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Who am I?

Hey there, welcome to my blog. My name is Sian, I’m 28, I live in Scotland and I have a chronic illness called M.E.  What is M.E.? M.E stands for myalgic encephalomyelitis. It is also known as chronic fatigue syndrome (CFS).  How long have I had ME?  I developed M.E 2 years ago at the start of September. I was about to start college to study beauty therapy and the day before I had a headache. Ok, no big deal, everyone has headaches. By the evening it had developed into a migraine (you know, when you can’t stand the light, or sounds, and you feel like you’re going to throw up). I didn’t think too much of it and hoped it would be gone by the morning. Well, it didn’t go. In fact, I had that same migraine constantly for 6 months straight.  What did you do?  I got on with it. I started college the next day, and I attended every day I was supposed to until I couldn’t handle it anymore, which was Christmas 2016.  What ...
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How I got on with my neurologist

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 treatment of ME is a bit controversial and a sore subject for many, maybe I will try it and see somewhere down the line.  

I asked about complimentary therapies, and in his opinion, acupuncture could be the best one to try as there has been more research into it and how it affects the body. As my pain levels are relatively low at the moment, I'll add this to the list of things to try in the future. 

I had a few bad days recently, but Wednesday was a very good day so I made the most of it. I had an appointment and then went shopping and out for dinner with Denys. It felt nice to have a positive day, I really needed it. I spent yesterday mostly recovering from it, I teetered on the edge of overload all day and went to and from bed. Today was better and we managed to get out for a drive, and we helped a man out as his motorbike battery had gone flat. 



My sleep has improved, I'm not sure what the cause is, but I have been back on Melatonin and it seems to be working. I have cycled through the various sleeping tablets for many years, each one working for a period of time until the effects wear off. It is recommended that you take it 30-60 minutes before bedtime but my body is very slow so I have it about 2 hours before I plan to go to bed and it's now rare that I see beyond midnight, whereas before I was often still awake at 3am. Do you take, or do, anything to help you get to sleep? 

Thanks for reading. 
That ME Girl 
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