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Action for ME
InterActions Monthly Update
August 2000
Two articles from teenage members of Action for M.E. about coping with study
Studying With M.E. by Sarah Smith
I was 14 and in the third year of secondary school when I became seriously ill with M.E. Two years previously I had Glandular Fever and since then I suffered fluctuations in my health. I would be well for several weeks and then be ill again. In May 1993 I became too ill to get out of bed and M.E. was diagnosed. In some ways I was lucky, as my decline in health was well documented by both my GP and my school and there was never any question that I was genuinely ill.
By September 1993 I wasn’t recovering and it became apparent that I wouldn’t be returning to school for a long time. I was assessed and was allocated a home tutor for five hours a week. I was still unable to do any academic work so she brought her water-colour paints and let me paint. Countless times I was too ill to do this, but she was very patient and gradually I could do more at a time. It was incredibly hard to go from being an academic student to only being able to hold a paintbrush for a short time. Thankfully there was no pressure from the school or my tutor to produce any written work and they let me recover at my own pace.
As I improved the school provided me with a lap top computer as I found, and still do, that typing is less painful than writing. In April 1995 I managed to attend school for one hour a week to gain the R.S.A. CLAIT 1 certificate (Computer Literacy and Information Technology). I worked with my tutor in a quiet corner of the computer suite and I got the certificate in the Summer.
September 1995 proved to be a big turning point. I was 16 and therefore no longer legally required to attend school. The funding for my home tutor was removed and I was left with no educational support. The school offered to let me attend GCSE classes, but I was still too ill for this to be possible. I contacted the local college, Tresham Institute, to find out about their courses. They suggested I contact their Open Learning Centre. This is a service which offers a wide selection of courses studying from home by correspondence. I contacted them and it proved to be the perfect solution. I started in October 1995 with GCSE Maths. I could work at my own pace and could take as long as I wanted to complete the course. My tutor was only a phone call or letter away and I could arrange a tutorial when I needed to.
I was getting on so well with the course that, in February 1996, I registered for GCSE English. I was still unable to write by hand for any length of time, so essays were difficult. My tutor was very helpful and she found out that most of my coursework could be typed and only one piece needed to be hand written. I therefore completed the work using my computer and then, over several days, produced a hand-written copy. The oral sections of my English course were done with evening-class students at the college and my tutor took me there and back herself. Everything was done to make studying as easy as possible for me.
In the Summer of 1997 I was ready to take my exams. The Examinations officer was incredibly helpful. She said that I could take my exams at home or at college, depending on how well I was. I decided I was strong enough to attend college and she arranged rest breaks, supervised in a quiet side room, for all my exams. I was allowed extra time, as my reading and writing is slower than that of a healthy student, and I used a computer for my English exams. I gained the highest grades available (A* and a B) and received the Open Learning Award for my achievements!
In September 1997 I was well enough to study GCSE Double Science as a day student for 9 hours per week. The tutors were very helpful and I coped well by having rest breaks during lessons and going to bed as soon as I got home. There were times when I was too ill to attend but I still managed to complete the course. During 1997 I also studied English Literature through Open Learning. In the Summer of ‘97 I took my exams, again having rest breaks and the use of a computer, and I achieved three A*s.
Last September I started A levels in Maths & Statistics as a day student. Unfortunately I suffered a relapse and had to give this up. I am now studying GCSE Accounting through Open Learning and I will take the exams in June. My health is improving again and in September I hope to study for the A.A.T. (Association of Accountancy Technicians) qualifications. This will give me a professional qualification and I hope to do accountancy work part time or from home.
This is the advice I can offer to other “M.E. students”:
Be Realistic. Don’t kid yourself you can study for a minimum of two hours every day. It’s impossible to predict how you’ll feel from day to day, so do what you can and don’t feel guilty for not working.
Be Sensible. Make sure you take regular rest breaks, however tempting it is to finish an assignment!
Be Honest about your Health. Admit that you need help and ask for it. Tutors can only help if they understand your difficulties.
Be Good to Yourself. Don’t spend every ounce of energy on study. You need to relax and enjoy life as well. A trip out on a good day is more important than getting overwhelmed with work.
COPING WITH M. E AND STUDY
My Story; Louise Rock.
In November of 1995 I undertook one of the hardest decisions of my life. At fifteen years old I dropped out of my school class , leaving the friends I had, the grades I had attained and I went to rest.
In the past year I had felt like I was watching my education slip through my fingers as doctors and parents used every incentive they could think of to get me to attend school.
I used to sit in bed watching the time go by, thinking about the classes I was missing and the work that would be brought home to me. The work which I had no strength to do, falling further behind.
Anyone who has been through this knows that it hurts to see your education slipping away along with your friends and your future aspirations. Feeling a desperation to stop this decline into an uknown abyss but not knowing how to. Education can quickly become a nightmarish vicious circle... Absence means catching up when better, catching up means that you feel worse and so are absent again.
Throughout January of 1996 I toyed with the idea of re-doing year ten in September, at first I thought that it would be far too humiliating as I would be a great deal older than anyone else plus I would see the friends who had forsaken me the year before, constantly reminding me of my losses, my ilness and my inability.
However the more I thought about it the more it made sense. I could have another chance at my GCSE's even if it did mean that throughout my scholarly life I would be a year behind everyone else.
In 1996 things were much better for me I re-started year 10 with understanding teachers and a home tutor who helped get me work from school when I was absent.
I did not start year 10 going to school daily, firstly I went to school for four periods a week and I gradually built that up, to whole days. This type of selective graduated study, can work.
It gives a sense of you being at school and doing some form of work but also means that you are not thrown in the deep end making your ilness and time you take off school much worse.
When returning to school do not let the teachers bully you to attend, or do this or that piece of work.The most important thing is to let them know you have M.E and understand exactly what it means in relation to your schooling. It really helps to have an understanding carer who is willing to talk to your teachers on your behalf (Thanks Mum!)
The most important thing for a student with M.E to have is contact with the outside world.
In your teenage years, many of us discover our own opinions and begin to have some form of social life, if we can't get this it depresses us , which frankly is not going to help anyone.
At this time I discovered penfriends, through M.E publications. Friends who suffer the same way are great to have. They pick you up when you're down, and they understand exactly how you feel, as they have been through it before you can also reciprocate this kindness when they're depressed.
Something that you should never do is push yourself ignoring the signs that you are ill, to make people happy. You must tell people of your predicament so that they can understand your limits, they will respect you for it.
When you study at home.I have learnt that pushing yourself to the very limits is phyiscally and mentally draining. It is better to graduate your study to a timetable that does not push you over into days in bed. When you feel like you have had enough... Stop and rest.
Today through graduated study I manged to gain 5 GCSE's and I am currently studying for my A- levels. I am still not 100% healthy, in fact I take many days and half days of school off , but gradually I feel like i'm getting there. Don't be ashamed of going back to it later, or studying a different way than your classmates. Remember that education is flexible and if you have the confidence and willpower, you can get it to work for you.
Action for M.E., Po Box 1302, Wells, Somerset, BA5 1YE, UK
tel. (0)1749 670799
fax. (0)1749 672561
website: www.afme.org.uk
e-mail info@afme.org.uk
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