self acceptance

[Guest guest]

Karon,

It is true that others may believe we are hypochondriacs.If they only knew!

Self acceptance of my condition and all the things it brings helps me

sometimes. I find when I accept what is happening to me, my pain and

discomfort, my more limited mobility, the restrictions on my activities, others

often follow suit. If they don't, oh well, that's not my problem.

If others want to argue about whether my discomfort is justified, I try not to

take the bait and simply accept that their feelings are a reflection of where

they are in their life, and have nothing to do with me. So, I accept my

situation and all it brings and I accept others who may not understand.

It makes life easier! But do know that those of us with CMT understand what you

are going through, and you are not alone.

J. Warren

From: [mailto: ] On Behalf Of

kedleson@...

Sent: Monday, May 18, 2009 5:51 PM

Subject: Re: Does standing for a prolonged amount of time make CMT

worse?

I have noticed also that I am in more pain when I stand for long periods of

time. My right hip especially bothers me when I am cooking or ironing and am

on my feet for extended periods of time.

I try and wear comfortable shoes with support but even that does not

prevent me from getting so tired. I do keep going, though, since pain is

beginning to be a permanent part of my life. I just try to grin and bear it

but sometimes it gets to me.

Does anyone else feel that others might view us as hypochondriacs? I feel I

have put up with tons of medical issues and I keep it to myself and my

husband for the most part, but it seems like there

are so many symptoms that other family members think that I always have

something going on.

I haven't been to my neuro in three years, I rarely take pain pills unless I

am in horrible pain, etc. but I still feel that others judge because they

don't know what's going on. People with CMT look great on the outside so it

is really confusing for others to understand why we are in pain or get tired

so easily.

I just find it frustrating at times when others voice opinions about CMT, or

issues they know nothing about, while we are suffering

from this weird disease. UGH!!!!

Karon

[Guest guest]

Thanks for those words of wisdom.  I probably do need to accept my

condition better and quit caring so much as to what others are thinking.  Just

recently, I have been faced with progression of this disease and I have been

fighting internal feelings instead of just telling myself to move on.  I am an

optimist by heart and if I do slide downhill for a day or two, I have always

been able to pick myself up and move forward. These " silent " diseases just make

it so hard for others to understand.

Karon

Karon,

It is true that others may believe we are hypochondriacs.If they only knew!

[Guest guest]

Interesting, , and SO true! Right when we think the CMT has stopped,

BOOM! another symptom crops up. The uncertainty of this disease and its timing

is frustrating, to say the least.

Karon

[Guest guest]

Karon,

The progressive nature of this disease is what makes it so hard to deal with. I

have a friend who had a debilitating stroke several years ago, and she says her

condition is easier to cope with because the limitations came all at once.

Adjust once and move on. With ours, the adjustments are many and the timing

unpredictable. Also, with each progressive loss, I think it is important to

allow ourselves some grief before moving forward. First grief, then acceptance.

J. Warren

[Guest guest]

Karon,

I also experienced this. Everytime I needed a new assistive device or found

another muscle group that was not working, I would tend to go into denial and

then get angry and sad (kind of like the natural grief process) This would not

last long, maybe a day or two, and then I would get to acceptance. It is true

that since ours is a progressive disease, we go through this often rather than

just once during the initial diagnosis. I think this is perfectly normal and I

do not beat myself up anymore, but allow the time to grieve (though, only short

time!)

Isn't it funny how we think we are the only one that go through these things,

and then I when I read certain posts, I feel like they totally understand me! It

is different getting understanding from this group than from the " outside "

world, because we truly understand what it means to be in our bodies.

Jackie

[Guest guest]

Jackie,

It is comforting to hear similar stories from others on this site. Before the

Internet, we would not have been able to hear from so many others and share

symptoms, treatment, etc.  Since CMT is a relatively rare disease, this website

has been so helpful to me.

Like you, I never dwell on new progression long, but nevertheless, we do go

through a " mourning " period and just to be able to know that we are not alone

and that someone else has experienced what we have and has moved on,  somewhat

eases the pain.

Karon

Karon,

I also experienced this. Everytime I needed a new assistive device or found

another muscle group that was not working, I would tend to go into denial and

then get angry and sad (kind of like the natural grief process) This would not

last long, maybe a day or two, and then I would get to acceptance. It is true

that since ours is a progressive disease, we go through this often rather than

just once during the initial diagnosis. I think this is perfectly normal and I

do not beat myself up anymore, but allow the time to grieve (though, only short

time!)

Isn't it funny how we think we are the only o

ne that go through these things, and then I when I read certain posts, I feel

like they totally understand me! It is different getting understanding from this

group than from the " outside " world, because we truly understand what it means

to be in our bodies.

Jackie

[Guest guest]

I feel so useless...as my CMT takes another peace of me. I don't like it when

others act as though I have a mental disability also.

Blessings

Geri

Jackie,

It is comforting to hear similar stories from others on this site. Before the

Internet, we would not have been able to hear from so many others and share

symptoms, treatment, etc. �Since CMT is a relatively rare disease, this

website has been so helpful to me.

Like you, I never dwell on new progression long, but nevertheless, we do go

through a " mourning " period and just to be able to know that we are not alone

and that someone else has experienced what we have and has moved on, �somewhat

eases the pain.

Karon

Karon,

I also experienced this. Everytime I needed a new assistive device or found

another muscle group that was not working, I would tend to go into denial and

then get angry and sad (kind of like the natural grief process) This would not

last long, maybe a day or two, and then I would get to acceptance. It is true

that since ours is a progressive disease, we go through this often rather than

just once during the initial diagnosis. I think this is perfectly normal and I

do not beat myself up anymore, but allow the time to grieve (though, only short

time!)

Isn't it funny how we think we are the only o

ne that go through these things, and then I when I read certain posts, I feel

like they totally understand me! It is different getting understanding from this

group than from the " outside " world, because we truly understand what it means

to be in our bodies.

Jackie

[Guest guest]

Hi everyone,

I haven't written in awhile, but I sure do like to read everything on this

site. 

 

You know I went to a staff meeting in my county last Thursday where there is

over 200 of us mandated to go. Well it was at a University in our area in the

gym where it would hold all of us.  Well, this year they had the bleachers down

and we had to sit on them.  There is no way I can climb bleachers, no balance,

and wearing an AFO, so I grabbed the bottom row and there was still a huge step

up to get on it. 

I am now at the point of self acceptance because I told my friends, if they

wanted to climb high they certainly could but I can only do the bottom.  I had

my cane also.  My friends said " no we want to sit with you " and even made sure I

got in my seat safely. 

I tell myself everyday that I have to accept the fact that I really do have a

disability and deal with it the best I can.  And you are all right in saying NO

ONE knows what goes on with us with CMT. 

Have a great upcoming week.

Elaine in Florida

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Elaine 

[Guest guest]

Elaine ~

I find that it is not only self acceptance for me it is almost like a coming out

of the closet. I think alot of people with CMT are " coming out " . The internet

has increased our ability to communicate and more people are educating

themselves and seeking support and this alone has me feeling more comfortable to

share my challenge with friends and co-workers. This only brings more public

awareness of CMT. Now if we can only get more awareness in the medical

community!

Las Vegas

Elaine

[Guest guest]

......AMEN!!!

There are millions of people all over the world with this disease, and for the

most part, the only ones who are forthcoming and contribute are the " blue

collar " " joe six-packs " of the world. This disease affects everybody.......rich

and poor, black and white, young and old, fat and skinny, tall and short, etc.,

but yet the majority of those who participate do not clearly reflect the entire

population of CMT sufferers the world over. Apparently, those who are born into

wealth, choose to " hush hush " this situation and keep it quiet, while those with

limited means wind up putting this malady on the front burner and start seeking

assistance early on and once diagnosed. Why this happens, is somewhat of a

mystery, and is something that we need to address.

I find myself informing my primary care physician as to what this disease is all

about etc., and he teaches at Harvard Medical! Something really needs to be

done. There is no excuse for this total lack of knowledge, when this disease

affects so many people and in so many ways.

Thanks for your refreshing take on this disease. God bless.

Mark

[Guest guest]

Hi ,

Wow that is so true.  I never thought my disability would become a " work " issue.

But I have come out and tell people about it if the need arises.  I am 60 years

old worked for the same health dept here in Florida for 26 years and yep my

physical limitations have certainly become more noticeable. 

So if  have to use the cane at work, I do, anything to keep me upright. LOL 

Thanks for your kinds words.

Elaine