M.E Help

MissKate1986

I am 22 and have had M'E since I was 13 & left school at 14


I really would give the treadmill a break your end up over doing it and suffering.

Every time I get energy I abuse it then pay for it.

You will forever hear "Pace yourself" believe me its easier said then done!!

Do you have anyone to help with the forms?

Penny-Pincher!!

I would ask whom ever diagnosed you. An ME nurse would be ideal in pointing you in the right direction. Your consultant should be able to help with any medical proof letters requested etc.

PP
xx

fealey

hi there.

i don't suffer from the condition, however my partner of 18 months was diagnosed when she was 17, as a result of glandular fever (she's now 20)

of course, life is a struggle for her, as for most of ME sufferers.

everything varies on a case by case basis, however she receives :-

DLA (Disability Living Allowance) for which she has been rewarded the HRMC (higher rate mobility component) - This was assessed on the basis that she struggles to prepare and cook a meal each day, and has severely reduced mobility, unable to walk for 100 metres without suffering excruciating pain.

she chose to swap the HRMC for a vehicle on the 'motability' scheme, which provides her with a fully maintained car in order to help her get around, as well as a Blue Badge for parking. This is worth around £250 per month, so you have to weigh up whether the car or the cash is going to be more useful to her.

You should look at a Diamond Travelcard also. This allows for free transport on buses (after 9.30am and before 11.30pm)

As we don't earn a lot, she is looking into Housing Benefit, which is pending.

For her studies, her University provide a fund for disadvantaged and disabled students who need financial help for the day to day costs of attending higher education called ALF, or Access to Learning. This is discretionary *I think* and comes from the moneypot of the university itself.

She also receives help by means of DSA, or disabled students allowance. This means course materials and essentials to your particular field of study are subsidised or refunded. for example, course books are refunded by presenting a reciept, and she recieved a laptop and dictaphone to help in lectures due to low low levels of concentration (err, sorry about the length of this post)

her university also provide a support worker who helps note-take in lectures, and has a weekly meeting to see how she is getting on.

The Bath Mineral Water Hospital (it's a name, not some newfangled way of pouring Vittel on your injuries) have an excellent excellent ME specialist department who have helped with lifestyle management. May be something similar local to you.

My Other Half, or OH on these forums has improved in recent times. She's persevered and not let other people's attitudes get her down, and not only is she a top performing Uni Student, she's funny popular, beautiful and going to be a huge success at life. We're engaged, and expecting our first child - so anything's possible!

My frank and honest advice, from a non-sufferers point of view:

Be Open Minded to any professional advice, something may sound silly, but may well work. (my OH fills in a chart of her activity every day in pretty felt tip pens. It helps her see if she's doing too much one day, or not enough another. the sense of routine is therapeutic for her and has made a distinct difference)

Ignore people who aren't so open minded as you. Don't let them get you down.

Take it easy. Do as much as is comfortable. Doing more than your body can handle will make your recovery longer and more stressful. It's about doing something, but not too much each day.

Talk to people. Your close friends, and loved ones. You'll soon discover who the people who matter are, and they'll be instrumental in getting better.

It's OK to be tired, or not want to do something, but at least try sometimes. (within reason)

It's not all in your head. But if you stay positive, you'll find you can achieve anything you wish.

Be mindful. Live in the now. What's happened in the past has happened so don't dwell on it. Likewise, worry too much about what's going to happen in the future and you'll never be able to concentrate in the 'now'

Say to yourself "what's the worst that will happen?" If i don't do the ironing, or hoover the lounge, or whatever.

I hope this helps. Like I say it's different for everyone, but good luck, and stay positive

Miss_Dior_x

I suffer from M.E and have done for 3 or 4 years. I'm now 17, so a similar age to you, and in my 1st year of college, although I'm only managing one afternoon a week at the most. I used to love sports too, and found it really hard to come to terms with not being well enough to carry on. You should take a look at www.ayme.org.uk (association of young people with ME) they have lots of information on there, and a message board for members to chat, which lots of people, including myself use every day. It's a really supportive community and I don't know where I'd be without it. It's good just to speak to people who understand what you're going through. Feel free to PM me if you like
Emma.

M.E.

As you can tell from my MSE name I too now live with M.E.
If I could turn the clock back (22 years in my case) I would rest, try not to worry, have very gentle stretching exercises to keep muscles from wasting, take Blue Badge (was orange in my day), eat fruit, fish and vegetables and drink plenty of water.

Liken yourself to a vintage car, worthy enough to restore to glory but needs tender loving care, no high speeds, keep body work polished but not overworked, keep underwraps until required and then only short calm outings. To maintain the engine feed with good fuel and try not to overwork the battery because without that small amount of energy to start the engine everything stops and gums up.
If this means you have to act like a gracious but glamourous granny, so be it. You will recover and learn to live within your energy levels. Prioritize your energy and use it for what you want, not what others demand.

OSFA

FitzChivalry wrote: »

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

You are going to have a job on your hands getting any help with benefits.
I suffered with M.E for over 8 years. I finally got better by myself.
I had to fight like hell to get the benefits I was entitled to.

Best of luck to you. If you need any support with your condition then send me a pm. There is light at the end of the tunnel. Can I advise you to let your body do what it wants. DO NOT PUSH YOURSELF!!
Best of luck.
From a fellow M.E sufferer

OSFA

M.E. wrote: »

As you can tell from my MSE name I too now live with M.E.
If I could turn the clock back (22 years in my case) I would rest, try not to worry, have very gentle stretching exercises to keep muscles from wasting, take Blue Badge (was orange in my day), eat fruit, fish and vegetables and drink plenty of water.

Liken yourself to a vintage car, worthy enough to restore to glory but needs tender loving care, no high speeds, keep body work polished but not overworked, keep underwraps until required and then only short calm outings. To maintain the engine feed with good fuel and try not to overwork the battery because without that small amount of energy to start the engine everything stops and gums up.
If this means you have to act like a gracious but glamourous granny, so be it. You will recover and learn to live within your energy levels. Prioritize your energy and use it for what you want, not what others demand.

I got M.E when I was 22. I am now 43 and still suffer although I consider myself to be 90% better I know I have to live with what it has left me with. Dizziness being the main one.

Melissa101_2

Im new to this but i felt i had to register as i no that other peoples experiances help you to live with M.E as so many ppl dont understand what its like.
Theres a new video on the www.meassociation.org.uk website and i would recommend anyone with ME or who wants to try and explain ME to watch it is it speaks volumes!!
I'm now 22 and was dignoised 3 years ago, but it took what seemed like ages to get answers to why i was so poorly. It always seems to affect the people who are so active, i had horses, dogs and loved the outdoor life, i now accept that that was my old life and to focus on now not the past as its too upsetting.
Pacing is definatly the key (its hard to do especially if you were so active) and i have learned to accept that i have to manage on working just 20 hours a week as i couldnt physically or mentally do anymore, but i no there are alot of people worse off.
I have never been able to claim any help with benefits as the illness is so varied i was always worried what other people would think. I was so resentful for a long time that i couldnt claim any help but i have learned to just keep going.
i also take veg EPA and EPA fish oils which do help with the concentration "brain fog", the main thing that has helped is family support and i no that i may have this illness for ever but if i can try and live with it and have less relapses then the future looks brighter!!
If anyone wants to PM me im happy to chat if i can help.
x

maytaurus

Some ME/CFS info here
including up to date info of High court hearing
http://forums.moneysavingexpert.com/showthread.html?t=1452441

foreign_correspondent

I would advise talking to your local services - some places like bath and QMC at nottingham have specialist staff to support young people with ME, I would also advise joining AYME as many others here have done...http://www.ayme.org.uk/

Ease up on the running and stuff, but do prioritise keeping social contact up, seeing friends etc, as many young people with ME find it is easy to become isolated, which does not help recovery or coping with the condition.

Best wises,

fc x