@Invisible Woman
Hi
Yes, way too common amongst Normals.
Got a really good friend I've known for years who takes this a stage further.
She said recently that she cannot understand how or why "some people" (meaning me and another mutual friend who is evidently having problems) "are so in touch with their own bodies" - Oh good, I thought, she's going to say something positive....
"- that they can monitor
every tiny change and tell you that
this started hurting at
10am, at
10.30 I took a painkiller, by
12 it was killing me and I felt sick, so the
painkillers made me feel sick, then after I'd had a
tomato salad, it was
worse, more swollen and
inflamed, so the
tomatos made it
worse, which means tomatos are
inflammatory - for God's sake!! Why can't you just get
ON with it? I've had a knackered knee for two years. Doesn't stop ME getting on with things!"
Now, I love my friend, so I just smiled and nodded.
I can forgive her for not understanding, because she is, in the very literal sense of the word, ignorant of the challenges people like us face. She doesn't get that a lot of us are forced to turn detective to try and get well, because being well is what we want more than anything in the world. Why would she? She doesn't wake up exhausted every morning, to find that yet another body part has broken/ changed/ dropped off overnight.
What makes my blood boil is hearing the "Get on with it," speech, like it's a choice, like we're a bunch of lazy mo-fo's,
from other people who say they have the same condition(s).
All I can assume is that a) their martyrdom knows no bounds, and b) there are degrees of severity, and theirs isn't that severe yet.
I carried on working, mostly through sheer determination aided and abetted by diet coke, glucose sweets, coffee, bucket loads of Vit C, and sleeping every spare second, as a regular employee until my bad days became so frequent and so unpredictable that I let my boss down too many times to be comfortable with being that person anymore.
So I switched careers and became self-employed. That way, I could avoid a lot of letting-people-down guilt. I could take days off and spend them crashed out in bed, sleeping and waiting for some energy to gather in me again, work for another few days, crash for another few days....rinse, repeat. That worked for another 5 -10 years or so.
Eventually, after breast cancer treatments in 2007/8/9, even making my own hours was too much, and here I am now, perpetually on the brink of the next crash if I have the audacity to make Normal and get out of bed.
So I
really resent hearing other people, at an earlier stage than I am now, tell all and sundry that it's *just* a case of pushing through, thus reinforcing some Normals' and the general media belief that anyone with CFS/ME is a lazy b who milks the sympathy vote, reclines like Lady Muck on a lark, positively
luxuriates in bed all day, and actively
enjoys not being able to work.
I can't think of anyone I know with this disabling and often misunderstood condition who fits that warped perception. I can think of few things more humiliating, degrading, and disempowering.
So there!