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 ...
Post a Comment

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 like getting to know people, but I was flagging by the end. The room was loud meaning everyone had to use raised voices. Being ‘on’ is exhausting, but one good thing is that everyone understands if you’re quiet or not engaging. 


We still have our guest staying with us and I’m worn out from being woken up early with people moving about the house, I’ve never been a morning person. Time for a nap!

Thanks for reading. 
That ME Girl 

Labels:

Comments

Post a Comment

Popular posts from this blog

My appointment with an M.E. nurse specialist

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...
Post a Comment
Read more

Posted Missing

I have backed away from social media recently because my health hasn't been great; I've been mostly bedbound since Wednesday.  You know what I miss when I'm stuck in bed... the little birds in the garden. Over the summer I started watching them and learning things about them. Since then, I have seen quite a variety of birds coming to the garden to enjoy the food and shelter we provide, we even saw little chicks playing and bugging their parents for more food.  There are about 30 house sparrows which seem to live in the bushes, they are the most vocal and demanding of food. They love chirping and cheeping and being generally noisy. When their young fledged I often saw them flapping their new little wings and squeaking wanting to be fed.  They eat from a mixture of hanging feeders and ground feeders. Different species have different preferences on how they like to be fed, for example blackbirds won't (or very rarely) use hanging feeders or anything too h...
Post a Comment
Read more

M.E. awareness week and Millions Missing

As this years M.E. awareness week comes to a close, I feel quite sad to be taking off my 'M.E. awareness week' t-shirt. I have been proud to walk around this week trying to raise awareness: I may have been a bit shaky on my feet at times, but at least I was on my feet, which sadly not everyone with M.E. can do. Just a year ago, Denys and I were at an outdoor event and my health was very bad. I was unable to walk, I was using my walking stick to literally hold myself up until I collapsed on the grass and sobbed. I had to rest for several hours before I could eventually pull myself up and begin the slow shuffle back to the car. He said that we might need to get me a wheelchair, and although I had been thinking the same thing for a month or two, I broke down and cried.  Here I am a year later, most days I can walk without my walking stick, and for this reason, I have been proud to walk  with my M.E. t-shirt on. Last year I was unable to do anything significant for Mi...
Post a Comment
Read more