Re: courage to live with CMT

[Guest guest]

We have discussed this many times. There is a process with CMT and grieving. I

have written about this before. For me, everytime there is something else that

" doesn't work " or i have to get a new accomodation (cane, hand controls scooter)

I went throught the grieving process. First i denied that CMT was anything out

of the ordinary. Then came the shock, denial and finally acceptance.

When i got my scooter, instead of looking at it as liberating i looked at it as

now the end is near. I got so depressed i could barely function beyond working

and doing what was necessary.

I went through 6 months of not living. Then i came out of my funk, and i had a

greater acceptance of CMT and of what I can handle and I am so much stronger

(mentally).

In summary, you DO have the courage to live with the progression. Just deal with

today and some of today's problems may go away tomorrow. As you learn the new

accomocations for the new weaknesses, you will perservere. Believe me when i

tell you, most of us on this site have experienced what you are going through.

Stay strong!

Jackie

[Guest guest]

Dear friend,

I used to feel ashamed about my diminishing capacities. Shame like a red hot

wave would sweep through me every time I tripped and fell. I have come to

realize that I should have shame for my moral failures, but that my body's

growing weakness is NOT shameful. If anything, I take pride in my resilience,

persistence, and courage in finding ways to lead a full life while adapting to

increasing limitations.

Shame? No way. Not any more. I rock. I was once in the place of wondering if I

could go on living if my CMT progressed. I changed in how I viewed it, and I'm

not only going on, but finding life to be ironically good.

If anybody is interested, I started a blog about some of my physical struggles,

health issues, and journey towards wellness. www.paralyzednomore.blogspot.com

Peace,

Lynna

<You are so very right about the grieving,I feel vulnerable w/limited hand use

and ashamed about my dexterity.>

[Guest guest]

CMT is hard to live with, because it gets worse, it limits what you are able do

and what you have the strenght to do. It is easy to give up and think that now

life can only be worse. But as we know, there are ups and downs in life. You

might discover that you can't cut with a knife anymore - but then you discover

knifes with angled grips. So you are back in business! Don't  give up - find the

solution!

Someone said: " I have one disablity, but thousands of abilities " . Use them, and

your disability is history.

Beata

[Guest guest]

Is it me or we women, can deal better (mentally) with CMT? Please share your

experience.

Betania

From: lynnanicholas@...

Date: Wed, 26 Aug 2009 10:58:26 -0400

Subject: Re: courage to live with CMT

Dear friend,

I used to feel ashamed about my diminishing capacities. Shame like a red hot

wave would sweep through me every time I tripped and fell. I have come to

realize that I should have shame for my moral failures, but that my body's

growing weakness is NOT shameful. If anything, I take pride in my resilience,

persistence, and courage in finding ways to lead a full life while adapting to

increasing limitations.

Shame? No way. Not any more. I rock. I was once in the place of wondering if I

could go on living if my CMT progressed. I changed in how I viewed it, and I'm

not only going on, but finding life to be ironically good.

If anybody is interested, I started a blog about some of my physical struggles,

health issues, and journey towards wellness. www.paralyzednomore.blogspot.com

Peace,

Lynna

<You are so very right about the grieving,I feel vulnerable w/limited hand use

and ashamed about my dexterity.>

[Guest guest]

Betania,

In my experience with meeting many, many people with CMT, both women and men (of

all ages) seem to be able to manage the emotional aspects very well. Especially

those who are/were diagnosed in childhood.

Gretchen

[Guest guest]

Hi I am new to your site...I thought this was a very touching post...I can

relate to, I find new ways everyday to work around my disabilities, and I will

continue to do this as long as I live..I have watched my entire family deal with

it through the years and I will keep the faith that someday, they will find the

cure. This is a very informative group, But who better to learn from then those

who " have already been there and done that " .

Sherry

>

> CMT is hard to live with, because it gets worse, it limits what you are

able do and what you have the strenght to do. It is easy to give up and think

that now life can only be worse. But as we know, there are ups and downs in

life. You might discover that you can't cut with a knife anymore - but then you

discover knifes with angled grips. So you are back in business! Don't  give up -

find the solution!

>

> Someone said: " I have one disablity, but thousands of abilities " . Use them,

and your disability is history.

>

> Beata

>

Hi I am new to your site...I thought this was a very touching post...I can

relate to, I find new ways everyday to work around my disabilities, and I will

continue to do this as long as I live..I have watched my entire family deal with

it through the years and I will keep the faith that someday, They will find the

cure. This is a very informative group, But who better to learn from then those

who " have already been there and done that " .

Sherry

[Guest guest]

Dear “MMVKC1â€,

 

Very well stated post!

 

I can relate.  I find the emotional issues of coping with CMT to be just as

challenging as the physical issues.   And, I agree, it’s something that we

try to keep to ourselves, for many reasons, as you outlined so well.

 

We are dealing with a disease that continues to progress.  When we get an

initial diagnosis or experience a significant problem for the first time, it may

be quite " ok " to discuss our feelings with those around us and we may get

emotional support from family and friends, but on an ongoing basis when little

changes continue to occur, most people don’t want to continue to hear about

it.  Sometimes people don’t want to be dragged down by the negativity.

 Sometimes we don’t want to drag ourselves down by talking about it.  Even

those with CMT can tire of hearing it and want us to " just get over it already " .

 

It’s easy for others to say " get over it " , but rare is the person who can

actually respond to that type of Dr. Phil approach.  Most of us need to know

the “how†of how to get over it.  How, exactly, do we manage?  How do we

cope?

 

That’s why this site can be such a valuable resource.  People can share the

“how†with each other.  Jackie talks about taking one day at a time.  This

is a technique I use too.  I’ve been in a funk for the last few days myself,

but I know it will get better.  I just try to keep my mind busy, focus on other

people (as Lynna talks about), and just get through each day.

 

At times, a good night’s sleep is all I need.  If I can’t fall asleep, I

listen to mindless TV, so my mind isn’t allowed to think about negative

things.

 

Controlling thoughts can help.  I remind myself that I can’t have a negative

emotion unless I first have a negative thought.  So, I don’t allow myself to

dwell.  I try to “change the channel†in my mind and force myself to think

about something or someone else.  It may not be what I want to do, but forcing

myself to do it can make a difference.

 

Beata and Jackie mention accommodations.  This has been a very helpful

technique for me as well.  When a new physical deficit appears, I might feel

that pang of sadness in the moment, but I’ll go online and look up how others

cope.  The amount of gadgets and gizmos is endless.  Many times finding just

the right tool that will help, should I get worse, makes me feel better right

away and takes away the fear.

 

Also, if there is a specific area of concern I have, I know I can express it to

the group and ask for feedback.  Recently, when I posted my fear of being

confined to a wheelchair, Jill said just what I needed to hear.  I still

remember something Kay said about managing in a chair, which helps as

well.  (Hope she’s doing ok right now.)  It helps to know that many people

have walked the same road ahead of me and managed just fine.

 

In addition to dealing with the physical decline, there are other emotional

issues that arise as a result of loss of mobility and not being able to work any

longer.  I went through a lot when I had to stop working.  So much of my

self-worth was tied up in my job.  I got tremendous satisfaction from my work

and enjoyed the camaraderie and friendships as well as the accolades and

rewards.  It was an emotional journey to rediscover my value and place in the

world, especially when most of my life was now being spent in bed or in a

reclining chair.  I still struggle with this from time to time.  Thank

goodness for my laptop caddy, my wireless keyboard, and especially the

Internet.  Connecting with support sites like this one has helped me to adjust

to this big life change.

 

Like you, I too experienced an unexplained, significant and rapid decline

recently.  I thought I would get better when I stopped working, but it never

happened.  Every time I think I’m doing a little better and start to do a

little more, I get knocked down.  My life over the last couple of years has

become one big experiment trying to figure what might help.  Do I try harder or

less hard?  Over and over, nothing helps and it’s difficult not to become

discouraged by it.

 

It takes tremendous inner strength to continually pick oneself up emotionally

and just keep smiling for the sake of those who love us.  It’s much harder

than those who don’t experience it realize.   I find that the level of

emotional difficulty is often commensurate with the degree of loss and physical

pain.  In other words, when my symptoms were mild, there was very little

emotional adjustment needed, but when change and/or pain became severe, the

emotional impact became much more challenging.  

 

This week, my “funk†is due to an emotional blow of having hope dashed.  I

had a back injection recently that brought me significant pain relief.  It gave

me real hope that my quality of life and ability to move could be better.  The

injection is supposed to last 3-4 months, but after just 2-1/2 weeks, the pain

has returned.  Despite applying all of my coping strategies over the last few

days, I still feel an underlying sadness.  If I allow my mind even a brief

moment to contemplate my reality, the tears come.  But, I know this feeling is

just temporary.  I’ll be ok soon.   That’s how this emotional

rollercoaster of a journey goes, repeated emotional stability interspersed with

occasional disappointments, grief, and sadness.

 

Sometimes it’s ok to just be sad.  Dealing with chronic, progressive loss and

chronic pain IS sad.  But, usually tomorrow is better.  At least, I’m hoping

so.  J

 

 

[Guest guest]

take ownership of our life ---- for all human beings

thus, if we have CMT, we still need to take ownership of our life

accepting the realiy, based on the reality, we try to improve and

enjoy our life before we die

On Thu, Aug 27, 2009 at 6:46 PM, Beata Boo <beataboo@...> wrote:

>

>

> CMT is hard to live with, because it gets worse, it limits what you are

> able do and what you have the strenght to do. It is easy to give up and

> think that now life can only be worse. But as we know, there are ups and

> downs in life. You might discover that you can't cut with a knife anymore -

> but then you discover knifes with angled grips. So you are back in

> business! Don't give up - find the solution!

>

> Someone said: " I have one disablity, but thousands of abilities " . Use them,

> and your disability is history.

>

> Beata

>

>

>

[Guest guest]

Very beautifully said. Thank you! I find the emotional journey to be as

challenging (if not more so) than the physical challenges. The knock downs are

tough, the disappointments very real. Best wishes to you for wellness and

pain-free days!

Lenka

[Guest guest]

Thank you, Lenka.

From: chaosrivermonster <lenka@...>

Subject: Re: courage to live with CMT

Date: Friday, August 28, 2009, 9:16 AM

 

Very beautifully said. Thank you! I find the emotional journey to be as

challenging (if not more so) than the physical challenges. The knock downs are

tough, the disappointments very real. Best wishes to you for wellness and

pain-free days!

Lenka