Smiling Clare

Living Life Within the Limits of Chronic Illness

Education and M.E.

I became unwell, with what was eventually diagnosed as M.E., in January 2005, when I was 12 years old. I had just completed my first term at secondary school and was enjoying making new friends, learning new subjects and even the independence of being able to walk to school on my own when illness struck.

To begin with the doctor couldn’t find anything wrong with me, and thought I was just trying to avoid school. The school were somewhat understanding in that they believed something wasn’t right with me; whether it was my health or I was being bullied they weren’t sure but they did believe something wasn’t right, they put in place measures so I spent the day in the ‘Special Educational Needs’ class room, where my work was sent to me so I could do it there, without having to walk round the school to all the classrooms.

Somewhere along the lines though, even that became too much. Whether it was before or after I was referred to the paediatrician I can’t remember. The paediatrician told me I had Post Viral Fatigue Syndrome and that I’d be better in a few weeks, in the meantime I should carry on going to school as normal. Well that didn’t happen, I wasn’t well enough for that. The school made a plan for me to go in for half days and even that plan failed. After another appointment with the paediatrician, who couldn’t understand why I wasn’t better, I was referred to a rheumatologist who eventually diagnosed me with M.E.

Somewhere along the lines the school asked my parents permission to write to my GP, which they then did, requesting something from him to say that he didn’t think I was fit enough for main stream school, and as a result they could then get the local integrated support service to provide me with home tuition so as I didn’t miss out on my education.

This was done and for the next 4 years I had tutors who came to the house for an hour each day, to begin with it was just the one tutor covering all the main subjects, then it became four tutors each covering different subjects. My concentration wasn’t always up to much, and many lessons would have rest breaks within that hour. Most were done either sitting propped up on the sofa, or even lying on the sofa. It wasn’t easy but I was learning.

As my GCSE options approached in 2007, the pressure began building. I must do at least 5 GCSEs, they said. English Language & Literature, Maths, Science and one of my choosing. I believe I chose Information Technology. From that point on there was pressure to do some of the lessons in the library at school, to do a lot more work in general, even though my energy levels were still very low, my pain levels quite high and I would get dizzy sitting on the sofa. I remember one particular lesson where I was so unwell lying on the sofa, that my tutor just read some of the book we were studying to me, and even then I think I dozed off! We definitely had to go over that bit of the book on the next lesson anyway!

Eventually my parents noticed how down I was getting using all my available energy, and then some, on school work and lessons, and even the tutors at the integrated support service noticed too. Now I can’t remember if at first I dropped down to the 3 core subjects; I’m almost certain I did none of the work towards my chosen GCSE of I.T., but I do know eventually I was forced to drop down to just a single GCSE. That was a difficult decision to make, especially with all the emphasis put on GCSE exam results, but my health had to come first. Choosing which one to continue with was difficult; I loved maths, always had done, but in the end my parents and I decided that English would probably be more useful.

And so that’s what I did, alongside an AQA Unit Award in history, and an Adult Numeracy test, by the end of the 2008 academic year I sat my English Language GCSE at school, in a separate room, using a computer, and I believe I even had extra time given because of my health. It exhausted me.

I didn’t do half bad, given my health, and in August 2009 received my GCSE result of a B grade in English Language. Which surprised me.

The timeline of everything thus far is a little hazy; I was too unwell to really notice the passing of time in some ways. And I have to admit, looking back on that time there are bits my parents tell me about that I have no recollection of, so I apologise if any of this doesn’t seem in quite the right order – it may well be it isn’t! But the upshot of it all is that I missed out on almost all of my secondary school years, I was lucky that the school organised home tuition for me so I didn’t miss out on my education entirely.

After finishing school I had about a year of improved health, which saw me start a course at the local Adult Community Learning Centre. It was an hour or two a week, at first in the afternoons, and then later in the year it became an evening course. This taught me the basics in web design, and I thoroughly enjoyed it. It made me think about the future I wanted and what I would need to achieve it.

In August 2010 I decided it would be best if I did a degree through The Open University. I chose to do Computing and Information Technology as it was a field which had always interested me. And so in October 2010 I began my journey with the OU.

Now I’m not going to lie, doing a degree, even part-time and from home, is tough if you have moderate – severe M.E. You see, although when I began my degree in October 2010 I had mild – moderate M.E., I soon had relapse after relapse. I can’t say this was a result of studying, because there was A LOT of other factors going on in my life at the times the relapses happened, but obviously pushing through and studying while dealing with them wasn’t the wisest idea!

The first year I made the decision to overlap two modules, mostly through necessity as they were both in their final run and required for my degree! This wasn’t the wisest decision I ever made; although those two courses still only counted as part-time hours of study, studying two different modules at once, particularly with an illness such as M.E. is decidedly difficult. The fact one involved programming, which I loved, but took up a lot of time (and therefore energy) coding and debugging the code, didn’t help matters either.

After that first year I made the decision that I needed to diversify my degree choice; most of the computing modules involved programming, and I knew from the experience of my first module that, although I absolutely loved it, working code to a deadline while trying to pace myself, didn’t really work. I’d get too absorbed in trying to get it working that I’d spend longer than intended doing it and feel the effects quite severely for hours, if not days after! And so I changed my degree to that of Computing, I.T. and Business.

From then on, despite several more relapses, placing me back at the severe end of the M.E. scale, things were more manageable. The great thing about the Open University was that I could study where I wanted, when I wanted, wearing whatever I wanted. And so I could plan my day around studying; allocating those times I felt at my ‘best’ to studying, and then resting or doing less energy consuming activities at other times.

Over the seven years I spent doing my degree, from my third year I blogged about it keeping a record of the highs and lows. At times I’ve been brutally honest about my struggles, both with illness and the things life has thrown at me during those years, including the grief of losing family members, and how the support of my friends (both online and in real life) and family was absolutely invaluable, and if I’m totally honest, probably the only reason I managed to stick it out at one or two points! You can find all the blog posts under the category Open University if you’re interested in reading them, but I’ll provide a bit of a summary here including some of the things I did to make it manageable.

As I mentioned previously, one of the greatest things about studying with the Open University is that you can study anywhere, at whatever time suits you. Yes there were exceptions to that for things such as tutorials; mine were all either local or online, the online ones you could join in with from bed in your pyjamas if you wanted to as no one would see you! Obviously that wasn’t possible for the face-to-face ones though, although I did take a pillow to one or two of mine in order to minimise the pain from sitting in my wheelchair! Obviously there were also assignment deadlines to be met (although extensions were possible, I stubbornly refused to request any because I knew I’d just fall further behind and never catch up if I did!) and exams which had to be done at the set time.

For me I got myself into a routine fairly early on whereby I would often spend 2 hours either in the morning or afternoon, occasionally both, studying. Now I wouldn’t be studying continuously for those two hours, there would be rest breaks in there too. So my actual study time would be anything between 70 and 100 minutes out of those 120 minutes. And that would be my routine Monday through to Friday. Occasionally I’d study on the weekend too, if I had a deadline looming, and again that would be in a similar sort of way; a couple of hours with rest breaks when my concentration started disappearing or my hands started cramping etc. Most of my tutorials also fell on weekends, so I would attend those then too.

One of the most important things I did, right at the beginning of my degree, was notify The Open University about my illness. This meant in theory it would always be passed on to my tutors (which I believe it was), and they would support me the best way they could. I received comb-bound books which would lay flat because my hands often become so painful holding a book open is impossible. My tutors were always willing to offer extensions for my assignments, where it was possible for them to, and they were incredibly understanding if I couldn’t make it to a tutorial; they’d often email me the slides so I could catch up when I was able to.

This also meant I could sit my exams at home, write my answers on a laptop, and have rest breaks and extra time, providing I provided medical evidence that I needed it. This was a massive thing for me, especially as both of the exams I did fell at some of the most difficult times of those seven years. There is more details about the process I went through for getting the additional exam arrangements in this post here.

When it comes to managing tutorials, especially longer ones, I actually wrote an entire post about it here the main points of which are:

  • Make sure your tutor is aware of your illness and how it affects you. If possible be open about it on the forums too, so your peers at the tutorial also know a little about it. This means there’s less explaining to do on the day and they’ll be more understanding if you need to leave early or have a break!
  • If necessary go in your wheelchair; not only does it conserve energy but it also means you know you have the support you need to sit there for the tutorial. Take cushions as well if that helps!
  • Take a packed lunch, drink, snacks and spare painkillers. Most people tend to wander off to the cafe or wherever to get something to eat or drink, by staying in the room you can get a bit of quiet, rest time, while they do that. And having some spare painkillers means should you need them, you can take some and potentially avoid leaving early due to the pain.
  • Take some headphones for your smartphone with you. If you’re left alone during the break it can be nice to have some relaxing music to listen to rather than resting in silence however welcome that is. It also makes the time pass a little quicker!
  • Only take the minimum amount of books needed. The more books you have to carry and organise, the more energy you consume!

I found revising for exams one of the hardest parts of my time with the OU, namely because they always fell during particularly tough times in my life. But I did manage to find some things which helped me with the revision. You can find the full post here but I’ll put a summary below:

  • Make a plan, even a basic list of topics to cover which you can tick off can help alleviate some of the panic as the exam date draws nearer!
  • Look back through previous assignments; all your course work done throughout the module are essentially a wealth of revision notes already made. Make use of them.
  • Use earplugs, if you find noise a real distraction, I can’t recommend ear plugs enough. They allowed me to study and revise when I had very noisy neighbours for years while I was studying.
  • Take rests when you need them. It can be so easy to get caught up in the exam pressure, but it’s important to rest and not push through if you’re to retain the information you’re revising.
  • Listen to advice; sometimes friends and family really do know best!
  • Find the best method for you; for me just reading wasn’t enough, I needed to write things down again in order to absorb them. Do whatever makes it stick in your mind.
  • And whatever you do DON’T PANIC! You’ll be fine.

I went through many difficult times during my degree, in fact in my fourth year I had a complete crisis of confidence and came incredibly close to quitting entirely. My health had hit the worst it had been for years, and I’d lost my Gramps as I was preparing my final assignment for that module and approaching the revision period. I blogged about it in a post summarising my time with The Open University, without my friends and family I would never have got through that time, and I probably would have quit my degree.

There were also many times I questioned why I was doing it. Why was I working towards a degree, when my health was slowly (and sometimes not so slowly) declining, and in all likelihood I wouldn’t be able to put it to use at the end of it anyway? I actually wrote an entire blog post about the question of why, just so I could look back on it when I was feeling that way. It turned out there were many answers to that question but the main one was to prove to myself that my illness hadn’t taken away my brain entirely, even though at times it feels like it has!

It took me seven years of part-time study but I did eventually gain a degree despite having only a single GCSE to my name prior to that. It just goes to show that with sheer determination and a lot of support from the university itself as well as friends and family, an education can still be had. I’m not saying it’s easy, in fact it’s far from it, which is why I did my utmost to blog honestly about it during my time studying. I didn’t want to sugar coat it. But it does prove that no matter what life throws at you it is perfectly possibly to achieve your dreams, for me getting a degree was one of my dreams. I know at times I thought it was an impossible dream for me but despite some significant relapses, difficult times and almost giving up, I did it. And hopefully some of the things I learned along the way, which I’ve assembled together in this post, will help anyone else thinking of doing the same.

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1 Comment

  1. What a great post! So many useful tips in here. You’ve had such an incredible journey. I am glad you eventually were able to get your degree despite this awful illness. I miss learning and teaching… so this post has been quite inspiring. Thank you for sharing your story.

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