The Chronically Ill Student

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jo_hadler

 

I was 14 when I began to notice that I was different from my school friends. I had what I thought were growing pains in my legs, stomach problems, felt sick, had frequent headaches and worst of all, I had no energy. After many blood tests and visits to many different doctors, I was diagnosed with CFS/M.E. in 2005, when I was 15.

My teenage years are a blur to me now as I tried to keep up with my friends – by drinking, drug taking and staying out all night. All I remember is feeling exhausted constantly. Eventually it caught up with me and my ‘friends’ stopped inviting me out, as they knew I would only make my excuses.

I felt embarrassed throughout school and college and would never admit to anyone that I had M.E. Looking back now, I felt ashamed that I wasn’t ‘normal’ and couldn’t do the things other people my age were doing. I dropped out of college twice – both times due to my M.E. as well as me lacking in confidence and not being able to manage the workload.

I will always remember July 2009. I discovered that my boyfriend at the time had been cheating on me and so I made the impulsive decision that I was going to leave, go to university to study music and pursue my dreams of being a singer. My parents were pleased with my decision, but also worried as it was a quick decision that I hadn’t actually thought about. I just wanted to get away and do something different. I don’t think they thought I would be able to manage it but they were happy that I was attempting to do something so big!

I had begun to feel a lot better in myself and my confidence was building, although I was still very nervous about leaving home and moving to a new city. My energy levels increased and I had even stopped thinking about my M.E. I now realise that this didn’t mean it had gone forever, it had just gone into hiding for a little while.

Unfortunately, the day I moved to a different city to start my new adventure, I began to feel very unwell. My parents thought that I was just nervous and so they said their goodbyes and left me to unpack. I became progressively worse. I couldn’t breath and was in and out of consciousness. Eventually my new flat mate took me to hospital after he heard my calls for help, and I was subsequently diagnosed with pneumonia. This began the return of the chronic roller coaster ride that is M.E.

The next three years were the hardest of my entire life. I was constantly up and down. I would go for weeks feeling perfectly fine, then the tingling, prickling leg pain would start and I would be bedbound for days. My parents were very supportive of me throughout my time at uni and helped me with everything from money to proofreading my essays.

Throughout my time at university, I really learnt how to cope with my M.E. Struggling my way through the first couple of years, I slowly began to notice early signs and symptoms that I would recognise as my body saying STOP! (One included my thighs feeling ‘fizzy’ and my legs feeling slightly heavier than usual.)

One thing I learnt while being at uni was to not be disheartened or disappointed in myself. My advice is to do as much as you can without working yourself into the ground. Stress is a big trigger for me so I would try and make sure that essays were done a couple of days before deadlines and if I was confused by anything, I would ask my tutors for help. Always plan out the amount of time you have for essays. Figure out how long you are able to study for or write essays for and split that over the amount of time – at points I was only able to do 10 minutes a day. Obviously on better days you can do more, but don’t push yourself!

I noticed a correlation between alcohol and relapses. Through all the years I had been drinking, I had always thought that alcohol made everyone feel sick, have a headache and gave them leg pain! My doctor confirmed that many M.E. sufferers tend to be alcohol intolerant (along with caffeine intolerant!).

Studying was hard, but by making sure to spread it all out, I felt like I could cope with it all. My final year came around quickly and by then I had learnt a lot about myself and my M.E. We had gone on quite the journey! I had begun to accept that this is what I had and I was starting to feel brave enough to tell my friends. They accepted it and actually, it didn’t really matter to them! They would still invite me out and some would even sit with me quietly if I wasn’t up for doing anything.

Unfortunately, I didn’t find any useful resources for a student with M.E. There seemed to big a huge lack of them whilst I was at university (there probably still is!). 

Another piece of advice is to make sure to tell your tutors how you are feeling. Without telling them, I wouldn’t have had the support they gave me throughout. I was given extensions when I felt I was unable to finish work on time. This made things a lot less stressful for me.

Graduating was one of the best days of my life and the biggest achievement. I was in shock that I had managed to get through university. I was awarded a 2:1 BA (Hons) in Professional Musicianship in 2012 and I haven’t looked back since.

I am now working as a Careers Advisor and as part of the Events team at a music university, where I am helping students on a daily basis and mixing with music industry professionals. I am also working as a part-time session singer and songwriter and have been lucky enough to work with some amazing musicians.

My working week can be difficult. 40 hours is a lot! I never expected to be able to work this many hours but I manage my stress levels and workload well. I am able to speak to my employers about my M.E.; they are very understanding and are okay with me coming in late occasionally as well as having to leave earlier sometimes. 

Going to university was the best thing I have ever done. It was a journey of discovery. Learning what my triggers were, understanding how my M.E. worked and, most importantly, unearthing who I was as a person.

M.E. doesn’t define who I am. I am still me: hardworking, determined and fun loving. I am proud of what I have achieved and I will continue to try and live my life to the full.

 
 

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