I have chronic fatigue immune deficiency syndrome. How do I know this? Because I was diagnosed by a whole bunch of beard-rubbing medical professionals, including the chief medical officer of the Old Mutual, a whole slew of blood tests and the like, way back in 1999. I was told by all these good men (and one excellent woman) that I was pretty much stuck with this state of affairs and that I'd never be truly well again and as for work - forget it - retire and enjoy starvation while I'm young enough to appreciate it!Thankfully, there are a few really good medical practitioners in Cape Town who don't have this defeatist attitude and after two long years I was well enough to work again and although I admit that my AA+ personality-type is now more like a C- and I tire easily I can work a 10 to 12 hour day with the best of them.
Now I know that "frankly my dear we don't give a damn" is what you are all thinking and I'm with you on that, but here's what is pissing me off:
The damn disease has recurred (apparently it'll do that if you get too smug about the whole thing) and although I've got it under control (with the wonderful, albeit expensive help of Dr G who is a GP and homeopath) I do some days tend to look and feel a little on deadish side.
OK bear with me now I am getting to the point - slowly - remember I have CFIDS - what really has ticked me off this morning - and in fact ticks me off most days - is how the general public views this horrible, life-ruining, fun-sapping, drink-restricting, food-limiting scourge!
"oh you have yuppie flu" they explain to me, with what appears to be scorn, and then kind of brush me off with a look that says if only you'd be less of a clothes-horse and have ugly hair and wear cheap perfume and stop buying all those shoes, you would recover your health (which is only mildly compromised anyway fool - it's just the flu!). Well, here are a few facts:
NO I am not a yuppie, never have been, don't even like BMW's! I buy my jeans at Woolworths and shop at factory shops.
And for the last time you @#%*$ it is NOT the flu. I have Cytomegalovirus, Epstein Barr Syndrome, Toxoplasmosis and a few other nasty little devils. My liver just ain't what it used to be (and as a wine lover I can promise you this in itself is Hell).
Today I read a post on a very funny blog - the writer said her housemate suggested that because she is always sleepy she probably has CFS - her response was along the lines of "I ain't that cool or that deluded dude".
Well, just for the record - most of us CFIDS sufferers are always exhausted but sleep not only doesn't help, we are almost all insomniacs. To whit, last night I fell asleep on the couch for an hour (we don't concentrate too well so TV will do that to us) woke up and couldn't sleep again till 4.00 am when I managed 2 hours - then I had to get up for work. That just isn't cool and it doesn't help that I am running a low-grade fever, have a headache, upset stomach, sore throat and feel like what I scrape into the poop scoop every other day when I clean up behind my garden after my dogs (ok my mom comes to visit most days and does it before I get home from work - what can I say some mothers are truly angels!) but here I am, behind my desk, lipstick in place, hair all a-gleam (love my new haircut hairdresser angel) and dressed in my best non-designer Woolworths/monsieur price/factory shop best and looking forward to the wine auction I'm attending tonight.
So, next time some poor soul tells you they have Chronic Fatigue Syndrome or worse, Chronic Fatigue Immune Deficiency Syndrome (that means every bug you bring to work - we catch it - you carry on unscathed) don't brush them off with an attitude that says "your lifestyle, your problem" go fetch them some herbal tea and show a little sympathy - they will love you forever and help out next time you are not coping with YOUR workload.
9 comments:
Needs a catchier acronym. People tend to be more sympathetic towards conditions they can pronounce.
pffffft. who talks about yuppies anymore anyway? it's no longer the 80's the yuppie is dead.They got replaced by slacker Gen X hipsters.
Kyk its called "seefids" for short - that's if anyone had any idea what one was talking about. Some folks (and doctors) call it ME (emmy) but hey I can't even spell myalgic encephalomyelitis and spellcheck don't help none here!
Bete I definitely don't qualify as a GenX-er. Although I do believe that even as a ma with a malady I am still seriously cool! But, I don't think I can qualify as a slacker - working on it though, now that my AA+ is slowed down to C-
Seefids? I suggest they call it something like "Creeping Death" or CreD for short. That's way cooler.
Charmskool, my blog post was entirely tongue-in-cheek and I do apologise if you found it offensive. In truth I know *nothing* about CFS and can only imagine how difficult it is to deal with. I wish you strength.
Kyknoord - Creeping Death (CreD)simple, descriptive, easy to spell; once again you have excelled.
Bec - I loved your post - it just triggered a response that's been waiting to get off my chest.Thanks for the good wishes I definitely need the strenght today to deal with my hangover - oops those wine auctions are a bugger!
I read that kids who can barely walk (because they're so young - if feel that needed clarification) are now being diagnosed with CFS.
What a terrifying illness. Then again, I find AA+ personalities equally terrifying, so congrats on being 'demoted' to a C-.
P.S Your word verification for this comment is "cudnwd". I found that vaguely offensive, borderline arousing.
DBAWIW cudnwd heheheh - those word verifications are so funny - I too am forever grateful for the demotion to C- as are my friends and family. I am far nicer, less stressed and have totally learned to ignore dust, doghairs, etc. I can sit and gaze into space for hours and not feel a moments' guilt. Love it! As for kids having CFS it's really frightening. One of the profs at Stellenbosch Med School told me that there have been links made to man-made viruses and Gulf War syndrome, and the University of Edinburgh has found a link to Polio! It is so scary and the worse part is there are doctors (like my ex-gp)who insist that it doesn't exist! I wouldn't wish it on an enemy but some days I wish a few of those remaining disbelieving docs could get a 2 month attack - just a taste you see? Nothing permanent (like the rest of us).
That being said - I still have a huge amount of fun and most times can keep outlast the hardiest of souls.
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