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 ...
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 Millions Missing, so I wanted this year to be different.
What is Millions Missing?
ME Action started a global demonstration in 2016 called Millions Missing. The name symbolises the millions of people with M.E. who are missing out on everyday life around the world. They also created the hashtag #canyouseeMEnow which is printed on the back of my t-shirt.
It has been gathering momentum ever since. There are now over 100 cities around the world that are taking part. There were events happening all of this week, with key events being held today.
Denys and I went to a Millions Missing demonstration yesterday in Falkirk, Scotland. I only woke up with about 30% charge in me and I had dizziness attacks all day, and due to brain fog I only took one dose of medication in my bag, so it wasn't ideal, but we managed. The event went well; there were a lot of people walking around with red t-shirts on, handing out leaflets and information to passers-by. Denys and I hung around the small seating area and I held up a sign.
It was the only other Millions Missing event happening in Scotland other than the key demonstration in Glasgow. Hopefully, as this event grows, there will be more and more happening every year.
There was a selection of shoes, all with peoples stories of living with M.E., most of which were from young members of the community. I will include these photos at the end.
I have been posting on Facebook everyday this week about M.E., what it's like to live with it, about the levels of severity and how, in rare circumstances, it can be fatal.
There have been three deaths in recent years where M.E. has been noted as the cause of death. One of the most heartbreaking stories is that of Merryn Crofts, who sadly died a few days after her 21st birthday from starvation due to M.E. It is because of stories like this that people with M.E. fight so hard to raise awareness. M.E. research is seriously underfunded, and in Scotland there is just one M.E. specialist. Most of those living in Scotland are out of the catchment area, too.
There is hope, a test that is in its very earliest stage is showing promising results in differentiating between those with and without M.E., but there is a long way to go. There is no definitive test for M.E., there is also no treatment and no cure. There are millions of people missing because of M.E. and we will be heard.
Thank you for reading.
That ME Girl
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