Fibromyalgia sucks for the whole family!

My wife has Fibromyalgia. It's this wonderful condition that most Dr.'s will tell you is all in your head but causes excruciating pain all over your body and renders you basically disabled. It really sucks for her, but it also sucks for the whole family! (No this is not a positive article - it's long winded venting. Feel free to stop reading anytime if that turns you off).

Here are just some of the things that suck about it:
1. Nobody cares. There's no pink ribbon campaigns, no marches in the streets, benefit concerts or relays. I mean, c'mon! Yeah Breast cancer can kill you, and it's hard to go through. But you either get better or you die. (Not to belittle breast cancer - it took my grandmother, after all.) Fibromyalgia on the other hand is like being sentenced to torture for years on end, but because you don't go bald, nobody sees it and nobody cares.

2. Nobody can do anything about it. Yeah there's some medicine that helps a little, but not much. Dr's have been ignoring FMS and not taking it seriously for so long that there are no really effective treatments out there.

3. My wife can't do a lot of things. If she does "suck it up" and do something that most people would find to be mildly strenuous, she pays for it with a week of extra pain. This means that she can't do chores so I have to do them all or they don't get done. The kids aren't much help. So we end up living in very messy conditions most of the time.

4. It makes me feel like a jerk. Yeah, I try to be supportive and stuff as much as I can. But I'm not a nursing type - I could have been a Dr. but I hate taking care of sick people. So when my wife is moaning in pain for the umpteenth time and the only feeling I can muster is something bordering on contempt - like when a mother just wants her baby to stop crying already - I feel like a jerk. It takes an emotional toll.

5. When I don't feel like a jerk, I feel helpless. It's hard to watch someone you love being in near constant pain and not be able to do anything about it. Hard. Such a limited word. How about - frustrating, exasperating, emotionally numbing and draining. It's like being behind glass watching as someone tortures your loved one and you pound and scream at the window. Only there's no evil person there on which to focus your anger, and it doesn't end. You can only bang and scream for so long before you become numb and resigned to it and stop caring. Then you feel like a jerk for not caring anymore. Back to number 4.

5. There's little to no support. In fact, there's a great deal of..whatever the opposite of support is. Contempt? Condescension?
Alcoholics have Al-anon to help their families. People dealing with cancer and other stuff in the family have support groups and hospital programs and charity foundations. Families with fibromyalgia instead get looked down upon - close family members don't really believe there's anything wrong with my wife - she doesn't "look sick" after all (what is pain supposed to look like anyway???). They think she's lazy and a bad wife etc. and why did I marry her.(or they did, some are starting to come around).

6. It's hard on the kids, too. I'm often surprised at how well the kids cope with this. They know to let my wife sleep and take care of themselves when she conks out in the middle of the afternoon. They don't complain that she can't take them hiking or bike riding, or any number of other activities that she wishes she could do with them. But there are lots of times when the answer is "Mommy is too sore," or "Mommy is too tired," that you can see their disappointment.

7. People just don't understand. They really don't. They may think they do, but they don't. Even people who have known someone with Fibromyalgia. It may have the same name, but it's a different disease for everyone. What may help enormously for one person, may actually hurt another. What's a major area of problems for one person is not a concern for another. For example, many FMS sufferers have bowel problems, but my wife doesn't.

8. Well intentioned advice is frequent and frustrating. Maybe if she would just exercise a little more. Maybe she should try this diet. Maybe she go see a chiropractor. maybe she should drink more water. And on, and on. To those who offer this advice - thank you for your caring and your good intentions and desire to help. But we have honestly tried just about everything there is to try and we've heard it all before.

9. Loss of income. My wife can't work. That's not to say she can't do anything. She's a smart woman. But it's unpredictable as to when she'll have a good day, when she'll have a bad day. There's also the issue of "fibro-fog" that slows the thinking and makes her confused and fumble with words. We've struggled to come up with ways for her do something at home on her own terms that can make some money, but so far no luck. On top of that because we're a single income family we're taxed more that a family with two people bringing in the same income would be. So any extra money I'm able to bring in is taxed at the maximum possible. How is that fair?

10. I'm exhausted. You know those single moms who have to do everything - cook, clean, take care of the kids and work? Or the sports widows who's husbands don't help at all (hate to stereotype my fellow husbands but there are some guys that really are like that). Well, it's a similar situation. I work full-time, plus overtime, I cook, I clean, I fix things, I do renovations etc etc. And then I feel guilty when I try to take some time for myself (but I've had to insist on that for my own sanity!).

That's enough whining and complaining for now. Though everything I've just said is true, we do adapt and most days are OK, or at least OK for much of the day. We're not in a constant state of suffering (well, my wife kind of is, but she has some days that OK too.) Despite everything, life is still worth living. Love is still worth giving and receiving. And we'll still be there for each other even when it sucks for the whole family.