I have been forced as such to restrict all my activites, as my levels of pain are intense, and my brain is struggling with any activity or movement. My weekly bath was accompanied with an eye mask.

We decided last week, that my excellent main carer, whom i know likes true stories, would get a lot from this book, both on the personal level, but also as it would help her to understand my fears, and my pain.

Its a brilliant illustration of the experience of many of us with ME. The mis management of the illness, the effect of this on human life, the day to day challenges of getting support, the fear and isolation of those with the illness..

[http://www.amazon.co.uk/gp/product/0091939143/ref=ox_sc_act_title_1?ie=UTF8&m=A3P5ROKL5A1OLE

There are an estimated 62′ 500 people with severe ME in the uk, receiving seriously inadequate health care ( chief medical officer cmo sir liam donaldson (department of health (dh) 2002a)

Quality of life tests indicate people with ME feel similar to people with aids..

Why is this so..

Well let me explain where i am at the moment.. Bed bound. Most days unable to feed myself, so have to be fed. Incontinent, so have to be changed and washed, which is degrading. Often left for hours wet, because there isnt funding for 24 hr care. Nor do suitable residential units exist.

Bowel movements are painful. I have no thermal regulation, my body switiching from over heating to icey cold in minutes. Light burns my eyes, like gas flames.. My speech becomes rapid, then slurred then ends as my brain turns off, and i am unable to speak again. My movements become paralyised, at the most inconvient of times, and i have no control over it.. I have constant tinitus.. These all just part of a normal day.. I have the constant muscle pain, the times i cant open my eyes, or feel my face, the numbness.. I have the times when i want to reach out, but i cant.. I get the twitching muscles, the weakness, the exhaustion.. The pain of movement or sound going through me, battling with the smells from outside, of neighbours flowers, how dare they have flowers in there gardens!… The washing powder, though husband makes his own, to help reduce my chemical sensitivity…

So what can we do…

Asha and i plan on doing this. We need a specialist unit in the uk. Please support this cause.. I need my life back.. We deserve the best there is.

A pdf sponsorship form is availible on this link http://www.thebigsleepforme.com/uploads/1/1/5/4/11541260/the_big_sleep_for_me_sponsor_form.pdf

Or you can donate via the team just giving site on

http://www.justgiving.com/thebigsleepforme

Any amount will help. Thankyou

Life can be very degrading at times…

http://www.nightingale.ca/index.php?target=bookoffer accessed 15th april 2012

The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

Edited by Byron Hyde, M.D. – Nightingale Research Foundation, Ottawa, Canada with editorial and conceptual advice from Paul Levine, M.D., NIH, Bethesda, Maryland, USA and Jay Goldstein, M.D., Chronic Fatigue Syndrome Institute, USA, 1992

Published by Nightingale Research Foundation simultaneously in Canada and the USA, 1992

http://www.25megroup.org/fundraising_cardsFor_sale.html

voices from the shadows

So why has today been so hectic? Well i finally fell asleep at gone half 6 this morning, having had massive sickness and body temp fluctuations in the night. My carer came and changed me this morning, and my prescription is still in the back of the pharmacy van, which has broken down.. This is essential medication! After over 12 months of asking, were finally getting medical waste bags, which means, our wheelie bin wont be full of my continence pads any more, yes i am double y incontinent due to ME . My gp took away with him a copy of ‘ voices from the shadows’ on tuesday, its an excellent video on the true impact of severe ME on human life. We got a phone call to say friends are coming to visit. I can normally only manage a short visit, and when people live so far away..its hard to ask them to visit. It really does me good when they come though, and asha loves the company.

Asha has had a tough two years, but she has coped very well, thanks to having a brilliant father, us having a few very good friends, and a home edd group who have constantly offered her support and a safe place to play. She is involved with the young carers now, and on saturday, is looking forwards to a trip to the zoo. On tuesday she starts her manderin lessons. And this friday is off to visit some friends with steve. She has played at home for a lot of the last two years, but she is happy, and although at times, weve considered school or flexi school for her, she has flatly refused such ideas.

She has recently been delving through beanos, and harry potter videos, like a child possed, luckily for us, a large second hand dealer, has kept up our trade relationship, and weve managed to get hold of old beanos at a reasonable price to satisfy her hunger! She also went through a massive myths buster obsession and was fascinated by the victorian era for a while.