ME and DLA?

daska

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.

cherub1965 wrote: »

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.

From what you've written here I would say he is doing far too much. But then, if he's typical of the people I have met and spoken with who have/had ME then he is a naturally 'busy' person - always something on the go if not 6 things. This is, as far as I can work out, our greatest weakness; we feel we are not accomplishing enough or pulling our weight unless we find a way to do everything necessary. Even last night, over 3 years into this and knowing better, I felt I had to help make dinner. I had 4 able bodied adults telling me to stop being silly but I was so tired I couldn't be rational; an hour later I was flat on my back while they ate dinner, sorted out DS2 and put him to bed and cleared up.

I also agree with the suggestion that he take a year out while it's still relatively easy to do so, cut down what he does to the point that he doesn't suffer and then build up slowly. I'm sure he won't want to but... it could make all the difference if he actually STOPS. (I can't because I have a pre-schooler, they're usually demanding but even the professionals recognise that mine is extremely hard work LOL - oh for him to start school full time )

Re the festival, may I suggest that you get him some decent ear plugs just in case, it might sound silly, but if the noise gets overwhelming he might be very glad of them.

cherub1965

thanks daska.from what i read on here i dont think he is as bad as people who have replied.i assume there are different levels of it.he hasnt been out of the house since an exam on thursday morning,followed by a subway and chat with friend.he does pace himself,listens to his body!!lol! do you find it hard to establish a sleep pattern? he can be unable to sleep all night then sleep all day and through the next night and still feel rubbish.sleep makes no difference to the tiredness.hes had ayear of not doing much and he is takinjg the easy option degree course,minimum stress as stress eems to flare him up.on the whole he manages quite well considering all things,just sad to see a 19 yr old having to deal with it.university know his limitations and are still willing to take him in and give him a chance.and as i say with me being in same city he has got back up and can come home and rest up if he wants to.am dreading him going,my baby!and i bet you will cry when yr little boy goes to school full time.i wept buckets,lol.seems like yesterday.

daska

Yes, there are different levels and people experience different symptoms. Is his GP sympathetic? There are medications which can be used to help the sleeping and the stress. Personally I find that, while sleeping doesn't affect the tiredness, if I'm managing my energy well my sleep pattern is better - in other words I sleep better when less tired. Ditto the pain and the concentration and, in my case the hallucinations (I smell things, it's not good LOL).

I don't think I'll cry when DS2 goes to school, I think I'll go to bed...

Mojisola

cherub1965 wrote: »

thanks daska.from what i read on here i dont think he is as bad as people who have replied.i assume there are different levels of it.he hasnt been out of the house since an exam on thursday morning,followed by a subway and chat with friend.he does pace himself,listens to his body!!lol! do you find it hard to establish a sleep pattern? he can be unable to sleep all night then sleep all day and through the next night and still feel rubbish.sleep makes no difference to the tiredness.hes had ayear of not doing much and he is takinjg the easy option degree course,minimum stress as stress eems to flare him up.on the whole he manages quite well considering all things,just sad to see a 19 yr old having to deal with it.university know his limitations and are still willing to take him in and give him a chance.and as i say with me being in same city he has got back up and can come home and rest up if he wants to.am dreading him going,my baby!and i bet you will cry when yr little boy goes to school full time.i wept buckets,lol.seems like yesterday.

It sounds as if he's managing it as best he can. Pacing is the only management method that seems to help. The people in our group who have been helped by CBT are the ones who were overdoing it all the time. CBT helped them to see that they had to work within their capabilities.

All the other arrangements are very sensible. He has a back-up plan and the uni are on his side. Good luck to him!

Sleep disruption is one of the defining symptoms of ME, especially with younger people. At one point my eldest's sleep cycle was almost 12 hours out - I had a 12 year old awake until 6 - 7am and then sleeping until 5 - 6pm and, as you say, waking exhausted. Coping with my own ME and a younger child was very difficult - thank goodness the memories fade! We buy Melatonin from the USA to help with getting to sleep.

Added: I'm not advising anyone else to do this without discussing it with a doctor. We have done this and the doctor would have prescribed it but I prefer to take the one I buy.

Mojisola

Deepmistrust wrote: »

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

Only kidding.

I’m sure, in your ignorance of this illness, that this “joke” seems funny. After dealing with both my sons’ illhealth for over 17 years, I don’t find it so.

If you had watched two fit, healthy, bright, active boys deteriorate to two invalids unable to get out of bed for days at a time, unable to hold a conversation because their brains couldn’t put a sentence together and lose years of their young lives, you probably wouldn’t find the comments we get amusing, either. Everyone with ME will have heard them - sounds like a typical teenager, we all get tired sometimes, you’ll feel better if you stop laying around and get out a bit more.

My sons gradually gave up their fun, out-of-school activities - the sports went first because they made them so ill, then quieter activities, then time spent with their friends because, if they played with friends after school, they were too ill to go to school the next day. How would you feel when your son was struggling out of bed to get to school, collapsing on the bed as soon as he got home, sitting upright long enough to eat and do homework and then having to lay down again and spending all weekends resting so that he could go to school again on Monday only for people to tell you that he was putting it on so that he could have time off from school?

They both lost all their friends - other kids, particularly boys, don’t want to spend time in a darkened room with a friend who is so exhausted after a 10 minute visit that he can no longer talk to you.

Despite all this, they have become two brilliant young men. I am very proud of them. They are mature beyond their years, in the way that many children who suffer ill-health are. They have kept a positive attitude throughout the time they have been ill. They are accepting of everybody they meet, sympathetic and understanding. They can relate to anyone, regardless of age, and have a wide range of interests through educating themselves via the library, the internet and documentaries.

I just keep hoping that they will someday be able to maintain a level of health that will enable them to lead self-sufficient, independent lives.

cherub1965

i couldnt have said it better myself mojisola.my son learnt to manage,he could function at college but same as yours,just crashed too tired to even eat sometimes.breaks my heart to see.hes not so bad now but is always sore,muscles,headache etc.there is hardly a night i dont go up and hes in bed clothed snoring,havent the heart to wake him.our doc is supportive to an extent,wrote letters for him,referred him to the contagious disease unit for some reason.found out they are doing research and just wanted a chat.they were very interested in the fact myself and my mum have rheumatoid arthritis which is an auto immune disease.your immune system attacks your own body causing joint damage and constant pain.i was worried he had it at first but was neg thank god.he has learnt to cope and doesnt push himself.some days he hasnt the energy to stand up long enough to get a shower,yet others he will try to get out and about.the best advice he had was listen to your body.i tend to notice aswell when he has seen friends or been to a gig,for a meal etc he seems to perk up for a few days.he gets quite snappy and down sometimes.wish he could nlive a normal full life.when i was 19 i was working full time,out almost every night,couldnt sit still!

cherub1965

Mojisola wrote: »

I’m sure, in your ignorance of this illness, that this “joke” seems funny. After dealing with both my sons’ illhealth for over 17 years, I don’t find it so.

If you had watched two fit, healthy, bright, active boys deteriorate to two invalids unable to get out of bed for days at a time, unable to hold a conversation because their brains couldn’t put a sentence together and lose years of their young lives, you probably wouldn’t find the comments we get amusing, either. Everyone with ME will have heard them - sounds like a typical teenager, we all get tired sometimes, you’ll feel better if you stop laying around and get out a bit more.

My sons gradually gave up their fun, out-of-school activities - the sports went first because they made them so ill, then quieter activities, then time spent with their friends because, if they played with friends after school, they were too ill to go to school the next day. How would you feel when your son was struggling out of bed to get to school, collapsing on the bed as soon as he got home, sitting upright long enough to eat and do homework and then having to lay down again and spending all weekends resting so that he could go to school again on Monday only for people to tell you that he was putting it on so that he could have time off from school?

They both lost all their friends - other kids, particularly boys, don’t want to spend time in a darkened room with a friend who is so exhausted after a 10 minute visit that he can no longer talk to you.

Despite all this, they have become two brilliant young men. I am very proud of them. They are mature beyond their years, in the way that many children who suffer ill-health are. They have kept a positive attitude throughout the time they have been ill. They are accepting of everybody they meet, sympathetic and understanding. They can relate to anyone, regardless of age, and have a wide range of interests through educating themselves via the library, the internet and documentaries.

I just keep hoping that they will someday be able to maintain a level of health that will enable them to lead self-sufficient, independent lives.

did the doctors give any reason or theory why both your sons had ME? immune system problems or anything?not being nosey,just curious.is there any rheumatoid in yr family/i wouldnt be surprised if they didnt find a link somewere down the line in years to come tbh.

cherub1965

Mojisola wrote: »

It sounds as if he's managing it as best he can. Pacing is the only management method that seems to help. The people in our group who have been helped by CBT are the ones who were overdoing it all the time. CBT helped them to see that they had to work within their capabilities.

All the other arrangements are very sensible. He has a back-up plan and the uni are on his side. Good luck to him!

Sleep disruption is one of the defining symptoms of ME, especially with younger people. At one point my eldest's sleep cycle was almost 12 hours out - I had a 12 year old awake until 6 - 7am and then sleeping until 5 - 6pm and, as you say, waking exhausted. Coping with my own ME and a younger child was very difficult - thank goodness the memories fade! We buy Melatonin from the USA to help with getting to sleep.

what does the melatonin do?i know my mum has a serotonin imbalance at the moment.long story but we lost my brother in december suddenly,mum just went into shock,as you would.he had alcohol issues and mum had stressed for years,during which time she lost both her parents after horrible long illnesses just after my dad had recovered from a serious industrial accident,was in hospital a year.point am making is she had been stressed for years.2 months after my brother died she went into meltdown and had a panic attack,couldnt breath,was hysterical.we dragged her the docs and she explained that it was lack of serotonin,caused by shock.its known as the sunshine drug the doc gave her,not sure what its called.is it similar and what does it do?will mention it to my son and he can look into it.

daska

Melatonin is a hormone that regulates sleep patterns. IIRC Imbalances have been found in people who suffer from FM, ME, CFS, Tinnitus, SAD and other forms of depression (TBH I strongly suspect that having FM, ME, CFS and/or Tinnitus would leave anyone likely to being depressed so I'm not sure how much to read into that!). Normally your body can convert serotonin to melatonin but this can be a problem for FM/CFS sufferers which is why they get supplemented in some instances. I've been told that most people can absorb trytophan from their diet (found in turkey and bananas?) which the body can convert to serotonin and so on, but for some it just goes wrong somewhere along the line. Sorry, I'm not an expert on this, I do eat a lot of bananas because I also suffer from cramp (which is why this bit of info stuck in my head when I was told it ) but I still have problems sleeping LOL

cherub1965

i actually bought one of those light boxes for people with SAD but it didnt get much use.kept unplugging it to plug something more usefull like hair starighteners in,thats my boy!!lol