Being young and severly disabled

Chronic disabilitys are always hard to cope with, often worsened by stress. This artical was prodomently written for people with ME but my be usefull for any one suffering with a chronic or a severly dibilitating illness.

ME is a debilitating illness that affects hundreds of thousands of people across the UK and world wide. Although there are specific age groupes who are more likely to be affected than others, ME can affect any one at any point in life male or female. There are a huge number of sufferes who are under 26 and as little as 4 or 5. As you can emagen, ME at this age can be very hard to deal with as you have the added stress of school and education, moving out, growing up, forming relationships and a whole host of other things that you can miss out on being young and having ME.

Things change as you get older, and obviously different situations have different problems, but I though I would put together a wee support pack for people under 26 coping with ME/CFS/FM/PVCF and so on!!

I think I think I cope well with my M.E, but I am 19 and dont have so many worries about education. I try not to let it stop me from doing what I want to do as long as Im sensible. If I have a good day, then I will see my friends, or pop out to do things. But again this changes depending on your ability level, support net work and depression. I have tried to maintain a healthy out look on life no matter how hard things get.

I spent about 3 months at 10% and am currently modularly to severely affected so I am able to get out and about with out too many implication on my health.

I think there is a huge difference in the way you have to cope with M.E. when youre young. Throughout your younger years you make a lot of choices and have to do a lot of growing up. When youre under 16 you miss out on GCSE, on social activities, meeting members of the opposite sex and learning about life on the hole.
This isnt to say that you dont know whats going on! It just means you might not be able to take part in it all. Your carers/ family can help you to do the things you want to. Depending on your ability, a good way to make friends is join a group for people with M.E, find some pen pals or just make sure you keep in touch with friends from school.

Friends at younger ages, although they come and go, are very important, and when affected by M.E. it can be hard to maintain the social standards that every other kid seems to be doing. At a younger age, friends are not so interested in people who can not come out for a laugh, or who need to have a wheel chair to get about. But by keeping the friends you love close to you, letting them know whats going on with you, phoning, texting or E-mailing is a good way to maintain a friendship if you cant see them all the time.

There are lots of lessons to be learned at secondary school, about respect, social behaviour, how to react in social situations, interaction, making friends as well as the intellectual aspects. Lessons like this can be maintained by as much social contact as possible, or even just sitting down and talking though the subjects with the suffer. Missing out on lessons like this can make it hard to form relationships in future years. It might be possible to make friends though a charity like AYME (The Association for Young People with ME) By making phone calls or possible going to meet ups you can practice meeting new people and getting to know them in a trusted and comfortable environment.

The academic side can be kept up with in some cases through home tutoring, and if not, theres no harm in waiting a few years and starting again when youre ready!

Younger people with M.E. need to be treated as normal people, told off when misbehaving, and praised when doing things right or well. They shouldnt be excused from detention and shouldnt get special treatment where discipline in concerned.

Missing out on lessons learned at school doesnt cause irreparable damage but it does mean that learning social skills might be harder.
I dont think for one second that not going to school means you dont understand how to react in social situations, in fact I think most M.E. suffers become rather good at it after having to see lots of doctors, talking to benefits advice people, social workers, carers and family. But I do think it is important to keep friends as close as possible. Its very easy to get depressed when the going gets tough, but if you can talk to your friends every now and then it brightens even the dullest days!

Post 21 the pressures are different again, your expected to learn how to drive, start to experiment with sex and relationships, go clubbing and out drinking. But when affected by M.E. this can be almost impossible. Although at this age, good friends are likely to stick by you more. Again, by just keeping in touch with people, it is easy to keep up with what is going on. Some people would be able to join in, or organise a quiet night in with some friends. An hour at the pub can be fun too! Missing out on stuff at this age isnt so hard to cope with, once you have reached an age where you can make decisions for your self your able to control things better. Its still very hard work and can be depressing seeing people go off to uni and set up home with partners, but your time will come!

People at higher ability are likely to be able to interact more at this stage a little less clubbing and more spending time with close friends.

M.E. is a devastating illness, and is very disabling to both people who are severely affected and those who are improving and can do a few hours of activity a day. Having said that, it doesnt mean life has to stop. I cant speak for much younger sufferers, as I never had to cope with the pressures of being at primary school and living with M.E. However I do have a theory to help both children and young people with M.E. to keep going:

- Take your time; we still have goals, and though it may take longer to reach them, there is nothing stopping us from aiming high. Write them down and look them up, dont build your hopes up .. Keep a realistic view on life and look forward to achieving your dreams.

- Look for positive things. Its very very easy, and I have been there, to think what have I ever done to deserve this?, or to dwell on the things you cant do. The good things are out there, they just take a little longer to find. If you are able to brush your own hair, thats great! Keep going and it a few months you will be able to tie it back by yourself. Always look for the light!!

- Listen to your body, it doesnt matter what doctors say. With being a young sufferer, I know what its like to be looked at like an idiot by doctors, feeling intimidated and small, but youre the only person who knows what is going on inside you. They cant tell you how youre feeling, or what you should be doing; you have to stand up for your self!

- Be grateful, this might come under the look for the good thing category. but! Although M.E. is painful, hard work and miserable at times, its not going to kill you. We have to be thankful that although we might not have the life we always dreamed of, at least we have one. Use your good days wisely, have fun!! And do what makes YOU happy! :-)

- We still have feelings, youre still able to smile when you hear that song you love, laugh when you watch a good film, cry when you need a hug, get that tingly feeling when you see that person you love! We can still be happy!!

- Make friends, this is my last piece of advice. I lost a lot of friends through my illness, when I stopped driving people just didnt want to know. When I was too ill to phone them or see them they just left me. But at least I know who my REAL friends are now.
I have also made so many good M.E. friends who would never leave me. I made these friends though M.E. organisations and web sites, such as M.E. Support! Its great to be able to say bloomin heck I feel rough! and for them to turn around and say I know exactly how you feel rather than, you look alright to me!



I hope my story has inspired you a tiny bit! Young sufferers need not lose their youth to M.E, just keep positive! You might never be 100% again, but who said you couldnt have a full enjoyable life at 80%?? NO ONE! So get out there, be sensible, look after your self, do what your body asks, sleep tons, and follow your dream!