Re: Friendships

[Guest guest]

In a message dated 2/14/2006 6:36:16 P.M. Pacific Standard Time,

jeanet@... writes:

as far as people talking about playing in the snow or walking in the high

heels, take it as a compliment in that they see you as " normal " as they see

themselves and sometimes may truly forget that we can't do these things

YES Jackie some friends do forget I have CMT. I prefer it that way but it

almost seems more thoughtless of them. I don't forget their problems. Know what

I mean?

[Guest guest]

funny i have had many people say to me that they always thought i was so strong

and that i could handle anything and they were surprised when i was down for the

count. They also told me that i am very stubborn and never let anyone know that

i may need some help.

I too have had friends that had drained me of my energy, but luckily they

actually ended up being there for me when i needed it.

as far as people talking about playing in the snow or walking in the high heels,

take it as a compliment in that they see you as " normal " as they see themselves

and sometimes may truly forget that we can't do these things. I understand why

it bothers you, because i have felt the same thing.

Being single for so long, i also used to get frustrated when my sister would say

how lucky i was to have Saturday night to myself. I explained that it doesn't

feel so lucky when it is every Saturday night! Sometimes people just get so

wrapped up in themself and their life, that they are ignorant to who they are

talking to.

Jackie

[Guest guest]

In a message dated 2/15/2006 4:57:33 P.M. Pacific Standard Time,

jeanet@... writes:

<Sometimes i feel like i keep lowering the bar of expectations of my friends,

that it comes to the point where i have to decide is this friendship worth it

anymore?>

Hi Jackie,

My bar is set pretty low right now. I am actually wondering if I

have any true friends other then on this list. I would love to relate to someone

that I can sit and have tea with.

[Guest guest]

,

I so know what you mean. Most the time i just bite my tongue, but there have

been many a time where i have gone out with friends socially and they spend the

whole time walking around or standing in the middle of a crowd where i can't go

because there is nothing for me to lean on (major balance problems)

I have from time to time told them that it is not fun for me to go out and spend

the whole night by myself. Sometimes they get, sometimes they don't. Maybe

because of CMT we have an acute awareness of other peoples feelings. Sometimes i

feel like i keep lowering the bar of expectations of my friends, that it comes

to the point where i have to decide is this friendship worth it anymore?

My fiance and I have this discussion all the time; men just expect less from

their friends than we do. I can't help but to still get disappointed in people.

Jackie

[Guest guest]

Hi Nina.

I am kind of new on here. I feel so much better when I talk to others with the

same problems I have gone through. I have had a hard life. Some days are harder

than others. I have a wonderful church family. My husband and kids are great. It

is sometimes hard talking to my husband about the problems I am having because

he starts feeling helpless that he can't help me. I really don't need that. I

then start feeling bad for telling him. I would love to talk to others on here.

God Bless.

Amy H.

[Guest guest]

Dawn, I am new to the group but your message caught my eye. I live

very close to Chester, PA (Claymont, DE) Is your support group still

active? Can you send me info on it?

Thanks,

Kate

[Guest guest]

Hello. Emine,

Thank you for your questions. I'm 76 years old and I live in California. When I

was a child I was very clumsy, and couldn't play active games like other

children, but nobody knew about CMT, so I wasn't diagnosed. When I was an adult

I was very stubborn and insisted on being as active as I could, so I learned to

swim and dance and run. When I was 60 I began to have more serious symptoms, no

feeling in my feet and falling down, and I was diagnosed with CMT 2. Now my

symptoms are worse, I have more pain and weakness, and I know it's time for a

wheelchair.

Sometimes I'm very sad because I can't dance, but I listen to music and dance

inside my head, and then I feel better. I believe all of us have times when we

feel really bad about our CMT and other problems, and times when we feel happy

about the blessings in our lives. My blessings include good friends, and a funny

cat who makes me laugh. I try to remember that my body is " just something to

carry my brain " , and it sounds like you have a very good brain, Emine.

Please don't worry about your English, you're doing well. Did you study English

in school?

Take care,

Ruth

Be kind. Everyone you meet is struggling with something.