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CFS| Chronic Fatigue Syndrome

ASS aka anger and sadness

Posted by amber | My Diary | Posted on September 28th, 2010

I have totally been mentally out of circulation this last week. I didn’t have a shocking week I was just very, very angry and very, very sad. According to my husband defcon 3 was reached this weekend.

I am angry that I have this god damn awful CFS

I am angry that I cant have my old life back

I am angry because I don’t deserve to suffer like this

I am angry because my friends (not all) don’t understand what living with CFS is like

I am angry that I cant exercise and just walking exhausts me

I am angry that there isn’t a cure

I am angry that my cat died

I am angry that I cant change this state I am in

And I am sad about the same things

I am sad that I have this god damn awful CFS

I am sad that I cant have my old life back

I am sad because I don’t deserve to suffer like this

I am sad because my friends (not all) don’t understand what living with CFS is like

I am sad because I cant exercise and just walking exhausts me

I am sad that there isn’t a cure

I am sad that my cat died

I am sad that I cant change this state I am in

AND THIS MAKES ME SAD AND ANGRY…

and very, very tired……….

If there is a way

Posted by amber | My Diary | Posted on September 20th, 2010

As good as it gets

Posted by amber | My Diary | Posted on September 18th, 2010

Wednesday was a shocker and on Thursday I woke feeling no better. I lay there bemoaning my fate and cursing CF. Plus I had to go to my job!@#$$%

I was thinking about looking at life with the ‘glass half full’ approach.

How do people with CF carry on?

How do they manage after 2, 5, 10 years or more, still believe that out there, somewhere is the cure, or that one day they will wake up and feel like there old selves?

Does CF only happen to people who have a positive outlook?

Though, as an aside there is medical proof that people with higher pain thresholds suffer with CF – check out From fatigued to fabulous.

I mean I constantly try new remedies, new doctors, new tests, truly believing that one of them will work. Yet I won’t paraglide for fear of falling and I won’t learn to scuba dive because I have a fear of open spaces. Clearly there is a paradox somewhere in me. Maybe CF creates a split personality? The one side is optimistic Annie, always believing that her illness will one day up and disappear; and that tomorrow will be a better day; and that THIS tablet WILL work. And there is the ‘half glass empty’ personality, pessimistic Pat. She cries a lot, imagining a life trapped in this hellish web; going days on end feeling ill with no glimmer of hope; believing that she hasn’t the strength to continue with this life.

And this all made me think of the movie “As good as it gets”. Here you meet three characters all suffering in a certain way. Initially they are almost repulsed by each other as each relationship that could be between these characters is fraught with problems. However in the end the ‘half glass full’ mentality rules the day and they learn to live with each other and there idiosyncrasies.

So is the lesson that we are 2 spilt personalities but in the end the best “man” wins????

Or that we should embrace our difference?

Or that we should fight and never give up, tirelessly searching for the cure?

I truly don’t know.

Juggling Balls and Carrying Elephants

Posted by amber | My Diary | Posted on September 15th, 2010

This piece is dedicated to Zarla (check her blog on Carrying Elephants!). She is having a tough time and all of us who suffer from CFS know what that means. I think we all want to be ‘normal’ and have our old lives back. It such a distant memory and a bitter sweet one at that to. Today I feel like Zarla. The problem being the elephant is just lying on me – see her blog if totally confused. I feel overwhelmed with sadness. And if screaming really loudly helped I would.  This is not a life and no amount of saying otherwise will take that fact away. At best, which last a day, maybe two, you are at 50-60% . Whats that??????????? That’s like having a car and no petrol, or a house with no roof. USELESS.

Anyway I also discovered a new blog today called Happy Panda.  A very cool blog to and she refers to The Spoon Theory. Read this to get an idea of what CFS feels like, even though this article relates to Lupus.

And lets hope tomorrow shines on us, with new found optimism and increased energy!!!!!!!!!!!!!!

And the Good news is …..

Posted by amber | My Diary | Posted on September 12th, 2010

Well i am 40… I am thinking that with CF I turned 40 two years ago when it started. I believe the age clock suddenly sped up right to 40 and beyond.

But I had a wonderful celebration and awoke to a huge banner and a gorgeous statue of a girl on a rock by my favourite sculptor, Anton Momberg. I was thoroughly spoilt with fabulous gifts; ate loads of yummy cake and had the most perfect summers day in Cape Town. Even did a mini walk along Camps Bay beach.

I do so wish that I was celebrating today without CF. Its like having an unwanted relation come visit and stay forever. You didn’t want them in the first place and then to make matters worse they decided not to leave!!!

As they say, “The good news is you wont die from this and the bad news is, you wont die from this” It kind of  applies to turning 40 and CF!!! I remember very clearly when I first sensed something was very wrong with me. I was in a taxi with my brother (who lives in London) on the way to the airport in London. I just felt gradually worse and worse – short of breath, heart palpitations, dizzy, nausea, exhausted beyond belief. I think I was having a panic attack at that stage too. My brother became extremely alarmed and I insisted that we go straight to the hospital as I was sure I was about to die! We staggered into ‘Emergency’, partly because I felt like hell and partly because we were dragging my ridiculously large suitcases. I was ushered into a cubicle with my brother holding me up. They must have assumed he was my husband or partner because after I explained my symptoms the nurse piped up with, “Oh, you must be pregnant!” There was no room for denials as she whipped me off to perform the tests. She no doubt had experienced these mini dramas many a time in her jaded career. Anyway we went home , not diagnosed but sure I was about to pop off.

Anyway 2 years down the line and many doctors later I now know what was wrong. But the story hasn’t changed much. This time …”The good news is we have diagnosed your illness, the bad news is there is no cure.”

And the same can be said for turning 40!@#$%^&

Tiger Stripes

Posted by amber | Portfolio | Posted on September 9th, 2010

Is there anything more gorgeous then a tiger. This is Sarah and she lives in Thailand, sadly in a cage and is used as a photo prop.

Shark Cage Diving

Posted by amber | Portfolio | Posted on September 9th, 2010

Here’s something I never thought I would do and loved it!!!!!!!!!!!! Scary, exciting, breathtaking, unbelievable… the Great White.

Life just doesnt play fair!

Posted by amber | My Diary | Posted on September 8th, 2010

Today has nothing to do with chronic fatigue, just loss. Yesterday we lost one of our 2 cats. Her name was Tiger but became Flea because she was this mad bundle of energy. She was up trees, on counter tops; sprinting up and down our passage. She also snored and was a bulimic, yes this is possible in cats too I am sure! She loved sitting in the basin in our bathroom waiting for us to turn the tap on for water. She would sometimes jump up on my husbands chest and groom him. In the mornings she would climb under the duvet with me and fall fast asleep, whilst I had my breakfast. Sunday mornings when reading our newspaper she would find nothing more entertaining then stretching herself across the section you were busy with. Flea was amazing with our 3 Rottweilers and she would wind her way between there legs and let them lick her head as a treat. She was so very much part of our lives and our child.

And life just doesnt play fair. When I think of all the people that abuse animals; shoot at them; torture them; throw them away; or even worse have them as pets but see them as ornaments … I just cant comprehend why we should have to loose one that we love.

The Pain Super Highway

Posted by amber | My Diary | Posted on September 5th, 2010

I awoke this past Monday morning with a sore throat, ear ache, sore body and chest pain. I know I over did it a bit on Wednesday but I didn’t think this was the result. Diagnoses = tonsillitis, water on the ear; stay in bed at least till Thursday; anti-biotics; pain killers, etc. Plus I stopped my cortisone a week ago, which was working so well. The result = major headache and neck pain. I could have easily gouged out an eye or drilled a hole in my skull to end the pain!!!! Where did all this come from? Via the ‘Pain Super Highway’. Huh?????

My physio explained it to me as follows … Just over 2 years ago I slipped a disc in my neck (C5-C6) and this resulted in months of pain in the area of my neck and referred pain to my shoulder, arm, etc. When ones body has a particular injured area, a high traffic/pain area, ones body needs to accommodate this extra activity. So in order to properly heal the injured area it ‘builds’ a pain super highway to the specific location. This is necessary and obviously beneficial. But once one gets better your body doesn’t automatically reroute the traffic and make the highway smaller or close it. The result, pain experienced elsewhere still manifests in my neck/shoulder area. And now I have to go about speaking to my body (I literally mean “speak to my body) to teach it that my neck is better and other parts of my body need more attention. So basically just like when you want a road changed in your neighbourhood; a pedestrian crossing or speed bumps put in, you have to go to the authorities and speak to them. And not once or twice, but many, many times.

And this is where I find myself. Feeling crappy and talking to myself. Call in the medics this one is loosing the plot!!!!!!!!!!!!!!!!!!!!!!



Lions Head

Posted by amber | Portfolio | Posted on September 1st, 2010

The view from my balcony of Lions Head. I used to be able to climb this and run back donw! Those were the days.