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kellylcarlsen21 posted:
Hi all! New here and newly diagnosed. I'm 33 years old and feel like I'm having a midlife crisis!

What I am looking for is advice on how to get my husband to understand I am not actively watching life pass me by. I wish it weren't. He believes I'm not trying because I don't do what he feels I should do to "get better" . We have been fighting more than ever and he just doesn't seem to understand that I wish I would just disappear.

aside from the fibro I have always suffered from migraines. My husband has had one headache in 13 years and went to the hospital! But as a wife and mother I'm still cooking and cleaning while my head may be pounding.

I believe I've always been somewhat depressed and anxiety ridden. But lately it seems more intense. Anyone else? Tips? Stories to share? Thanks in advance.
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missist responded:
Hi Kelly.. after 30 years, what you are talking about is the 'holy grail' in my life.

I'm hoping someone here who knows how to win this battle will chime in soon as I will be listening. My hubby & family can sometimes be there for me--but then turn completely the other way. Its really difficult. When will you get better? Gosh, tomorrow at 3pm.

Will pray for you!
God Bless, Mary
 
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bette_kaffitz responded:
Kelly,

From the outside looking in, fibromyalgia is impossible. After all, you CAN do things. (You just pay for doing them later. And, boy, do you pay!) If you CAN do something, but DON'T do it, you must be deciding not to do it, right. That's what it looks like to your husband and family.

Of course, they have no way to understand that you have to ration your energy, as if it were those last drops of water in the desert 100 miles to the next town. You never know when the pain will hit. You never know when you will suddenly have no power left--like someone pulled out the plug. And the really hard part is that some things don't even hurt today while you're doing them. They hurt tomorrow--and sometimes for several weeks after. (I had a physical therapy assessment that brought on a 6 week bodywide flare.)

Even your doctor may have a hard time understanding. After all, you're taking the meds that are supposed to help. What more do you expect from him? (Sorry, but I've always gotten more respect with fibro issues from women doctors.) Either you're not taking the meds as directed, or you're faking all that "pain," right? Often, your doctor may not have read ALL the literature on the drugs he prescribes. Like the part where 16% of patients got some relief, so the medication is helpful! Maybe, just maybe, you're in the other 84% who were not helped by this latest wonder drug--or the one before it.

Try to be calm when you remind your hubby of what he felt like during his one and only headache. But you aren't cringing on the floor with yours? Well, no. You've just had years of experience with having to work on through. You did it when you were the only one available to tend your children--and you still had level 8 pain. You did it when your dear hubby had to eat a quick supper and rush back to work. So you (miraculously) got a meal on the table in 10 minutes despite that migraine. And the time you got the house spotless before his family came for a special visit--while you were in a major flare.

We women do the things we have to do. If we're lucky, we get a chance to rest and recoup in the next few days.

I can just see Cory saying, "Hey, wait a minute. What about me!" All over the world, courageous men like Cory are doing back-breaking work (and let's face it, most of the truly physically demanding jobs in this world are done by men) to support their families. They come home from work sore and tired. They'd love to collapse in the recliner, but there's always a project around the house that needs to be done.

Male or female, we all do the things we have to do. Then we try to make time for the tub, the heating pad, the quiet time in bed or recliner.

It's easier for me at 70, because the only one who seems to think I owe him my time and effort is my DH of 46. But I do snarl at him every now and then. But the fibro began during my second pregnancy 42 years ago. I raised 2 sons, ran a house. Went back to college. Earned 3 degrees (A.S., BA, and MSEd). Taught GED classes for 11 years. Had some fun doing all of this. And hurt--a lot.

Your spouse will never really know what it is like--unless he wakes up some morning with fibro, too. Since none of us wish for this to happen, we will have to settle for understanding at least 50% of the time. And be willing to concede that it's probably a day for the other 50%.

Towards better days with more understanding,

Bette
 
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Anon_10089 responded:
Hello-

I am 32 and have had FM (or at least chronic pain and insomnia) since I was a kid. While both my husband and I knew I had pain issues when we got married, we had no idea the breadth of its affect on our marriage.

This is a huge issue. I think almost everyone has issues with their spouses, at least at the beginning. Many here have had the experience of their spouses softening up and becoming more understanding.

My husband overall is understanding. He at least believes in FM and believes I am in pain. But I know he still thinks there is some kind of cure out there and I've just given up on finding it. He's told me he would scour the earth if he were me to find a cure! As an aside, my husband has mental health issues that are also chronic, so he actually understands what it's like to have something that you can only "cope" with and not cure. He can be pretty intense!

But I also know a huge issue with my husband is that he also feels like I don't have much of a life. Well, I don't. A lot of my life is about survival. It takes a lot to do the minimum. I've told him he would probably have extreme respect for me if he knew how I felt everyday while still getting up and doing what I need to do. After I do what I need to do, there is not much left that I want to do. It's as simple as that. Having chronic pain for much of my life has squeezed most of the ambition out of me.

Have you tried seeing a therapist, possibly one that specializes in chronic pain? Would your husband go to a few sessions too? Maybe having a third party affirm how difficult living with chronic pain is would help. These type of therapists often have very practical advise. A chronic illness should be viewed as an issue for the marriage, not just for the one spouse that has it (in a perfect world!)

Also, I do think we need to remember our spouses' points of view. As much as we are angry and frustrated at our own illness, we can't expect them to not feel the same. There are times I am upset that I am, yet again, laying down because of a dumb migraine. It can't be easy for my husband, at the end of a hard day of work, coming home to me on the couch.

Are there activities that are important to your husband that you can share? Can you explain to him that maybe the dishes won't get done, but the two of you would be able to take a walk instead?

This forum is a great place for information and support. Many people come here and vent when they need to!

--JR


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