Friday, July 11, 2008

Fibromyalgia: Not just for crazy people anymore

I remember when I first heard about fibromyalgia and the going theory amongst those "in the know" was that it was a made-up disease that doctors diagnosed in people they thought were crazy and just complaining of pain because they had too much time on their hands.

"HA!" says she who was semi-recently diagnosed with the disease. Trust me, this pain ain't in my head. Yesterday, on a scale of 1 to 10 (with 10 being the worst) the pain was about a 7. Today it's about a 3. That's what's so crazy about this condition: the pain fluctuates from day to day. You never know when you're going to have a "bad" day or a "good" day. It's impossible to make plans because you might wake up the day of your event (say a murder mystery party or a recent game day) and feel like crap but there's nothing you can do about it because you're about to have a house full of people looking for a good time.

Anyway, I've been trying to come up with different coping mechanisms so that I don't fall into a deep depression like I did when I first found out I had this. That was awful and I even contemplated suicide (not that I had a plan in place or anything and I don't think I'd ever actually leave my boys on purpose.) But I've been examined by three separate doctors now who all say I've got it and then they say, "Boy does it suck to be you," only in much better doctor-speak. But I digress.

One of my ways of coping with this disease is to sleep a lot and to refuse to feel guilty about it. I'm really not just being lazy (okay, maybe sometimes I'm just being lazy) but I'm really just very exhausted. Yesterday I took a "nap" from 4pm to 10pm and then went to bed at 1am, getting up at 10:30am today. That is not normal behavior for anyone but an infant. (Guess that explains my juvenile sense of humor...) So what if the house isn't perfectly clean? So what if the laundry doesn't get folded in a timely manner? So what, so what, so what? I also have OCD and I've realized that it's time to get over that as much as possible because seriously, the world is not going to explode if I don't finish the dishes.

Another way is to try to be more real with myself, my friends, and (occasionally) my family (their brains would implode if they ever knew the "real" me.) So I've started talking more about things that matter. My feelings, my fears, my insecurities, my failures, etc. I'm not very good about talking about that stuff but I've found that it helps tremendously to just get it out there in an effort to relieve stress. It's amazing how awesome my friends are to listen and to offer advice. Some of my friends have even started telling me about flaws I didn't even know I had (like making fun of midgets or teenagers, for instance.)

I know I'm rambling but I also know I can't be the only person out there who has fibromyalgia. We've got to stick together because people that don't have this disease don't seem to get fully comprehend all those goes with it. It affects every part of a person - mood, level of exhaustion and stress, ability to function, memory - everything. And sometimes when we're being bitchy or unreasonable it's because we're unreasonable bitches but other times it's because we're just so freaking tired and stressed from the pain that we seriously can't control ourselves.

So be patient and love us even when we're jerks. I swear we'll feel really bad about it later, but only if you tell us about it. Later. Don't do it when we're pissed. Trust me. I'm not a good person to talk to when I'm pissed. (And that has nothing to do with fibromyalgia, just the fact that I'm immature and can't be reasoned with until I settle down.)


Anonymous said...

"Yesterday I took a "nap" from 4pm to 10pm and then went to bed at 1am, getting up at 10:30am today."

Sounds like a normal weekend at my house, except for the getting up at 10:30 part. Would be more like noon.

Addie Talley, Photographer said...

thanks for sharing this...

I cant totally relate b/c I dont have fibromyalgia, but I do have OCD and a thyroid condition which makes me easily exhausted, so I know a little bit about how you are feeling....

maybe now that you know what it is, you can get some meds or something?

Anonymous said...

Jet pointed me in your direction earlier today. I was diagnosed with Fibro/CFIDS in 2002, though I've had it since I was about 12.

I can utterly relate to everything you mentioned, one day I'd be close to "normal" and the next I wouldn't be able to stand. I was wheelchair bound for about a year, and could only walk with a cane or someone holding my arm for at least another year later. Hell, I still use my cane on my bad days.

There is hope though, I've gone from Doctor to Doctor, pain clinic to pain clinic, medication to medication for over half my life. 90% of the people I saw would try to help me for a few months, then pat me on my head and send me off to the next person. Like playing hot potato where I was the potato. Eventually I found an amazing Chiro and after about a year of treatment, I'm okay. I still have fibro. I still ache, I still get tired faster than most people and require more sleep, I still get random bouts of the Fibro Fog but overall I'm healthier than I ever dreamed possible. I've had a few set backs, but it can get better.

I don't know if you know many people with the condition, but if you ever want to chat/bitch/whine/moan/curse with someone who knows pretty much exactly what you mean, my name is Crista and I'm an excellent listener. On Aim I'm dasPinkness.


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