Wednesday, 7 October 2009

a year scince diagnosis

i cant believe its a year since i was diagnosed with M.E and Fibromyalgia that also means thats its 16 months since i last worked and 20 months since i managed a full week at work!!

i can believe how long i have been ill for with no sing of improvement at all.

when i sit and think about it i wonder if i have had M.E a lot longer than we first thought and that the so called viral onset in march 2008 was just the start of the exacerbation, i have always needed more sleep than most peeps and even when i was well!! i was in bed by 9.30 most nights and up by 7am i have ibs all my adult life as well as constant sore throats and aches and pains, i have never felt completely well since they diagnosed asthma when i was 21 i have had frequent respiratory infections that have put me in hospital, i had my tonsils out and then got glandular fever so that could have been the precursor to this all but i will never know.

in the last year i have had to go through a complete life change, i am no longer independent, and have become reliant on others to take me out of visit as i can no longer drive as it not only exhausts me my sense of spatial awareness has just disappeared i cant even navigate me through my own house with out bumping into things. i am no longer an active participant in the family working and helping with the house it take me all my time to prepare a meal or dust, no more quick blitz for me simple things take a long time.

i used to spend my days surrounded by adults and children with lots of activity now i see no one other than my dog or the occasional neighbor and my family, how did this happen?

im sure my family look at me and think when will she sort herself out and get back on her feet the problem is i dont have an answer and neither does any one else. the medical profession ignore me do i get checkups like my hubby who diabetes? no! im left to it told they can do nothing but teach me how to live with it and hope, they treat the symptoms but only the ones that they think they should.

the sad thing is that im not sure that the person i used to be is here anymore i sometime feel as though all i am now is the M.E and that i have just disappeared behind a list of symptoms.

at 41 i did not expect my house to contain a stair lift, bath seats so i can get in and out have grab handles next to the loo so i can be independent and most of all that lovely thing a raised loo seat. i did not expect to be choosing a mobility scooter as my mode of transport instead of that dreamed of car. i see friends struggle to accept the equipment they see me use to get about i watch my dads face crumble as i struggle up his drive on crutches, i see the tears behind my husbands eyes as he watches me struggle to get in an out of my chair.

i didnt ask for this its not a choice any one in there right mind would make so why do we get treated like we are spongers and lazy by the dwp, why are they trying to take the benefits away that make it possible for me to have the equipment that makes my life better, why are we the disabled and ill the first to be punished financially. why do those if us with M.E have to fight for DLA as iff being ill is not enough of a problem, why are we being found fit for work under the new rules for ESA when our work places are dismissing us due to ill health and our consultants and GPs are telling us that we are not fit for work. i would love some answers to these questions so if you have any please leave a comment.

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