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CFS| Chronic Fatigue Syndrome

Hot as Hell

Posted by amber | My Diary | Posted on January 20th, 2012

So, the heat of the last 4 has made me put pen to paper.

CFS + HEAT do not compute.

Add to that malaria tabs (see Malanil) – which I believe have a cumulated effect – and I now am dizzy, nauseous and am having vivid and unpleasant dreams. Add to that Body Tech (an electric current which contracts your muscles) which is the CFS sufferers answer to lifting weights without actually having to. So now everything else is sore and it’s “that time of the month” and its post Xmas and New Year hangover!!!!!!!!!!!!

Can you hear the blood curdling yell?!#@$%^

As you already know CFS and December is an awful combo. Too many people; too much noise; too much unhealthy food; too hot; too many late nights, plus the stress of the Xmas period. For the rest of the world it’s a fabulous time of the year = parties, the beach, presents, etc. We however DO NOT COPE, BUT we none the less believe we are and soldier on ignoring the tell-tale signs.

So I sailed through Xmas and New Year and then went straight into 6 days on safari. This is my BEST kind of holiday. Up at 5, everything is fresh and new and crisp and clear. Then the joys of the outdoor shower under the trees – delicious. Followed by bracing morning air, chilling your face as you bump and bounce your way through the bush on a 4×4. Your eyes are peeled for a glimpse of the ever elusive wildlife … and you are never disappointed.  Imagine an 8 week old leopard cub, with the biggest sapphire coloured eyes enrobed in spotted fur; or 8 lion cubs, a muddle of arms and legs, growls and purrs and golden down and liquid brown eyes and pink tongues; or a herd of elephants, all grey wrinkly towers if pure strength yet with these soft, intelligent eyes encircled by the longest lashes; trunks twisting and turning elegantly; and baby elies like fat little kids wobbling after mom. BLISS.

And then it’s time for morning munchies out in the bush – dunking rusks in tea, whilst your breath mists the sir. By midday you are wallowing in the cool waters or lie collapsed in a sweaty heap in the shade, every movement an effort. And then at 4 it starts all over again; another adventure and the excitement is tangible.

All is good and well until you are back home and CFS claims me again. Big powerful claws drag me down and nausea rises as the energy drains; fatigue suffocates me; muscle, sinew, bone and flesh conspire to leave this sinking ship and pain floods in. I just cannot keep my eyes open; lights to bright; sounds too loud; life too hard …

Back to Front

Posted by amber | My Diary | Posted on November 21st, 2011

I wont be the first or the last to say the world is back to front, but the following has been sitting with me and freaking me out -

Why do we spend more time and money on following the lives of Brangelina, Demi and Ashton and Jennifer Lopez, yet we probably spend less time and money trying to find a cure for AIDS?

We have not solved the problem of famine in Africa but we have invested millions in creating numerous varieties of eyelash lengthening mascara.

We have perfected and improved the use of botox and silicone implants to make our selves younger and sexier but we cant seem to bring the rape statistics down.

Our weather patterns are changing due to our selfish practises and disaster looms ahead but we would rather spend time and money on developing a a better ipad or newer cellphone.

Are we really any closer to a cure for cancer? Probably not but we will happily spend millions sponsoring some celebs wedding – see the Kardashians.

Everyday dolphins and whales are slaughter inhumanely; tigers and leopards are hunted for their skins and rhinos are brutalised for their horns, but we probably spend more time and money worrying about how we can get rid of stubborn stains in our washing.

We can not seem to stop the creation and distribution of child pornography but we will find the money to purchase a new cream to reduce our cellulite.

And we will invest time and millions in the latest fashion ranges, fashion magazines and fashion shows but we just cant seem to find those resources to find a cure for CFS!

Kick me when I am down

Posted by amber | My Diary | Posted on October 12th, 2011

You know with CFS you kind of think you have been punished enough for this lifetime or at least you are able to ‘expect the unexpected’ and ‘take it on the chin’ but clearly I am a slow learner.

Today my baby girl, Black died. She was my constant companion over the last 3 and a half years. She spent every afternoon, without fail, curled up next to me on the couch. Once comfortable and having been stroked to induce vibrating purrs , she would almost throw herself on her back, tummy in the air, awaiting a belly rub. And don’t think a couple of minutes would do. Generally i would fall asleep whilst attending to her. When my eyes were too sensitive too light she would happily tunnel under the blankets with me and fall asleep alongside me.

And she gave the dogs hell. God forbid they got too close she would lash out with a talon and a hiss and they learnt to make a wide circle around her. Her favourite spots to nap when I was out, were behind the blinds in our bedroom or under a bush in the garden. She loved biltong and licking the yoghurt from my breakfast bowl.

Here she is with Lopez, a new buddy. The two of them would sprint up and down the passage at home, on and off the bed and eventually someone would come off second best. Usually Lopez, even though she was twice the size of Black. Lopez is missing her buddy too.

Black’s other favourite pasttime was licking the shower after you had been in it. I will miss that even though I would sometimes get irritated because she would sit outside the door of the shower crying till you opened it for her.

And lastly who will wake me at 6 in the morning with a continuous meows. Sometimes as many as twenty in a row.  And when that didn’t work a light tap to my nose, followed by an even more energetic one -using the claws – usually did the trick. And then contented she would knead and purr the duvet and then throw herself on her back for the customary tummy tickle.

Life is not fair?

And how much is one meant to endure?

And can there be a god that lets this happen?

And as for this below – “I f..cking hope so.”

Sugar, babes?

Posted by amber | My Diary | Posted on September 11th, 2011

I am not a sweet person. In fact fresh warm bread with a thick crust, loads of butter and salt, that’s my weakness. But once in a while, the need sets in with a vengance.

It started with cupcakes. I longed for one, only one chocolate or vanilla, with thick, sugary, piped icing, almost as thick as the height of the cupcake. Plus lets not forget a shiney red glace cherry on top. I eventually found a single one and sneaked it into the house. I was not sharing! And then proceeded to ration myself to a nibble every hour. Heaven….

I thought the storm had passed. But I was wrong. The next day at art my friend had made a carrot cake. It was still warm from the oven, drenched in cream cheese icing which pooled on the top, and moated around the bottom. Soooo divine.

The craving continued so I decided to go health. This means Smarties, because they are smaller or Jelly Tots because the contain 0% fat. Well they tell you there is 0% fat and I am willing to buy that sales pitch. So in order not to eat them all I emptied out the packet and divided them into the various colour groups – 8 red, 5 green, 9 orange, etc. And then rounded them off to the average and ate the remainder. And put the rest back. But later they called me. I had to eat them. They were 0% fat! P.S Same technique can be applied to Jelly Tots or any other colour mini sweet.

I apply the same fuzzy logic to dark and milk chocolate. I mean we have all heard how dark is healthier than light; less fattening; good for your mental health, sex drive… So therefore it goes without saying that I can eat more dark chocolate than milk.

Which brings me to Sweetie Pies. In case you are not acquainted with this gem, they are boob shaped mounds of meringue covered in a layer of milk chocolate, all atop a biscuity base. Best eaten = bite off the top; lick out the meringue; devour chocolate and biscuity base. Mmmmmmmmmmmmmhhhh.

Also a good fix is a jelly and peanut butter sanwhich, but ditch the bread. Just top a teaspoon of peanut butter with a teaspoon of jam and swallow! Same applies to Nutella.

And lastly the worst thing I can do when I need a sweet fix is buy a whole cake. Sometimes I freeze it after I have had a slice, but actually I have discovered that icy cake cuts better and tastes delicious. I have also thrown a cake away but then in sheer desperation retrieved from the bin. Not so hygienic but the upside is if you start throwing up there might be more space for cake!

But there is nothing to top the sheer yumminess of raw cake mix. The low calorie way of enjoying this is to make a cake for someone else – in theory. And the best part is you get to eat raw mix; lick it off the spoon, bowl and beaters!!!

Anyway enough for now. tomorrow I trun 41 and I cant say I feel excited. But lets hope someone gets me a beautiful, perfect, icing laden cupcake!!

It’s plane, I hate flying!

Posted by amber | My Diary | Posted on August 7th, 2011

I hate flying. And most of all in those small planes. I always console myself that you are closer to the earth in the smaller ones and they can glide, so your chances of survival are alot better. BUT I still feel ill the whole time. Plus you experience the weather first hand and up close and personal. Sometimes I pretend I am on a motor boat in the ocean going really fast, but that image doesn’t last to long and I am praying for it all to end.

Now big planes are really not much better. If they drop out the sky into the sea or onto land you are not going to survive, despite all the info cards, oxygen marks, the slide and escape routes. Anyway probably crashing is least of ones worries. Do you have any idea the amount of germs that must be on your plane seat? The seats are generally covered in rough fabric, ideal for rubbing off skins cells; absorbing bodily juices; great for dandruff to cling to; never mind that there must be fleas and/or bed bugs. And its a perfect breeding ground for all sorts of diseases – warm, moist!!!! Oh my hat!

And then to the food and the airline stewards!! That could kill you to. The smell of the food cooking in the kitchen actually turns my stomach. And then we have the ever helpful stewards. They really don’t care. They think they are at the Ritz meanwhile they are basically behind the counter at McDonalds serving the ungrateful masses. Not even the alcohol can take the edge off. Before i got CFS I would chase a Myprodol with a glass of champagne, now I cant do that. Very frustrating.

And then you have to wait for the “entertainment” to be turned on! And hold your breath for the splendid selection of movies … enough to make you take your own life. But just as you are settling into reruns of Friends, you need the bathroom. Or should we say ‘small cabinet’. You squeeze yourself  in and try to avoid the wet patches on the floor. What could they be!!! Then you cover the seat with copious amounts of loo roll, because balancing above the toilet in turbulence is not possible. Still in a tizz you flush … and flush again… and flush again. Despite the fact that the suction is so hectic it could suck your eyelashes off, it doesn’t really work at all on the goods it should. Panic! Fill a plastic cup with water and chuck more liquid in the loo. Please God this works because no one can come in here after this. Eventually covered in sweat and near hysterical you extricate yourself from the cubicle and everyone knows, because if the flushing noise didn’t give it away the red light has turned to green!

Aah, at last you settle into your chair. Time to sleep. You snatch a extra pillow and try and pad the morgue table you have to sleep on, other wise you might develop scoliosis . It does not help. And to make matters worse you hit turbulence and everyone else is asleep. You lie there in full blown hysteria. “Can no one else feel we are going to drop from the skies?!@#$%” You try calming breathing techniques; meditation and as a last resort you try all religious incantations you know from when you were at your Convent school! You cross yourself; promise to do something really good for charity when you land safely … And then calm prevails.

Now I have come to the following conclusion. Flying is not safe. I do not like flying and I never will. All the safety drills will not help. But if I am going to be discovered after the crash I should look devastating not devastated. So dress to the nines. Wear your best outfit, killer heels and put on the full death mask. Go down gorgeous!!!

Source Code or the Fork in the Road

Posted by amber | My Diary | Posted on June 29th, 2011

I went to see this movie called Source Code a couple of weeks ago. It was basically about a guy that is made to go back in time and alter events to avoid a bomb going off in a train.

Anyway it got me thinking about how unbelievably fabulous it would be to go back in time and change or tweak my life so that I didn’t have to be where I am today with CFS. I was kind of wondering where that fork in the road came that led me done the CFS path as apposed to another? Would I recognise where the ‘train’ truly went off the rails? Or would the choice be so subtle that even going back I wouldn’t see the nuances that could alter my destiny???

The two forks that I think could have altered the outcome of my life are as follows,

  1. If I had never started boxing, then in theory I would never have slipped a disc in my neck. And I wouldn’t have landed in bed at home for 3 months and therefore I would have never needed to celebrate my neck recovering by going to Mozambique. This way I would have avoid the neck injury and CFS!!!
  2. Or if I just had never gone to Mozambique and slept on incredibly filthy bedlinen, I might never have caught the virus/parasite/bug/lurgy that led to the unleashing of the CFS???

So what I would like to know is if any of the above where forks in the road and why did I pick the path I did? Am I meant to make lemonade out of the lemons or use rocks to build when I would rather be throwing them?

And why do we have to have choices or is the whole damn thing preordained and we are just a piece on the huge chess board of life maneuvred by one seriously sick f..k!@#$%^

21st Century Barbie

Posted by amber | My Diary | Posted on June 14th, 2011

In case you are unaware Barbie and Ken are having a bit of a tiff of late because she wont ‘go green’. The makers of Barbie, Mattel, will not make there packaging green and Ken is rather upset about that. Which kind of got my mind wandering … how is Barbie  handling aging?

I believe there is a place in the Barbie range for a new addition = BODY DYSMORPHIC BARBIE. This means the person is excessively concerned about and preoccupied by a perceived defect in his or her physical features. Boy would I have fun making this line. Firstly she would come with a botox kit, including test tubes of the botox and syringe to inject herself with. She would wrinkle up and then when injecting her face with the botox would miraculously puff back out. Body dysmorphic Barbie would also come with a set of calf and butt implants, which you can insert into her plastic body to create the desired changes. And Barbie would not be Barbie without boob implants. She would also be supplied with saline sachets to buff up her bosom.And just to round off her unstable body image I would include hair extensions, false nails and attache able extra long lashes! One could also include dye to get rid of the grey. Oooh and what about stick on acne – for her face and back! They could even create a device which expands Barbie’s body so she looks like she is fat and then she can try all the mad diets to get thinner.

The next new addition to the 21st Century Barbie range should be Batty Barbie. She would suffer from a range of mental illnesses, like Munchhausen syndrome; arachnophobia, she could even be bi-polar. When she suffers from Munchausen’s she would make her kids drink detergent or burn them on purpose so she could take them to hospital. Batty Barbie could also come with a whole lot of small Barbie size spiders to feed her phobia or a couple of phobias. When Barbie is bi-polar she could go out and shop like mad; book a vacation to the Seychelles or just buy Ken loads of gifts. And when she is in the down phase she could stop brushing her hair; do drugs and feel suicidal!

I briefly contemplated a CFS Barbie but really she wouldnt be a big seller. I dont think sleeping all day; no energy; slightly depressed Barbie would get alot of sales!

Bitter Sweet

Posted by amber | My Diary | Posted on May 22nd, 2011

I got to thinking that my life is a like a bar of dark chocolate – 70% delicious and 30% “what the f**k”. I mean when I am eating the stuff I am not really sure I enjoy it.  know its healthier than most but is the first taste bitter and the aftertaste sweet or visa versa?

Last night I went off to this glorious Nederburg/hot new socially conscious babe’s party. …very determined not to wear black but tottering off in impossibly pointy heels we arrived. After negotiating the 90 degree driveway, we surfaced into the tranquil and horizontal lobby where we were handed a elegant flute of golden bubbles – but I declined. CF and alcohol ARE a lethal mix. But for non drinkers the choice was aqua, with or without bubbles! Stunning. So clutching my nerdy glass of bubbles we floated into the soiree. It was a sea of black – pleated, sheer, sequined, ruffled, but none the less BLACK. There was the odd glowing ember of a cigarette or a smooth shiny pale moon of flesh, but generally still black. God we can be boring and safe. With the black came the insecurity of our decade – botox, silicone and ankle breaking heels.

But the food was great – butternut samosas with tzaziki dipping sauce, mini calamari and chips, Barbie size spring rolls, Paris Hilton size fishcakes and steaming bowls of mash and gravy lamb. Or silver buckets groaning under the weight of glistening oysters.

The crowd – single hungry and desperate men and women; trying hard to look anything but single, hungry and desperate. Ex models still posing and primping for the camera. Androgynous “Victor Victoria” look alikes; a gaggle of Lindsay Lohans and a smooth of Brad Pitts. There was even a George Michael look a like, more the post Wham/public toilet debacle version, with sunglasses and a tyre. One creature was swanning around in a Ostrich feather creation, more drag queen than fag hag. A couple of brave anti-PETA types were coiled in furs, whilst some desperate to be noticed billionaires bumped chests over whose Ferrari track times were faster. Heavily lashed (fake darling) coquettes puffed away elegantly discussing matters of the day – the latest shoe designer and the IT bag phenomenon. If they all blinked together they could have summoned a tsunami. Then there were the swingers. They came , divided to conquer. The husbands soon juggling tipsy blondes and the wives slithering enticingly around mesmerised  potential prey. And everyone is content – free champagne!

So, the pay back has to come. I crawled into bed, my body aching all over. My arms felt like I did 12 rounds with Bernard Hopkins; my legs felt like I had auditioned for “Black Swan” and the rest was sort of 6 car pile up stuff. But it was still, sort of, worth it!

The After Life

Posted by amber | My Diary | Posted on April 14th, 2011

… or the beginning of the end.

I am in quite a negative space at the moment. It is 3 years today since my life changed. And the sad thing is that time has not eased the pain. Plus ‘change’ is always seen as a positive thing and I can not say I see that.

The afterlife (also referred to as life after death, the Hereafter, the Next World, the Other Side, or the World to Come) is the belief that a part of, or essence of, an individual which carries with it and confers personal identity survives the death of the body of this world and this lifetime, by natural or supernatural means.

So I still have my essence but the rest seems to have vanished into thin air. I can no longer walk along the beach front without feeling sad, envious and angry all at the same time.

Sad that even walking no longer comes naturally;

Envious at those who run past, filled with energy and joy;

And angry that this has happened to me!

I actually am moved to tears when I drive past people outside exercising and doing what is actually very natural and I can only dream of those days. I look at the way my body has slowly but obviously degenerated. The muscle that was so much part of me has dissolved into spongy curves, cellulite thighs, saggy knees and my arse has all but vanished. And I know this sounds vain and self absorbed but it is the reality. And with this dissolution of body has come the loss of self. I don’t feel like me, look like me, act like me.

I am shoving countless tablets and powders down and yet my memory is shaky; I no longer get my periods; I loose bundles of hair everyday; I have a scalp littered with scabbing sores and I am out of breath at the slightest suggestion of effort. There is the nausea; serial yawning; aching sore muscles and the sensitivity to light, noise and movement.

And even worse is the friend who says, “so are you still not better?”, with awe and disbelief.

And I try and be hopeful and positive but actually nothing and no one has yet shown me that things can possibly change …

Doctor, Doctor

Posted by amber | My Diary | Posted on March 22nd, 2011

Okay so I confess I got a “second opinion”, actually probably my 19th or 20th opinion but who’s counting!!!!!!!!!!!!!!!! This time on meeting the medical practitioner, a Professor no less, he immediately diagnosed “inflammation” and that he said he could see in the whites of my eyes. Maybe it was the look of a CFS patient (boredom, desperation, disbelief) facing another doctor who was going to cure this ailment.

Either which way it was a new line and I sat there in awe. i rattled off my tale and got sympathy and understanding. My illness was acknowledged and it was not in my mind. He could finishes my sentences for me and he “hmmmd” and “yes’d” at all the appropriate times. “WE HAVE A WINNER!!!!!!!!!!!!!!!” I was loving this guy.

He also didnt believe in heavy medications unless absolutely necessary and for a very short duration. YES!!!!!!!!!!!!!!!!!!!!

He suggested I start with INFLAMX by Metagenics and that I needed to drop off some fecal matter. …WHAT ???????????????? It was all going so well there for a moment.

Anyway being a desperado I rapidly nodded my head and went off with my fecal matter collection device clutched in my sweaty paw.

But before I take you on that ride, lets examine INFLAMX. It is a powder. Sounds harmless enough. Which you mix into a glass of water. Okay…. However the powder is egg yellow in colour. It contains turmeric. It is not too bad but I am somewhat concerned that a month or two taking this powder could have me looking like I work in an Indian curry house – gruesomely yellow stained gnashers!!! Guess teeth whitening will have to come before botox and liposuction.

On to the fecal matter collection device. You are probably thinking that you get to do this in a big Tupperware. YOU ARE SOOOO WRONG! Its not like in the movies. In fact I have a container the size of a test tube and a teeny Barbie spoon. Oh and it gets better. You can either do your business on a paper plate or cling wrap the toilet seat. IS EITHER ACTUALLY AN OPTION !@#$%^ Do other people not do a number 1 and 2 at the same time?

I am sorry this is somewhat graphic but hell this is such a weird exercise?!@#

Any who….. Back to the fecal matter at hand. You are then meant to use the Barbie spoon to gather the goods and spoon it into the tube. And not all from the same area!!! As if the whole exercise is not smelly and vomity enough already. And then some poor sucker gets to take it back out of the tube with a Barbie spoon and test it. Who has the worse job??? No pun intended…

But I soldiered on and the results came back. My E coli and Pathogenic bacterial species are reduced or non existent. What this actually means God alone knows. I am guessing its not desirable. So I now have to take olive leaf capsules and Solgars super extra probiotics. And something called ecoli prep. I am a bit confused though as I thought ecoli were a bad thing but evidently they are good too? Ecoli prep comes frozen in a large test tube. They have given me 8 tubes and each last just over a week. AND it looks like it might be sperm and used for artificial insemination AND it tastes about as pleasant as collecting fecal matter.

HOWEVER I will do what I have to do in order to find an answer to the mystery that is CFS.

I will charter new and before unexplored areas of science in order to find the cure.

AND I will endeavour to swallow my medicine with a “spoonful of sugar” as suggested by Mary Poppins!