M.E and Me

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 ...

The follow up with my neurologist went ok. I didn't come away with anything too helpful, but that's what I expected. I enquired about low-dose Naltroxone (LDN), which isn't available on the NHS in the UK, and he said this is as a result of no real research being done to look into its benefits for those with chronic illnesses. He felt like it could work more as a placebo for those who take it regularly. As I haven't read much research on it I remain open minded, and a placebo that helps is better than something that doesn't.  I'm aware of a pharmacy in Glasgow that employs doctors who are able to prescribe it via a private prescription after having a telephone consultation, but I don't think I will pursue this at the moment.  He referred me to a psychology team last year, which I'm guessing was for CBT (cognitive behavioural therapy), but they thought it was best that I see Keith, the ME nurse specialist, instead of them. CBT for the treatmen...

I have been looking forward to today all week, but once again ME ruins the party.  I woke up in pain and felt weak and shaky, I hoped it would ease off, instead it's just getting worse. We were supposed to be having a lunch date and then I would do some shopping, but when we got in the car I realised I wasn't going to feel better and so there was no point going out.  It feels as though my skeleton is shaking on the inside, and like I'm going to pass out or fall over with weakness. I spent an hour doing my hair and makeup just for it to go to waste. I don't often have the strength to put on makeup and go out so it was a big deal to me, but this cruel illness has taken the day away from me. It could have picked any other day this week to show up, any other day when I was already at home with no plans, but it chose today. Since becoming unwell, I have found myself wishing more and more days away, hoping for a good day, but with the good days come the bad days, ...

I have finally had some positive appointments come through.  I was put on a waiting list at the start of 2018 to see Keith, the local M.E nurse specialist (incidentally, the only M.E specialist in Scotland) and today I finally got an appointment for the start of February. There are several hundred people living with M.E in this area of Scotland known as Fife, and so anyone who knows and understands M.E is going to be in high demand, hence the year long waiting list.  I'm part of a local M.E group for Fife, and as a group, some of us have met Keith, and his manager, to discuss the service and how it can be improved. The main problem is how in demand his services are, and we need more specialists to cope with it, but where does the money to do this come from? I also have a follow up appointment with my neurologist on Monday. The last time we saw him was December 2017, when I received my diagnosis. He wanted to discharge me, but we insisted on a follow up appoint...