The following story was written by my friend Jazmine and I've asked her permission to print it
on one of my pages dealing with fibromyalgia and chronic fatigue syndrome. It's robbed me of 40-60% ability
to do things pre-illness. Jazz is a very young woman who's body has been attacked with a vengence to the point
she has to resign from writing for Whispers, the online
magazine. Her last article will be in the December 1999 issue.
Most of you who read my column probably know that I suffer from CFS a debilitating illness. I thought it might be
enlightening and hopefully fun to take you on a journey with me through a typical day in my exciting life.
A little knowledge of this disease may illuminate the path we take together. CFS is the initials for Chronic
Fatigue Syndrome, I prefer to call it Chronically F---up Syndrome myself for reasons that will become obvious.
CFS is a neurological disorder affecting the central nervous and immune systems. Among the many aches, pains,
headaches, allergies, digestive upsets, dizzy spells, nausea, irritable bowel, irritable me, etc. this illness also
affects one's ability to think. One is subjected to short term memory loss, brain fog, forgetfulness, disorientation,
inability to focus, confusion and a loss of up to 40 I.Q. points. Right now I could be retarded or for the politically
correct; intellectually challenged and if I have indeed lost 40 points from my I.Q. I now have the brain of a pumpkin
and should be kept in a vegetable tray.
My day starts with the almost impossible task of getting out of bed. It generally takes about ten minutes to "de-cramp"
one or both my legs, attain a sitting position where upon a sharp edged sword goes straight up my butt and severs my spine.
A pounding head and rigor mortis like stiffness complete the picture. I am then ill prepared to tackle the complexity of doing
a slow, painful 'rubber legged shuffle' to the bathroom. On a good day I can still locate that room, what to do when I get there
is another brainteaser, well apart from the obvious that is.
I turn around in circles for a while until some of the fog clears and I'm then faced with the mind numbing decision of whether to
shower or not to shower? There is only one possible solution here because my head is spinning so fast on it's axis, it's about to
shoot off into space like a Frisbee. Then there would be a very real danger of finding myself legless as well as brainless and crash
through the glass shower screen. So a quick wash, did I say quick? Whatever, a wash will have to suffice until the game of 'Spin Dizzy'
has spun dry.
Breakfast is a simple affair. I usually sit over a piece of burnt toast and cold tea fighting off sleep and waiting for the painkillers
to kick in. This can take up to an hour or more, than I get what is called "the pause" or in other words, I am unable to move off the spot.
I sit like a zombie staring into space, brain sound asleep body glued to the chair waiting for a command from somewhere on high to tell
me to move. The call finally comes, and with Herculean effort I rise with the aid of my cane and head for the study and my precious computer.
We both wear magnets so there is no search involved here, I am just zapped into my seat in front of the monitor where I am more than grateful
for my addiction to this electronic marvel.
Once there, I check my mail and then promptly fall asleep over the keyboard. Another two hours pass and I get a wake up call from my bladder.
It's then I also feel the elephants stampeding in my head and a crazed lunatic jumping up and down on my back in hobnailed boots. Time for more
pain tablets as my kidneys and liver begs for mercy and healthier living conditions. Thank God they don't belong to a union.
The phone rings and I put it to my ear upside down. "Hello, hello, damn it, hello. Oh giggle! I am listening with the mouth piece." It's my
Aunt Shirley, she has been caught up in a time warp with menopause for the past twenty years and her memory is non existent, rather like my own.
We understand each other very wrll, most items and events we call 'THINGOS'. Time has no relevance to us, every major or minor occurance happened
'THE OTHER DAY', it could have been two years ago but we know only one frame of reference. Aunt Shirl has called for a reason, but try as she may
there is no way she can remember during our disjointed conversation. There is always a second call to tell me why she called the first time.
She left a 'THINGO' in our 'WHATSAMACALLIT' the last time she visited which of course was just 'THE OTHER DAY'. Have I seen it around anywhere?
Maybe I will try the 'WHATSAMACALLIT' first, it could be there.
The 'WHATSAMACALLIT' is in the ummmmm! Something or other room. No matter I will go check. Once there I have forgotten of course what I am looking
for, so on wobbly legs I retrace my steps to recall what it is I am looking for. Amazingly, 'the THINGO' just happens to be in the 'WHATSAMACALLIT',
but it's all been an exercise in futility because Aunt Shirley is still waiting on the phone and will be for quite some time. Yours truly has been side
tracked and no longer remembers she has an Aunt Shirley and shoves the 'THINGO' back where it came from. She then limps off, her mind a blank page...
Aunt Shirley has forgotten why she is standing with the phone in her hand anyway; she stares at it with a pained look on her face, remembers nothing and
hangs up.
Meanwhile I have found my way back to the kitchen and the white board where I write everything down that I have to accomplish for the day. The board
is bare save for a message telling me to go to the hairdresser at 1.30p.m. Then collect my younger brother from the station at 4.30p.m. After staring
at the board for twenty minutes trying to figure my next move, the message finally comes into focus and I realize I have a hairdressing appointment. Damn!
I wanna go play on my computer, so I do, and make myself fifteen minutes late. However, these people know me well and expect me to roll in behind the
appointed time. Big deal! I also roll out behind the appointed time---most days way behind.
I simply must have a cup of tea before I leave, I know there is no time for lunch, I actually worked that out for myself so it's tea and cookies. Sounds
easy enough, but I stand there trying to work out what to do next. A cup's a good idea, now where the hell are they? Not in the fridge I just looked there. Damn!
My head and back are screaming in torment. "Ok I hear you, more pain tablets coming up or is that going down? Whatever! I always know where they are kept; my memory
is very selective. I now have two white tablets in my hand and no water or tea to wash them down. That's right I was looking for a cup. Foolishly, I put the tablets
down and go in search of a cookie, opening the Microwave door I stare at it's bare interior for minutes before realizing the cookies are kept in the pantry.
I now have the cookies, but still no cup and where did I put the tablets?
Turn the electric jug on girl you need hot water. Ooops, I forgot to fill it. The kitchen is now as fogged as my brain, that little jug sure makes a fuss when it only
has a few mils of water left in it and some fool switches it on. While giving the jug a well-earned drink I spy the cups sitting on the mug rack two inches from my nose.
Great I am getting somewhere now. A cup of hot steaming tea with cookies is now ready to be consumed, but where are my bloody tablets? Is an envelope waiting to be posted off
to a friend, the letter I wrote to put inside is moe than likely sitting in a trash can some place. Damn! Being brain dead sure is hard work!
Oh well, That little exercise only took half an hour, that's reasonably fast for me.
I once loved going to the hairdresser, found it relaxing, painless and an activity of pure indulgence. Now, the basin puts my neck out for a week, the rubbing and
scrubbing, guarantees the loss of a million much needed strands of my thinning hair and everything they do inflicts some form of torture.
Then there are the deadly fumes from the sprays of fifty different cans and perming solutions as toxic as nuclear waste. When hit with these my head becomes so light
it floats away from my body and takes refuge in a cupboard somewhere. Not an ideal resting place when one's hair needs cutting, thus it has to be coaxed out of the cupboard
and attached to my neck with butterfly clips. Then revived and counseled before anyone dares to start the drawn out process of turning my 'haystack' into silky tresses once more.
Three and a half hours and seventy-five dollars later, my hair is gasping for breath with the globs of Gel and hairspray blocking its air passages. My allergies have all burst forth
in a blaze of brilliant red. I am coughing and wheezing as I very slowly stagger back to the car. Time to fetch my brother from the station. The little bugger is not there, so I wait
half an hour, give up in total disgust and drive back to the shops managing to only get lost three times.
Shopping was sheer joy in former life, now it's total agony. My wheel chair has a broken wheel, so I have to foot it with just my walking cane. The day is going swimmingly so far. I
finish buying my little bundle of personal goodies and make a frightening discovery-----I have lost the keys to the car. More retracing of my steps! Ugh! I go back over every inch I have
chicken hopped, all in vain, no keys to be found anywhere. What to do? I strain my fatigued brain trying to think, so much fog to penetrate!
My brother has been left stranded at the station; unknown to me he has run the two and half kilometers home. The poor boy needs my car in a hurry he has to return some keys to his work place.
Sorry about that, the car is going nowhere till I have something other than a hairpin to start it with. I tell him this when he rings me on my mobile.
He runs another two kilometers to the shops to fetch it. Upon arrival he finds that his pocket is weighed down with keys and not one will start the car.
yep! He left his car keys at home. What to do now? Why panic of course! No, brother is still able to think, we ring our Dad, and he is in the area about five minutes away. There is a God.
It's a rare moment when we are happy to see a parent; however, right now we are ecstatic.
I finally arrive home and limp to the mirror, there is enough Gel in my hair to add ice cream and serve my head up for dessert. I care not and head for the nearest sofa where I flop down and
begin the slow process of dying.
It's been a wonderful day and I still have the night to look forward to. I wake up every two hours despite the fact I am completely exhausted and running on empty. Around 11.30p.m. I give
up and head again for my computer, there I spend the night, sometimes sleeping on the keyboard for my two hour naps, sometimes awake all night and falling back into bed about 5.30a.m. Life is
a beautiful thing!
Are you still with me? I'd let you go but first I have a few words to impart, CFS and a similar syndrome called FMS are life-altering illnesses. There is no known cure and most don't recover. We
look healthy and people think we are malingerers, nothing could be further from the truth. Why would anyone choose a lifetime of staying housebound of not being able to follow one's dreams and career
paths or take in a movie, go dancing, go anywhere? One of the worst symptoms of these illnesses is the one that makes others skeptical and calls us lazy lay abouts. If you know anyone with CFS/FMS
please be kind to him or her, they are in hell all of their own. The divorce rate among sufferers is very high and many have to get by on very limited incomes as well as leading a lonely, isolated
life. These syndromes do not play favorites they target the rich and the poor, the famous and infamous, young and old alike. Anyone can fall prey to this nightmare existence.
Thank you for joining me for a day of fun and mayhem, as I said in the beginning, just a typical day!