M.E Help

FitzChivalry

Hello all

im a 16 year old sixth form student and i've recently been diagnosed with M.E, its totally shattered my life.

I used to be really good at sport and physical activities ( I'm almost a Black Belt in Karate) but since i've been diagnosed its all stopped, i cant even manage 10 mins on the treadmill any more.

Is there anyone out there who knows any information that could help me and any benefits i qualify for?

Many Thanks in advance.

Jack

somebody_else

In the first instance, I would suggest contacting your local CAB. And then look up the contact details for your local ME Association.

You might want to join us in the Fibromyalgia thread - may not be the same condition (and I don't have it) but the symptoms are very similar.

FitzChivalry

Thanks i'll contact the CAB tomorrow.
Is there anyone else with any insight?

nanokitten

You need a benefits assesment (CAB can do this).
If you qualified for some part of DLA you may also be able to qualify for other help such as help at college, equipment grants to help you stay in college... As the rules for claiming benefits are very compex you must get someone who knows what they are talking about to help you fill in the forms (such as an independant benefits advisor).
If you managed to get the higher rate of moblity (long shot probably if you can go on the treadmill for 10 minutes) you could learn to drive at 16.

more info on help for disabled people in education here, http://www.direct.gov.uk/en/DisabledPeople/EducationAndTraining/HigherEducation/index.htm
or
http://www.skill.org.uk/page.aspx?c=14&p=147

keelyjrs

Oh b****er, I just deleted my post lol... I'll try again..
go to these links for very good, current and accurate info and support
http://www.nmec.org.uk/
http://www.afme.org.uk/

Also go to your local DIAL http://www.dialuk.info/, they are often more help than the cab as they specialise in disabilities. Get yourself a social services assessment to see if you need any help from carers or an occupational therapist who could help you with adaptations in your home.

Ask your GP to refer you to a specialist ie a rhematologist or neurologist and get some physio. Teach yourself about pacing and graded exercise, the 2 most common phrases you will come across!!

Most of all, get yourself some support whether it is online, or visitng a local group. You will need to have people on hand who can understand just how rubbish you feel sometimes. I also recommend you read the spoon theory.. i'll try to find a link and post it later for you

gentle hugs

Keely (fibromyalgia sufferer)

keelyjrs

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Ames

I was diagnosed with ME when I was doing my GCSE's, and after a few years out I managed to get my A levels. If you want to chat about anything just ask here or in a pm. I know it can all be a bit overwhelming at first, but the links and advice you've been given are great. I highly recommend DIAL.

lollipoplady

I also agree with everything everyone has posted above.

I would also add that the Disability Help Line (part of the DWP but they actually know what they are talking about) on 0800 882200 are also very good and know their stuff. You will get through to them and get instant advice.

Take one step at a time - one day at a time and you will get through this but it will take time.

MissLauren_2

I've had ME since i was 13 (only recently been diagnosed-took 8 years!) and missed out on my gcses but have since gone on through distance learning to do my AS levels and am 1.5 years into an OU psychology degree and aim to also complete a health & social care degree- I've also managed to do alot of homebased charity work so even though it looks bleak and can be overwhelming, good can still come of it (i would never have chosen the degrees im doing if i wasn't ill and would never have met all the the amazing people i have through the OU and my charity work so feel fortunate enough to have found something i enjoy!)

As for benefits etc- I would recommend CAB or given your age, you could go and see a connexions worker to help with benefit and other life choice based advice

There are also various ME charities that will have information help and advice including ME Association, Action for ME, AYME (Association for Young People with ME) and Tymes Trust (THe Young ME Sufferers Trust)

Hope you manage to get your benefits all sorted out x

Valley's_girl

Hi I been diagnosed with Me for 6 years have a look here foggyfriends there is plenty of tips and they are a friendly bunch like here.
What I do is pace myself if I need to rest I will.
Hope you feel a little better soon.
Best wishes
Ally x

Strike_Team

I've had ME for 18 years. I'd forget the treadmill, gentle walks and other light activity are much more appropriate for ME. You need to learn not to overdo it, so you don't do too much one day and end up flattened for the next 3 days. The graded exercise "treatment" has caused more than a few people to relapse badly through over-exertion. Avoid it like the plague. Sunlight and healthy diet help too, as do supplements - I take Zinc, Magnesium and Cofactor Q10.

Island of Fog is an ME message board I'm involved with running. Feel free to pay a visit.