Skip to main content

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 ...

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 happened next? 

I was in a lot of pain everyday, if you’ve ever had a migraine you will know what I’m on about. I had to wear sunglasses most of the time because the tube lighting was too harsh for my oversensitive eyes. It hurt so much. I was constantly popping co-codamol (the strong ones only available on prescription) and I sometimes even wore earplugs to block some of the noise out. I was fatigued, I was sleeping ok but it wasn’t refreshing sleep, I felt like I’d be dreaming all night and running at the same time. I was always tired (I’ve always needed a lot of sleep, it’s just the way I’m wired, but this was beyond my normal tiredness levels). 

I was managing to study and keep on top of any homework that needed doing. I was only in college 3 days a week, which is classed as full time, but you had to study the other days. I was doing well at performing treatments, I particularly enjoyed performing facials and massages. I liked connecting with people on a very personal, skin to skin level. I liked to feel I was making a difference with my hands - plus my hands were always warm, thanks to giving up smoking the year before. I had the warmest hands out of my class (a facial just isn’t as relaxing with ice blocks rubbing your face, ha ha). 

I loved what I was doing, I loved the other girls and I loved doing something with my time, and brain. I picked up the human anatomy very quickly (I have worked as a medical secretary in the past and medical stuff just sinks in easily for me). 

As it got towards Christmas I had to have one or two days off as I was beyond tired and in so much pain with my head and eyes. I had to make the very sad decision to leave college by January 2017 as I was making myself feel very unwell and I started to realise that I was sick, not a general I-have-a-cold sick, but really sick. And so I withdrew myself from the course with the promise to stay in touch with my classmates, but sadly I have never seen or spoken to any of them again. 

I will leave it there, I feel like this is a good introduction to me, to my first ever blog and it’s time for me to try and sleep (it was 4am this morning when I finally managed to get to sleep, let’s hope it’s not a repeat of that!). 

Thank you for reading. 
Speak soon!
That ME Girl


Comments

Popular posts from this blog

Meet up with the local ME group

I’m tired... Today I met up with some fellow ME’ers for lunch. There is a Facebook group for my local area for anyone affected by ME. I attended a lunch date once before months ago, but I haven’t been able to go again until today.  I was pretty nervous walking into the restaurant as I didn’t know any of the members who would be there, so Denys walked in with me and got me to the group. I’m not as shy as I used to be, but it’s a bit intimidating being one person sitting there compared to most of them being a couple, but I think I did ok.  I realised that I’m lucky, yes I have pain everyday, sometimes I need to use a walking stick and I can’t work, but I sat next to a lady who is mostly wheelchair bound and can hardly eat due to stomach issues, and I heard about a lady who has been unwell with ME since she was a child. My heart aches for them, I know I am fortunate that I can move around my house most days, I can eat and socialise in small bites.  I lik...

Stupid ME

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, ...

Dysphagia, Love CBD and Indica

I've recently had problems with swallowing; I can be eating or drinking and suddenly my body forgets how to swallow. I have been experiencing this late at night for a few months, but last week it leaked into the day, too. All three meals for two days were a real struggle. We use around fifty pairs of muscles and nerves to swallow, and it's mostly just an automatic thing, except for me it wasn't. I would try to initiate the swallow movement, but the food/drink wouldn't go down, and it would also block off my air supply, so I was unable to breathe. I would also not be able to swallow saliva. We went to see a GP as it was really distressing and I was becoming scared to eat, everytime I tried it would feel like my heart was in a vice, and that I was not going to be able to breathe again. I then started to have anxiety about eating or drinking anything, and I kept breaking down crying.  My GP has sent a referral to the upper GI (gastrointestinal) clinic...