An organization I really trust and support sent out this article about living with fibromyalgia. And for the most part I agree with it. However, I think it’s a little light on the details, about good days and bad days. I try not to revel in the fact that I have fibromyalgia. For the most part, I think my “fibro monster” as I call him, is really here to teach me lessons. Slow down. Take care of myself. Focus on myself, because I do have a tendency to do it all and take care of everyone else to the detriment of my own health. It’s also, to be really blunt about it, easier if you’re self employed. When working on my Harmonic Spirit work (and of course, this is the work of my heart, so there’s a joy that underlies everything I do, which helps the pain symptoms. Don’t need Dr. Oz to tell me that.), or when I’m working on my other work, which I’m just as passionate about. The job that pays the bills though, the 40-hour a week job, there, fibromyalgia is not as simple as having a bad day as described in this article.
The truth is, all the FMLA and ADA accommodations, sick leave, and “planned time off” doesn’t help you when you have an invisible illness and those around you don’t seem to care. Bosses see only productivity numbers, and if you’re in the top tier, then you’re not “sick” to them. The hours need to be worked, and if you miss too many days then you’re in trouble. I don’t wish to belabor the point, and I don’t wish to drag myself down in negativity (That’s something that hurts the pain), but I think that when talking about “good days” and “bad days” with any invisible illness, it’s important to note that each person’s experience may vary.
A good day for me? A day like today when I wake up in excruciating pain, drag myself to the pc, check email, then go out to the barn for some much needed “equine therapy” with my horse. All I did was brush her and pick out her feet, but even though I moved slowly, I was feeling better by the end of it. Enough so that I could come home, cook supper, and then ease in for a night of work, where the shoulders are starting to ache as if someone pressed two cement blocks down on them and then stood on them, and the fingers are not functioning, and the brain…yeah, it hurts to think at the moment.
But during the night I have things I will do to help. I will breathe. I might go heat a heating pad. I’ll keep myself hydrated with water, tea, and I will change position and move as I can. I’m pretty wiggly anyway, because due to fibro pain I can’t sit in one position for long. I’ll smile, and I’ll fake it, because that’s expected. Then I’ll get off work, look longingly at my bottle of muscle relaxants, then think that Friday is errand day, and try to settle into some semblence of sleep.
I think if a hundred people with fibromyalgia write down their experiences, there’d be two hundred different versions. No one day is alike another. Pain levels vary. Treatment (if you can find a doctor that’ll work with you. The ones around here only push two brands of pills, neither one works.) varies. And sometimes doctors aren’t receptive to a patient’s wishes, and these patients, like myself, are on their own.
We need understanding around fibromyalgia and invisible illnesses. Do not pity me. Yes, I’ve told you my story, but as I said at the start, my “fibro monster” might be grumpy taskmaster, but he is here to teach me. And the more I listen, and the more I learn, the better I feel. If you believe everything happens for a reason, and I do, then my fibro came along to teach me to take care of me.
See, Fibromyalgia. It’s not that simple.
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