May 12 is Fibromyalgia Awareness Day. But to steal a line from the Autism Awareness campaign – in this house, every day is Fibromyalgia Awareness Day.
Fibromyalgia is the cruelest thing. Just when you think you can not go on one more moment the pain and the brain fog lets up — almost to a point where you start to feel normal. You find tiny spurts of energy where there was none before and you think maybe now you can get on with your life.
Then bad days start to creep back in, you try to cope. You try to keep your head up and remember that good days are just around the corner. Then bad days are there full time and you start to forget what a good day feels like.
You try everything – nerve blocks, infusions of medicine, pills, massage, hot water, walking, removing sugar, removing chemicals, adding oils and meditation. Heating pads, sleeping pills, breathing exercises … you become desperate to be the person you used to be.
You realize that person isn’t there anymore. You are forever changed by this and there is no going back. You see the world differently. You move slower. Your obsessions change.
I am grateful that I have LK. He is the best thing that has ever happened to me — healthy or sick.
But when I am sick – he has the patience and the understanding that I need to get through the day. I am my own worst critic, judge, jury and enemy when it comes to all of the things I can no longer do or be. He helps me with that. I am also lucky *if you can call it that* to have friends and family that share in my pain. Truth is you probably know someone with fibromyalgia. I am glad that I am not alone – though I wouldn’t wish this on anyone.
I have lost my balance … I fall a lot now. Before I was diagnosed I think the last time I took a nasty spill was when I was a teen-ager. Now, seems like a few times a month I find myself on the ground without reason or cause and a couple of times a year it requires ice packs and x-rays.
Of course trying to explain Fibromyalgia to someone who doesn’t have it in their life full time is like trying to swim through pudding. You get the idea but you never really understand what it feels like until you try it.
Then there are the skeptics who think it is all in my head … they don’t understand or care that I can’t work even a part time job from home because of this crap. It is all in my head because after all, no one has fibromyalgia until YOU have fibromyalgia.
So at least for one day – try to put your skepticism aside, try to understand that not all disabilities are visible, have a little patience, and please be gentle. Because we didn’t ask for this, and if we could be a different way we would in a heartbeat.
Learn more about Fibromyaglia at the National Fibromyalgia Association.