ME and DLA?

daska

cherub1965 wrote: »

my son has chronic fatigue syndrome,has for the past 2 years.he is constantly tired and if he goes out anywhere he spends the next day in bed and is in constant pain,musle aches etc.
we have just had the forms for DLA sent and reading it i'm not sure if it is worth applying as his illness is such a grey area?
he has seen doctors,been to hospital for tests to rule anything else out etc.
he has just finished college,ended up doing a third year as he struggled to cope,ended up with minimal attendance with colleges approval.worked from home lot of the time. he is going to uni in sept in liverpool,he had offers from manc,leeds,etc but didnt want to be far from home.i think he wants the security of knowing i am here and he can come home if it gets too much without losing his place.he will be living in halls.
anyway,back to my question,i dont half waffle! what are his chances of getting DLA or is there anything else he can apply for as a student?he obviously cant work to supplement his grant.

It's definitely worth applying. It's also worth giving plenty of detailed and specific examples of how the condition affects him.

I've just received my 3rd award and my support worker didn't put in anywhere near as much detail as previously and it was the first time I had to have a medical. The other thing which didn't get included this time was a hand written letter to demonstrate how quickly my handwriting deteriorates (I can still type, used to be an accurate 90wpm but am somewhat slower now and rely heavily on a spell-checker LOL) and examples of e-mails written at different times to demonstrate some of my communication problems. (In one of my medical reports the Dr states that my speech impediment made communication difficult - I have never had a speech impediment, what he heard was me trying to communicate when so exhausted that I was face down and dribbling on his desk. My CFS is 'severe' and has been for over 3 years and my care budget is 46 hours/week but I should be fine to be back a work by the end of the year... the mind boggles. Idiot!)

Mojisola

As it's affecting him so badly, definitely apply but also definitely get help with the forms.

Can he really cope with uni as he is? Would it make more sense to put off going for a year and spend that time resting and hoping for some improvement? ME is an illness that you can't work your way through - the more you overdo things, the sicker you will get.

If he does go to uni, there will be a Disability Section who will help. My son was given accommodation very near the buildings his lectures were in to make getting there easier. He is able to use a laptop for his exams as writing that much would not be possible. He also gets extra time in the exams if he needs it. Other help would have been available if he had needed it.

cherub1965

how do myou cope?my son had glandular fever couple of yrs ago,never recovered ,then diagnosed. he carried on at college but was just slumping into bed when he got in.learnt to cope then in nov last year he just went sooo bad it was awful to watch.he seems slightly better but still has really bad days.gets wound up,frustrated with himself.i suppose that could be bit of depression.he barely has an appetite for days then has a binge!!so many symptoms.

cherub1965

Mojisola wrote: »

As it's affecting him so badly, definitely apply but also definitely get help with the forms.

Can he really cope with uni as he is? Would it make more sense to put off going for a year and spend that time resting and hoping for some improvement? ME is an illness that you can't work your way through - the more you overdo things, the sicker you will get.

If he does go to uni, there will be a Disability Section who will help. My son was given accommodation very near the buildings his lectures were in to make getting there easier. He is able to use a laptop for his exams as writing that much would not be possible. He also gets extra time in the exams if he needs it. Other help would have been available if he had needed it.

he will be in our home town but living in so doesnt have to travel.he already had a year out basically,just studied at home and went in when he could.the journey to college took an hour,lots of walking between bus and home,both ways.this didnt help.at least this way he will be in accomodation close to the block he will be studying in.he gets so frustrated with himself though.if he just stays at home and relaxes he can cope with the aches and pains etc.he could of gone to a better uni,had big things ahead of him but hes settling for this rather than do nothing.if he cant hack it or needs a week or two at home to get back on track at least he isnt too far away.
how long did yr son have it and how is he now?

Deepmistrust

cherub1965 wrote: »

my son has chronic fatigue syndrome,has for the past 2 years.he is constantly tired and if he goes out anywhere he spends the next day in bed and is in constant pain,musle aches etc.
we have just had the forms for DLA sent and reading it i'm not sure if it is worth applying as his illness is such a grey area?
he has seen doctors,been to hospital for tests to rule anything else out etc.
he has just finished college,ended up doing a third year as he struggled to cope,ended up with minimal attendance with colleges approval.worked from home lot of the time. he is going to uni in sept in liverpool,he had offers from manc,leeds,etc but didnt want to be far from home.i think he wants the security of knowing i am here and he can come home if it gets too much without losing his place.he will be living in halls.
anyway,back to my question,i dont half waffle! what are his chances of getting DLA or is there anything else he can apply for as a student?he obviously cant work to supplement his grant.

Sound like his medical definition is "teenager":rotfl:

Only kidding.

Mojisola

cherub1965 wrote: »

he will be in our home town but living in so doesnt have to travel.he already had a year out basically,just studied at home and went in when he could.the journey to college took an hour,lots of walking between bus and home,both ways.this didnt help.at least this way he will be in accomodation close to the block he will be studying in.he gets so frustrated with himself though.if he just stays at home and relaxes he can cope with the aches and pains etc.he could of gone to a better uni,had big things ahead of him but hes settling for this rather than do nothing.if he cant hack it or needs a week or two at home to get back on track at least he isnt too far away.
how long did yr son have it and how is he now?

My son has been ill since he was 11. He was too ill to do anything for several years and missed most of secondary school. The LEA provided two hours a week of home tuition for him when he was able to study.

He managed to get some GCSEs by studying at home and then later did an access course at a local college which was a couple of days a week. He's at uni now but has to really limit what he does outside of uni work. He spends most holidays recovering from the previous term. It's a bit harder for him because he's doing a science degree and has a lot of contact time between lectures and lab sessions. Some other degrees only have about 10 hours a week contact time so, depending on what your son is going to do, it may be easier for him.

cherub1965

Deepmistrust wrote: »

Sound like his medical definition is "teenager":rotfl:

Only kidding.

you are sooo funny.i watch my son struggle to live his life in constant pain and depression.obviously you have no experience of the condition.

cherub1965

hes doing philosophy degree at liverpool.easiest option really.he did maths/pure maths etc for 2 yrs at college but found it too stressful.he got the a levels though which was excellent.he did lang/lit in the extra third yr and has just took the exams.the college have really supported him,let him do extra year and the 2 subjects should have took 2 yrs but he did it in one with help from his personal tutor.i was surprised the college let him away with such minimal attendance.they were great.lets hope uni are as accomodating.he wanted to be near home in case he needs to crash for a week at any time,and mummy can still do his washing and ironing.hes sooo good to me,lol.i dont think my son has had it sdo bad as yours,i hope he starts to recover soon.i have spoken to a few people who have had it and they are fine ,living near normal lives.frustrating that nobody can help them.at first i thought he had rheumatoid arthrits as mum and myself suffer with it.i was devastated.thankfully he didnt.his friend has fibro myalgae,she is sooo bad. i know i spelt that wrong,lol.

Indie_Kid

Is the uni aware of his ME? Has he been in touch with their disability services?

cherub1965

yes they are aware,his tutor sorted it out and let them know the extent of his illness.he is able to function ,go out,walk around etc etc but he suffers for it.if he goes out to meet mates for couple of hours he is exhausted the next day.he is learning his limitations.he is actually going to latitude festival next month but we are taking him and picking him up save him carrying tent,bags etc.so he can have some normality in his life but he pays heavily for it.his concentration is not so good either and he gets blurred vision,red eyes if he wears contacts.so many strange symptoms.had tests for everything known to man trying to find cause but the hospital put it all down to ME.