Monday, January 14, 2008

Yeah, whatever

Having not the best time health-wise at the moment. My sleep pattern's gone to shit, I'm currently getting to sleep around 6-7am and waking up maybe 3-4pm feeling more tired than when I went to bed. Forcing myself to stay awake all night (and all day) in the hope of "resetting" my body clock hasn't worked so far - maybe it will tonight. Maybe.

Anyway, this nocturnal thing has to stop, because it isn't in the slightest bit productive. You see, when it's dark, I don't want to do anything. I can't really go out for walks or look for birds or persuade myself to do anything more strenuous than watching My Greek Kitchen, playing Pokémon Diamond (got for Christmas - I don't care what anyone says, the Pokémon games rule) or reading. Saying that, I've done precisely nothing all day today either, but I guess expecting results on no sleep at all is a bit unrealistic.

I'm tired. I'm tired and bored and fed up, and I'm feeling even more disconnected than usual. Nothing engages me. I can't make decisions because I don't care either way - even deciding between tea and coffee is too much effort. I worry that this kind of thing can lead me into a bad place - the place of thinking what the hell difference does it make if I'm not even here.

It's weird. After almost 12 years of knowing there's a name for why I feel shit, I still don't see myself as ill. And people don't notice unless I tell them specifically that I have a chronic illness, quite apart from the fact that most people haven't even heard of fibromyalgia. My stock definition for "normals" is that it's like chronic fatigue syndrome but with the added bonus of pretty much constant pain or at least discomfort.* I play it down usually. Because I don't want to look like this big moaning person who blames every failure on a medical condition. I don't really want sympathy. I don't want to single myself out as different, when I'm obviously already further over the line than I'd like to be. But the problem there is that then everyone thinks that the me that's completely bent out of shape by a collection of symptoms is the real me.

And I'm not like that. I'm cheerful, energetic and enthusiastic. I'm bright, resourceful and creative. I'm fun - I make people laugh. I'm understanding and helpful and compassionate and practical and interesting. But I can't be any of that, because I'm too fucking tired.

I keep on and on using that word. Tired. I wish there was another word, because tired really doesn't cover it. I use that word so often that it doesn't have any meaning any more.

My mum told me on Boxing Day that she'd had a week of not sleeping well while her school was being inspected by OFSTED. And that it made her realise that my life must be not so nice. I think she's never had more that a single night of less-than-perfect sleep in her life before. (I on the other hand, can't actually remember the last time I had even a good night's sleep.) And my first thought was, "Good! Now you have an idea of what it's like! Now you know I'm not making it up, or exaggerating!" Not a response I'm proud of, to be honest, but it did highlight to me how isolated I feel - since I don't know many people who have sleep problems, and unless you've gone for months on end without a good night you really don't know what it's like.

But yeah. Back to the "ill" concept. I can't decide whether it's helpful to think of myself as ill or not. In my university's definition, I'm ill enough to be disabled. I dunno. Should I accept the ill label, accept that I have limitations and can't do things that I want to do, shelve my plans, and become a person who isn't anything and has no purpose? Or do I struggle on doom myself to failure?

I really don't know.

*Yeah, I know that CFS has pain as well. It's just that normals don't know that. I can't really be arsed to explain to everyone.


  1. Aw Anna, my heart goes out to you. My daughter suffers with fibromyalgia and is in constant pain. I don't know how she gets through the days sometimes. Do hope you can get some sleep soon, must be terrible. Hugs.

  2. I know you said you don't want sympathy, but you're gonna get some! You poor thing. I can't imagine how awful things are for you, and how you are feeling. I feel crap if I get a bad night's sleep, which to me is about 4 or 5 hours. To constantly not be able to get any sleep would be the end of me. I can't offer any suggestions or help, but want you to know that I care about you, and if I could do anything I would. Hoping upon hope that things get better for you soon Anna, you deserve a decent life, not the shit you have been handed. You are such a lovely girl and I am glad to consider you as a friend.

  3. (((((Anna)))))

    I do know how you feel to a certain extent, as I haven't had a decent night's sleep in quite a long time, and it's even worse with the hot flushes I get now. I do think I have something more than 'just' menopause, with some of the other symptoms I'm getting, but the nutritionist hasn't got to the bottom of it yet so I don't quite know which way to turn. I'm thinking of sacking her after my next appointment. I have to go to that as I had some saliva tests done and I need to get the results. Some mornings I am so frustrated I burst into tears. And then I have to get up to go to work! My sister thinks I have CFS, but I don't know - it certainly feels like hell sometimes.

    Keep your chin up!!

  4. I, too, am looking at the "ill" label. For quite some time, I've been feeling "off", but none of my symptoms seemed to add up to anything. After a chest pain scare, the third one this year, my doctor pretty much drained me of blood and tested for everything trying to figure out what was wrong. Turns out I have diabetes - which I may have had for years! While I have many of the symptoms, they don't present classically, which is why it was never diagnosed before. Nothing has really changed for me yet, but I know that my body is sick. But not terminally so if I take care of myself. Monday I go to class to learn how to do just that - and then it's back to "life as usual".

  5. Hi Anna, you've got a very bad case of not just the January blues but the January "feeling totally f****** shit", methinks. I could suggest all sorts of pick me ups but you've probably tried them all. The one I will suggest is a light box. It keeps me sane over the winter, improves my energy levels, sleep patterns and general mood. Tell me to f**** off if you want :-)

    For years I never got a good night's sleep with ME (mostly because of the pain at night) and still don't sleep well. The only time I sleep really well is when I'm on holiday at the seaside.

    Hope you feel better soon. Yeah, I know, that sounds pretty weak.