So you want to get a degree with ME, huh?
I had my first taste of studying with ME at university in the 1990s when I attempted a Biology degree. At that time there was limited support available and after only just coping with a full-time first year, I had to negotiate hard to do fewer hours. Unfortunately, I relapsed and had to abandon my course, and that was that for a number of years.
A new beginning
I fell into being a uni student again accidentally: I had done some evening classes on web design at Stevenson College, and was looking to pursue the subject further. I found that Jewel and Esk College had a web design course, six hours one day a week, which seemed manageable – but it didn’t have the numbers to run. A member of the Edinburgh branch of the British Computer Society suggested an alternative: Napier University (now Edinburgh Napier University) ran customised programmes, including computing modules, which could be taken part-time. It was February 2005 and the spring term was just about to start, so I didn’t have much time to make up my mind. I decided to go for it and see how it went.
I took two modules that semester, with four hours of class contact time; the other module was by distance learning. I didn’t realise that Computing was such a male-dominated environment at university level until I attended my first class, where I quickly made a bee-line to sit next to one of the few females there. My objective at that time was just to get through the weeks. Completing a degree seemed a distant goal.
Help available as a disabled student
Early on, I spoke to the disability and inclusion team at Napier and was assessed for Disabled Students Allowance later that semester. Students studying part-time are eligible for DSA, as long as they do 50% or more of the normal curriculum each year. Receiving the DSA was a real boon throughout my studies. Through it, I was able to get my own PC, printer/scanner/copier, adjustable desk and supportive chair to use at home. It also paid for software such as Dragon NaturallySpeaking so I could dictate coursework instead of typing it, and OCR software for scanning printed text. I also had a yearly allowance for consumable items such as printer paper and ink cartridges – very useful for printing out lecture notes! DSA can also be spent on voice recorders for recording lectures; I didn’t have one, but I know another student with ME who did. Had I needed it, DSA would have also paid for nonmedical personal help e.g. someone to go to the library with me and look out books.
In my second semester, I upped my hours from four to eight. I was assigned a personal development tutor from the School of Computing, who became a new source of academic and personal support and helped me keep going when times got tough.
The facilities for a Computing student at Napier were brilliant. The Jack Kilby Computing Centre consists of a 500 seat area with PCs available to access 24 hours a day. The multimedia labs have the latest Apple Macs and software, on which I learned to create both 2D and 3D animations – I enjoyed these modules, but discovered they involve a lot of work. In the course of my studies a Games Lab opened up with Xboxes to program on (and play on during Friday afternoons!) Lecture notes and tutorials were posted on the WebCT online environment, which was handy for accessing them at home if I missed them.
Coping with symptoms and coursework
The modular system changed in the course of my studies from doing four modules per semester full-time to three, so I went from taking half to 2/3 of a full-time course. As the biggest health difficulty I had was usually fatigue, the ability to pick the modules I took each semester was an advantage, so I could create a timetable that wasn’t too taxing and allowed pacing e.g. avoiding classes on consecutive days. (Sometimes, this wasn’t an option due to a limited choice of modules.) Through SAAS, I was permitted to reclaim money for taxis to and from university when my illness made travel difficult. It’s not something I used that often, but it was useful to know I could do it. I was also able to take some home study modules, which saved time and energy on commuting.
I was very fortunate in that brain fog has never been one of my dominant symptoms, so I didn’t have problems with learning and retaining information. A few times I needed extensions on coursework assignments; as long as these went through the official channels, lecturers were happy to oblige. I was also granted extra time in exams, though as it happened I sat very few of them in the course of my degree. Most of my assessments were through coursework.
I had three experiences of group projects, and found them quite trying. I was concerned about my fluctuating health, which was an issue during two of the three projects, though I managed to get my share of the work completed in the end. The third one I found stressful due to personality clashes within the group. I was relieved when it was over! I felt much more comfortable working on my own.
There were a couple of times when I came close to quitting altogether, as my health slid downhill and I had no way of knowing when things would improve. These were difficult periods to negotiate and I remember beginning the following semesters doing reduced hours, but not knowing if I was going to manage the workload or not. I am very glad that I was able to continue, as I think it would have been much harder to take time out and subsequently make a successful return.
Advice on studying with ME
The advice I would give to other students is to take on what you can, but don’t exceed your limitations long term. Studying part time and being able to pace was key for me. Better to be the tortoise than the hare! Starting assignments early and spacing out the workload is also wise, in case anything unexpected happens before the deadline. Also, don’t be afraid to ask for help, either academic or personal. People can be really accommodating if you let them know about your needs.
A happy ending
The good news is that, after seven years of study, I graduated with First Class Honours in Computing in June 2012, and received the university medal as the top scorer in my class. I felt proud and happy as I shook the chancellor’s hand – all those years of hard work had finally paid off! I will miss university, as it became a second home to me, but I am looking forward to new challenges ahead.
Student Awards Agency for Scotland (SAAS). For advice on funding, including DSA.
Action for ME have published some useful factsheets on studying with ME to give to student support services and lecturers.
A Phoenix Rising discussion thread on studying with ME.
I developed ME in 1993 after a bout of Chinese Flu – I had never had flu before nor had I ever had a problem with my health and was rarely off sick from work. This was like being hit by a truck – followed by several steam rollers – with spikes on. I was in bed for 5 days and off work for a week; in hindsight I should have taken 2 weeks off work but I had no idea what I was in for.
Although self-diagnosed with ME in 1994 after a huge amount of frustration and personal research, I was completely neglected and ignored by the NHS since my GP simply did not accept ME as a genuine illness; through sheer pride and determination I just struggled on for several years trying to hold on to my job at Standard Life where I had worked since 1990. After a promotion at work followed by a trip to New Zealand in 1997, the effects of the jet-lag just never seemed to go away and it was apparent I was starting to struggle again. I was finally diagnosed by a more sympathetic GP with “CFS” that same year, but in the absence of any real medical or practical support, I finally relapsed in 1998. After a course of CBT, I did get back to work in 1999 after 5 months on sick-leave, but I never felt right and always felt I had returned to work too early and for all the wrong reasons.
I was promoted again in 2000 and had been working as a Business Development Consultant & Project Manager for 3 years but had struggled in that time between full time and part time hours and periods of sick leave. I finally suffered a major relapse in October 2002 due to a stress breakdown and I have been unable to work since. I then lost my job with Standard Life in 2004 after 13 and half years service.
I was the most ill I had ever been and was house-bound for many, many months. After improving enough to be able to attend the Action for ME residential course in September 2004, I was subsequently invited to join the Wednesday Group at the Thistle Foundation from January 2005. The help and support I received from the Wednesday Group (most of whom are edmesh members, some even on the committee) really helped me to get out and about again and restore my confidence. I had always felt that support groups were just not my thing at all but I can honestly say that the friendships I have made and the support I have received have really helped me to move forward. Just sharing experiences and information with others in the same situation was hugely beneficial and actually made me realise how much experience I had myself that I was able to share and make a positive difference to others.
My confidence had suffered hugely and I felt very isolated and alone at times. But establishing links with edmesh members helped me to start enjoying life’s little pleasures again, without having the worry of being scrutinised or judged or feeling any pressure to put on an act; I could just be myself and felt totally accepted. I even started to have fun and to laugh again and rediscover my sense of humour and things I enjoyed.
I joined the committee as Treasurer in October 2005 as I felt I wanted to give something back to edmesh; I will always be grateful to edmesh for the support and friendships and for restoring confidence in myself and my capabilities.
When I first had ME, I was pretty well bed bound. My legs were so weak that I managed to the bathroom by holding on to the radiators and doors for support. Having a bath was a major event and I wouldn’t attempt to wash my hair on the same day as the bath. I couldn’t find the right words to name certain objects. It was as if my brain was on pause. I was very weak for around two years. And then slowly, very slowly, I began to feel the strength return to my body. I could think again, my vocabulary began to return and my body felt stronger. There were setbacks which were very disheartening but I just seemed to get slowly stronger. I had in the past, pushed myself beyond my energy limits because I wanted to be like my old self. That always backfired and I’d end up in bed aching and foggy-brained. The days when I was bed-bound are long gone. I get out most days: meet friends, go to the shops, watch a movie, see my family. I still have to be careful about how much I take on. I live within my limitations and now that I’ve accepted that life is easier.