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.
Thursday, August 13, 2009
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I am sorry for your hardship, it frankly sounds like it sucks. It's good that you love each other and it's also good that you both have venting places!
ReplyDeleteYour blog could have been written by my husband. I suffer from fibromyalgia and it's hard for him to not only work full time and take care of the house AND take care of me, but watching me in constant pain is just last straw sometimes. It sucks, no one truly understands unless they live with a spouse who has fibro, and each case is different. My husband mourns the little things we used to do together like taking a walk or just being able to enjoy the outdoors together. You're right. It's tough, it hurts, it's never ending. But like you said, at the end of the day you still have each other and you still have love. That means more than anything. Thank you so much for sharing this!
ReplyDeleteI definitely understand this! My wife was recently diagnosed with Fibro as well and it is truly hard on the entire family. I also sometimes feel like a single parent, because I bring in our only income, do 90% of caring for our child (& a new one is on the way), and you can't forget the cooking, cleaning, playing with and teaching our 4 year old daughter etc.
ReplyDeleteHow long has your wife been diagnosed and how long did it take you to really understand what is going on with her? There are times that I remember that she has this terrible problem and can understand but since this is still so new there are times that I forget and after I get angry/frustrated etc (kept to myself)I remember what is truly going on. Does it get easier, at least in that respect?
FIRBRO SUCKS for the whole family!!
Thank you for your responses. To the last Anonymous poster: my wife was only diagnosed last year, but that was part of the frustration. I had known for years that her symptoms were probably fibromyalgia, but no doctor would listen to us. She's been having symptoms since childhood, but they began to get really bad about 12 years ago (we've been married for 11).
ReplyDeleteDoes it get easier hard to say. I've gone through phases where I ould hardly take it anymore, and others where I cope quite well. It helps to have support and to have others who can help out once in a while. It's also very important to make time to take care of yourself - go work-out or take a martial arts class or whatever. I find exercise gives me a rest from thinking about it and helps me vent some of the frustrations. (See my later post on Kung-Fu class).
I don't know any other fibro husbands so it'd be nice to connect. Look me up on Facebook or send me an email. Cheers.
Marc
I find your post very interesting. Being a mother and having Fibromyalgia is difficult and sometimes you feel like you are alone - even when you are surrounded by people that love you. But after reading your post with all your points I realize that there are lots of people that are going through the exact same thing - not that it makes it any easier. It still sucks.
ReplyDeleteI wish all the best for your wife, you and your family and I hope that someday something good will come out of it. If nothing else, you are learning about how strong you can be. Good luck!
I am a wife with fibro.My doctor has worked with me the besthe can.I am much bette now than I was the first few years I had it,I was bedridden for a long time but my husband had supportfrom our daughter.She had a child and a husband to care for but was tired taking care of all of us.My husband worked many hours and still did a lot to help me,We could never get the house streight because of my illiness.I was on pain pills for years but they didn't stop that god awful feeling inside of mental misery. Like someone said you dont look sick. No I just always had a tired look and so msny miserable didn't leave home to go to visit my children .On Christmas I was home in bed but sent the family to eat and havee a good time .I didn't mind being alone .Could not stand to be around lots of confusionto keep my husband from going to parties and any family function.I didn't.Thank God our Children were grown and marriedI have been good until last week and it stared back Most just fatique and couldn't do anything.My husbaand did the cooking and cleaningbut when he got sick no one was here.I have three childrenand I get lots of attention from my older one and my daughter .Watching me suffer caused her nerves to get bad and We decided she needed to have her own home .I was better but we managed without her.That brain fog didn't hit me until a year agoand it was so aggravating .Couldn't remember a full sentenceWill write again later.I have symathyfor the victom and the caretaker.
ReplyDelete