There’s no easy way to say this - it’s a real tongue twister… here goes:
Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Fibromyalgia
ME and CFS are roughly the same thing, while FMS has different systems - you’d never know if someone had it unless they told you. You might guess something was wrong with them, but you may not notice anything is up with them at all.
Well my wife has CFS and FMS. Chronic fatigue leaves her tired, un-energetic and sick, while Fibro now leaves her in constant pain. She’s described it to me (using Gini’s - notcrazy forum friend - description) like this:
Feels to me like I am just coming out of anaesthetic and while under somebody dropped me, forgot it was me down there on the floor and tried to use me for a mop.
There is heaps of information about these syndromes online because tons of people have them, but out in the big world there’s a stunning amount of misunderstanding about them as well. See, the problem is that for years it was easy to dismiss these people as lazy or ‘putting it on’, because they have to lie around a lot, and often can’t continue working like they were. People think that it’d be awesome to not have to go to work, but people with CFS and Fibro do a lot of boring nothing, because they’re often to sore or tired to even talk on the phone, let alone go out or have company. Mil and I often spend nights watching crappy TV instead of hanging out with friends - this is not a desirable illness to have. The May 12th Awareness Day is a chance to tell people that it is a terrible problem and that lots of people with CFS, FMS or any other ‘invisible illness’ need support, care and understanding.
Which brings me to my blue hair. This is my ‘Myspace-style’ photo:
Blue is the designated color for the CFS awareness day, and I wanted Mil to know that she’s not living with this alone. And I hope people at my schools will ask why I did it, and I can tell them.
You can find out more information about these illnesses all around the web (and some misinformation too). A great place to start (not for misinformation you twit) is notdoneliving.net. Ricki’s Open Letter to those without CFS/Fibro is a great place to start if you know someone with either illness or want to understand what it is like to have an invisible illness. (Lifehacker recently gave Ricky an honorable mention in their workspace bonanza for her in-bed computer setup. I mentioned that someone with CFS was on Lifehacker and Mil says ‘yeah, that’d be Ricky’.)
Finally, Mil’s second family are the people at notcrazy.net, a website and forum based around the book I’m Not Crazy, I’m Just A Little Unwell by Leigh Hatcher, an Australian journalist with CFS. It has plenty of info about CFS, but Mil visits for the forum. She’s made a lot of great friends who are all helping each other through what can be for some a life-long problem. If you have CFS of Fibro or anything like them, notcrazy and places like it can be life-savers.