Living Life, Within the Limits of Chronic Illness

Category: Studying Page 1 of 15

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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The End of an Era

Seven years ago I embarked on what I knew would be a challenge, perhaps if I’d known just how tough a challenge it was going to turn into I wouldn’t have taken those first steps, but I did.
In 2010 I signed up to do a degree in Computing and Information Technology with The Open University.

Having only gained a single ‘B’ grade GCSE during secondary school, due to poor health, I wanted to prove to myself (and others) that despite being unwell, I could get an education, much like anyone else. Sure it might take longer, but it could be done. And so I began with a single 30 credit module, M150, Data, Computing and Information in October 2010. I really enjoyed the Javascript and programming aspect of it, however I also realised it wasn’t something I could pursue with my health the way it was. Although back then I was in better health than I am now, the stress of getting code to work and debugging it manually was making my health worse and so I realised programming courses would have to be avoided.

In February 2011 I started T175 Networked Living, it was a required module for a computing degree, and on it’s final presentation. As I was managing M150 so well I figured a few months overlap would be fine. However it turned out two 30 credit modules is an awful lot of work when you have an illness such as Myalgic Encephalomyelitis! And so I had a minor relapse, nothing major but the amount of things I could manage reduced as symptoms increased a little. But I managed, enjoying and completing both modules despite some extra illness to contend with.

It was at this point I made the decision to diversify into a second subject; too many of the computing modules were about programming which I knew I wouldn’t be able to manage, and so I changed my degree to a BSc (honours) in Computing & Information Technology and Business. Beginning with B120 An Introduction to Business Studies another 30 credit module in October 2011. Another enjoyable module, however I did learn that personally I didn’t enjoy studying business as much as I.T.

In May 2012 I began DB123 You and Your Money: Personal Finance in Context (30 credits). This coincided with the end of B120, however it was much more manageable than the overlap I’d encountered with M150 and T175. I learned so much on this module which was relevant to me personally as well as in an unfamiliar business context. It was a really enjoyable module, with the exception of learning about pensions which was just very complicated to understand! By the end of 2012 I had passed both B120 and DB123.

January 2013 things became a lot more challenging; I’d applied for Disabled Students Allowance and received the training for specialist software just as my next module, my first Level 2 and 60 credit one, began, and I was suffering from a severe throat infection. Under doctors orders to rest, I ploughed on reading my module materials, completing the two training sessions and starting my first assignment of T215 Communication and Information Technologies.  As a result I suffered a significant relapse, which left me studying from my bed, only able to be on the computer for short periods of time (which considering the module involved working with audio and video files, creating and editing them, made things extra difficult!). Despite this I managed a Grade 2 Pass, with good assignment scores throughout the module and on the End of Module Assessment too.

And so with 180 credits under my belt, I had reached the halfway point! Something to celebrate, although not too much as that could leave me unable to continue. In October 2013 I began B203 Business Functions in Context. I’d read it was a module with a large workload, and difficult to manage. Little did I know just how difficult that workload would be, with everything else life threw at me in the 9 months that followed. On beginning the module I knew it was going to be a tough one, the materials were more advanced and took more time to read and understand, some was dry and staying awake whilst reading it was a challenge. But I persevered, and managed reasonably well for the first few months. Personal circumstances early in 2014 left my health on the rocks with more dips in ability, and in May 2014 when my Gramps passed away I suffered a major relapse.

It was at this point I had a crisis of confidence, I came incredibly close to quitting entirely. With the funeral, my grief, and the relapse which left me struggling with the simplest of tasks, I just didn’t see how I could possibly sit an exam, pass it and go on to get my degree. Some amazing friends and family rallied round and managed to convince me I’d come so far I ought to continue. They were right. I sat my exam at home, with additional arrangements such as rest breaks and extra time, and with the encouragement of my tutor submitted a special circumstances form because the bereavement had affected my ability to revise for the exam. Somehow, and I really don’t know how, I passed. Only just but it was a pass. If you’re a regular reader of this blog you may remember my post about being disappointed, but I rallied and realised I’d passed in what would have been tough circumstances without my health being so awful. A wonderful study buddy in the form of a stuff toy dog called Brian also entered my life at this point, which you can read about here.

I had the summer off to rest and recover a little, slowly building up energy again and doing a few fun things before the new academic year began in October 2014. This marked the beginning of my first Level 3 module, 30 credits, T320 E-Business Technologies Foundations and Practice. A module which saw me have a desk and actually manage to work at it for a time! I loved this module, the practical side especially, despite it being some programming which at times left my health flaring up again, it was incredibly fulfilling; that sense of achievement when the code finally works is amazing! I even managed a weekend away in Skegness while doing this module, something I couldn’t have dreamed of the previous year! However things turned more difficult after that weekend away in March, as in the April my Nan passed away. I really don’t know how I did it, but somehow I continued with my End of Module Assessment despite my grief, another relapse, and her funeral. This time I didn’t submit special circumstances, and miraculously I still achieved a distinction grade pass!

I had June to January off, resting, decorating the living room and generally enjoying life a little. My health improved during this time, but come January I picked up a load of viruses and my health plummeted again. February 2016 marked the beginning of my final I.T. module, and penultimate one of my degree: 30 credits, TM470 The Computing and I.T. Project. That was another tough module, finding an acceptable project and then completing it while reporting about the management of it. It was completing different to my other modules and more a case of learning project management than anything else. That’s not to say once I started it I didn’t enjoy it – I did. The first few months of coming up with a project, defining the goals and actually getting started were some of the toughest, especially as my health wasn’t playing ball during that time. But as the module progressed, and my health slowly improved again I enjoyed it. In December 2016 I received my results; a Grade 2 Pass, which I was very pleased with.

Three months prior to the results of TM470 coming out I began my final module: B301 Making Sense of Strategy. A 60 credit Level 3 module, with a reputation of being very tough. And the first few months I found it was; my tutor marked harshly and focused on how difficult the course was to pass. The theory was difficult to get my head around, and the core component of critical thinking had been made a lot more complicated than it actually was. With a change of tutor around December, things improved immensely – the module suddenly became passable. Critical thinking was explained in such a way I could actually understand what was required in my assignments and thus improve my marks. I can’t explain how much difference having a positive tutor made. I was a nervous wreck about the exam, with my last one having gone so badly, I revised hard and did my utter best to pass it. Sat at home with extra time and rest breaks again, I felt it had gone fairly well and I was confident in most of my answers.

Results came out last Tuesday (July 18th) and I got 55% on the exam. Not the greatest score ever, however the grade boundaries had been lowered quite significantly and so overall I achieved a Grade 2 Pass!

This means, at the end of this 7 year journey, which has involved many moments of self-doubt, questions of why the hell am I doing this to myself,  and a lot of ups and downs with my health, I am graduating with a BSc (honours) in Computing & Information Technology and Business, Upper Second Class.

Yes, despite thinking it was beyond me, I have actually got a 2.1!!! 

To say I am over the moon is an understatement. I still don’t think it has quite sunk in yet, despite the balloon, cards and gifts my friends and family have lovingly given me. This achievement is marred by the knowledge some very special people are no longer here to see the completion of what I started. And there is also the disappointment that I am simply not well enough to attend a degree ceremony, but we will be celebrating as a family with more manageable celebrations at home. And the purchase of a mortar board in the appropriate colours so we can take some photographs which almost look the part.

If you’re reading this and didn’t get the results you were hoping for or expecting, here’s a quote from a post I wrote when I was going through a similar thing on B203:

“To anyone else struggling to come to terms with an exam result that was worse than expected, don’t worry about it. What’s done is done. If you failed and you’re offered a resit spend the time revising and know you can do it. Someone somewhere will always be rooting for you. And if you’ve passed but not received the grade you expected, wanted or dreamed of it’s not the end of the world. It may well feel like it but it’s not. Focus on the fact you passed. You can put those course books away and move on to your next module or the next stage of your life. You did it. You passed. That’s all that really matters.”

No matter what life throws at you it is perfectly possibly to achieve your dreams, I know at times I thought this was an impossible dream for me but here I am. Despite some significant relapses, difficult times and almost giving up, I have done it, I have achieved my dream! I’m not sure what’s next for me, but time will tell.

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The End of B301 and the Wait For Results!

How so many months have flown past! I’ve been busy finishing B301, writing assignments, revising for and sitting my (hopefully) final exam, and am now (im)patiently waiting for the results to see if (a) I’ve passed and (b) what class of degree I have achieved!

Post exam I’ve been a little unwell and feeling rather low. Slowly recovering physically but I’m still feeling rather lost – the question of what next? keeps arising. I want to get a job but finding one that is suitable; part-time, flexible hours, from home, that I can fit around patches of illness isn’t going to be an easy task and I really don’t know where to start with that one. So instead I’m focused on waiting for my results, having a bit of a break sorting things out that have been rather neglected while I study.

For example I am scanning into the computer all my university notes, in order to reduce the number of books and lever arch files that need storing – some cds or a dvd or a pen drive will be easier to store than 18 lever arch files! I’ll still have books and notebooks to store but at least it will reduce it’s size a little. I’m also in the process of planning redecoration of my bedroom. Anything to keep my mind off the wait for results while trying to regain as much energy as possible.

B301 as a whole has been a tough module, not least because my health hasn’t been great for the duration and as a family we had some tough times but I’ve made it through. A tutor change before Christmas was stressful but I can’t deny it made a difference to the wholeoutlook I had on the module, it went from rather negative with the focus being on it being difficult, and the failure rate being high, to more positive, with a tutor who believed we could pass.

My assignment results have been decent, with some of my highest marks, a bit up and down but overall they averaged out well. The exam itself seemed to go ok, I’d spent plenty of time revising and amazingly some questions came up on subjects I had revised. It was still a challenge being well enough on the day, and I used almost all the extra time and rest breaks I’d been allowed. That didn’t stop the following weeks being pretty bad healthwise though. However things have picked up a little again, and although I don’t feel I’m back to how I was pre-exam, I’m doing better than the immediate aftermath!

Results are due out in the coming weeks, so watch this space for news of that! I’ll also try and write a some more as I find things to write about; if theres anything you’d like to read about feel free to leave a comment and let me know! If I can write about it, I will.

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Results of TM470 and an update

It’s taken me a while to post this, B301 is taking a lot of my time and energy so I didn’t get a chance before the Christmas period which took more out of me. However I’m here now. At the end of November I got the results for TM470 through: a Grade 2 Pass! Really pleased with that considering how unwell I’d been at the beginning of the module!

Meanwhile on B301, I’ve completed two assignments and am about to start work on the third; meaning I’m almost at the halfway point! Hard to believe in 6 months time I’ll have sat my exam, and be awaiting my results which will hopefully get me my degree! Things have been a bit rocky with my health of late, intact as I write this I’m getting over a virus which has left me unable to study for a few days. Hoping I’ll be able to catch up soon!

Got my fingers crossed I’ll be able to update this blog more often soon, but for now I’m concentrating on my health and studies!

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