Hi,
Im a member of CFSFriendlies group which is a small, but very helpful group, mostly from Australia but other parts of the world too. One of the members, Colin, sent me this true story, how sad, but when Im in relapse, sadly understandable. :(

Hope the link works, best wishes, Lisa.

http://uk.f861.mail.yahoo.com/ym/ShowLetter?MsgId=5126_4566948_191395_3147_9398_0_2 4996_29872_825758914&Idx=13&YY=47861&y5beta=yes&ymv=0&y5beta=yes&inc=25&order=down&sort=date&pos=0&view=a&head=b&box=Inbox

lisa:- no the link doesn't work.

Didn't work for me either Lisa - :(

sorry, ill sort it out.

Try this, thanks.
http://tinyurl.com/4cpmpo

let me know if this works please.

Hi Lisa, It is tragically sad. I'm sorry you've had to read that.

I don't have ME but I'm severely disabled and my disability has deteriorated massively in the last 5 years or so. I can't walk at all anymore and I'm in loads of pain. Sometimes I do feel suicidal. Thankfully I'm still here and with good doctors, carers, family and friends. So far I've got through those really bad times.

It is scary to look to the future. I find it is better not to! All I know is my doctors have promised me they'll always look after my pain management and never leave me in the lurch and not without effective pain cover.

In the meantime I try hard to make sure that I find time to enjoy life as much as possible. I've taken up photography, gone to Uni to do a part time course, try and make time for my friends and learn how to pace myself with rest times, etc.

All in all I'm glad to be alive! It certainly isn't easy and I wouldn't wish this life on anyone, but it's the only one I've got, so it's best to just get on with it whenever I can, and look to my friends and family for added support when I can't.

Many hugs - we're all here for each other when we need it.

x

thanks, lisa, that link did work.

how terribly sad that this young man took is life.

ME is something that I would not wish on my worst enemy.

I have heard of a small number of people, over the years, who have had ME, and who have taken their own lives, (but thankfully, it's less than half a dozen) and I really do feel that more could be done to support those who are living with the condition, and there should be more funding for research into the causes and potential tratments for it.

I have M.E which struck me at 18. I know what it's like to think you have no future. I'm in my 50s now so life did go on. A Cure for M.E obviously would be good but the problem for that young man is one that should be sorted now. There is not a lot of help for those young disabled with illnesses such as M.E. The assumption is that it will go away so none of the support other disabled children is there. Schools and Attendance officers are often unsympathetic. There's pressure on the young M.E sufferer from all angles. The diagnosis doesn't seem to have the clout of other conditions. Plus there is the loss of a normal social life just when your peers are socialising the most. You can't go out, you can't train for employment, your friends if you managed to make them, grow tired of visiting someone who is often too tired to carry on much of a conversation and in any case hasn't done anything he/she can talk about. What can help is access to a counsellor and links with other young M.E. sufferers.

http://www.afme.org.uk/gettinginvolved.asp?id=63

Its M.E Awarness week.

www.AYME.org.uk is a lifeline for young M.E. sufferers. My daughter has been a member for 2 years and before AYME she was very depressed and felt she was alone in the world with no support. They have been a godsend to her and also to the rest of the family!

It is indeed M.E Awareness Week, let's hope awareness will be raised and all sufferers will benefit from a little more understanding about this condition.

I went to Centre Parcs last week, I was so looking forward to it - peace, relaxation and a chance to spend quality time with my son. It was a good break on some levels but by Thursday I was overwhelmingly depressed. All the things I wanted to do but couldn't - I got into the sub-tropical swimming paradise - but I had to rely on my OH to hold babybonny and swim with him, to take him up and down the slides etc etc. Yes it was lovely to watch him having fun but at the same time it highlighted all the things i'd love to do with him but can't. I can perfectly understand why someone with ME would want to end it all and it's so very very sad that people don't have the help, support and understanding that is needed.

I went to Centre Parcs last week, I was so looking forward to it - peace, relaxation and a chance to spend quality time with my son. It was a good break on some levels but by Thursday I was overwhelmingly depressed. All the things I wanted to do but couldn't - I got into the sub-tropical swimming paradise - but I had to rely on my OH to hold babybonny and swim with him, to take him up and down the slides etc etc. Yes it was lovely to watch him having fun but at the same time it highlighted all the things i'd love to do with him but can't. I can perfectly understand why someone with ME would want to end it all and it's so very very sad that people don't have the help, support and understanding that is needed.


I hope you have as much support from your OH as I do from mine. Youre right, help, support and understanding is very important. Its an awful thing to have to suffer, but as you probably know, there is no cure, although a percentage of people do make a complete recovery.
Im sure babybonny doesnt hold it against you, as long as you give him love and cuddles, thats all that matters. I understand how frustrating it is though, we have to stay as strong as we can be and pace ourselves.
Best wishes to you and your family.