Feel free to ignore, and I'm not looking for sympathy.
Besides, it's long and boring. No lengthy boringness should be allowed on the internet.
I know that whenever one has a moan about minor trivial stuff, one immediately finds someone else who is in a similar but worse situation. And in any case, I know that there are plenty of people a lot worse off than me. So I'm definitely not looking for sympathy.
It just annoys me. Illness, that is. Throughout my life I've had my fair share - or less - of routine illnesses and inconsequential injuries.
Then in 2004, I had all that time off, and I've never been right since, including being reduced to part time. I look back and remember how bad I was. I am not sure I realised at the time. I would typically sleep for twelve hours, do nothing, and then require a nap of an hour or two before reverting to doing nothing before another twelve hours sleep.
And gradually I began to improve. I would feel good, and I would push it, only to find that I was again tired and needing sleep. Lots of it. Sometimes it's difficult to distinguish the dull ache of exhaustion from the tender ache of soreness. I can't sit still for long without being reduced to pain. For example, on training courses, I sit there attentive for a while, then I ache and fidget. I find getting a second chair and putting my feet up helps considerably. I was on a day-long course a year or so back, and people - slight acquaintances and strangers - gave me strange looks, which is sort of embarrassing. On the other hand, on our Unit conference in October, not only did no one make any joking/snidey remarks but there were people who fetched and arranged my second chair for me.
Even so I find it tiresome that I feel the need to explain so often. I look 'normal' - but don't many people with disabilities? And sometimes I'm not disabled at all. Sometimes I can run for buses, bound up stairs. I have always been full of nervous, adrenaline-fuelled unproductive energy. So it is difficult to convince people sometimes that using a lift or standing on the down escalator is not laziness. Once I was wincing with pain, someone asked me what was the matter. Stiff and achy I replied. She sympathised, she felt the same after a new exercise class the previous evening. I know she meant well, but I don't and can't do exercise classes. Swimming's good for me, once I'm in it, but it's the getting there. And - I'll admit it - when I pay a fortune for a professional hair-dye, I'm not sure I want it ruined by constant exposure to chlorine. I get my hair done after a beach holiday, not before.
But those are the good days. The bad days are the ones where I lack the energy to do anything except mooch and procrastinate. The disturbed sleep patterns. I know I don't help myself. I should force myself to get up, to make sure I am tired at a decent time. Instead, I get up at midday on a Sunday, bed at one o'clock, up at midday on a Monday, which means, I am not ready to sleep by midnight or later, one or two sometimes, which means I have insufficient sleep to get me through Tuesday, normally a working day.
Sometimes I feel great and I enthusiastically embrace life, then I get so far and I just droop. We have been in restaurants and Jimmy knows it's time to get out. As soon as possible. I find that the reserve of adrenaline and misplaced energy can have its uses - if something matters enough I will get through it. But a routine meal out, or day at work is not enough.
It's nice to go for a walk. Even then I have to pace myself. An hour's walking is just enough. Followed by a soak in the bath or a pint in a pub. And not if I have anything planned for later.
And yet I know I am now much much better than I was three years ago, or two years ago. I have to accept that I am no better than I was a year ago. I have to accept that it probably won't get any better than this. And that is quite difficult to deal with. This is it, for life now. Of course, it's good that I get out. I do not see much of friends these days - I'm generally too nervous about making arrangements I end up cancelling. I'm a write-off for electioneering, except perhaps for telephone Voter ID, which I have never enjoyed, and am never comfortable doing.
I did join the gym at work, not for vigorous work-outs, but for yoga and pilates. I could never be bothered. Maybe I should make more of an effort. I'm gaining weight alarmingly.
But it does upset me sometimes when I know all the things I used to be capable of doing and am no longer. Having a basically sunny and optimistic personality, I keep thinking it will get better. Of course it will. who spends their life being tired and achey every day. It's a comfort to know that however bad it feels, it's not as bad as three years ago.
And then I have really bad days. sometimes, a whole week of bad days. When sleeping just isn't enough. when I wide awake and tired. They say if you want something doing, ask a busy person. I am the opposite. Sometimes I sit around doing nothing all day long. Not because of an absence of things to do, but because I don't have the energy.
As I say, I'm not looking for sympathy. Just trying to explain why sometimes I give the impression of not-being-bothered, why I am for ever destined to let people down,to let myself down.
