Part of the 'special class'

[dmadeleine]

I was 13 when I was diagnosed. I had really bad flu that lasted about 3 weeks, and i never seemed to get better afterwards. After about 4 months of just collapsing and flopping everywhere like a dead fish and being in so much pain, the doctors referred me to the pediatrics department at the hospital. No-one really took me very seriously, they thought that it might just be a hormone imbalance because I was still growing. It took about 6 months in total for me to be diagnosed, and it has been three years and i'm still ill (which is really rubbish -_-).

The worst thing about it was not being able to control my body. Some days I would be fine, and then the next I wouldn't be able to move from the fatigue and pain. It got really bad when I went on a school trip at a summer camp. I was told that I would only do the activities that I was able, however the instructors didn't believe that I was ill because I didn't show any signs of illness. At that point there were also other classmates that were visibly ill so they thought that I was attention seeking. About a three days into that trip due to the stress and exhaustion my hair started falling out. Things started to go downhill from there. I've been in wheelchairs and gone to physiotherapy, and in the past few months I've slowly started to get better-ish.

What has really helped me is that in my class there are other people with varying illnesses and disorders (to name a few: bilateral telopes, bi-polar, hyper mobility etc) We have about 10 people in my class that are known as 'special' (including me), we also have some dyslexic people so we are known throughout the school as the 'special class'. It has been an ongoing joke between us when comparing medication and how many treatments we've been to and that put together we have tried all of the different areas in the hospital. Being with them has really helped me as it makes me feel like there are other people that need help with some things too. With this being my GCSE year (year 11) we've organised study groups to make sure everyone has all the notes for the subjects as lots of us have to miss some lessons due to being ill. My aim for this year is to do all of my exams, and to hopefully pass! I will post my results when I get them in August (whether they are good or bad), do any other students out there have any advice for coping with exams and school? I would be really grateful Best of luck to all of you!

[mirran1]

I think you are really brave. I've had ME for 18 years, and it took me a lot longer to b

e as brave as you. Initially I was scared to admit how I felt, because all the tests came back normal, I had been a qualified nurse for 25years when it hit and really scared of what was happening to me I tried to ignore it and made up all sort of excuses, until I realised that I couldn't remember what any of the drugs where for that I was giving out I got to the stage that I had to take a MIMS directory with me to know the drugs that I had been giving out for years. That was scary, cos part of my job was to know the interaction between medicines, when I realised how bad my memory was, coupled with the extreme tiredness and other symptoms, I went to my GP I was lucky, he believed in M.E and did all sorts of tests before I was reffered to a specialist. I still have problems with, joint, muscle pain, also lack of concentration, headaches, really bad sweats and at times wanting to just end it all. I have learned to take one day at a time, what you are able to do today, is not what you can do tomorrow. I hope you manage to excell in your exams, but remember, nobody ever died from failing an exam. Good luck and best wishes.

[edmeshscot EDMESH]

Hi dmadeleine

I got ill when I was at school too, so can sympathise.

The most important thing, I think, is for you to listen to your own body and not be pushed into more than you can do. If you're falling behind your schoolmates, it's hard but it's not worth risking your health over. I remember missing my Higher exams due to a relapse, which was devastating at the time but ultimately didn't matter too much in the end (I got the results on appeal).

I'm glad that you are starting to feel a bit better and that you have a supportive peer group. I wish I had had better understanding from my schoolfriends at that time, so I think it's great that you do.

Though it's written from a university standpoint, you might find it helpful to read our article on studying with ME at edmesh.org.uk/2012/11/study....

Also there are good sources of support from:

- AYME ayme.org.uk/

-TYMES Trust tymestrust.org/

- Action for ME actionforme.org.uk/children...

I wish you every success in future. Good luck in your exams and take care.

[dmadeleine]

Hi! My aim now because I have been so ill and can't partake in most physical activities, is to try and improve my academic studies as much as possible. If I can do that, then when I am better I will have all the things necessary to obtain my goals. The most important being to get a degree at university, as I would really like to teach abroad when i'm older. But I won't risk my health, so don't worry! However it is because I don't know what I will be able to do tomorrow that is making me prepare for the long run, because then when I pull through ME I will have something to start rebuilding a life off. I hope this makes sense Thank you for all the support this website has given me, seeing other peoples stories was really inspirational and has helped me through some really difficult times. I'm glad I found it when I did