M.E and Me

Today I had my second appointment with Keith, the ME nurse. He is the only ME specialist in Scotland, so I am very grateful to be treated by him.  My health has been hit and miss recently, I have been having a lot of dizziness with no obvious cause. I usually have it as part of a migraine, but this isn't the case at the moment. It seems to occur when I go from laying down or sitting into a standing position. Sometimes it's instantaneous, other times it can be delayed by about five minutes. This was one of the things I wanted to speak to Keith about today. He had several questions about symptoms to go through first; he asked me about muscle spasms and jerking, if I have any pain and if I have any food or smell sensitivities or intolerances, along with some other questions.  We got to a part about dizziness and nausea, so I told him about what has been happening and it currently being a very prominent symptom. I have been keeping an eye on my heart rate when it...

Denys and I have been quite busy recently with my birthday, and we had two sets of family come up for a visit, which means there hasn't been a lot of time to relax.  I'm a social person, but that has become harder since developing M.E. as it wipes me out much faster than before. With illnesses like M.E. you have to find your new limits in terms of socialising and pushing your body; it's not just about learning to live with pain everyday, or what you can and can't do physically anymore, even things like sitting in a room with someone and talking uses up more energy than before. Then there's also the added factor that what uses up more energy one day, is different the next, it is so changeable and those limits fluctuate.  Pacing   If you have a chronic illness like M.E., you'll more than likely be aware of 'pacing', or will have at least read about it somewhere. The idea is that by adapting and making small changes in everyday life, you wi...

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, ...

It has been the Big Garden Birdwatch over the last few days .  It is carried out by the UK charity and organisation, the RSPB (Royal Society for the Protection of Birds) on an annual basis. They ask people to spend one hour documenting how many birds of certain species come into your garden at any one time. It is so they can keep a record of bird numbers and they use the data provided by the public to watch for any bird declines. I believe this was the 40th year of the birdwatch taking place.  I have talked about the birds in our garden before. If you'd have asked me this time last year if I was interested in birds or could single out a certain bird call and what it means, I would have stared blankly at you. I never imagined I would get into birdwatching, but having time on my hands and noticing them living out their lives suddenly became interesting to me. Now I'm able to identify many different species, I know when a blackbird or robin is in distress or scared ...