10:07PM GMT 24 Mar 2016
If you had told me 10 years ago that one day I would be studying maths at the University of Bristol I probably would have laughed, or cried. Maybe both. But I definitely wouldn’t have believed you.
Around this time, back in 2005, I was struck with a nasty virus and never fully recovered. As an 11-year-old I saw more of hospitals than I did of school. After a year of being completely bed bound I was eventually diagnosed with Myalgic Encephalomyelitis (ME), commonly referred to as Chronic Fatigue Syndrome.
• The Symptoms
ME comes with an array of symptoms; a relentless throbbing forehead ,crippling on a bad day and still present on a good day, an ache in every muscle and joint that is amplified by any exertion, a mind fog that makes concentration a constant battle, and the memory equivalent to that of a goldfish. Most of all, overwhelming fatigue – completely unresolved by sleep.
I went from being outgoing, sporty and social to not being able to sit up for more than minutes at a time.
On the days I was at my best, the excitement would be getting to go downstairs for an hour or two, although getting me back up them would have been a struggle without my brother. Sensitivity to light and sound made the smallest everyday occurrences almost unbearable, being in the same room as someone who ate or breathed too loudly was intolerable. Still is (sorry).
On the days where the illness slightly eased its grip on me, my days would be consumed with One Tree Hill box sets, yet even then someone had to change the disc for me.
ME comes with an array of symptoms
Common misconceptions with this illness stem from the word ‘fatigue’, which is used interchangeably with tiredness and exhaustion. This leads many people to believe that the illness just refers to being a bit tired like everyone else after a long day or the state of being sleepy; whereas its real definition describes the body being utterly exhausted and the accompanying symptom of insomnia makes sleep hard to come by.
I compare my diagnosis to that of my dodgy iPhone battery; it drains way too quickly, and no matter how much I charge it, it will never reach 100 per cent.
When the time came to discuss a plan for GCSEs I was only managing a few days of school a week, and was advised by my nurse to take none and try to recover by resting permanently.
The assumption often is that a child would jump at the chance to give up school, but in reality that’s very rarely the case and definitely wasn’t a choice I was able to face.
“I compare my diagnosis to that of my dodgy iPhone battery; it drains way too quickly, and no matter how much I charge it, it will never reach 100 per cent.”
Eventually I came to accept that I didn’t really remember what it was like to not wake up feeling unwell, so maybe it was time to redefine my ‘normal’. I compromised with a 40 per cent timetable, which enabled me to take six GCSEs and later three A-levels. Despite this, I never really thought university would be on the cards for me.
However with the overwhelming support of my wonderful family, friends and teachers, I was offered a place to study maths at the University of Bristol.
Many people who know me at university may be quite surprised to read this article. It is not something I often share with people. However, with the new research, conducted by the University of Bristol, showing one in 50 16-year-olds have been diagnosed ME, it is clear that the struggles of continuing education with a chronic illness are common.
Through the ME Association I have spoken to many fellow sufferers about their choices regarding higher education. Many chose to continue their studies, although not all stand by this decision. Numerous sufferers opt to continue education with the Open University, which allows for much greater flexibility and management.
These are some of the approaches I have adopted to make life at university with ME easier.
The comfort blanket that I had relied upon and left behind on moving to Bristol was probably a lot bigger than your typical student’s. My teachers and friends who knew all the ins and outs of my situation, and provided support without having to be asked, were no longer present. It took a long while for me to accept that asking for help wasn’t a sign of weakness.
I would advise any student with ME to request accommodation close to where you’ll be studying, this will conserve precious energy – especially when you have to get up for a 9am lecture. Also inform your university about your illness so they can advise you of the protocol for any extensions or extra help that you may need.
Be independent, but have a support system
Everyday things like cooking, cleaning, and doing your washing are definitely some of the less appealing aspects of student life. Independent living can be a challenge for any young person, but throw in a chronic illness and it gets tougher. I’ve learnt a few tricks to make life a little more manageable; online grocery shopping avoids lugging around shopping, and making sure I always have something easy to cook in the fridge means I can eat on an unexpected bad day.
It’s also important to make sure you have a few people around you that you can confide in, and fall back on. Not everyone needs to see the crash and burn and the days where getting out of a bed isn’t an option, but having the few that will come by to check on you or grab you something for dinner will make all the difference.
Learn to live with FOMO (fear of missing out)