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By Disabled People for Disabled People

Saturday, 12 May, 2018

Disability Today’s Volunteer Dee gives insight to being diagnosed and living with ME

PERSONAL STORY: 12th May 2018 is international awareness day for chronic immunological and neurological diseases and we have a very special post to share. We have our first personal story from one of our wonderful volunteers for Disability Today, Dee, who has M.E. Please have a read through her incredible story below…

I was a silent sufferer of something quite extraordinary, it was called “Yuppy flu” in my younger days and I remember the press commenting that it was a lazy person that stayed in bed all day having all the Blood tests, and other medical checks the Medical profession could throw at you with nothing to show for it. After my first born child, my husband Chris called out the Doctor late one night because I could not even get off the sofa. She came to see me, it was 39 years ago but she put it down to “Seeking attention” even though I had to pee in a bucket in front of her, as I was totally overcome by malaise. Perplexed all my life by episodes of extreme weariness and unable to get up and do absolutely nothing at times when bringing up my three children, I struggled on having these episodes, severe migraine’s, low energy, unable to walk, talk or feed myself when my body just seemed to shut down.

By 2013 they had got so severe I was becoming a “problem” with my Doctor. I had several tests and nothing showed up other than low Vitamin D. Then I heard of ME, I went on the Internet and there it was, in Black and White, most if not all of the symptoms I was suffering from were there. I begged my Doctor to refer me to the ME clinic in Sutton and was then referred to a specialist Dr. Bansil who told me that my lifestyle having had large amounts of Adrenaline flowing through me for several years was also one of the culprits. I was put on a 6 week programme, but you only get 2 years support then you are on your own. Having been on this programme I was now able to manage it better than before, slowing down and taking my time over things, and even managing to carry on Volunteering, doing my Archery which is my passion and it keeps me fit. I was chosen to go to Rio for their Olympic Games as a Volunteer and now I am proud to be volunteering for Disability Today. They do not look at M.E as a disability and took me on to help them with my skills as I have been unemployed for 5 years and no one wants to employ me.

There is life with M.E. you just have to pace yourself and there are plenty of us out here willing to support and encourage you to stay safe and get the sunshine!

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Categories :
  • Chronic Fatigue Syndrome me/cfs
  • Myalgic Encephalomyelitis ME/CFS
  • Personal Stories
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