A couple of weeks ago I was tweeted by a 14 year old who’s consultant wanted her to return to school 3hrs a day and who was worried she wouldn’t cope. Because of the 140 character limit to tweeting I asked her if I could email her more suggestions, as I still haven’t received her email address here is what I would like to have said. Many apologies that it’s been so long coming, I’ve had a lot going on recently, hope it’s not too late.
My first suggestion would be to ask if you could start off just 3 days a week Monday, Wednesday and Friday. That way you could rest after each day and build up attendance gradually if you find you are coping alright.
Secondly ask the school to let you spend break times in a quiet, peaceful (warm) place like an empty class room so that you can get quality rest between lessons. You might want to spend time with your friends, and if you’re having a good day perhaps you can, but you might need the option to be restful sometimes. Explain to your friends that although you’d love to spend time with them you need to rest to be able to get through the day. A 5 minute relaxation/breathing exercise could help settle you down at break times to help refresh you for the next lesson.
At school (or anywhere really) always aim to do everything as relaxed as you possibly can. Try and avoid any kind of exertion or the feeling that you are having to force yourself to do something. Never rush around, give yourself plenty of time to get where you need to be. If you find you have to fight to concentrate, allow yourself to drift off for a little while, you can always try to catch up later. We are taught in school that we should try hard all the time, but with this illness we really have to be careful about how much effort we put into things. Trying too hard will make us feel worse. If you find that you are always having to struggle just to get through then you are doing too much. I call this relaxed approach to life ‘the way of the sloth’; this animal is a great example of how to get on with life slowly and gently (watch this clip). I guess most teenage life is a lot more monkey paced, but sloths only have a ¼ of the muscles and energy of a monkey so they have to go slow.
If you really think that any school is way beyond you right now ask your carer to help you write an activity diary so that your consultant can see clearly what you can currently cope with and how different school life might be.
If you’re worried about what your school mates might think of you, try to plan for any difficult encounters. Think in advance about what you’d like people to understand about the illness. What could you say to someone who thinks you’re lucky having so much time of school? Or who thinks you’re lazy? Could you ask your form teacher to show your classmates a brief You tube clip explaining what it’s like to have ME? Could you write something about what it’s like for you, what you have to do to cope and how people can help? Maybe you or a friend or a teacher could read it out to them. If classmates refuse to understand or are deliberately cruel try not to take it to heart. Remember it says more about what kind of a person they are rather that anything about you.
Facing the challenge of living with this illness will teach you all sorts of things that will be useful to you in later life. People who are lucky enough not to have challenges like this can also miss out on learning important things.
If I haven’t understood your concerns properly, let me know more about what you are going through and I’ll see what I can come up with.
Can anybody else add to this advice?