Thanks Snez & Jody,
But seriously here, how do you get people to comprehend the depth of your fatigue?
I suppose you could say it's like having the worst viral flu non stop for days, weeks, months & more often than not, years on end.
But if they're healthy people, I don't think they know what that means.
I sometimes say, it's like the last time you did hard physical labour in the garden all day & couldn't move the next morning - not quite right, either.
There are the days when your limbs feel like they're encased in concrete (in my case, this particular feeling has only happened a few times, but having experienced it, I can understand what the majority of you feel more often than not).
Two years ago, at work, I couldn't remember how to write the letter "p" - so frustrating. I tried "b", "q", "d", "b" - nothing looked even vaguely familiar. After a while, I went for a walk to the lift & went down to the basement restrooms (why they didn't put restrooms on every floor in this new building beats me). It took a while, but eventually it "clicked" and I was able to finish writing the internal office memo.
Last night I was so tired after typing on my computer, I pressed the wrong key & deleted 3 hours of typing!
This is only about the 6th time I've done this in the last couple of weeks, so to the people that might have been expecting an email from me, I'll get to it this weekend - I promise - sometime.
But can I remember what I said in that email (or post) last night, so that I can re-write it?
Then I went to do the dinner dishes at a very, very late hour & just couldn't be bothered, so I put my prepared breakfast in the freezer (instead of the fridge), discovered I'd stripped the bed linen that morning to put fresh sheets on the bed, & had forgotten to remake the bed. So I just slept on top of the mattress. Then tried to take my contact lense out of the eye that was already emptied, and so on. It could have been incredibly funny, I suppose.
Actually, it was incredibly funny, trying to flick the contact lense out of the eye which I'd already done. Or sometimes, I think I've dropped a lense on the floor & got down on my hands & knees with my nose & eyes about 6 inches off the floor, "sniffing/snooping" & peering around like a bloodhound. You have to see this to believe it. I crawl around & eventually get up to look in the mirror to discover the lense is still in my eye & has been pushed off centre.
Sometimes I wonder how we remember our names (any more than our addresses), let alone when a new Dr or specialist asks about our health history.
I have some things down to a fine art. I have several pages listing each major illness, operation & new symptom date.
I turn up at the emergency department at my local hospital with a printed sheet in my purse - I carry it everywhere (just in case I forget who I am).
It lists name, address, date of birth, occupation, employer, next of kin, local GP, cardiologist & neurosurgeon (they're the only ones who rate a mention in my eyes). I have my private health cover m/ship no - type of cover, my medicare number, ambulance m/ship number, each health condition & treatment, drugs/supplements (worthy of mention), surgery dates, allergies/sensitivities (like room spray & mould)
and finally at the bottom of the page "to be alert for any potential drug/chemical reactions".
I guess a normal, healthy person would see this as an obsessive/compulsive trait, but this is the reality of my existence. I daresay, many of you take your list of things you want to discuss every time you visit the Dr (in case you forget something, or are just too tired to talk).
Each one of us on this forum could relate a list of incidents or distressing situations which hone in on the reality (be it, ME, CFS, FM, MCS, Crohn's, or any one of a dozen
different even more serious health conditions).
"Thank God, it's Friday" today (in Melbourne).
They made a film in the late 70's with John Travolta called that, didn't they? Except that John Travolta couldn't wait for Saturday to dress up, slick back the hair, & gyrate his pelvic & swirl his arms around & hit the dance floor, with the smartest feet moves of that era. And before that was Saturday Night Fever.
Now I'm showing my age......
When did you last "hit the dance floor"? (21 years ago was my last, I think).