-looking people). Anyway, he keeps glancing over at me throughout the forty-minute journey back to Paddington.

Since there are two wheelchair users on the train, the train manager makes an announcement over the tannoy letting us know that he has arranged assistance off the train for us. This is a slightly embarassing moment, but at least he was trying. As we pull into the station, I'm on the phone to my PA, telling her which platform to meet me at. In short, it's quite clear that I have all the help I need in getting off the train. It is therefore extremely irritating, when I stand up and move towards my still-folded wheelchair, to find the slightly scruffy man grabbing it by the handles and going as if to make off with it.

The ensuing conversation goes something like this:

- Please leave that, I say. A staff member is bringing the ramp for me.

- No, he says, It's fine. I work with disabled people. (What I Should Have Said then: So do I...)

- No, really, I say, quite a lot more forcefully this time. I'd rather wait for the staff member with the ramp. (What I Should Have Said instead: Oh, is this your suitcase I'm walking off with? Don't worry. I have professional experience with suitcases.)

He continues to hold on tightly to the handles of my wheelchair. I am now starting to wonder whether I'll have to explain British law in relation to theft of property. Very slowly. I am also in need of getting in my wheelchair, a possibility that has not occurred to this man, who perhaps thinks I'm going to fly off the train.

- It's fine, he says again. I'm happy to help.

- No, REALLY, I say. I don't need any more help. I would REALLY rather wait for the ramp. PLEASE let me have my wheelchair. THANK YOU.

Looking very disappointed at my refusal to except his very very helpful help, he finally gives up and goes away.

I had some conclusions and questions relating to this story, but they were dull. I may or may not recycle them for another day soon. (Have given up on calling things 'part one of two' or promising to write more on something, as I am completely unable to finish anything, ever. Although a series I didn't get round to finishing WILL get done soon.) Night-night, people.

Pain (Warning: dull alert)

Elizabeth wants to know about my pain. I think the woman is very weird for asking, but since it's just about all I can think about today, I will tell her about it. I feel bad writing about pain here, which is why I usually try not to, because I really don't have the pain levels that I know a lot of people live with. For me, it would be like talking about days when I feel a bit down as 'depression' - I don't do it, because it would irritate people with real, current mental illness. But I've had a request, so I shall comply. Everyone else, feel free not to read - this is only going to be boring with a touch of self-pity.

EDS pain is apparently a bit unusual (I wouldn't know - it's the only type of pain I really know about) in that it's both chronic and acute, and can come from several different sources. For me, the most common of these is joint pain, but if I understand correctly, it will be different for every EDSer. My joint pain then comes in two flavours. There's the sudden, pretty awful shooting pain that tells me I've either subluxed something or hyperextended it too far. That happens a lot. And there's the all-day ache where I've overused something, or where a subluxation has hurt it. My shoulder was doing this yesterday from sleeping funny on it. My knees do a fun combination of these two a LOT, often when I'm trying to sleep. Gets boring. Cold affects this. I wear a lot of clothes and have the heating up higher than most people (yes, I know it's not good for the environment). Too much movement affects it too. Wheelchair is about the only thing that helps.

Then there's the muscle pain that I think of as Fibromyalgia pain because it's related to that particular diagnosis. Unlike the other types of pain, which I had all my life but which have got worse over the last few years, this arrived really suddenly when I had the post-viral thing that kicked everything else into a higher gear. This is a bad, constant ache that feels like the muscle sheath is being *pulled* very tight all the time. It can get really distracting. I get a lot less in my upper body than I used to, thanks to Lyrica (my miracle drug), but my legs can get quite bad this way. Recently they've been killing me. I do not know why. There's evidence to suggest that this part of my pain is mainly neurological, as FMS has the effect of making people feel this sort of pain more. So when my joints hyperextend, as they've been doing for 29 years or so, the cumulative effect on my muscles is then felt more strongly because my brain is confused by it all. That's my interpretation of the theories, anyway. Heat packs, hot baths etc help this. Cold makes it intolerable.

Finally there's the 'miscellanous' EDS-related pain. Headaches are in one category. Nearly-daily migraines are currently driving me completely round the bend, mainly because, if I have even a hint of a migraine headache, I can't take my painkillers for joint stuff, or the migraine will be truly horrendous and I'll be throwing up for hours. (This is why I was hoping the pain specialist would give me some solutions that would work for both general pain and migraines. She did not. She is stupid.) Another category is nerve pain. I used to get this more before I was taking the Lyrica. Tends to be shooting pain down a nerve that I've either trapped or irritated. For this reason TENS machines are utterly useless to me (irritate the nerves further) and acupunture hasn't always been a good idea (although I plan to give this another try, as I've been referred for a course on the NHS).

Then, as I was attempting to explain to Esther last night, there's the stuff that isn't quite about pain but is somewhat related to it. A lot of my mobility issues are about this sort of thing. My joints are weak and 'go' underneath me rather regularly and unpredictably. I have poor balance. And there's the fatigue, which I believe is related to my rubbish autonomic nervous systems (basically, EDS-related heart problems that fall just under the radar. I need tests soon). And other related things that I could explain if I had more time, and if anyone reading this was remotely interested. But I doubt anyone will be.

There you are. I did warn you that was going to be dull. Happy Sunday, all. I'm off to a Quaker meeting. Cool.

Grr

The weird spammer who's been posting massive, dissertation-length comments on all the disability blogs has now taken to targeting me once a week. I am thankful for comment moderation. His (it's quite clearly a 'he') latest offering didn't specifically mention disability, but managed to fit in homophobia, mysogyny, racism, political paranoia, fabulously cult-like theories of 'the Planet of Manifest Destiny' to which we apparently go in the afterlife, and a lot of references to a very odd polytheistic religion in which the deities are apparently spiteful children who get into moods with entire races of people. OK then. So, Mr Anti-Everything Cultish Spammer Man: If you have *read* my blog, you should realise that your extremely weird views are not going to have any effect on me except to piss me off. So please go away and bug someone else. Thank you.

I have several different kinds of pain going on this morning. This is never good. Off to Reading to stay with a friend for the weekend. She has a bath lift. I am inordinately excited about this.

Angry And Ecstatic At Once. It Can't Be Normal

Day 8 of this post-a-day malarkey.

So I get in from work today to find that, once again, my path to the gate that gives me level access to my flat is BLOCKED by an old Christmas tree (one of several in the side alley, actually, but at least the others are out of the way). This has happened about four times in the six months I've lived here, despite repeated letters to other residents of the building pleading with them to keep their rubbish away from the gate, and despite the Council putting up a 'Do not leave rubbish here' type sign. I wrote a letter pointing out my I can't leave the house predicament, copied it five times and got PA to drop it into the other five flats in the building. And what should I get half an hour later but a knock on the door with a COMPLAINT from a neighbour who is offended that I should think it's her (get this) because she doesn't celebrate Christmas. I tried to point out that the fact that I can't leave the house is a bit more important. She wasn't persuaded. OK then.

And in better news:

I GOT INTO LEEDS.

In September I will start my (second) MA. And this time it's in something I really, really, really want to study. I didn't around to opening my post until an hour after I got home, what with the ranting over the Christmas tree and the writing of letters. The first thing I did was *glee!* about it in the general direction of my flatmate. Then I did the same with my PA. Then I called The Girl - in Russia - to do the same to her. Heh.

The best thing about this? I don't have to go back to my job after July. That shouldn't be the best thing, but it really is.

So now I get to start sorting things out - applying for Disabled Students' Allowance; talking to the Occupational Therapist (in the hope that I can get an OT report so that the uni gives me an adapted room - fully accessible accommodation! what joy!!); talking to the Council (they may have to change my Direct Payments hours when I'm living alone for half the week); getting a dyspraxia assessment... Ah, many forms. That's what I live for. Oh, and I should probably read up on sociology, about which I know practically nothing. That's a good foundation for an Master's degree, isn't it?

Driving

I just drove to Lisy Babe's house and back again (stopping there for a while in between, obviously). This is a Big Deal. It's the furthest I've driven for about five years, at least in London. I can drive a long way in Ireland (where 'driving' tends to translate 'sitting behind a tractor for five hours on the one-lane road between two major cities'), and to lesser extent in the New Forest, where I've done most of my driving. London driving scares me a lot. I'm not a bad driver - hesitant, but safe. I'm a really, hugely anxious driver though. This is mainly because I get lost, frequently, because I'm so dyspraxic.

To explain: I can't easily see directions, roads, landmarks in my head. I can see some of these, but there will be big 'gaps', and in those gaps will be where I get lost. I can only 'feel' them. I'll know, eventually, that I'm not on the right street, but only because it won't feel right. Maps are even worse. When The Girl first met me, she made the rather stupid mistake, a few times, of asking me to navigate while she drove. After many temper tantrums, a lot of near-violent arguments and several death threats, she's stopped doing that now. One cure for this is to try to work with my brain, not against it. I think visually, but I access those visuals linguistically. Written directions - detailed - on the dashboard used to work for me. Leave Hatch Road by turning right onto River Street just before the pub. Continue past 1, 2, 3 side roads on the right and a cafe. Cross two sets of traffic lights. Then turn left immediately after Barclays bank. The only problem with this being that the directions have to be so detailed, I tend to stop looking at the actual road...

I also can't drive if someone else is in the car with me - can't see that ever changing - since my driving nerves are a lot worse if I feel judged or watched. On my own I can get lost four or five times and it's not major. The Girl will attest to how I constantly SCREAM at her if I get lost, or even just get jumpy, while I'm driving with her next to me.

So, yes, only a five minute drive (for most people - clearly it's fifteen minutes if you allow for getting lost at least once in each direction, but I factored that in), but still quite a triumph. I should set my next goal. If I can get myself to church - a drive of at least fifteen minutes including a very scary four-lane interchange - then my social life will improve massively and I will feel a lot more independent (and less reliant on the rubbish limited service of Taxicard cabs, and not quite so much left at the mercy of ignorant bus drivers with appallingly designed ramps).

Lisy and I watched the weirdest film ever. It was Korean. Really quite disturbing, although oddly entertaining too. I think I missed a lot due to conventions that I just didn't understand. Parts of it made absolutely no sense.

Right, that's it...

...I'm never getting the C11 bus anymore. Quite apart from the fact that tonight's driver called me 'Wheelchair', as in "Wheelchair, where do you want to get off?" (and to think I used to be an actual person)*, the ramp was so steep that I couldn't even begin to get up it. It took three large men pushing and pulling to get me up the ramp and over that dreadful 'lip' that caused me a backwards fall and a head injury a few months ago. But Metroline say their buses are accessible, so that's OK then...

I have Ash Wednesday thoughts, but they are serious and do not go well with the rant. Tomorrow. 

Today was long and somewhat confusing. I like Thursdays. No working.


*Witty comebacks to this would be much appreciated. I couldn't think of anything good, so I just mumbled my destination and hoped not too many people were staring at me after the whole ramp debacle.

The List

Today I have achieved the following:

- Got up.
- Gone to Tesco's to buy food, with assistance of PA.
- Come home again.
- Watched CSI.
- Fell asleep in front of the TV a couple of times.
- Spent a few hours researching and considering the legalities, under DDA precedent, of treating disability leave and sick leave as the same thing (complicated. talking to my union).
- Watched an episode of The Mighty Boosh.
- Going to bed now.

My life resembles this BYDLS merchandise joke, if you insert 'very occasional bouts of activism' here and there.

No, I'm not even pretending this passes for creativity. It was, at least, a post.

Hello, people.

So. Yesterday The Girl went to Moscow. She has gone for an entire month. She details the reasons in her audioblog (I have not transcribed it yet - apologies to any D/deaf people who come across it until I do) which have something to do with her being a very very arty director type. Why she can't be a very very arty director type in London, I don't know. Hmph.



Because I miss her, here is a photo of her that I played with a bit. It is my creativity for the day. (Doesn't she just have the cutest eyebrows?) To anyone who would argue that it isn't creative enough, please remember that I went to work today, complete with EDS and FMS and a knee that won't stop subluxing (yes it hurts when your knee keeps falling out of its socket and popping back again), with a wheelchair in tow, in an office whose equipment and layout cause me excessive amounts of pain even compared to what I'm used to, to work for people who think Disability Equality means adding a nice clause to an official statement and not giving any sick pay to people with chronic illnesses that they've known about since the beginning.

But really, I love my work...

I have been playing with lolcats. Why did it take me this many years to discover the wonder of lolcats? I know not. This is my current favourite. I can't stop laughing at it.

That really has been the sum total of my day, apart from two episodes of Star Trek: Deep Space Nine (it's on Virgin Central and they're into the later episodes that I never saw although I do not know why) and a lot of controversy on my posting boards. Ah, fun and games.

Must remember to contact Lovely Replacement PA asap. I can't live on microwave meals and diet coke for the rest of the month. I mean, I could, but I'd be in a bit of a pathetic state by the time The Girl came home. She wouldn't be pleased. Though she is awfully good at picking up the pieces upon her return from exotic destinations. (I asked her recently what she'd be doing with her time now if I hadn't become disabled. She said she'd have found something to occupy her. I just can't see it occupying her quite so very well.) *waves* to TG, in case she's reading. :D

Staying Active

"My, what a year 2008 is already turning out to be for disabled people..."

An Ouch Blog post in which I bemoan my inability to do anything useful. And other, more serious things.

That's all the creativity I have in me, for now, since it took me all day.

Please Stand By

I am ill. This is not a particularly unusual thing for me. But still, irritating on a Saturday evening. This time it's because I'm a human guinea pig yet again. I warned the doctor in the pain clinic that I have a dodgy, EDS-y heart and autonomic nervous system, and that the medication she wanted me to try had already caused me chest pain and palpitations and high blood pressure and headaches. She assured me that she knew best (although she did say I could come off if I got side effects). Well, I gave it ten days, but I've had a seriously awful headache - as distinct from a migraine - every day since I've been on it, and today the chest pain and heart fun started up. So I think we're giving up on that one. It wasn't doing anything for the pain anyway. So, I've had a really thumping bad headache all day, and the only way to improve it seems to be lie very flat all day. Which precludes the writing of very much. Instead I have done a picture. It is me with a headache. I thought I should make this clear, since when The Girl saw it, she thought it was me "being a mental". It is not. OK then.

It's funny how you redefine concepts like 'ill' when you have a chronic condition. There was a time, soon after I gained my latest impairment, when my perception was that I was always ill. Then daily life became more about disability, impairment and other more neutral or even positive terms, because I couldn't live life with the negative self-image that I was bestowing on myself with the concept of 'sick person'. Nothing changed, in physical terms, but I learned how to extrapolate my concepts of injustice and social barriers onto a physical, rather than a mental health related, situation. It's surprising how much of an effort was involved in that extrapolation, considering how much I understood and believed in the cause of disability rights. But I digress (what else is new). I try not to see myself as a 'sick person' anymore. Inevitably, though, when you get ill more than most people, you're going to find the whole thing a bit dull. While I know I should be grateful that more isn't 'wrong' than just aches and pain and headaches, at least most of the time, I still can't interpret these things positively. So, I shan't. So there.

I'm really very behind with my blogging schedule - haven't written about France (chair-skiing!), or done my other two 'protest' posts, or written the slightly more political stuff I wanted to do for the BBC. I shall endeavour to do all that starting tomorrow. Just as soon as I stop wanting to throw up.

The Girl is going away for a month as part of her course. She's going to Moscow. Apparently she blogged about it for her audioblog, but I don't know if she remembered to upload the thing. A minute ago she thought she had lost all the photos in her phone, which was causing some stress. Not because she thought she had lost photos of me, or anything nearly that romantic, but because she thought her one hundred and something snaps of *London Underground station signs* were gone. Oh, the tragedy... Don't ask me to explain why she collects pictures of tube station signs. I don't really understand.

This is a headachy lilwatchergirl signing off for now. Please stand by - regular daily creativity will resume tomorrow.

Stuff I Need

Here beginneth 29 days (I am reliably informed it’s a leap year – being me, I forgot) in which I have resolved to be creative daily. You’re going to suffer for this far more than I am, people. And in a move my hands will seriously make me regret later, I have started this in the cab home, with actual writing in a notebook, because I left my ‘officially for work, really mostly for blogging on the bus’ PDA at work. Where it is supposed to be. Where it is also useless. I can’t read my own handwriting after three sentences, even with this exciting ergonomic pen (digression: I discovered today that our Finance Manager can't say ergonomic, and then she kept reading the word aloud) that I was told would help. So this could be fun to type up later. (Digression: Ha ha, says my middle finger. You think a silly wide-grip pen will stop ME from bending backwards and seizing up and making your handwriting illegible? Never! I am the mighty hypermobile middle finger of DOOM! Or something.) What I need, I have concluded, is an HTC. I have needed one ever since my friend proudly showed me his in the pub (digression: and then I had to ask The Girl what these little miracles in smartphone form were called). PDAs are good for making notes in meetings, but that’s about where the usefulness of mine ends, on account of how my workplace owns it and it syncs with my work computer every morning, so that using it to write creative things that suggest my work is both unfulfilling and frustrating is probably not a good idea. I had a fantastic smartphone for about six months last year – it was second-hand and didn’t last long, but it was wonderful – whose most amazingest brilliantest feature was that it reminded me of things I needed to do. Sheer genius. When you have a brain that’s been addled by a fabulous combination of dyspraxia, chronic pain, some neurological problems and the long-term effects of psychotropic medication, it is indescribably useful to be woken up by a flashing RING YOUR MOTHER message, along with appropriately irritating buzzing noise. Even if it doesn’t cheer you up quite as much as breakfast in bed. Plus, the new ones can apparently do even more. This makes me happy, and makes me want pretty shiny things that I cannot afford. And this is the odd thing about acquiring a disability*. Just when you start becoming a lot less economically productive, your need for stuff starts to increase in inverse proportion. Partly to compensate for how dull your life is getting. Mainly because disability is expensive. I used to think of myself as a virtuous spiritual person with socialist leanings and no need for material things. Now I covet shiny titanium wheelchairs and power-assist wheels and all the colourful walking sticks that my hat-stand can hold and sleek black crutches and Motability cars (I haven’t even re-mastered driving yet) and a fully accessible house with a wetroom and, most of all, an HTC.

It was almost ironic, then, that I had a meeting today in which equipment was ordered for me which I’ve been waiting for since November. (Bureaucracy.) Access to Work is funding it. It’s costing a sum of money that I find quite difficult to get my head around. And I don’t really want any of it. The made-for-me super-comfy office chair will be lovely, and having a keyboard and mouse that don’t cause me extreme amounts of pain will be nice. But I don’t need any of it. Well, not like I need an HTC. Hmm. Added to what they’ve already spent on my wheelchair and the PDA, AtW are spending an absolute fortune on me. It’s a shame I’m probably off to university in September.

I wonder if I’ll get to keep the office chair...

I think I’m going to have to give up coveting for Lent.

So. No abstract photo or pretty drawing or bad poetry for ‘thing-a-day’ today. Just this post. I am too busy forcing myself to be creative to, um, be creative. See? I warned you that this month wasn’t going to be entertaining. Come, share in the utter dullness that is my life. See you tomorrow.


*A concept I shall be exploring more over at the Ouch blog soon. Maybe.