Saturday, January 17, 2009

Coping with Fibromyalgia

Sometimes fibromyalgia (FM) flares up. Sometimes it's when I let my schedule get away from me (as I have been doing a lot lately) and sometimes it just happens. I've been doing a lot better now that I've lost weight and I'm walking daily, but I still have days... The walking would seem like it would add to the problem but it's all about balance. If I walk too much or not enough, I get more flare ups. I've found around 30 minutes a day is just about right for me.

I was hoping my schedule would be more manageable now that the holidays are over but such is not to be; sigh. I love everything I take on so it's frustrating to know that it's really too much for me; I want to be able to do more. I'm just so thankful for my DH; he earns enough so that I don't have to work outside our home. A paying job on top of trying to raise the kids and run the house? I'd be exhausted all the time. I'd be lost; I don't think there would be much left of ME. I know there are people out there with FM who do work at paying jobs, but I don't see how they do it. My aunt told me about a fellow teacher she knew with FM. She would collapse on a couch in her classroom every day before she even had the strength to drive home. That's really bad.

Flare ups feel awful. When I get a bad one it's like having the flu. The worst of the flu is over but you're still sick; your body is weak and achy and you just don't want to get up out of bed. I feel drained and I don't want to do anything. Sometimes getting up and moving around helps; sometimes it doesn't. Those days are so hard because I still have my life to lead! If I'm lucky enough to have a "home day" when I get a flare up I try to at least make the best of it. I'll work on stuff while I'm laying down- looking through recipe books and making menu plans and grocery lists, updating my "to do" lists, journaling, and other quiet things. Sometimes one or more of the kids will come and cuddle with me and we can talk or watch an educational show I've recorded on the TV, which is the best way to spend that down time! I tend to "turtle" when I'm having bad days or feeling overwhelmed, too. I withdraw into the shell of my home and avoid the outside world as much as possible. I don't call anybody and pull back from as much as I can, including my friends, which isn't fair to them but it's a survival mechanism. I have to pull back in order to recharge and get through it! Fortunately I don't have the really bad flare ups too often. Sometimes I get mild flare ups, which are draining, too, and those cause me to pull back as well. I never know how long a flare up will last, either; sometimes it's just bad at the end of the day, sometimes it's all day for several days, sometimes it's off and on for a period of time.

Managing my schedule is a big part of managing FM. I tell my kids I have "energy units" and when I run out of units I'm done, so they have to help me conserve them for the important things. I let my schedule get out of control this past week, though. I try to keep a couple of home days each week for recovery purposes but I only had Thursday this time, and all of the other days were full of busy activities. We did so much, but other than my sore legs from picking strawberries I actually feel OK today. :) Yesterday I took the kids to a park to meet up with some old friends I pulled back from several years ago, which was wonderful, and we made plans to get together once a month. I mean I really pulled back from them, more than I wanted to, but I didn't realize at the time that we would lose touch for so long the way we did. They are all ladies from the homeschooling support group I was involved in when The Eldest was younger, probably for 4 years or so until The Youngest came along. I hauled The Middle Child to The Eldest's meetings and activities and managed OK when The Middle Child was a baby, but then trying to do the same with The Youngest AND The Middle Child was too much so we dropped out of the group. In the meantime the group fell apart and everyone went their separate ways. Since most of us still live in the area one of the former members decided we should have a reunion yesterday, which is why we all met at the park. It was so great to see them! Now we mamas are going to get together WITHOUT THE KIDS once a month, which I'm really looking forward to. :) The kids have grown so much, too; it was fun to see them all. The Eldest reconnected with one of the girls she was friends with when she was little and realized they have a lot in common since they are both artists, so they sat around drawing and talking the whole time we were there. It was a good day. :)

1 comment:

Melinda said...

I can identify with your turtling, as you call it. I don't have FM, but I am naturally a homebody. Especially in the winter. Since November I have really retreated into my shell because I was so sick in the first trimester of my pregnancy. Now I am feeling better and we're about to start working on the planning stage of our move in March, after which I am hoping to hook up with some moms in our new area. Hiding out is really easy to do too much, but when you really need to, it's great.