Chronic Fatigue Syndrome

Marion Grenfell-Essam, 28, from Essex, has had ME since she was just 12 years old which means the smallest of tasks leave her utterly exhausted. But she’s found comfort in OU study, the flexibility of which allows her to work around her symptoms, and she plans on “studying for the rest of my life if I can.”

Forced to drop out of studying for a BSc in Applied Psychology at Cardiff University, Marion was overcome with depression. At the time, her mum was (and still is) studying towards a BSc in Psychology with the OU and “decided to bully me into finding an interest,” says Marion.

“She knew I had always expressed an interest in learning more about web design so she pestered me into signing up for T183 Design and the Web. That was the autumn of 2006 and I haven't looked back.”

Bound by the constraints of ME, symptoms of which include noise and light sensitivity, headaches and migraines, short term memory loss and fatigue, Marion sees OU study as her escape; it’s given her purpose and she hopes one day to carve out a career using her qualifications.

“Certainly my intention with the BSc in Computing is to give myself the skills to be able to work from home on computing and web design projects. The BSc in Mathematics and Statistics is mostly for fun,” she says of working towards two degrees.

Support from tutors
“I think the thing I like most about OU study is the freedom; both the freedom when studying a particular course to go at the speed that suits me but also the freedom to choose what to study. I've always been interested in learning almost for its own sake so the ability to choose from numerous subjects is wonderful.

“I've found almost universal support from my tutors. When I've been having problems with the TMA deadlines they are always happy to give advice about my best options and the teaching quality has been excellent both in the year long and short courses.

Marion has had ME (Myalgic Encephalopathy) or Chronic Fatigue Syndrome (CFS) for 16 years and she’s learned to deal with the symptoms.

“The main symptom is fatigue. Joint and muscle pain is common, with visible twitching of muscles being relatively rare. Perhaps the most frustrating set of symptoms are the cognitive symptoms: problems with short-term memory, concentration and maintaining attention. Sufferers often complain of brain fog - the inability to focus properly.

'Perhaps the greatest support the OU gives me is home exams. I simply could never have completed any course with an exam if I had had to go to an exam centre'

“Most sufferers will experience headaches with many having to deal with migraines - basically headaches but with additional components: flashing light or auras, neck pain, light sensitivity, noise sensitivity, nausea even to the point of vomiting and skin sensitivity so that even light bed clothes can feel like someone is gripping their hand hard around your skin. Basically when it gets really bad your only option is go and lie down or lie propped up in a dark, quiet room.”

With day-to-day activities like eating and dressing making her tired, Marion sleeps a lot, but she can be awake in the early hours of the morning. So it’s the complete flexibility of OU study that allows her to work at her own pace and in short bursts if necessary, with support for her additional needs via the university's services for disabled students.

“Because I can't plan my good days and my bad weeks I can't always stick to the timetable. My tutors are always very supportive about giving me extensions if I think that a couple of extra weeks might make the difference between a partial TMA and no TMA. I find reading 12 size font just a little bit too small to be comfortable for me so the ability to read my Unit texts as pdfs where I can zoom to a size that works for me is great.

'Sometimes you just can't talk to your family and friends about what you're dealing with but you need to talk to someone and the other students on the forum always understand what you're facing'

“Where I want to read from the unit but would struggle to hold it open the OU provide me with comb-bound books so that they lie flat on my lap or table so I don't get hand strain keeping the book flattened to read. The use of iTMAs is a big bonus as it means I don't have to try and hand write anything with my sore muscles. At the tutorials my Learning Support team make sure I have a ground floor room close to the entrance so that I can easily walk the distance with the help of my walking stick.

“Perhaps the greatest support the OU gives me is home exams. I simply could never have completed any course with an exam if I had had to go to an exam centre. I can sit where I always sit to study with the light and noise levels set to my preferences and with my body supported to avoid muscle strain.

"I'm allowed 30 minutes of rest breaks so I tend to take at least two breaks of 10 minutes each and sometimes a third of the remaining 10 minutes depending on how tired I am and how the questions work out. I can use these 10 minutes simply to close my eyes and stop for 10 minutes or I can shift my papers and lie down on my sofa and catch 10 minutes sleep if need be.

“Because of the eye strain the OU provides me with large print exam papers on pink paper to avoid the glare off a white page.”

Reassurance that you're not alone
Marion’s an active member of the OUSA and Platform forums, which she finds “an enormous support”.

“Sometimes you just can't talk to your family and friends about what you're dealing with but you need to talk to someone and the other students on the forum always understand what you're facing. Even if they haven't gone through it themselves they usually have some sensible advice and often all that is really needed is the reassurance that you're not alone with having to deal with the consequences of this disease.”

Aside from study, Marion likes to read, watch TV shows from crime to sci-fi and has recently discovered blogging.

“Since January this year I've been feeling more hopeful for the future and felt that my brain state allowed me to at least string some sentences together. So I started by reading some of the blogs listed on Platform and when I felt I'd got a feel for it I took the plunge and wrote my first post.

“It allows me to crow about small accomplishments - like sleeping for nine hours and not two hours or 12 hours. It allows me to moan about the migraines or rave about a new book or TV show.

“With the short-term memory issues that go with ME it is generally impossible for me to remember what happened to me last week certainly not any further back and it is very easy to lose track of time between events. The ability to go back re-read posts to discover what I've been doing for the last three weeks or two months ago is a very useful by-product of keeping a blog.”