M.E and Me

It doesn't make any sense that I've had a really busy few days (even weeks), yet my sleep is worse - how is that possible?   It's now coming up to 5am on Thursday morning and I haven't had a wink of sleep all night. I can barely keep my eyes open during the day, especially over the last two pretty busy weeks, and then at night I can't sleep. It hasn't been this bad for a while though, it's rare I don't sleep at all. It means I'm faced with the dilemma of just staying up and going to spend the last day with Denys and his family, or I stay at home feeling sorry for myself and try to sleep. There's not really a win-win here. 

I had a really good birthday, and I was spoilt rotten.  My dad flew up from East Midlands airport for a few days which was nice, and my health was good, too.  By the time I had woken up, it was already better than last year. That birthday wasn't brilliant; we had driven down to see my family and stayed with my sister for a week, but two days before my birthday I was sick multiple times with no obvious cause. It didn't seem to be as a result of food poisoning or a bug as everyone else was unaffected. It took  days for me to be able to start eating again as I was left with an intense pain in my upper abdomen, which completely shut down my appetite. I still experience this pain, but thankfully in shorter bursts. I had blood tests, scans and a gastroscopy, but they have so far been unable to explain why I have pain. My birthday this year was much better, and continued to be all day. Denys's parents came over at lunchtime and I opened my presents. Later in the eve...

Keith is the only M.E. specialist in Scotland, and I am lucky to be within his catchment area of Fife, where there are estimated to be about 300 people living with M.E., so he is severely stretched.  Denys and I met him last year as my local M.E. Facebook group are involved in promoting his service and campaigning for more specialists to join. I was referred to Keith in December 2017, and yesterday I finally saw him. It turns out my neurologist sent the referral to the wrong place so it floated around the system for a while.  The appointment was more a get to know you session, he asked whether I have suffered from illnesses like TB, glandular fever or Lyme disease, as these can sometimes trigger an intense immune response and can lead to someone developing conditions like M.E., but I don't seem to have had any to have any of these triggers. He asked about family health and whether anyone suffers from an autoimmune illness as there is evidence to suggest this co...

They were amazing!  We had such a fantastic day, everything was perfect. Getting to Glasgow was easy, we got booked in for dinner in a lovely Italian restaurant which we have been to before, we ate by candlelight and my M.E. behaved almost all day.  We were able to walk straight into the Hydro arena with no queuing, which was great. I had already emailed them to ask about disabled access to avoid standing still for long periods, but it wasn't a problem in the end. We always buy t-shirts and put them on before the concert starts, and we did that again this time.  There were two warm up acts, first it was Roe, a 19 year old musician with Ed Sheeran's style of performing, she did all the music herself, and she had a great voice. Following her was Kodaline who were also great, it looks like their music is in a lot of programmes so there's a chance you've heard them.  Snow Patrol kicked off with Take Back The City, followed by Crack The Shutters, ...