Although I’ve had Myalgic Encephalomyelitis (M.E.) since 1994 I initially chose not to include it in this blog. To be honest there is nothing I don’t know about M.E. and, after all these years, I was kind’ve all M.E.d-out. I don’t keep up with M.E. research, simply because I’ve heard it all before and it usually comes to nothing. I figure if a cure is found for M.E. it will be on the 6 o’clock news not some obscure internet site. I also don’t get involved in activism or the politics of M.E. It’s an extremely contentious area which I found very early on simply stressed me out and made my blood boil. That isn’t good for my health so I’ve always left well alone. I am, however, eternally grateful to those dedicated souls who pursue activism on my behalf and on behalf of M.E. sufferers worldwide. What I do do is volunteer my time to the 25% ME Group, a charity based in the UK which supports the 25% of people with M.E. who are largely bedridden and severely affected. I have been a Committee Member since 2000 and am very proud to be associated with the only charity in the world to solely support severely affected patients who are, due to their extreme symptoms, totally ignored and invisible.
I have, however, been astounded at the amount of people with EDS and/or mast cell issues who also have a diagnosis of M.E., including all the members of this blog’s UK Support Group. Consequently I’m now going to include M.E. in my postings, and have put up a new page on my Journey with M.E. As you can imagine, after 20 years I could probably write a novel on my experiences so have had to condense this into a single page, but at least you’ll have a brief outline of how I came to be living with M.E..
Changing the subject entirely, if you’re stuck for a gift for Christmas I can highly recommend a pillow I bought earlier on in the year. Due to my EDS I used to find bed uncomfortable and longed for more support for my body during sleep. I’ve found it in the form of a huge maternity pillow which I absolutely love. I can squish it right round me, it’s thick enough to rest my legs on which stops my hips from rolling forwards, it supports my back when I lie on my side, and I honestly feel I sleep more soundly and don’t wake as stiff or in as much pain as I used to. The only downside is that it takes up most of the bed, but as I have a king size and sleep alone it’s not an issue for me personally. The dog also thinks it’s really comfy and I often get to bed to find him curled up right in the middle with no intention of moving 😉
Carrying on the Christmas theme, I indulged in a wickedly naughty sweet treat this week in the form of Peppermint & Carob Creams. They are pure sugar, not in any way healthy, but are flippin scrummy (I remember making these in infant school when I was about 6 as treats for Easter!). Details on the recipe page and scroll down.