I have a serious problem. It is my good days. The ones I work so hard to have by getting my rest, managing my stress, eating nutritious food and all the other rules I must follow to avoid flares as best I can. In the past it was me, all me. I would have a lilac* day and jump up and run around in a frenzy trying to get caught up on everything psychotically pecking at my psyche I had been too sick to do. Then I would be sick again. I did that about 75,000 times before we met half way. My body resumed a degree of functionality and I developed an ability to look at disarray and leave it alone.
My problem now is expectation. If I am not bitching and moaning about my sacroiliac all jammed up or the pinched nerve at the top of my convex spinal cord causing my right hand to lose the ability to grip, shingles or an Epstein-Barr flare, then it is assumed I am just fine and dandy as can be. Not sick anymore. Why would I not jump up at the chance to join the land of the normals? Go shopping or to dinner, girls night out or a spontaneous movie? BECAUSE THE REASON I AM NOT IN A FLARE IS BECAUSE I DON’T DO THOSE THINGS!
Sigh. How on earth does one communicate this? How do I tell my friends and family, even at my best I cannot keep up with them at their worst? That my life is carefully managed so I don’t throb with every heartbeat in body-wracked pain and I simply don’t have room? That pretty much they have to accept me on my terms or not at all? Oh this is hard. Oh so hard. Getting Fibromyalgia managed was a nightmare. Living with managed Fibromyalgia is worlds better but still comes with it’s own complications and challenges. But ever forward we must go…pushing for progress, recognition and acceptance. We crusade because we have to, for we simply must find a way to exist on this earth without this illness eternally ripping us apart.
Thanks for joining,