For quite some time I’ve been contemplating the necessity of writing this post. Or rather of having to write it eventually, because surely the next day would be better than this one. And the next; and then the one after that… and suddenly by some magic process I’d be back to my old self and writing thank you acknowledgments as I used to do.
I’m told this is a common fantasy for people with fibromyalgia: each day we hope we’ll be better tomorrow, or the day after, or next week, or maybe next month, or perhaps with this next new diet or vitamin. What fools us are the unpredictable and all too-brief times of remission.
In a way, “fibro fog” (the name they give our inability to remember people, places, events, etc.) can be a blessing because it can be hard to recall what we’ve lost. But when we suddenly have, without rhyme or reason, a remission of pain and fatigue, and when our ability to think returns, we’re sooo certain it’s all over. Suddenly we have the energy to catch up on all the things we’d left undone. Back in the beginning when this disorder is first setting in most of us don’t believe it’s chronic. So we continue with our “To Do” lists as though our routines will soon resume their ‘normal’ outlines. It is only when the task of actually writing up those lists becomes a source of frustration and shame that we begin to comprehend the devastation we’re living. The first few remissions followed by relapses are disorienting, both for us and for people who are not yet used to our strange levels of dysfunction — “but you don’t look sick…”
All of which is to say this out loud — in fact the time for admitting the truth to myself is past due and our donors certainly deserve an explanation: my energy level will never again be what it was before the onset of fibromyalgia. I will never be a dependable correspondent. In fact, I will sometimes write to you and not remember that I did so. Despite the lists the Baron draws up for me, I sometimes have to preface a thank you note with , “I may already have told you this… ”
I never was big on reality, though, particularly when it came to accepting the limits of what I might accomplish. The Baron used to tell me that he was going to write on my forehead, “You Do Not Have To Do Everything Good Thing You Think Of”. He said he’d write it backwards so that when I looked in the mirror it would be a reminder of my Pollyanna tendencies to want to take care of every bit of suffering I came upon. That was before the onset of fibromyalgia; it’s not so bad now because while I may want to do something or other, I realize how far out of reach it has become. Besides, fibromyalgia isolates one, so I’m seldom out in company hearing about unmet needs. But when I am — whoo, boy!
Just yesterday the Baron took me to get my hair cut (driving isn’t a good idea when your reflexes are as slow as mine are and there are as many deer as we’re surrounded by). Before I left the beautician’s shop I was volunteering to help a woman who was considering homeschooling her youngest, a child who hates school and always has. I had no business being Miz Goody Two-Shoes when I don’t even have shoes (so to speak), but there you go. I doubt the worried mother is going to follow through on her desire to homeschool since she is part of a big clan who will give her grief if she attempts it. But there you go — Miz Dymphna to the Rescue… Again.
A long story just to tell our donors I haven’t forgotten you. Nor has the Baron. He is concerned about my inability to write more of the thank you notes since I enjoy that task. When he asks why I can suddenly post a comment here and there on the blog, I have to explain the difference. With our comment section, I have only to open the thread and say something. With thank you notes, I have to find my list, then ascertain where I left off, and then fully consider the person I’m writing, where they’re from, how often they’ve donated, and perhaps try to recall what I remember of previous conversations… with my memory, that’s… well, let’s say it’s a bit of a challenge.
In summary, you may hear from the Baron and not from me. That won’t bother y’all I’m sure — after all, he’s the engine that makes this website function. It frustrates me, though. He already does so much by himself, and this was one area I was able to accomplish and be of assistance. But that’s the nature of fibromyalgia: one’s areas of competencies shrink inexorably.
Surrender in the teeth of reality is
a bitch a bite. In truth I don’t think I’m constitutionally capable of it. Let me tell you about this new diet I came across…