Re: - a pause to my postings.

[Guest guest]

Donna,

I am sorry you feel that way and wish you would continue posting as i look

forward to hearing what you do. I am one of the ones who is severly impacted,

but always interested to hear what others with CMT can do. I used to feel like

it was only me that couldn't do the walking on the beaches, the hiking, the bike

riding and i used to blame myself. Due to this forum, i learned to forgive

myself and do what my body can do and admire those that that can and do more.

I think there are a lot of new people on this forum and they will learn how to

converse without judging.

Good luck to you and keep up the fight!

Jackie

- a pause to my postings.

 

I think I am going to take a break from posting for a while.

It is discouraging to me that the experiences and sharing of those of us who are

active, and mild in symptoms, are discouraged either overtly (thanks to the few

of you who have threatened me with progression in my symptoms as retaliation for

my positive posts) or subversively through the dismissal of research and

theories into CMT that are pushing the boundaries of our knowledge.

I thought this forum was supposed to be open in nature. Instead I find a rather

singular view persists, and for those of us who want to push the boundaries of

the view, we are met with a rather " traditionalist " response.

I have been contacted off list by folks with CMT who are mildly impacted who

have shared with me similar concerns. I appreciate being contacted off list and

welcome it. My email is on my website. I take the time to reply to each person

who contacts me. I have been contacted directly by other triathletes, runners

and active people with CMT. It is inspirational. Motivational. And shows me that

there are people like me out in our CMT world, who are seeking without judging a

positive approach to living and being active while having CMT.

For those of you who want to keep up with my learnings and experiences, feel

free to read my blog/share your comments and experiences. I have the following

blog posting schedule:

Monday = training

Tuesday = fitness tips (applicable to anyone, including CMT folks)

Wednesday = charity fundraising and awareness

Thursday = my thoughts (no specific topic)

Friday = food / recipes

I don't keep to posting every day, but I make sure that my posts align with the

themes above. You can subscribe to my posts.

I will keep on reading, and enjoying the research that is posted.

Best wishes,

Donna from London

www.myfitnessyear.com

[Guest guest]

Donna,

I certainly only speak for myself and from my 47yrs of experience. But ... I

find written communication of this chat can sometimes be frustrating but

sometimes helpful. I was a Science major for a few reasons but a big reason is

I hate to write and I do not always communicate thru written communication well.

In addition if I am in a hurry ---- I can really sound stupid.

I even experienced huge backlash when I told someone that they

needed to rest all weekend if needed in order to be able to be high energy at

their job on Monday am. This was 1 yr ago and I hope they still have a job with

that BIG BANK THAT WAS DEEMED TO BIG TO FAIL.

I have enjoyed your post and your writing skills are excellent. I have even

visited your blog site. I work for a major financial firm and we are so foutnate

to have lots of training and how many times we are told that emails can be

misunderstood!!! Does anyone remember lipstick on the pig LOL! Sorry ... I poke

humor .

But it is important that we all continue to be true to ourselves and the disease

bringing productive energy ( positive and negative)to the group. You are unique

in that you are so active. I think I have said don't stop. But also be very

carefull(see past post) but thicken up your skin and stay with the group. Do

what you need to but don't leave.

Hay I am headed to DFW - and my braces are packed in suit case!!!

Kim