My M.E Story Part 3

Tuesday, January 06, 2015

Continuing on from Part 2, here is the next installment of my M.E story. If you would like to read the previous posts please click on the links below.

I was eventually diagnosed after 2 years with Chronic Fatigue Syndrome/M.E in November 2011. I wouldn't have been diagnosed if I hadn't gone and done some research online. In fact, I remember when it all clicked in my head - I was reading the newspaper and I saw an article that was about a teenager who slept for 23 hours a day (unfortunately I cannot find the article). It listed all of the symptoms, such as the extreme fatigue, pains, headaches, my intolerance to any form of exercises, and everything just seemed to fit. And so, I went back off to my GP with this list and she agreed that this was the reason why I had been so ill. I have been lucky to not have M.E at that severity, but at my worst I was sleeping for up to 18 hours in one go.

I immediately went back to my student house and told my best friend at the time. She had seen me every step of the way with this illness, right from when it all began. As soon as I told her, she insisted that I was wrong and I was lying about my diagnosis, I was just attention-seeking. This, amongst other things that happened that were not related to my illness, caused us to fall out. My other university friends didn't want to know either, the only person who was there for me at university from that point on was my boyfriend, and without him standing by my side, I probably wouldn't have finished my degree. Somehow, the news that I had been diagnosed spread around university, and it wasn't me or my boyfriend who told people.

I was referred by my GP to a CFS clinic at the local hospital, where I was offered either CBT or a place within a local support group. As the support group only met at a time when I was meant to be in lectures, my only choice was to take the CBT. To be honest, I never found it that helpful; it did bring my sleeping times down from waking up at 4pm to 2pm (I am now at 9.40am!) and we did establish what the trigger point for my M.E was: the cervical cancer vaccination. I was also in a relationship at the time that was falling apart and also had the stresses of moving away to university. Most triggers tend to be a virus like glandular fever that people describe as never recovering from, but mine seemed to be the rarer cause. There isn't any proof that it was the cause of my M.E, but the puzzle just came together. My Mum refuses to let my sister have the jab too and I will be doing the same for any daughters I may have.

Also, I want to point out why I tend to refer to my illness as M.E, and not Chronic Fatigue Syndrome. Whenever I have been talking about it to someone and I mention it is called 'Chronic Fatigue Syndrome', people tend to reply with something along the lines of "Oh, I must have that because I feel tired all the time too". This REALLY pees me off! M.E is more than excessive fatigue - you are in pain, get migraines that force you to stay in a dark room for days, cannot stand for long periods of time without fainting, not being able to stop being sick until you are referred to A&E because it has become blood.....there are so many more things that make M.E/CFS what it is. Because of the amount of times I have heard this stupid, senseless comment, I only use 'M.E' when describing my condition.


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