I came across some great explanations of fibromyalgia today, and wanted to share them, since in recent weeks I’ve had quite a few ‘helpful’ people tell me that all I need to do is change my diet / sleep more / exercise more. A little collection of articles from the folks at chronicfatigue.about.com is my response:
>> What’s it like to have fibro?
>> Understanding fibro pain
I rather like two things in the second article – first, the term ‘fibromite’, descibing those of us with fibro. Second, the author’s own names for the types of pain she experiences, and particularly ’sparkler burns’, which I have so often I immediately got what she meant. Here are a few of my own names:
- MacTruck Pain – that overwhelming fatigue and pain that makes you feel you’ve been run over by a mac truck.
- Burn Days – when the muscle burns just make you feel like every inch of skin and bone is on fire
- Zonk Days – when the fatigue and pain get so overwhelming that it feels like I’m a zombie.
I wonder if making up names to cope with the pain and fatigue help? I know that the people who know me best understand that if I say I’m having a ‘burn day’ that it means I’m not up for much. But for well-meaning (and not so well-meaning) folk who don’t know me, it’s really hard to explain what constant pain and fatigue feel like. And when the people closest to you you don’t want to understand, then there’s little you can do to help them get over their perceptions of ‘laziness’. I’ve two words for the latter group, but I’ll be polite and not use them.
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