It’s Fibromyalgia Awareness Day

>It's Still MorningHey, world, I have fibromyalgia. Don’t worry, I don’t need anything from you. No one knows what causes it, or what to do about it, so those of us who have it just have to learn how to live with it. Some days are good, some days are awful, and there’s no way to tell in advance which will come up next. I’ve learned to not think ahead, not plan ahead, just live in the moment, which is something I learned from Zen Buddhism* before I ever came down with this lovely…syndrome?. (Syndrome: a collection of symptoms that are characteristic of a disease or other disorder.) Living in the moment is really freeing. My friends have come to terms over the years with me not being able to commit to anything more that a couple hours ahead. Ask me on the day, not even the day before, because I cannot predict how I’m going to feel or what I’ll be capable of doing any further ahead than that.** I tire easily and quickly (pain is very wearing), I have to take short rest breaks in the middle of everything, I may have to just lie down at some point, one never knows in advance. I take various pills, some of which actually help, but only for a certain period of time, after which they quit working and never work again, even after years of not taking them. I took Atavan for a while probably eighteen years ago. I took it an hour before bed, and when that hour was up, I was asleep. It worked for a blissful month, and then never again. I recently tried it again after getting a scrip for anxiety, just in case I had some about the knee surgery. I didn’t, but I tried it for sleep after, and no. Ran out of percocet from the surgery, which one pill worked for sleep, then I needed two. When it was gone, so was sleep. Doctor prescribed Trazodone, which is not helping at all. I can sleep for two or three hours sometime in the early morning. Functioning does not happen, more pain does, when I don’t get enough sleep. Not sure what I’m going to do now. This is a long ramble, isn’t it? And all one paragraph. Not sleeping is not good for writing, either. Apparently.

One thing about me is that I don’t want to be known as a person with fibro. I don’t want to be identified, or identify myself, as that. I am not my illness. It does not define me. I am a smart, funny, annoying-as-hell person who happens to have fibro, and who, as a result, has certain limitations in what I am able to do. But it is not who I am. I don’t tell everyone I meet, I don’t keep track of symptoms, I don’t focus on what is wrong with me like some people I’ve known. I make an effort to have fun, something to laugh about, every single day. I don’t bemoan what I can’t do, but try to remember to do what I CAN do. Not to say I don’t have whiny days, or moan and groan to a friend, but I don’t let that be all there is of me. I want to enjoy my life, and have as much fun as I possibly have given my physical limitations. And I do. I’ve never been a ‘why me’, ‘if only’, type of person. I am a pragmatist (straightforward, matter-of-fact), a realist. This is the way things are, and that’s what I have to live with; not how I wish things were, or how they used to be, but the way they are right now. Living in the moment helps with that, too

I was in a support group when I first became ill, and I found it very depressing. I thought it would be how to live with this, how to manage daily things, etc., but instead it was just people complaining about how miserable their lives were, and how many doctors they’d seen, trying to find somebody to ‘fix’ them. The way things stand, there is no ‘fix’, and I have come to terms with that, and worked to accept that this is how I am now, and get over it and figure out how to live with this new reality. I used to say, “I used to….”, until I realized that living in the past like that was detrimental to living, really living and enjoying this life, now. This is now my reality, and I’d better make the best of it, or I won’t have any life worth mentioning.

On a positive note, saw knee surgeon yesterday, and he says I am doing very well with healing and physical therapy. There’s only one thing I still can’t do, and that’s lift my leg straight out. Like sit and straighten your leg in front of you. Only goes so far, hurts like crazy. I can make it raise higher by pulling it up with something, or the PT lifts it, but cannot do in on my own. Still have pain, but not constant or severe. It’s only been a couple of months, though. In house PT guy said it takes three or four months to get back to normal, but new PT guy says it can take up to a year. I think having fibro, which means weird pain responses, has a definite effect on it, too.

So that’s my “It’s Fibro Awareness Day’ rant. I have PT later, not looking forward to the pain involved, but I’m always better after so I guess it’s worth it. I know it’s worth it. And PT guy is funny and nice, as are most people I’ve dealt with since the surgery. It’s a coolish, sunny day, and I need to get a move on.

Here’s a quote I just came across. I love it.

‘Buddhism promises nothing and delivers exactly that.’

*If you want to read about Zen, a couple of authors I started with and really learned a lot from, are Jon Kabat Zinn, Professor of Medicine Emeritus and creator of the Stress Reduction Clinic and the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School, and Thich Nhat Hahn, Vietnamese Buddhist monk. Google, there are tons of good books about Zen and Mindfulness Meditation, etc. I recommend any that don’t focus on the ‘religion’ aspect, but on the ‘way to live’ side. You can be any religion (I am an atheist), and also be Buddhist.

**This was hard the first few years, before I got through to people. I remember once being invited to something that I just couldn’t do when the time came. Later, seeing the same people, one was giving me a hard time about not coming to the event. I remember saying, “I already feel bad enough about having to miss the fun, and now you want me to feel guilty as well?” That seemed to be the thing that finally, finally got through to them, that I wasn’t rude or a loser, I really have no control over what I can or cannot do, or when I can or cannot do it, whatever it may be.

####I proof-read this, but wonky fibro-brain does not always work as well as I’d like, so if I missed anything, oh well. 🙂

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