I am 20 and studying full-time at Cardiff University.
I cannot remember a time when I didn’t feel tired.
Every morning I would be exhausted going to school and I’ve always had a bad immune system. I would catch everything.
I had a chest infection in January 2005, which took me a long while to recover from. From then onwards, I wasn’t able to attend a full week of school and each week the days I needed off increased.
Impact on school
In the Easter holidays, my family went on holiday, returning the evening before term began. I was too exhausted to go to school the next day and from then on my condition deteriorated.
I had to reduce the amount of GCSEs I could study down to five and taught myself, collecting work from my school teachers occasionally.
During my A-levels my condition was better but after having the cervical cancer jab, I developed an acute and chronic pain in my pelvic area and developed fibromyalgia.
I am now in a wheelchair and struggling to study. I am lucky to attend one lecture a week.
I cannot have the care-free life of my friends. I feel like I have been robbed of what should be the best years of my life.
Going to university
I wanted to go to Bristol University but I knew I wouldn’t be able to make it up the steep hills.
I also knew that I wouldn’t be able to work part-time so I had to go to a city where I would be able to pay my rent (and student halls in the first year) and live on my loan and some money from my parents.
I cannot emphasise how vital these factors are for someone struggling with severe M.E./CFS.
I have had a lot of help from my university.
Help was there
I spoke to my personal tutor, my lecturers and seminar tutors at the beginning of term. I was worried that it might have seemed like I was trying to get out of doing work but this wasn’t the case.
Having known about my illness from the start, my tutors told me what help I was entitled to, which meant I could call on that help when the time arose.
I applied for Disabled Students’ Allowances (DSAs) and was given a lot of study aids, including a laptop, a printer, paper and ink allowance, and lots of other stuff to help manage my illness while studying.
All of it has really come in handy.
I was also given study skills lessons where the tutor comes to my house.
I am a very conscientious student and hard-working. I always want to do my best like most M.E./CFS sufferers so I thought I wouldn’t need these lessons. But studying for a degree means you need different skills than those you develop at A- level.
My tutor did tests to find out how I learn. This has given me lots of helpful tips to use the time when I can study more effectively. She also helps me to split my work up into manageable chunks so even on a bad day I can do some work.
I also struggled to do the planning stage of my assignments. I get ‘brain fog’ but my tutor helps me to break up the essays into manageable chunks and then plan out the work needed to complete the assignment.
One of the most helpful parts of my support is a note-taker. The support worker goes to my lectures, even if I am not able to attend, and takes notes which are then emailed to me.
I am lucky that my personal tutor and my study skills tutor seem to understand my frustration and my condition well.
I believe meeting someone who works in the support centre at the university as early as possible at the start of term is vital. They can tell you about the financial help and other support you can get or put you in touch with the right person.
For example, if something has been missed out of the DSAs assessment which they think you need they can request it from whoever funds DSAs on your behalf.
When it comes to DSAs and other benefits, I found that sending letters of support from my MP (you can meet with them during their surgery hours), my personal tutor and the support centre made a big difference.
I would recommend writing everything down in a lot of detail.
There is also a hardship fund available at university. It has been cut substantially now so it is important to apply as soon as possible. The support centre should also be able to tell you about other charities and bursaries.
It is also a good idea to check if there are any other local charities or funds within the local education authority. I was given a £100 cheque but this varies from council to council.
Manging with M.E.
For me, diet and pacing are very important. I was amazed by how much better I felt after cutting out lactose and wheat.
Pacing is something I found difficult but there really is no point in finishing the cleaning, for example, if it means you’ll need a few days to recover.
It is frustrating not to be involved much in extra-curricular activities. I can’t stay up until five in the morning or get drunk on a social.
Just be honest about what you like to do. I managed to find friends who would rather play Scrabble on Saturday nights than go out clubbing.
I am lucky to have a very caring boyfriend who does everything for me. We also made some great friends when we lived in students halls. They understand our situation and are very supportive. It makes such a difference to both of our moods.
People have understood my illness quite well. Often they don’t feel they can ask about it but once I explain, I’ve found that people are sympathetic.
You have to say that it’s more than just being tired because it is - otherwise people just say they feel the same.
I am re-sitting my first year because I had to miss so much university and wasn’t able to attend my exams.
I flip from being very positive to just wanting to give everything up and live in my bed forever.
It’s difficult. You can’t plan anything because you don’t know what will happen even a week from now but I hope that one day I will be able to become a writer.
I try to tell myself that I won’t be like this forever and it will make me stronger.