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 ...
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 could possibly put you at higher risk of developing one yourself (particularly from your parents), but this hasn't been 100% proven. My mum has suffered with M.E. for 10+ years and my dad has a rare form of arthritis, so it could have put me at higher risk.
I know what symptoms I have, but I can't remember in what order they started. I know it was originally a migraine which lasted for 6 months, but what symptom followed it? I believe in the next appointment there will be more questions about my condition, how it affects me and how I manage it. We will also look at areas I want to improve or focus on and come up with a doable strategy. I feel hopeful about working with him and what he could offer me.
At the moment my M.E. is fairly well controlled; I reduced my morphine over Christmas with no problems, I am taking Melatonin for sleep and I am having a decent night 8 out of 10 nights and today is only the second time I've had to use my walking stick this year. The first was at the Snow Patrol concert, and again today due to weakness. This is because I was diagnosed with iron deficiency anaemia a year ago this month and I have been taking iron supplements ever since. I have had my blood checked about 4 times since then, and while my red blood cell count is improving, it is doing so incredibly slowly. My GP was wanting me to stop the supplements in case they are causing another issue I have at the moment, but I got my blood test results this morning and I still need to take it 3 times a day until April when they are retesting me. I hope it improves soon, I'm particularly weak every month with that on top of my usual M.E. weakness.
Still, I am in good spirits. It is my birthday next week and my dad is flying up to spend a few days with us which I am looking forward to, especially if I can leave the walking stick at home.
Thanks for reading.
That ME Girl
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