Part of what it's like to live with chronic pain and exhaustion:

[shiraphant]

I do intend to make a happy post soon (about My First Holiday omg omg), but for now, some Thoughts I Thought.

Here's part of a conversation I'm having with puzzled_anwen:

me: I did washing up this morning. I did ten minutes of washing up and in that time I developed a lot of pain in my mid-back, my shoulders hated me, I felt sick, my womb began to cramp and I felt as though someone had punched me in the stomach repeatedly
all those pains gradually went away when I sat down
soooooooooo
after about twelve years, I finally started to believe - really believe - that I am not lazy, I could not do more around the house "if I just wanted to do it enough", I genuinely do have something wrong with me
I am not faking just in order to get out of doing housework.
anwen: arr, I know what you mean
it'd be nice if you were *sigh*
me: I can't believe it's taken me this long to believe it and I am sure I will be doubting myself again soon
anwen: yup
I do all the time
anwen: esp when I was mostly quite well last year I was all 'oh god, maybe I wasn't really that bad' even though, you know, I WAS BEING POISONED BY MY TABLETS

Having fibro/other invisible or otherwise unverifiable illnesses (including mental illness, with which I also have daily fun in several forms) means, for many of us, daily self-doubt and guilt on top of the judging and unhelpful assumptions made about us by other people - friends, family, doctors, random strangers. (We won't even get into the frustration and depression which come from being unable to have normal bloody lives with jobs and socialising and hobbies). Our brains, like so many clueless people, tell us we're not really that ill. We're faking to get attention/avoid having to do any work. We've "embraced the sick role", whatever the shit that means. We hear it so much from others that we believe it ourselves, and we hurt ourselves, we make ourselves more ill, trying to behave as if all that were true, as if our illnesses were the convenient fictions that so many people seem to think they are, and as if we could just choose to behave like healthy, able-bodied people and we'd magically be better. Unfortunately it does not work. No amount of wanting it to be that way will make it that way, and I did not - we did not - choose to have our bodies fail in this way.

If you're one of the people who didn't need to be told this - thank you for not making our lives harder and more painful. Thank you for believing us, because it's fucking rare when anyone does.

Comments

[dragonmamma.livejournal.com]

Had post viral exhaustion after the kids at school gave me glandular fever nearly 3 years ago. Couldnt believe how tired and generally ill I felt. Kept telling myself that I was imagining it. At least I wasnt in pain and could just about manage the washing up at one go before I had to sit down. So glad it only lasted about 4 months. Difficult now to remember how bloody it was at the time. Generally speaking housework isnt that important, so do what you can when you can (ie wash up 2 cups and plates) and leave the rest. The dirt will be there long after you are dust. My own recommendation is to do the things you can manage that you enjoy, because this will make you happier (even if its lying on the sofa and listening to your favourite music twitching a toe in time cos its the only bit that doesnt hurt) Dont know how you stop feeling guilty about the things you have to leave, there are no easy answers. But as a contribution towards a good day have a couple of e-hugs. I'm going singing later on today. The U3A has started a new group "Singing for Pleasure" and altho I cant sing a note in tune I am gonna give it a go. Supposed to be good for your lungs and the production of interferon to help you feel good. (Cant say what the sound of my voice will do for the rest of them!) Maybe you could try this at home on a good day? Sing from your sofa! (Not taking the mickey - just trying to make you smile a little ) Who knows, it might help a bit and it's got to be at least as good as swearing and slightly more cheerful.

[redshira.livejournal.com]

It's amazing how long we go on telling ourselves the pain and exhaustion aren't real.

I am by nature very houseproud but yes, I've had to learn to have a very relaxed attitude towards housework and the way my house looks.

Singing! I do that quite a bit when nobody else is around. I used to perform occasionally Back In The Day so I'm not abysmal but I'm still too shy to sing in front of James. I make up silly little songs for the cats all the time, though. :)