My Story with M.E

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It has now been just over six years since I was diagnosed with Myalgic Encephalomyelitis. I was diagnosed at the age of fifteen after a bad case of glandular fever when I was fourteen, which lasted for nearly a year. At the time, being told that I have ME/CFS wasn’t something that daunted me, I was used to being ill, after being ill for so long with glandular fever. At such a young age I didn’t truly understand what it meant and definitely didn’t understand that it was something without a cure that may never go away. It’s safe to say that along with glandular fever it took quite a toll on my life, both social and educational.

Overall I ended up missing pretty much two years of school, occasionally attending for an hour. I was very lucky to attend a school that was so understanding of my condition without forcing me to retake anything. I was allowed to reduce my GCSE’s to four and attend sixth form to study for two A-levels. Although I continued to miss a considerable amount of school in sixth form, by the end of my last year my health had improved considerably and I was able to socialise with my friends properly again and take on a part-time job. By some miracle, despite my huge lack of attendance I achieved good grades and got a place at university to study illustration. I decided to defer my place in order to save some money and make sure my health was stable before attending the university the following year. 

My year off was one of the best years I’ve had so far, I learned to drive and gradually built up to working full time. My health was the best it had been in years and I felt almost back to normal. I still couldn’t properly exercise without having bad symptoms and if I pushed myself too much I had days where I was unwell, but other than that I was able to go out and do normal things, something that I was so grateful for as I had missed out on so much socially over the previous year's being ill.

I loved my first year of university and the course, I also got my illustrations published in a book which was amazing and a design sold by a t-shirt company for a short time. I think looking back I was a lot more ill than I let myself believe. I struggled a bit and on occasion I had to give going out a miss or leave early. In addition I suffered considerably with insomnia, a symptom of M.E., often not getting to sleep until around 3-4am which didn’t help my symptoms. I held out quite well throughout the year, regardless of the fact that I am naturally conscientious and worked hard, pushing myself quite a lot. Towards the end of the academic year I could feel my symptoms flaring up and the days that I felt unwell became more and more common. My health deteriorated quickly over that summer. I managed to attend work experience with a graphic design company and work full time for a while, but before long I had to reduce my hours to 2-3 days per week as I was struggling too much. Despite my decreasing health I volunteered at Reading festival in August, which was such a good experience but involved two twelve hour shifts and a lot of walking to and from the arena. Then it was time to go back to uni and begin my second year. As expected, it was a struggle. I think the fact that it was a creative course didn’t help as in order to keep up with the work load you had to be in university for pretty much 8-9 hours per day, as well as often working late into the evening. 

I struggled on, ignoring my health, but it was towards the end of November that my health deteriorated so significantly that I could no longer ignore it. Since then it has unfortunately continued to get worse. My health is now back to a point that it hasn’t been in nearly three years and has unfortunately left me with no choice but to suspend my final year of university. It got to the point where I had to get a taxi to and from lectures as I struggled to walk and sometimes would spend up to two weeks in bed without leaving the house. I struggled to make myself food, I couldn’t food shop, and I couldn’t even shower standing up and needed someone else to brush my hair. I ended up getting a wheelchair as I had no other way of getting out of the house and still use it quite regularly if I need to go out. I still have days where I have to lie in a dark room and don’t have the energy to lift my head but thankfully I occasionally have better days where I am able to go out for a short time or even just get ready without having immediate payback. Unfortunately lately ‘better days’ have grown more rare, but hopefully with pacing myself and the right mind set I can gradually improve over time. 

(I would love to hear other people's story with M.E. or chronic illness - so please feel free to comment if you want a chat!)