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...

In a post full of cliches (that serve only to prove her continued unemployability), lilwatchergirl attempts to address the subject of WORK

I miss work. I really do. I've been a workaholic since I was about twelve. Not entirely healthy, especially not regular 60+ hour weeks - but oh what fun it all is. I miss lively 16-year-olds who talk too much and do no work. I miss coffee-and-cake breaks with colleagues where we whinge about lively 16-year-olds who talk too much and do no work. I miss getting in at 7.30am to grab a cuppa and some quiet desk space so I can get creative in my lesson planning. I think I even miss marking... OK, maybe not that.

There was a very part-time youth service outreach post advertised this week. I could do it with my eyes shut (and, perhaps more importantly, from a wheelchair if necessary). It looks great and could be a really interesting challenge. I still haven't decided whether or not to apply for it. I'm leaning towards 'no', however. I've been seeing a slow but definite improvement (in my terms - not everyone would see it in me), in pain levels especially. This is making me wonder, about 30% of the the time, whether I could take on the employment world again. Unfortunately, when I translate it into action, I find that I can't walk down the high street without a major relapse or read a book without falling asleep. This would not make for a productive Naomi. I need to be careful not to run before I can get out of the wheelchair... and so I should really be looking into voluntary work etc. Which I am. It's just all so frustrating, though. I was not blessed with the virtue of patience (or, to put it as my mother does, "You want everything yesterday"). So I should probably be cultivating it. Um. How does one go about that?

He has shown you, O man, what is good. And what does the Lord require of you? To do justly and to love mercy and to walk humbly with your God... - Micah 6:8

In news from the TV world: Life on Mars. Now there's an ending. Made my week, that did. Buffy eat your heart out. (One day I'll be able to review things with words of more than one syllable again. No, really I will.) And in my reading adventures: Muriel Spark writes like a very twisted late-1950s semi-surrealist literary angel, and I am trying to conquer various books on NLP and starting your own business. In that order.

Don't forget the Great London Trek blog. Give us your money... I can't I need it I'm homeless Oh, go on. :D

Buzzy Brain

I am having many thoughts about many things today.

I've been considering, among a lot of other things, the interesting effects of Fibromyalgia on my (already-screwed) brain chemicals. One of these is that, when I'm not completely exhausted, my thinking sometimes starts 'going' at three times the speed it normally does. Granted, it flip-flops from one incoherent thought to the next and I have no way of organising or managing any of the directions in which it moves... But, when it's not sending me batty or giving me panic attacks, it can almost be quite nice. It's completely different from the nasty ways my brain can speed up in hypomania, although I can't be clear about how. (Um... I mostly shared that to explain why the following entry may be a bit disjointed. However, I seem to have started the utter rambling incoherence already. OK then. I promise to go and have a nice cup of tea and a sit down and some lovely medication in a minute.)

So, here we go: Thoughts - Three Good and Three Bad...

Three Good

1. I had a truly lovely morning today. In conjunction with my fantastic counsellor (I much prefer that term to 'therapist', since the latter label sounds a bit creepy and reminds me of When I Was Officially Crazy), I am working on ways to be more active and 'push' myself a bit more. Not necessarily overdoing things physically - but getting out more in the wheelchair, or going places with a taxi number in my pocket, or just trying out a few things that I might have said 'no' to, for fear of fatigue etc, before. So today I went out for breakfast with The Girl before she went off to uni. Then I got in the chair, trundled (trundle trundle trundle) up to the big central library, had a cuppa in their cafe, did a bit of exploring there, went home via the shops where I stopped off for a couple of things that I needed, and got in the door just in time to see my battery light flashing to indicate that it was about to die. Now that's impressive.

2. The Girl's walk is progressing. As yet, we have not had many donations (so get giving, people!), but I managed to update the Great London Trek blog at the weekend, and I'll be sending out a LOT of e-mails about it shortly for people who might be willing to help us get sponsorship. So, we're getting somewhere! The Girl is going to spend the Easter weekend training. Which is proof that an uber-religious Christian and a non-practising Jew can co-exist perfectly peacefully during Holy Week. I'll be off hanging out with God a lot for the next five days or so (I'm excited - I've never done Holy Week in a really high church before). In turn, The Girl will worship at the temple of physical fitness and her own body good works and charitable causes. It's all good. ;)

3. The aforementioned Girl is Home. This is hugely exciting. a) It's all so much easier when she's around; b) those bloody people who kept coming into my home and complaining and criticising were driving me even more bonkers than I already am; c) I luvs her yes I does. *serious nod*

Three Bad

1. The waitress in the cafe who patted me on the shoulder rather patronisingly, after asking me if I needed help (when I was only waiting in the bloody queue for goodness sake) is going on my List. (Which, just to make this clear, is not a good thing.) Yes.

2. I can't decide whether to complain about The Carers. They were getting on my nerves so much that I ended up cancelling them yesterday, and putting up with being un-showered and un-properly-fed. (And was all the more cheerful for it.) On the one hand, I am the type that believes that complaints are a very good thing, since nothing changes without political action - which can be very small-scale. However, as someone very sensible and knowledgeable recently pointed out to me (hi Joy! *grin*), kicking up a fuss at this stage of my 'care package process' could be viewed negatively by the Council, especially as they haven't agreed to give me any care hours yet. Talking of which, I should find out about that very soon... So maybe I'll wait and see just now, and talk to the agency about it if I have to use them again. Which will only happen entirely against my will, of course. Gah.

3. I was very excited about the signing of the UN Convention on the Rights of Persons With Disabilities (even though that phrasing isn't very social model - tee hee). So when this was posted at the livejournal 'no_pity' community for disabled people, I was shocked and quite disappointed. It arrived in quite a timely fashion, too, since I was discussing Americans' attitudes to disability with American friend Penelope at the time. It's interesting to compare general attitudes in the US with general attitudes over here. I wouldn't imagine that there's a particularly big difference, since even though there's a fair bit of 'awareness' here, that doesn't always (or, often) translate into real equality. I would need to live in the US as a disabled person to make a real judgement, though. When I lived there when I was 18, I didn't know I was bipolar, and it wasn't interfering with my work, so I had no opportunity to judge. And I've never been there with a physical impairment. But, that the US didn't even send a representative, much less sign up to the Convention, is a cause for worry. Not a surprise, but a worry. Hmm.

There is so much more going on my buzzy little head... but I think that's all for now. Stay tuned for future editions, in which lilwatchergirl will pontificate on such diverse subjects as the Social Model, the joys of car parking, and the question of why West Hampstead only has about three accessible shops with only one of those being a cafe that serves breakfast that is remotely good. For now, I remain your faithful and affectionate servant, etcetera.

A Story

The story begins with a Girl.

The Girl was having an argument with her brother. She believed that she could walk across London in a day. Her brother said she’d never do it.

The Girl’s girlfriend (I know, too many girls) – sometimes known as lilwatchergirl – is also a factor in this story. Lilwatchergirl has Fibromyalgia Syndrome (FMS), a condition that causes chronic pain, severe fatigue and other random, none-too-pleasant symptoms. The Girl and lilwatchergirl have been learning a lot about this condition, and about life with a chronic illness in general, over the past eighteen months or so. Interestingly, no one else knew very much about this condition – not friends, not family, not even doctors. Most were willing to learn. There just wasn’t much information around. From others, though, we met with real prejudice - from an assumption that the condition is ‘all in your head’ (not true - this is a neurological condition, not a psychological one), to a worrying unwillingness even to believe in Fibromyalgia (which is recognised by the World Health Organization). There definitely, we realised, was a need for people willing to work towards better awareness of the condition.

So when The Girl was challenged to walk across London, she decided to do so in aid of a good cause. The Fibromyalgia Association UK is an organization that supports people with FMS and works to raise awareness of this little-known condition. The Girl is walking to raise money for them, and to raise awareness of Fibromyalgia Syndrome – so that no one else in this country has to meet with confusion, prejudice and misunderstanding when they are diagnosed with it.

Realising that walking from one side of the M25 to the other was difficult (not least because of a lack of roads), The Girl is going to walk from one end of the North Circular to the other. Her 17-mile walk will begin at Gunnersbury in the West of London, cross the City and finish at East Ham. This, incidentally, is the route of the District Line on the London Underground – and along the part of the line that she’s walking, there are only four wheelchair-accessible stations. As lilwatchergirl uses a wheelchair to travel longer distances, this lack of access to transport in London is another issue to which The Girl would like to draw attention. She’s walking on 12th May, 2007 – just in time for Fibromyalgia Awareness Day on 13th May.

The end of the story involves you. We need your support, and of course your money! Keep reading the 'walk' blog, and discover all the ways that you can help us raise awareness of Fibromyalgia Syndrome. Here are a few to get you started:

- You could mention the walk, and this site, at your blog, site or posting board.
- You could follow The Girl’s progress here as she trains for the walk, with (seated) encouragement from lilwatchergirl.
- You could sponsor The Girl at the 'walk' blog – either per mile walked (contact us if you want to do this) or with a donation.
- Most importantly, you could find out more about FMS from the Fibromyalgia Association UK.

Help us to inform others about this condition, with the goal of more equality for those with FMS - and for improved access for all disabled people, including those with ‘invisible disabilities’.

With love and thanks from Naomi (lilwatchergirl) and Sharon (The Girl), and our fabulous supporters – Vigo, our wonderful web designer, and Sharon II, our talented tech support!

P.S. Proper update to follow here soon. I've been struggling with inadequate carers, 'fibro days' and stress. All to be documented when I feel a bit better. :D