Sunday, 9 November 2014
Guest blog from James a 'moderate' ME sufferer
Well, where do I start?
I've had M.E. for over 20 years (I'm 35). I got the flu over Christmas during my first year at Secondary School. Over the next few months I was on/off at School. I was diagnosed pretty quickly due to having a great GP who was always keeping up with the latest in medical things (pretty amazing back in the early 90s!).
During the first few years of my illness I was pretty much bed bound and so missed most of my Secondary education. I don't have any GCSEs or A Levels, but that hasn't stopped me running my own successful business for nearly 15 years! (I have got a GNVQ Advanced in IT - a two year local college course which took me four years to complete!)
My M.E. has been fairly consistent for the last ten or so years and I'd class it as 'moderate'. It effects every aspect of my life. My main symptom is extreme fatigue. I also suffer from brain fog and when I'm tired I also sometimes get right side muscle spasms/twitches (random and uncontrollable movements of my right arm and leg and neck - which can throw my head around). I've punched walls, kicked things which it's really not a good idea to kick and have thrown a few things around! (I'm left handed but use a mouse with my right hand - a few mice have died...) My fab oust thinks it might be some sort of nervous 'feedback loop' due to my silly M.E. body.
I've also got some food intolerances: yeast, nightshade (potatoes, tomatoes, peppers, aubergines, etc.) and dairy proteins. So this means no chips, pizza or alcohol!!!! I also seem to have extra acidic hands. I strip the paint/varnish off door frames and chair arms with which I'm in regular contact. (I asked my current GP about this and he suggested that I googled 'human paint stripper'!!!)
I live, with my parents, in the (sometimes!) sunny seaside town of Minehead. I work from home as a freelance web designer/developer (http://jpc-design.com). This keeps me pretty busy and I've got clients all over the world. I also run one of the biggest Christmas Information sites on the web (http://www.whychristmas.com) - it had over 6.7 million pageloads in December 2013 and looks like it will be busier this year :) So if you need know anything about Christmas - please check it out!!! I've got some great and understanding clients, as getting my work done can sometimes take longer than I'd like it to.
I don't get out of the house much (in the first few months of 2014 I could count them easily one hand). I've got a mobility scooter to help me zip around the town when I'm well enough to go out - a young guy on one does get some strange looks... Going out often leaves me exhausted for the rest of that day and a couple (or few) after as well.
I play the ukulele (I've got four..!) and the mandolin and am a member of a worship group at my Church (where I'm also the church 'tech guy'!). I love all kinds of music from classical to heavy rock via bluegrass and have about 450 Christmas albums in my iTunes collection as well ;) I'm also a total geek and Apple fan boy. I love anything with buttons to push! I've made some great M.E. friends via the web and especially Twitter. The internet truly is a lifeline for me.
I love watching sci-fi (hurrah for Netflix) and am a fan of 'unusual' sports. My favourites are American Football (go the Oakland Raiders and the Clemson Tigers), Cycling, Ski Jumping and Biathlon (cross country skiing and shooting - sounds strange but it's brilliant to watch!).
So that's me. Thanks for Foggy for letting me tell my story. I'll see you on the web!