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

[ailbhe]

I owe my ability to do, um, anything much, to the people who ROARED this at me when I had post-viral fatigue. My own self-doubt would have made me permanently severely disabled, else.

[redshira.livejournal.com]

I am very glad that people did ROAR this at you. It needs to be a perfectly normal attitude towards ill people but apparently that would make far too much sense for society as a whole.

[ailbhe]

I really like to see people saying it all aloud. The more people who say it the fewer people will be made iller by it, I think.

[redshira.livejournal.com]

Yes indeed! I shall bear this in mind next time I feel attention-whorey when I want to say things in public about the reality of being permanently ill. It benefits other people when I say things like this.

[brain-opera.livejournal.com]

Man, this is relevant right now. My fucking landlord sent me a bastardy email telling me my flat was in poor condition. 90% of the time I don't have the energy to clean it.

[redshira.livejournal.com]

I just saw that! What a fucking hypocritical shitweasel. How fucking dare he? He put your life at risk because he doesn't care to take the responsibility he's legally obliged to take. Fuck him.

[myselftheliar.livejournal.com]

I believe in you <3

[redshira.livejournal.com]

and I believe in you! You are 80s-style magical rainbow ponies.

Or something.

The point is, I love yer face.

[lozette.livejournal.com]

I don't have much of an idea what it's like, but Reading stuff like this helps me understand! You're a trooper, lady.

[redshira.livejournal.com]

Thank you! You're pretty fantastic yourself. Also, I meant to say this on your post but I forgot so I'm saying it here in case I forget again, but the point of doing all the gym stuff even though it *gasp* doesn't lead to weight loss is you enjoy it, and it makes you strong and you like being strong.

[goodqueenmolly.livejournal.com]

I wanted to write something deep and meaningful, but all I can manage is - yes, me too.

[redshira.livejournal.com]

No need for deep and meaningful; I know how you struggle with this.

[apiphile.livejournal.com]

what's sad is you could substitute various mental illness for chronic illnesses here and the argument would be the same.

Anyway, I'm glad you sat down. You don't need to keep pushing yourself into additional agony in order to adhere to impossible standards set by people who aren't there. Rest when you're tired.

[redshira.livejournal.com]

Yes, indeed. I did intend for "invisible illnesses" to include mental illness but I didn't make it clear enough. I shall amend the post now.

I sat down because I couldn't tell if I wanted to throw up or pass out and even I will concede that if washing up makes me feel like that then I should probably sit the fuck down.

[puzzled-anwen.livejournal.com]

"I couldn't tell if I wanted to throw up or pass out and even I will concede that if washing up makes me feel like that then I should probably sit the fuck down."

I think someone should cross-stitch this for you to hang over the sink.

[redshira.livejournal.com]

I am going to make a sign that says "if washing up is making you feel in any way unwell or in pain, WHOEVER YOU ARE, sit DOWN NOW." Because James gets back pain and hand/wrist pain and I will tell myself it only applies to him if I don't include WHOEVER YOU ARE.

[kalmialatifolia]

del linked me.

um. thank you. *waves hand* it's a good post.

[redshira.livejournal.com]

Hello! I'm glad you like it. It's not like it's BRAND NEW INFORMATION or anything but I felt like I should say it in case people who read my LJ needed reminding. Or in case I want to say it later on but lack the words; I can just point people here instead.

[deborah_c]

*sends hugs*

My GP is currently in a state of not-believing-there's-something-wrong with me, and claims I'm just depressed. I know that I'm not depressed; fortunately, I've managed to bypass the GP and get a hospital appointment tomorrow with someone that will actually take me seriously (and can do something about it!)

We'll gloss over the whole hospital-booking-appointment-for-the-wrong-year part, I think, since I'm feeling charitable...

[ailbhe]

Oh, wow, I'm so glad you've got a proper appointment. My mother had a GP swear up and down for years she was depressed - she had undiagnosed Lyme and needed to change GP to get treatment (which was amazingly effective, thankfully; Irish sheep Lyme is apparently feebler than USian deer Lyme, or something).

[redshira.livejournal.com]

*sends hugs*

I'm a) sorry that your GP is rubbish b) very, very glad you got yourself a proper appointment and hope that you can get real help.

...for the wrong year? *boggles*

[reddragdiva]

*smooch* *sympathy*

[redshira.livejournal.com]

I always like a smooch :D

[kankurette.livejournal.com]

Although I'm not as ill as you and Anwen, I get a bit of this myself. I wrote recently on my LJ about a trip to London to see my brother, and Mum and me were walking around on the Underground and OK, we didn't go too far, but I was feeling dizzy and sick and in a lot of pain and had to sit down. And Mum had a go at me and said, "You're always ill, you're never well, do you expect me to be surprised, blah blah blah" and I know she was tired and all, but it hurt. A lot. Because I genuinely was ill and walking around a lot and not having any sleep breaks does that to me, not to mention I didn't have a proper lunch. And then at the office Christmas party last year, one of my colleagues made a crack about me being lazy, and it upset me somewhat as I wonder at times if she really does think like this.
I know I've had depression for years and it makes me tired, but before the CFS started, I was working full-time and going clubbing and stuff. I can't do that now. It's pretty fucking obvious there is SOMETHING WRONG.
I've never believed people with 'invisible illnesses' are faking it as one of my best friends has ME and I remember just how ill she was and all the shit she had to go through, but having CFS myself has really brought it home to me.

[redshira.livejournal.com]

Oh my god, please rest rest rest, never push yourself; you have CFS as a post-viral thing, yes? It makes me so angry that so many people are essentially pushed into permanent disability by the judgemental attitudes of people around them when if they'd just been allowed to get the rest they needed they might have been ok - or at least less ill on a long-term basis. I'm sorry your mum of all people is being unhelpful - do you think it would help to show her this?

[kankurette.livejournal.com]

Yeah, it is. There's not an official diagnosis yet but the doctor reckons I do have CFS, and I was not like this before the flu.
Mum is being a bit more OK now but I'm still cautious talking about it with her. I admit I'm absolutely fucking dreading the week my co-worker is off, because I have to cover for her, but if I'm lucky I might get to leave early. There are only so many hours I can do before my body gives up on me.

[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. :)

[evilref.livejournal.com]

I believe you. Always have. Nobody can tell what it is like being you.

[ephemera.livejournal.com]

invisible does not equal imaginary - true-fact!

yes Shira... you are ill not fat & lazy

[discobabs.livejournal.com]

I still here that crapola from people... "just get over it... you're just fat... blah blah..." I WISH!!! We won't get into the ramblings of HIMSELF either...

This weekend, what was the sniffles - has turned into a full blown ear infection complete with FLARE. I have a fibro/CMP knot in the direct MIDDLE of my right thigh now too. I can barely walk and all I want to do is sleep.

If I take any more Keflex I will be sick...

People don't want to believe it - it's toooooo scary not be to able to blame victims for them.

Petition to make NHS stop marginalizing FM patients

[discobabs.livejournal.com]

I've signed this to show support for the Shira.

http://www.ipetitions.com/petition/meinvestigation/