Re: Dan's Confusion

[Guest guest]

Oh Dan

Please, please don't worry. It is very rare that CMT causes breathing problems

but yes it can happen and yes it sometimes it causes problems which can result

in an early death. But, I assume (maybe wrongly) that you drive or travel in a

car and if that's the case then that is more likely to cause you to die early.

No-one is guaranteed our three score years and ten. Look at this group we have

members between 17 and 90 just like every other community CMTers are no

different.

Okay so life isn't so easy but who said it would be? I'm 40 with three children.

I can't walk anymore. I'm a writer who can't hold a pen (now that is silly.) and

yes I have breathing problems but I still live and my story is no different to

so many others. BUT NO TWO PEOPLE WITH CMT HAVE EXACTLY THE SAME SYMPTOMS AND

THE SEVERITY VARIES BEYOND COMPREHENSION. We have problems but there are ways to

cope and to overcome them.

I'm really sorry if I sound hard I don't mean to. I really feel for you. I know

what it's like to live life thinking your 'normal' or fairly normal and suddenly

to discover that which you accepted as part of you is not just a quirk of nature

but is actually a disease. I was told they thought I had CMT in 98 and I read up

about it - the wrong books believe me - but the books I read said that it crept

up your body and eventually you died of it. And I had tests and was told

(wrongly) I didn't have CMT and I remember walking out from that hospital and

saying to my husband I'm going to live.

Then I went into a wheelchair and no one could tell me what was wrong with me.

In Jan 2000 I rediscovered CMT and knew the mistakes that had been made. I still

don't have an official diagnosis. But you know something reading the right

literature, meeting and sharing with others via email I know CMT is not

guaranteed fatal like I first understood - but living itself is fatal.

Maybe this message is all confused but I want to understand that life does go on

and in time you will find that your life, your understanding of people, your

capability to live and love will become richer.

I wish I could be there with you and hug you and hold you and say please don't

worry and I really do understand how you feel. Listen and learn, read and

understand. Talk shout, cry whatever but we're with you, we're all holding your

hand and you'll get through it. I promise.

Lots of love, hugs, prayers you name it. You're going to be alright.

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller