(I love tag line, but I wish the poster were a bit more kinky)Today is International Neuroendocrineimmune Disorders Awareness Day -- including ME/CFS -- during a week dedicated to ME/CFS Awareness. I've commemorated the day in years past by listing what I've lost due to this illness, as well as what I've gained from the experience of illness. This year I thought I'd describe what it's like to have ME/CFS, in addition to the example of an X-Files phenomena I used a few years back.
Here in bed with ME/CFS, you feel like you have the flu. Your throat hurts. Your joints burn. Your heart beats like mad. You feel chilled, profoundly weak, slightly nauseous, light-headed, mushy-brained, and just...icky. I wish I knew a more specific and/or scientific word to replace icky. It's almost like your blood has been replaced with poison. You feel dreadful. Vile. Horrible. Nasty.
And on top of that...
You've got a hangover. Everything smells so strong. The lights are so bright. Loud noise grates on your last nerve, as well as that throbbing in your head just behind your eyes and at the base of your skull. And you might still be a bit tipsy because your spatial perception is off (if I try to do that test where you close your eyes and touch your finger to your nose, I hit my cheek or my eye), not to mention you can't walk a straight line. Sometimes the room just spins.
And on top of that...
Someone is giving you low-grade electric shock torture and doing voodoo on you with a knitting needle. Most of the time it's a constant burning sensation throughout your whole body punctuated by arbitrary 5-30 second jolts of sharp sharp pain in completely random places -- your ear, your belly, your right arm, your left heel. (The burning sensation and the arbitrary jolts get markedly worse whenever I have an acute infection, especially if I have a fever.) And you have this weird buzzing sensation in random places too. As if a bumblebee or hummingbird were just beneath your skin. It doesn't hurt, but it's...weird.
And on top of that...
If you also have fibromyalgia (which up to 70% of ME/CFS patients do), you feel like you just had your first day on a chain gang breaking rocks in a quarry. Or that you went to the gym yesterday and worked out harder than you ever have in your entire life by far. Every muscle in your body burns and aches and is so stiff you can hardly move. You want to curl up in bed and sleep, but the kicker is you can't. You just lay there, though eventually you get up just to move a bit because your muscles have petrified and the stiffness is agonizing. You wish you could go to bed at a normal time and get up at a normal time, but your body runs on its own clock that, unfortunately, is not during normal business hours.
All of that. All the time. That's what it feels like in this bed. That's what it's like to have ME/CFS.
One million Americans have it -- more than have MS or breast cancer -- but it's among the bottom in diseases funded by the National Institutes for Health. The main reason for that is because most people don't take a disease named "chronic fatigue syndrome" seriously. However, as you can see, it's not just being tired. It's as/or more debilitating than congestive heart disease, multiple sclerosis, lupus, or end-stage renal disease.
So what can you do?
1. Donate money to fund research into what's causing this disease and how to treat it. Organizations include:
- CFIDS Association of America - great advocates who have funded great research
- Whittemore-Peterson Institute - first clinic devoted exclusively to research and treatment
- IASCFSME - the main professional organization of ME/CFS clinicians and researchers
- ME Research UK - a UK organization doing superb advocacy and research
- CFS Research Foundation - UK group doing cutting-edge genetic research
13 comments:
Good to tell it like it is so the myths can be dispelled
I would strongly advise against donating to the CFIDS Association. They waste a lot of money on research of very little importance. The National CFIDS Foundation, on the other hand, only funds groundbreaking biomedical research and their grants, albeit small, have resulted in a large number of very important, even revolutionary findings.
Great post for Awareness Day, Michelle.
Sue
great post. And in terms of fibromyalgia, the important thing to add is that it's like that intense workout at the gym, only without endorphins--you don't have the healthy buzz feeling, just the stiffness and pain.
The fatigue aspects of my experience with fibro feel like there is this extra gravity, just dragging my body down. And in the meanwhile, getting thoughts out is like trying to push through oatmeal.
Bah. And then to get people who look at me--apparently young and healthy--and challenge my right to use a cane ("Why do *you* need a cane? There's nothing wrong with you!" Which they can tell, based on 30 seconds of seeing me on a good day.)
And that buzzing thing... for me, it's like someone made a really effective voodoo doll of me, and is poking it. It's not painful, as you say, just disconcerting.
Good post. Especially important for people who don't know anything about this disease except the "fatigue" part, which they don't really understand either.
I just hope any of those people read this.
Thanks for this. You wonderfully put into words some things that are happening for me-I never thought to compare the sensitivity to light and smell like a hangover.
Cusp -- Thanks. Yes, I really wanted to try and describe it in as much detail as possible to dispel the whole "fatigue" bit.
M. -- While I initially disagreed with the CAA working so closely with the CDC, it's actually turned out to be helpful in terms of exposing the duplicity and lethargy of their CFS program.
I do think the NCF is doing some interesting research, though I disagree that the research the CAA is funding is "of very little importance". The recent "test-retest" protocol from the Pacific Fatigue Lab -- probably one of the biggest breakthroughs in ME/CFS research ever -- was funded by grants from the CAA. Despite not having a lot of money, the CAA has been very clever with seed grants that have blossomed into much larger studies.
Sue - Thanks!
JA - Yeah, that's why I added that bit about the first day on the chain gang. Sigh...I miss those endorphines...
Excellent point about that heavy feeling. I forgot to add that feeling that two boulders are tied to your legs. And while I mentioned it a little bit, I do think a real flaw in this post is that I failed to emphasize your point about the horror of this disease being masked by our appearing so healthy and normal. That's the real horror here. Thanks for bringing that up.
Cinderkeys - Thanks. And I can say that this post was also posted on a popular non-ME/CFS blog, as well as a non-ME/CFS forum, if that helps. :-)
CFSWarrior - Thanks! I remember someone casually using that analogy once and as I thought about it more, it totally worked.
I think it needs to be clarified that Invest in ME maintain a website, produce newsletters and hold an annual conference but they are not a research organisation, themselves, and they do not undertake research.
Hi there, Mark.
You know, I'm always getting Invest in ME and ME Research UK mixed up, probably because their websites look similar. Thanks for pointing out the mistake. I've made the appropriate change.
Hi all, I have been diagnosed with CFS/Fibro, after having it for 9 months I still struggle with everyday things. My main priority is getting to work. I have found that when it is coming on my body becomes very sensitive to touch in areas. Monie
Re: comment by M
The National CFIDS Association doesn't even have the respectability to put names under their "About" section and tell who runs the organization. The majority of "research" they list aren't even in actual science journals. "Groundbreaking" or not, nobody is going to listen to any "research" that doesn't get published in respectable journals. The smoke and mirrors definitely doesn't help.
^ Sorry, I meant the National CFIDS *Foundation*.
It would be great to see you blogging for ME/CFS Awareness again in May 2010.
Remember to sign up to the list at http://meaware.wordpress.com so we can collate a list of those who are blogging for ME/CFS Awareness this year.
Thanks
Rachel
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