I suppose I should probably write something about how my M.E. came about, how I was diagnosed and the struggles I had with it. Some of these years have been a bit of a blur and have only really made sense when I have looked back upon my medical records. I've had to do this as I have had to plan out a cover letter in preparation for applying for student finance for a second time. I will speak about that in a future post.
All of what I am about to talk about it very personal to me. I don't think even some of my closest friends know everything about me because in truth a lot of the people I have met over the years haven't understood enough to stick around. If you have M.E. or another disability you may understand what I mean.
Prior to getting ill life had been relatively normal. I'd been to school and done well in my GCSEs, gone on to college and completed a BTEC National Diploma in Graphic Design and an A-Level in Photography. I'd then taken a year out and worked 4-5 days a week, 9 hours a day in a shop that sold bath bombs and soaps, a little along the lines of Lush. Then I headed off to university in September 2005 in the hope to become a Graphic Designer.
University was not as I expected. I was living away from home but luckily for only about an hour away as I was only in uni 2 hours a week. The level of tuition wasn't enough for a full time course and I felt such a failure for it not working out. By March 2006 I was in discussions with another university to re-start the course in the following September. All was looking up.
In April 2006 a family member passed away very suddenly, then another in May from a long term illness. These were my first experiences with losing someone and it hit me hard. Following this there were also problems within my extended family and this went on for about 2 years before things finally calmed down which I also let this affect me massively. I'm a big thinker and all I could do was try and think of a way to make everything right again, which obviously I couldn't.
I started at my new university in the September of 2006 and it was much better than my previous place of study in terms of the course. However I was struggling with symptoms of low mood, swollen glands, tiredness and IBS flareups as well as still struggling with the ongoing family drama. After numerous visits to my doctor I was prescribed anti-depressants and only just managed to scrape through my first year of college by using the extenuating circumstances procedure.
I needed to boost my income so started a part time job and during 2007-2008 and my second year at my new university I continued to seek answers from my doctor. I had blood test after blood test and all came back clear so was often sent away with no answers. They continued to medicate me for depression but by now it was more down to the constant exhaustion that I was feeling low rather than anything else. I was struggling in college and in everyday life. Our house was burgled one evening while we were sleeping and this led to poor sleep for a few months which only fuelled my fatigue. I was getting nowhere with the doctors, failing uni and feeling like I didn't know where to turn. I failed my year at college but it was agreed I could repeat it the following year.
My doctors had suggested exercise might help and I had also wanted to lose weight so I started going to the local gym about 5 times a week. At first I really enjoyed it and my energy levels did improve slightly and so did my mood. But as the weeks went on I felt more and more tired, more sore, pain became a big issue and my glands swelled up really badly. I was constantly being sick and was struggling to keep food down because it just made me feel exhausted to eat. I went to see the nurse about my swollen glands and she asked me had I scratched my head or had nits. I just looked at her like she had lost her marbles. Scratching my head can make my glands swell so much I had hard lumps in my neck and make me so sick I can't eat? Okay then.
I went back to university in the September (2008) but struggled from the start so I went back to my doctors and really pushed them for answers. After seeing a different doctor in April 2009 the possibility of me having ME/CFS was suggested and I was referred to the hospital for further tests. By this time I was so ill I could rarely attend uni, was struggling to attend work (I lost count of the number of times I had "flu", how do you tell them you can't come to work because you are too tired??) and had constant fatigue and pain. I didn't complete my year at uni for a second time but extenuating circumstances gave me an extended deadline of May the following year. I planned to get a diagnosis, get treatment and get on with life again.
I started tests at the hospital during the summer which continued into start of the academic year. I was now in bed for about 18 of the 24 hours in a day with severe fatigue, often sleeping, only getting out of bed to eat or wash, and pain was also a big issue. On the 28th October 2009 I was officially diagnosed with ME/CFS. I thought great, now I can get better. I went away from the hospital expecting further letters about treatment or information about the condition. Nothing. I started to research further myself and the outlook seemed bleak. I was still no further forward in completing uni, work were unhappy with my attendance and I didn't really even know who I was anymore or what I wanted from life. It was like I was trapped in a glass box and everything I had ever wanted was on the outside taunting me. Friends were disappearing, or shouting at me for being flaky when I couldn't follow through with out plans to meet up. I was desperate for help. I went to my doctor begging for help who told me there was a management programme but it would be a long wait. She referred me and I finally decided enough was enough with university. I would never be able to complete this course, I was too ill. This was me at my lowest point.
I can't really include much more here because in all honesty I don't remember much of these years. They are such a blur of exhaustion and sleep. I had my good times, I did manage to feel well enough at times to do some of the social stuff I enjoyed like gigs and festivals and days out with friends (mostly in the earlier years) but what people didn't see was the days/weeks after I would spend suffering from them.
I will do another post at some point on how I got from there to where I am now. I hope this insight was useful to some of you. Thank you for taking the time out to read this xx
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