I look back at the wistful essays I wrote in the past about this disease combination that I have. What strikes me now is the hope and innocence that I had back then. I thought if I could be on just the RIGHT medication, my life would go back to “normal.” I know now that normal is just a word and a dream. I’ve had these illnesses for over four years, with three different doctors and probably over 15 drugs in some combination or other.
I don’t know when I finally accepted emotionally that none of these drugs would make me feel so much better but it wasn’t that long ago. I’ve accepted that I have the limitations that I do: the muscle aches and pains, joint pain, constant leg pain (I don’t know WHAT that is from), the occasional bout with Irritable Bowel Syndrome, the fatigue, forgetfulness, weird sleep patterns and just about every other symptom that I could have at any given time. I’ve come to a point where even if I am not sure it is Fibro-related, I just assume it is.
Sometimes I need to clutch the banister going up and down the stairs, sometimes I don’t. There is NO pattern; it depends on the day, the hour, sometimes mere minutes. How can we be expected to remember all these changes that happen at any given time? I can’t remember what I had for dinner last night. I go into a room to find something and forget what I am looking for.
Somewhere along the line, I gave up and gave in to this mystery disease. There were times when I even questioned if I had the disease, although I know I do now. The stiffness in my back, and in my shoulders should have convinced me but I used to blame the brown overstuffed pillow. The feeling of helplessness is legendary yet the one good feeling is the support from other Fibromyalgia sufferers.
I am now on Savella, Plaquannel, and Tramadol but I am sure that it will change soon. Am I better than before? It’s hard to judge since this illness is so inconsistent. From one Rheumatologist appointment to the next things may feel different but on the pain scale, that I am beginning to despise, there’s never a lower number. I don’t want the “big guns” of medication again, I have been there, done that, and landed in the hospital overnight. With permanent Fibro-Fog I can’t remember how I felt eight weeks ago; it all gets jumbled up in my mind.. Better? No. Worse? Not really. Pain? Absolutely. Stamina? None. Forgetfulness? Always. Our short-term memory has been stolen from us.
It’s not that I have given up (maybe it is) but I’ve accepted that this illness is not going anywhere anytime soon and most probably there will never be a cure. The feminist in me thinks that if this was happening predominantly to men, there would be more research, more sympathy and certainly, more recognition and credibility.
I go on college tours with my daughter and son and I sit through the information sessions but when they go on the tour, I find a chair and sit alone for ninety minutes. I could barely get to the information session because we had to walk five blocks but going on the tour is absolutely impossible. Only people with Fibromyalgia know how this feels. Any other physical handicap gives you sympathy and an unspoken pass but this chronic disease is invisible. I feel bad, guilty, and think I am a disappointment to my children and my husband. This is real life and as much as I know I can’t help it, there is still part of me that is crying inside, alone.