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.”
“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.”
Comments
Dear Marion,
I would like to write to you to thank you for sharing your story. I have had ME for several years now. I had always dreamed of becoming a geologist but as my symptoms got worse, that dream seemed so far out of reach. I knew I would not be able to go to residential university and this really disappointed me. With terrible brain fog, confusion and short-term memory loss, it just wasn’t a viable option for me. My husband studied his degree with the OU and he told me all about the science courses, and so I decided to sign up for a 10 point short science course ‘Tsunamis, Volcanoes and Earthquakes’. I didn’t expect to pass it but I would have been content that I had tried. I was nervous when my result came through but was astonished to find that I had passed. I was over the moon. I signed up for another short course, then another and then I found myself studying S104 Exploring Science, a 60 point course. Suddenly a new world opened up for me and I reclaimed some of the confidence and self esteem that this illness had smothered and I felt I had options available to me. I am now studying S276 Geology and I feel incredibly happy that I am. I am doing very well also and I have even mustered the confidence to go to my tutorials and on an OU field trip. I couldn’t have done this without the support of the OU. I have my first exam coming up in June and I was incredibly nervous about it until I read your post. I was concerned in case I am feeling really bad on the day but I have applied for similar support to you and being able to sit the exam in the comfort of my own home has given me the confidence and strength to be able to finish my degree. I wouldn’t have been able to do it in an exam centre because of noise and light sensitivity, even the sound of people writing in the background would have been too much. The support of DSA has been phenomenal. I have been given software that can read my books to me and so much help and support which has led to the success of my studies so far.
It wasn’t my intention to give you my background, however, I want you to know that it has been so useful to me to hear from someone who has successfully completed a degree with this illness. I am still on my journey and I hadn’t heard of anyone succeeding in study with this illness until now. I feel as though I am muddling through some days and I often wonder if I am deluding myself in thinking I can do this, however, I am on level 2 study now with another course planned for next year. Hearing your story has affirmed that it is possible. As for what the future holds in terms of employment, I am not sure, however, this does not matter to me. What is important is that I would have achieved a dream that I have wanted my whole life, something that seemed so impossible when I became sick. The flexibility of OU study and being able to study in my own time and at my own pace has given me confidence, hope and goals to work towards which to me has been the greatest gift of all. The OU have given me the confidence to believe no goal is ever out of reach.
I hope you don’t mind me sharing this here. Thank you once again. You have inspired me. Good luck on the rest of your journey. May health and happiness always be with you.
Kind regards
Leanne
Thank you Marion and Leanne for sharing your stories. I too have CFS and have just started my OU journey having passed my first 15 Credit module, and half way through my second. The sense of achievement can't be measured, since I was medically retired 3 years ago. My little world has opened up!
Hazel Brown
Thank you for sharing your stories, I'm 33 and have had M.E. for 16 years, currently studying my first module with the OU. Life with this condition can be incredibly difficult, and sadly so often misunderstood - articles like this are invaluable.
Wishing you all the best of luck with your studies, gentle hugs,
Stacey
I just wanted to offer you my support. I know what you are going through. I became ill with ME at the age of 12 and was left totally debilitated, unable to walk read or take part in life. I went out only on short trips with the aid of a wheel chair. It was a horrible time. Not made any better by suspicion from doctors of the reality of my symptoms and a complete lack of support from the education system. Luckily I recoverd by the age of 20 and now find myself 32 years old with an 8 year old daughter and a 4 year old son!. I am studying for a BSC hons open degree to give myself some kind of education as I had to drop out of school at 14 due to ME. I will admit I consider myself recovered although I have the occasional muscle spasms and pains and still suffer headaches if I push myself too hard. Thankfully this is rare (once a year or so for the muscle pain, I think headaches will always be a feature for me). I have learnt the sercret to my recovery was learning to pace myself.
Really wishing you the very best for the future. I am so greatful to the OU for being there to give me the oportunity to gain a degree. I can't express what the OU means to me.