Wednesday, 16 September 2009

My Story

18 months ago I was a have it all Mum. I had a full time job working in a local primary school, two fantastic kids, a great husband, I was studying for a degree in Education and was well on my way to becoming a teacher. I was busy every weekend with friends and family seemingly having a the time of life I was due to turn 40 and was looking forward to it as life just seemed to be getting better!!

Fool I here you cry no body can work full time keep house and study for a degree. You are right there was payback for burning the candle at both ends but never in my darkest dreams did I expect to be where i am today.

As normal when working with young children infections are par for the course so getting flue in march 2008 did not seem such a disaster but more part of the job so to speak. I felt awful headache, stiff joints, sore throat and high temperature this laster for a week so i thought i would go back to work. (mistake number 1)
still reeling from the flue I struggled into work (why is it you never get any thanks for this!), then within the fortnight i developed laryngitis and was off work again this time the GP signed me off for 10 days telling me that if my voice had not returned in that time i needed to go back. 10 days came and went still no voice and feeling worse by the day.

being a Mum i have a healthy sense of guilt so returned to work minus voice and struggled on i became miserable and fed up with every thing i felt so ill but could not put a finger on why. My attendance at work became sporadic and i was called in for back to work interview to see if they could help me! thats was a a laugh i couldn't even help myself. i seemed to be at the GP every week by the endof the term in july i still had not got my voice back it had been 4 months now and i was waiting to see a specialist for some investigations all the blood tests kept coming back with low calcium and raised liver function tests but they could not find a reason so i was refered to a general surgeon at the hospital that was the first time the word M.E/CFS was mentioned and he said you need to change your life and don't expect for things to improve for a number of years. **** Panic*****

i went back to my GP he felt that the 7 week summer break should help me to recover if i rested so taking his advice i did that. recover no get worse yes, i had a camera stuck down my throat to see why i still had no voice in august to be told it was due to muscle weakness and recommended speech therapy!

then in September all hell broke loose i had been at work less than a week when in a routine breast check they found 2 lumps life went on hold within three weeks i had mammogram biopsy and the lumps removed they were benign but quite large. at his point i suddenly take a nose dive and become so ill that i cant even drive without ending up collapsed in a heap, and i'm signed off work with CFS for 2 months work are not impressed, uni start asking for permission from my place of work for me to continue to study and from my GP.

in October 2008 i see DR O'Riely at the local M.E/CFS clinic and am informed that i have classic acute onset M.E and Fibromyalgia. I go home in a daze sot of glad that im not going mad but scared of what it will mean to my future is this the end of my life!!

the Muscle weakness in my legs becomes so pronounced by December that the GP refers me for more tests and an emergency consultation with a neurologist who also confirms that it classic M.E.

im now having to use crutches to mobalise and am crawling up the stairs with help from my husband each night and feel like a small child as my bedtime is now at 6.30pm as im so tired any later and i would not make it up the stairs at all. i can no longer manage to walk around the supper market and work is becoming that thing that i might go back to in the future. By the end of January 2009 i have to make a decision that for me will change how i see me. i need either a mobility scooter or a wheelchair so that i can leave the house.

By easter 2009 i have stopped saying ill go back to work next term and have started a pacing class run by the local M.E/CFS clinic i meet the first people with M.E since i became ill and come home and cry they are all mobile and some are even managing to work.

in July of 2009 work decide that i am unlike tobe able to return and Occupational health have concurred so the decision is made that im to be terminated. Now the real fun starts as we have to navigate the benefits system which seem to have its own rules and regulations and i find out that M.E on its own is not a bigh enough problem for a Blue badge! have they seen me walk!

well this brings me nearly up to today!

so my story continues ......

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