Re: WELCOME Rose-Marie / being tired

[Guest guest]

Hi Rose Marie,

Ruth Warren here. Welcome to this great (and exclusive.....) group!

I am a mother of 3 very active pre-teen girls. I have CMT2 and one duaghter

has been diagnosed. Please don't feel alone when you (or anone else on this

list) feel tired. I honestly think fatigue is one of the biggest,

unrecognized problems with CMT. (Pain and depression are on the list

too...) I do not recall any extended periods in my life when I have not

battled the fatigue issue.

The worst point in my life was when I had a 3-year old, a 2-year-old and a

newborn baby (who by the way did not sleep through the night for 4 YEARS!!!)

I refer to myself as zombie-mom when I think back to that year after my

3rd child was born...

Anyway, they are all beautiful pre-teen girls (12,11 and 9).

One of the highlights of my life was when my youngest Katey finally slept

through the night consistently after she turned 4. I still battle fatigue

constantly, but now the girls can do the dishes and clean up after dinner.

And my 11-year-old is a gem at automatically taking packages from me to

carry up and down the stairs. The oldest gets herself up in the morning so

I don't have to climb the stairs to wake her. And my husband is THE

BEST!!!! - he does the laundry, the grocery shopping and a lot of the

cleaning around the house.

I think one key to dealing with fatigue is having a support system that

understands how REAL it is. This support system can include family,

friends, doctors, therapists, etc. I also find that as I get older and the

CMT progresses, I am thinking more and more about focusing only on those

people and activities that are meaningful to me. I still try to accomplish

way too much, but I can envision a day when I slow down to " stop and smell

the roses... " In the meantime, I am blessed by my family.

Ruth

>From: Rose-Marie.Isakson@... (Rose-Marie Isakson)

>Reply-To: CMTUS (AT) onelist (DOT) com

>To: CMTUS (AT) onelist (DOT) com

>CC: cmtus (AT) onelist (DOT) com

>Subject: Re: WELCOME Rose-Marie

>Date: Mon, 17 Jan 2000 20:31:51 +0100

>

>From: Rose-Marie.Isakson@... (Rose-Marie Isakson)

>

>Thank you Gretchen for your friendly words and that you contacted me after

>my little message at the CMTA.

>

>Yes I have noticed that it is a lot of parents who are writing here and at

>the CMTA. I must say I especially understand the tired mothers who calls

>for help, my daily thoughts are often about: how shall I been able to

>tidy, cook, do the wasing ups etc this evening when I´m already feeling so

>exhausted (hope you don´t throw me out from this site now while sounding

>so negative).

>

>I have also been following the messages about how it can be meeting

>doctors. Here is often exactly the same problems i must say.

>

>Yes I agree with you about these (sometimes) wonderful computers. I use to

>say to my 13 years old son: isn´t it fantastic that I can sit here writing

>messages to you in america and you can read it within the next second. " So

>what " is the answere (a thought from the

>new generation?)

>

>W´ll keep in touch, Rose-Marie

>

>

>---------------------------