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

What??

What are you on about?

The last two days have been challenging cognitively, trying to do something that should be straightforward and easy has proven to be otherwise. All I wanted to do was to get a better phone contract as my iPhone has a faulty battery and I’m sick of Apple, the system takes up over half of the storage on my iPhone and iPad, so I wanted to make a switch to Android, but it was so difficult to do. 

I’m not good at being assertive or haggling for a deal, which is something Denys is good at, he got £8 off my previous contract. This time was different and EE made it incredibly difficult, it meant I spent an hour in a phone shop trying to figure out what had happened and understand why I couldn’t walk away with my new phone. There was a lot of jargon and very confusing suggestions and directions which made my brain hurt. I really struggled to follow what was happening and to make the decision that felt right. Thankfully, the lady helping me was more than willing to go over it again and again until I understood. I came away empty handed, with a headache and a whole load of instructions. 

We went back the following day and we managed to get things sorted out and I came away with a better deal and £10 for all the trouble. 

I have been on the verge of sensory overload for the last few days, I gave in today and went to bed to decompress and nap and it really helped. I think I’ll spend the next few days getting to know my way around my new phone and resting mentally, as well as physically. 

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