Tuesday, February 27, 2007

On class, status, appearances and self-sufficiency

I had dinner with The Girl's old school friends (from a long time ago) at the weekend. I found some of them difficult, to say the least. They were utterly career-focused, in a way that is a little bit alien to me at the moment - to the point where I found myself talking about work as though I still did it, because it made them feel comfortable. Also? Let's face it. Workaholics are dull. Middle class people who are obsessed with both status and privilege are dull. People who roll their eyes when your girlfriend hints at something that suggests her family has money, but are happy to talk about their houses and travels and extremely comfortable lives that have never faced any kind of challenge are dull. Dear God I was bored... I feigned more tiredness than I was actually feeling (although they really were making me feel quite unwell) and we left before dessert. Which was going to be chocolate torte. So you will understand how distressing I found it all.

It's more than just class and status, though. Those things have always bored me. I grew up with parents who were obsessed with hanging on to their newly acquired middle-class status, though I personally found it much more interesting that they originally came from Irish farming and Welsh mining stock. (But we don't mention these things - although we're allowed to be proud that various parts of our family escaped the famine because they had their own farmhouse/got out of south Wales before the collapse of the mining industry/converted from Judaism to Anglicanism, changed the family name and ended up in a very good post in the civil service.) I have never cared much for such obsession with appearances. I hate middle class dinner parties. I hate private school attitudes (note: this does not mean everyone who has been to private school - I was educated in one for three years. I mean that attitude that *some* former private school pupils have that everyone else is beneath them). I hate bank holidays spent doing DIY; estate cars with dogs in the back; precocious children whose parents think they're an awful lot more intelligent than they actually are because they can play the piano; families in Waitrose who talk loudly, complain in the queues and treat the cashier like crap; particular ex-colleagues of mine who don't like certain black celebrities because they're "only black on the outside" (???) and have posh accents; other ex-colleagues who go to the opera for £100 a time and read the kind of literature that they can't possibly enjoy, but think I'm uncultured because I'd rather pay to see a band or a film or a fringe play that might actually cause me to have fun. But most of all (and here we get to the inevitable 'shh, Nay might finally be making a point' part of the post), I hate the illusion of self-sufficiency that is behind all of these things.

Oh yes, I'm aware that I'm as bad as my parents in all these things, since I am rejecting my background in exactly the way that they did. I'm rejecting these things for what seems to me to be the only stab at integrity that I get. All these things are, to varying degrees, about caring more about how you appear than about who you really are. In my opinion, of course. And I refuse to put appearances above happiness, health, comfort or even convenience. Perhaps even more worryingly for me, though, these attitudes are also about trying to achieve 'unshakable' self-sufficiency and independence - more concepts that I am exploring and questioning these days. My parents 'got out of' their working-class backgrounds because - on one level, at least - they were afraid of not being able to support themselves and their families. They admit to this. And of course, doing just that (supporting yourself and your family) is an admirable thing. But when that becomes an obsession? Erk.

I can't stand it when people think that their self-sufficiency is some kind of triumph. These people at the dinner last weekend were insanely career-focused; not that being focused on your career is a bad thing, but if it's all you can think and talk about, is it possible that it's taking up too much of your attention? These people couldn't even conceive of other types of careers to theirs - we tried to talk to them about books, films and the theatre and got nothing but confusion back. We couldn't even make jokes about their area of work (several of them were training for the same kind of career) without making them angry. I felt like screaming at them about how fragile their position is - how self-sufficiency doesn't last - how their careers could fall apart around them if one little element of their perfect lives dropped out of place - but I thought that would be a bit cruel. So I answered their questions about what I "do" - apparently so well that they thought I was still doing it. When I went on to make it clearer that I've had to stop work because of illness, the conversation abruptly stopped with one person, while another wanted details of what I'm going to do next, and when...

Self-sufficiency is not (I believe) the ultimate achievement in life. Neither, I'm starting to realise, is a successful career. I am having to give up my independence at the moment in exchange for care from my girlfriend (it's not supposed to go like this - we were supposed to be relying on and helping each other), reliance on medical/social services and mobility aids, support from benefits, relief from medication, assistance from strangers (when you and your Girl can't get your wheelchair up the bus ramp and three random people help by pulling you up, you know that the world hasn't quite gone to hell yet)... I haven't been able to have a shower in three days because I'm scared of falling. I have a fantastic-looking 'leccy wheelchair sitting in the hallway that I can't go anywhere in yet because I can't carry the battery pack downstairs to install it. I have letters that I desperately need to post, but I don't know whether walking to the post office will be good for me or cause a horrible crash. I keep forgetting to eat because putting food together into a meal takes too much pain and effort than it's worth. I am having to rely on others for help with all these things. Sometimes, for many very good reasons, the help isn't always forthcoming. At other times, though, I just find it hard to accept (pride is a sin with which I am ever so familiar). Since I have no choice, though, I need to start accepting it. Self-sufficiency is not the most important thing in the world. Sometimes it's better to get in a wheelchair and get where you need to go than to walk there and kill yourself. Sometimes it's better to accept help so that you can have a shower, post a letter, eat a meal. Sometimes it's better to give up - even if temporarily - that career that you love so much that you just don't know what else you're going to do with yourself. Not always, but sometimes, self-sufficiency is not the most important thing in the world.

In the general news round-up, life is as follows. I got DLA at high rate for mobility and low rate for care, and am asking them to reconsider the care rate (because I need fairly constant support), so we shall see - but I am fairly happy with what I got, so I won't worry too much if I don't get it. It would be nice to have the money to pay someone to 'check on me' when The Girl is away, though. Talking of which, she's going away for a week from Monday. I need to decide what I'm going to do with myself for that week. I'd go to my dad's, but he doesn't have half of the equipment that I use to help myself (from shower stools to kettle pourers) and I don't know whether he'd be willing to do everything I need help with. Might ask anyway. Accepting support, and all that! Oh, and the wheelchair arrived. Pictures to follow. :)

Sunday, February 18, 2007

Just a short one for now... *religion alert*

Today's reading at church: the Transfiguration. Which has always confused me in the past, since it's quite an odd story. We discussed it in Bible study on Tuesday, and the same thing struck me then as struck me today when it was being preached on: you don't get to see God's glory without struggling up the mountainside first.

I'm trying to prepare my Lent confession (not putting a great deal effort into this yet - but I will). What I know that I *seriously* want God to show me is how on earth S/He can be glorified in such a - seemingly - ridiculously pointless experience as that which I'm going through now.

Well, it's been a really quite difficult week.

Yet I keep coming back to that image of the mountainside, and the shining face of God not too far off at the top...

Though the cloud from sight received Him
When the forty days were o’er,
Shall our hearts forget His promise,
"I am with you evermore"?

Wednesday, February 14, 2007

Why this illness is so hard to explain

My friend, who I've known for yonks, since third year of uni, has ME and suspected fibromyalgia. She has been ill for a long time. At uni we went to gigs together - always a key bonding experience for me! - and we really did get along very well. She's ill a lot of the time, although she still works part time. She likes to soldier on, and no one can tell her that it's sometimes better to rest than make things worse. That's her way. I accept that this is how she wants to live.

She's been questioning me. My need for a wheelchair, especially. Because she knows I can get around with a stick some of the time, she can't understand what the point of a wheelchair is. Also, my application for benefits is bothering her. She seems to think I should be working, and that I certainly don't deserve DLA, so why am I applying? She also wants to know why The Girl has to look after me so much - why I can't cook, why it's often hard to do my own laundry, why I can't clean my house, why I spend so much time in bed, why I can't get out more.

So this started to get me thinking, after I talked to her online for a while yesterday. This is the point I would like to make - although I doubt I'll be able to explain this to my friend. Here we go - my Explanation For Why I Am Not Like Everyone Else:

ME and FMS are different for every single person who has them. Some people can keep working; some can't. Some people can do some walking on some days but are bed-bound on others; some people have a more consistent level of pain and fatigue. Some people, like me, can do some things on one day that most days they wouldn't be able to think of doing. Some people get regular exercise; some people can't lift a teacup. IT VARIES. Everyone's different - and it's hard to explain the very weird, very mysterious and extremely varied symptoms that I, personally, experience.

I have a lot of fatigue, although my pain is more manageable than most people's. Yes, there are some days when I can walk into town. Not only are those days getting fewer and further between, but I PAY for those expeditions in a lot of pain and days of needing to stay in bed. I can't explain why I can't stand up long enough to cook a meal, most of the time, or why my hands don't always work well enough to make (or sometimes even hold) a cup of tea. I can't explain why the three stairs down to our living room are so difficult even when my legs aren't particularly painful. I can't explain why I throw things around all the time, dropping cups and plates and glasses, or why I bump into things (causing extreme pain when I do) all the time, or why I can't walk in a straight line anymore. I can't explain why I need The Girl with me in the bathroom when I have a shower, most of the time. I can't explain why I am having to type this from bed today, because walking around the house is just too much to contemplate, or why I probably won't be eating much today, because it would be a lot of effort. This is just the way things are. This is how I experience *my* illness.

I know that a lot of people like to soldier on. They like to live in denial, or hope that things will get better. Or they find that carrying on actually helps them - after all, some people really do respond well to the very controversial Graded Exercise Therapy that is inflicted on so many of us (and this friend of mine is indeed one of those few people who have benefited from it). I know that this approach is not really working for me. For a year after this started, I did soldier on. I took all of six weeks off work, then went straight back into it - part time at first, then quickly up to the usual, intense, highly-stressful full-time scholastic mania again. I had a very busy summer. I ignored the pain in my legs, my back and my neck - I told myself it was nothing and would go away. I ignored how tired, irritable and difficult I was getting as a result of ignoring it. When it *suddenly* hit me at full blast in October, perhaps harder because I had ignored the warning signs for so long, I had no idea what to do. I still tried to keep going. I told the The Girl "just one more week off work." I said I'd only use the stick when the pain was really bad. I fought and fought and fought to stay 'normal'.

Where has that got me? Deteriorating at an extreme rate, that's where. Barely able to leave the house for three months - finding myself extremely sick for days afterwards when I do. So now I'm trying a different approach. Yes, it does involve not working. Yes, it does involve applying for benefits (and on my DLA application I stated quite clearly that I have some better days when I can do more, and that I pay for those later). Yes, it does involve accepting that The Girl needs to do more around the house and to care for me than I would like (she does *at least* 35 hours a week of caring for me, by-the-by). And yes, some days it means going without that cup of tea I really want, because the walk to the kitchen would cause more fatigue or pain than the effort is really worth.

I am having real trouble accepting that I need the wheelchair that we're buying (can you tell? *grin*). I am terrified that friends won't know what to say when they see me in it, or that they'll subtly accuse me of not needing it. But, you know what? I'm not going to let that stop me from having my life and independence back. I can't always explain what's happening with me and why I need support. But I'm bloody well going to accept the support that I am offered or can afford (the very last of my savings will be going on this chair, and I don't care). If I don't accept these things, I will become someone that I don't want to be. I'm too worthwhile a person for that.

Monday, February 12, 2007

It has not been a bad day.

Physio was cancelled (a bit irritatingly, as I need to get started with it - but the physiotherapist has 'flu, and kindly noticed that I've been referred for FMS and so advised me not to come in, given that I really don't need viruses with this - very good of her). So I spent most of the afternoon sleeping. That was nice. Then The Girl came home and I insisted that she took me out for dinner, so off we went in the wheelchair for some Thai food. It was very good.

Talking of wheelchairs, we think we may have located an electric one - second hand - that we can just about afford. This would be great, as I am desperate to be able to get out of the house on bad days. I currently manage to walk up to the high street about one day in four, and I can't live like that. However, I am struggling with the idea. It's not so bad when The Girl's pushing me around, a) because it's only a borrowed wheelchair, b) because I can get out and use my stick (with The Girl parking the chair somewhere) anytime we get to somewhere inaccessible, and c) because I feel like it's all temporary. Buying one, especially one I could use on my own, would involve a shift in coping strategies and in my whole outlook. It would give me a huge chunk of my life back, but it's quite an adjustment. I had a major temper-tantrum about it last night. I don't bloody well *want* to be disabled. I don't even want to accept that I have an illness that will flare up and go into remission again. I want this to GO AWAY, so that I can go back to work, have a social life again, go shopping occasionally, get down the road for a pint of milk now and then, have my life back. But if I keep living in this kind of denial, given what I know about FMS and how it's generally a lifelong illlness, I will just turn myself into a hermit and get progressively more depressed as the weeks go on. So. Now to work on some level of acceptance, while still fighting to get back some mobility and normality.

Am working on a 'what my days are like now' blog post, with accompanying photos. I've taken some rather cool ones so far. It's turning into a bit of a project, and helping me to work stuff out in my head. For this I mostly thank jillyanne, whose day-in-the-life posts and photos have been really quite inspiring recently. :)

Last night I dreamt I wrote a children's book called Mr Fibromyalgia, about a little yellow man who had pain in all four quadrants of his body... I really think I might be going a bit round the twist at the moment. Still, at least these dreams are entertaining.

Saturday, February 10, 2007

Thoughts, and so on: good things and bad

1. This has been a hell of a week. I am suffering from what I think is medication-related problems, either from interaction or just from joyous side effects. Despite telephoning the idiot formerly known as lovely!doctor about twelve times over four days, he made exactly one attempt to get hold of me (on Wednesday) and has shown no interest since. Even though I keep ringing his receptionist and trying to explain how urgent the situation is. This seems somewhat ridiculous, when I'm paying him a fortune for membership of his practice. As a result, we have an NHS emergency out-of-hours doctor coming to see me today, since I can't cope anymore. We'll see what comes of that. Been very ill today and couldn't go to my YLGC exec meeting, which I am sad about as it would have been my first meeting as co-moderator. Very few 'pictures of the day' this week, as a result. There will soon be one of the new! exciting! hamster cage! which is bloody huge! though.

2. The local councillor is advocating on our behalf, as he thinks we're being treated unfairly with regards to the benefits I was discussing before. He's e-mailed someone of great importance at the council and asked if our case could be considered again, as it is an anomalous one. This is encouraging.

3. The Girl's plan to walk across London from west to east, while being sponsored for the Fibromyalgia Association UK and also towards getting me an electric wheelchair (woo! being able to leave the house! I can't wait!) is now taking shape. It may well happen in June. We need to be able to set up some sort of website to promote this. Anyone willing to help? Do let me know, if so. I am not good with the making of the things on the interwebs, no, but with help I could get better at it, yes.

4. My mother came to stay yesterday to this morning, and it was actually very nice. We chatted lots. She took me in the wheelchair to get my hair cut, which was extremely sweet of her. I talked to her about my plan to get myself some work as a disability awareness trainer, and we wondered whether she might be able to get on board (what with her mental health awareness training and occupational psychology experience). Either way, she has inspired me to keep looking into this. I do need advice from people who know how I can get further training, though. Need to contact people... Not quite sure who... Hmm. Again, anyone who knows anything or anyone that might help me there, do tell all.

5. Christine, creator of the But You Don't Look Sick forums, did an excellent interview for CNN's weblog thingy about things you can do when you visit or contact a sick person. See here for the interview. 'Tis very good indeed.

6. Must go away now, as I am nauseous and need sleep, and then I have a book to read. Hope you're all having lovely weekends.

Thursday, February 01, 2007

Friends and other good things

Go here to petition the UK Government to take ME/CFS seriously. More details of the campaign on the webpage. You can 'sign' it whether or not you have ME, but you must be in Britain (or expatriate).

Friends are wonderful people. This has been a pretty crappy week in terms of fatigue and pain, and they have made it nicer. On Monday, Rachie came over and cooked me a delicious risotto (see above). Then on Tuesday I went to Newbury to stay with my new friend Linz, with whom I spent a very lovely day just chatting, drinking tea, watching silly films and generally having a nice, laid-back time. (Photo-of-the-day of her gorgeous doggy is on my Flickr page.) I definitely need to meet more people in a similar situation to myself, as it's really nice to hang out with someone who doesn't mind that I can't do active stuff. The local ME groups seem, well, a bit weird - but there is an FMS support group that meets once a month just up the road which could be good. Should give it a go. It's just that getting to these things is a bit of a problem. Next meeting is on the same day that I've got a dermatology appt at Guy's that I've been waiting for since the dawn of time, and I appear to be unable to manage more than one thing per day at the moment. Hmm.

I am really very unwell. Yesterday I just wasn't getting out of bed at all for the extreme fatigue and muscle weakness. Today's a bit better, and I can crawl to the kitchen so at least I can eat, but I'm so dizzy when I stand up that I don't really want to move. This is frustrating, but (it turns out) not the worst thing in the world. My body is *clearly* telling me to rest, so I'm working on that. I've been listening to my Terry Pratchett audiobooks, the Classic FM CD that my mum got me for Christmas, and some Radio 4 podcasts. I've also had to chance to do some thinking about treatment options. I may have made some tentative decisions there, assuming my GP will support me in them. We shall see. Well, as much as it feels like I only just got up, it's late afternoon and I need to think about whether I'm going to attempt my BSL class today. It's unlikely, as I'm just not sure I can make it down the road to the tube station, never mind the tube and bus journeys that follow and then having to sit upright for two hours... But I shall give it some thought. If I pass out mid-way through my shower, that'll be a clue that I shouldn't! Thank goodness we had a stool small enough to fit in the shower, and that I've got used to using it...

Dear God do I need my Girl to come home. :/