Monday, 27 April 2009

quarter to 1am

Yet again I'm up late unable to sleep, yet again my brain won't stop thinking alsorts of sad and nasty thoughts that I've carefully stopped myself from thinking about all day. Like how Amy is dead, I had forgotten again and then had to remember all over again, is that normal? How long will this keep happening?

Worries turn up late at night too, while you're trying to fall asleep. I've started thinking about how much worse I feel all the time, or seem to. Whenever I mention this to anyone, whether doctor or non-doctor, I get a fairly similar response along the lines that I am a neurotic hypochondriac (expressed in various different degrees of politeness and directness). But that is how I feel. Eighteen months ago I could do more than I can do now, it's fairly incontrovertable fact, I've looked through my diaries, seen what an average day and an average week was eighteen or so months ago. Back then I was cooking dinner on a regular, almost daily basis for the family, attending church at least every two weeks, going to life group and meeting up with friends at least once a week. I spent less time in bed, less time resting, I could routinely be out for two hours without exceptional payback.

Now I haven't been to church in a year, haven't made it to life group (church small/cell group) since January, can just about heat something ready made up and prepare a couple of vegetables on an occasional basis and I might make it to meet a friend once a week. If I am out for two hours I limp home and feel appalling afterwards, need a lie down or a nap at least three or four times a week just to make it through the day. I am spending far less time using a computer and far more on the sofa.

When's it going to stop? And how can I stop the tide from turning? How can I do anything when no doctor, or even friend, will listen to me? It's not in my head, honestly, despite what the DWP may say.

In terms of mental health I'm probably doing better than eighteen months ago, I still struggle but am better at coping with the struggles. That said I still get very black, very low, hopeless moods.

One of my greatest fears is the ME just getting worse and worse and worse and ending up first house bound, then bed bound and gradually continuing to worsen. I don't fear death even a tiny fraction as much as this, I would rather die than live in a living death and I would hate the burden it would place on my family.

It's bad enough that they're already having to support me right now, 24 and living at home, asking your parents to buy you shampoo, lovely. I also can't bear the thought of a future spent wrestling with the Jobcentre and DWP, constantly being harrassed with forms, interviews, pointless schemes, stress and endless bureaucratic proceedures in a huge faceless system. It becomes the anvil that breaks the camel's back. The way the disabled are treated by these systems is beyond appalling, it is the equivalent of beating people savagely because they have the temerity to become ill or disabled.

Then there's all the smashed, crushed dreams, the pain of seeing contemporaries succeed and enjoy life and being unable to join in, even from the sidelines. We could add to this loneliness, feeling like a paraiah, like you don't belong - especially in the church, where everyone is supposed to be perfect and happy. I feel invisible. When people do see me it is often in the same way that we all feel a morbid curiosity about a road accident and simply have to stare, to see bad things happen to other people and watch vicariously. There's nothing Christians like more than hearing "everything's terrible but the Lord is great" stories; it's often true, it's not God's goodness in bad times I'm casting doubt on, if only we could grasp how much we can be Jesus to one another. We do need one another, just telling someone to rely on God, then walking away, is not a solution.

It's now five past one in the morning and I do feel a bit better for having got these worries out of me and onto the page. Sorry if you're offended by anything I've said, sorry for the self-pity of this post, I'm afraid sometimes you end up in a mood where you can only say how you truly feel, not just be polite and British like usual. Sorry I'm not being as positive as you would like me to be, sometimes I feel like people want me to be positive more for their comfort than for mine. Sometimes the freedom to admit that things are pretty terrible helps a lot, the trick is not to wallow (disclaimer: I have not wallowing 'L-plates' on).

1 comment:

  1. This was such a good and honest post. People totally don't get it but I do. Life is super scary. Sometimes I have to focus on the day at hand, other times I have to dream of a future without cfs (even though I know its unlikely) and sometimes I have to think to supposedly better days that are coming a long way into the future...whatever it takes to survive.

    You are amazing. I love you! We'll do this together as much as possible.

    Love you!