Re: Progression and Today

[Guest guest]

Hello all, I'm very sorry about the 2 post with nothing. My fingers cramp up

and I end up pressing keys I have no intention of pressing.

Today, has been a bad day. I was cleaning my home, with my husband

helping moving the furniture for me. Why am I telling all of you this?

Because I have always cleaned my house, moved the furniture, changed the

pictures on the walls etc.., all by myself, no help, even with the large

furniture. Today, is the first time I couldn't. I was so weak, I couldn't

even lift the lamps. I had a hard time just lifting the little things. I have

pain in my shoulders, and I am generally miserable right now, I guess what I

did do was over extending.

I can understand all of us that have posted about CMT progressing. In

fact, because of my weakness, I wrote the poem below. I hope/I know you will

all understand. We share the same frustration. Please feel free to voice your

opinion. My non-CMT friends did not like it and thought I was playing poor

me. See what you think. Much kindness and understanding, Michele

Progression

i dropped an heirloom today,

slipped through my hands

i couldn't rescue it before,

it collided with the floor

shattering, and

with it

a piece of my heart.

monetary value, not much

sentamental, more, but

just a trinket in the book of life

but still precious

the heirloom, that is.

but the piece of my heart

priceless

when i felt it break,

i wept.

for everyday

i worsen

a little weaker, here

a little clumsy, there

my time is getting short,

my independence, past.

i am becoming a soul

within the shell

of this decaying body.

i need tomorrow,

but i fear it,

i need to achieve

so much more,

but i have so little time.

until you step into my shoes

and touch my soul,

you will not understand,

and if you do,

then a piece of your heart

will shatter

too.

Thank-you for allowing me to share. Michele

[Guest guest]

Hi Michele, I liked your poem, and i wish other people and doctors who say

that i don't have any pain and that it won't get much worse could be ME for

one day! Marg.

[Guest guest]

Hi ,

I understand what you wrote about completely...I myself have been dealing

with a rapid progression of my CMT. I cry sometimes, too...I give myself

time to grieve my losses. I've been going through a very stressful situation

this past year...of course the CMT is much worse now. The poem you wrote is

beautiful...thanks.

Kathy in Brooklyn

[Guest guest]

In a message dated 12/6/00 6:48:30 PM Pacific Standard Time, Grmifo91@...

writes:

<< Please feel free to voice your

opinion. My non-CMT friends did not like it and thought I was playing poor

me. See what you think. Much kindness and understanding, Michele >>

Michele,

a here. I liked your poem, helps me better understand what you all go

through. In the past two weeks, has dropped a jar of strawberry

preserves and a jar or mayonnaise on the floor and they shattered to

smithereens. She dissolved into tears and I could not joke her out of it. I

just had to let her cry.

I am sorry you had a " tired " day, it must be frustrating.

a

[Guest guest]

Michele and the group,

An excellent poem. A copy ought to be posted in every neuro-doc's office who

deals with CMT'ers ! - EdM

-----Original Message-----

From: Grmifo91@... <Grmifo91@...>

egroups <egroups>

Date: Wednesday, December 06, 2000 9:32 PM

Subject: Re: [] Progression and Today

>Hello all, I'm very sorry about the 2 post with nothing. My fingers cramp

up

>and I end up pressing keys I have no intention of pressing.

> Today, has been a bad day. I was cleaning my home, with my husband

>helping moving the furniture for me. Why am I telling all of you this?

>Because I have always cleaned my house, moved the furniture, changed the

>pictures on the walls etc.., all by myself, no help, even with the large

>furniture. Today, is the first time I couldn't. I was so weak, I couldn't

>even lift the lamps. I had a hard time just lifting the little things. I

have

>pain in my shoulders, and I am generally miserable right now, I guess what

I

>did do was over extending.

> I can understand all of us that have posted about CMT progressing. In

>fact, because of my weakness, I wrote the poem below. I hope/I know you

will

>all understand. We share the same frustration. Please feel free to voice

your

>opinion. My non-CMT friends did not like it and thought I was playing poor

>me. See what you think. Much kindness and understanding, Michele

>

>Progression

>

>i dropped an heirloom today,

>slipped through my hands

>i couldn't rescue it before,

>it collided with the floor

>shattering, and

>with it

>a piece of my heart.

>

>monetary value, not much

>sentamental, more, but

>just a trinket in the book of life

>but still precious

>the heirloom, that is.

>

>but the piece of my heart

>priceless

>when i felt it break,

>i wept.

>

>for everyday

>i worsen

>a little weaker, here

>a little clumsy, there

>my time is getting short,

>my independence, past.

>

>i am becoming a soul

>within the shell

>of this decaying body.

>i need tomorrow,

>but i fear it,

>i need to achieve

>so much more,

>but i have so little time.

>

>until you step into my shoes

>and touch my soul,

>you will not understand,

>and if you do,

>then a piece of your heart

>will shatter

>too.

>

>Thank-you for allowing me to share. Michele

>

>

>

[Guest guest]

Michele,

Love it, and so true. Being alone my problems are compounded. What is done I

have to do or pay dearly to have done. Being the third generation of

collectors, I know the frustration you describe.

Hugs,

Lamar

----- Original Message -----

From: Grmifo91@...

egroups

Sent: Wednesday, December 06, 2000 09:37 PM

Subject: Re: [] Progression and Today

Hello all, I'm very sorry about the 2 post with nothing. My fingers cramp up

and I end up pressing keys I have no intention of pressing.

Today, has been a bad day. I was cleaning my home, with my husband

helping moving the furniture for me. Why am I telling all of you this?

Because I have always cleaned my house, moved the furniture, changed the

pictures on the walls etc.., all by myself, no help, even with the large

furniture. Today, is the first time I couldn't. I was so weak, I couldn't

even lift the lamps. I had a hard time just lifting the little things. I have

pain in my shoulders, and I am generally miserable right now, I guess what I

did do was over extending.

I can understand all of us that have posted about CMT progressing. In

fact, because of my weakness, I wrote the poem below. I hope/I know you will

all understand. We share the same frustration. Please feel free to voice your

opinion. My non-CMT friends did not like it and thought I was playing poor

me. See what you think. Much kindness and understanding, Michele

Progression

i dropped an heirloom today,

slipped through my hands

i couldn't rescue it before,

it collided with the floor

shattering, and

with it

a piece of my heart.

monetary value, not much

sentamental, more, but

just a trinket in the book of life

but still precious

the heirloom, that is.

but the piece of my heart

priceless

when i felt it break,

i wept.

for everyday

i worsen

a little weaker, here

a little clumsy, there

my time is getting short,

my independence, past.

i am becoming a soul

within the shell

of this decaying body.

i need tomorrow,

but i fear it,

i need to achieve

so much more,

but i have so little time.

until you step into my shoes

and touch my soul,

you will not understand,

and if you do,

then a piece of your heart

will shatter

too.

Thank-you for allowing me to share. Michele

eGroups Sponsor

[Guest guest]

Michele, that was a touching poem. We all feel the frustration, and you gave it

voice. If you are writing for your non-CMT friends, it's a stretch to ask them

to step into your shoes, or expect their hearts to be wrung, let alone shatter.

Reads great w/o the last stanza.

Jack

Grmifo91@... wrote:

> Hello all, I'm very sorry about the 2 post with nothing. My fingers cramp up

> and I end up pressing keys I have no intention of pressing.

> Today, has been a bad day. I was cleaning my home, with my husband

> helping moving the furniture for me. Why am I telling all of you this?

> Because I have always cleaned my house, moved the furniture, changed the

> pictures on the walls etc.., all by myself, no help, even with the large

> furniture. Today, is the first time I couldn't. I was so weak, I couldn't

> even lift the lamps. I had a hard time just lifting the little things. I have

> pain in my shoulders, and I am generally miserable right now, I guess what I

> did do was over extending.

> I can understand all of us that have posted about CMT progressing. In

> fact, because of my weakness, I wrote the poem below. I hope/I know you will

> all understand. We share the same frustration. Please feel free to voice your

> opinion. My non-CMT friends did not like it and thought I was playing poor

> me. See what you think. Much kindness and understanding, Michele

>

> Progression

>

> i dropped an heirloom today,

> slipped through my hands

> i couldn't rescue it before,

> it collided with the floor

> shattering, and

> with it

> a piece of my heart.

>

> monetary value, not much

> sentamental, more, but

> just a trinket in the book of life

> but still precious

> the heirloom, that is.

>

> but the piece of my heart

> priceless

> when i felt it break,

> i wept.

>

> for everyday

> i worsen

> a little weaker, here

> a little clumsy, there

> my time is getting short,

> my independence, past.

>

> i am becoming a soul

> within the shell

> of this decaying body.

> i need tomorrow,

> but i fear it,

> i need to achieve

> so much more,

> but i have so little time.

>

> until you step into my shoes

> and touch my soul,

> you will not understand,

> and if you do,

> then a piece of your heart

> will shatter

> too.

>

> Thank-you for allowing me to share. Michele

>

>

>

[Guest guest]

In a message dated 12/6/2000 9:48:44 PM Eastern Standard Time,

Grmifo91@... writes:

<< i am becoming a soul

within the shell

of this decaying body.

i need tomorrow,

but i fear it,

i need to achieve

so much more,

but i have so little time.

until you step into my shoes

and touch my soul,

you will not understand,

and if you do,

then a piece of your heart

will shatter

too.

Thank-you for allowing me to share. Michele

Michele,

The poem was beautiful, I certainly know how you feel for my hands are also

getting worse. Someone that doesn't have a disease like we do, would never

understand how we feel. Tomorrow is scary for me too, we just have to take

one day at a time and be thankful for the time that we have had. I hope you

keep sharing feelings with all of us. I get so scared sometimes that I just

have to cry. Do a lot of that. Let the people that are closest to you, help

you. If it's just to hold you and tell you that they will be there for you,

it helps. Don't give up.

[Guest guest]

Michele, You really touched me. I have broken things that my children made

when they were little and it damn near killed me inside. C

[Guest guest]

In a message dated 12/6/2000 10:57:59 PM Central Standard Time,

mikerobertac@... writes:

> My non-CMT friends did not like it and thought I was playing poor

> me. See what you think. Much kindness and understanding, Michele >>

>

>

It's like I always say, let them try to walk a mile in my shoes because I

certainly can't. My sister says she understands, but she got all bent out of

shape at Thanksgiving because apparently I wasn't pulling my own weight with

all the cooking, etc. But you know how it is, we're pushing ourselves to the

max and if we can't keep up then we're slackers----at least that's the way I

think that others think sometimes.

C

[Guest guest]

In a message dated 12/7/2000 9:28:43 AM Central Standard Time,

ktbugg54@... writes:

> Tomorrow is scary for me too, we just have to take

> one day at a time and be thankful for the time that we have had. I hope you

> keep sharing feelings with all of us. I get so scared sometimes that I just

> have to cry. Do a lot of that. Let the people that are closest to you, help

>

I cry a lot , too, but I also get angry and resentful. Y'all won't believe

what I do to releive the stress sometimes-------I have a bunch of clay pots

that i have cracked or broken over the years and when I get real upset, I

throw them down and smash them on purpose! Sounds crazy, but it works. I call

it " controlled breakage. " It's great therapy, instead of dropping things

accidentally like we all do a lot, I get to decide what gets broken and when.

C

[Guest guest]

In a message dated 12/8/2000 4:18:21 AM Eastern Standard Time,

C1520@... writes:

<< I cry a lot , too, but I also get angry and resentful. Y'all won't believe

what I do to releive the stress sometimes-------I have a bunch of clay pots

that i have cracked or broken over the years and when I get real upset, I

throw them down and smash them on purpose! Sounds crazy, but it works. I

call

it " controlled breakage. " It's great therapy, instead of dropping things

accidentally like we all do a lot, I get to decide what gets broken and

when.

C >>

Hey, sounds good to me. I had never thought of that. I've sometimes wanted to

throw things that I don't want to break. Somehow, I've refrained. Maybe I'll

try your therapy.

[Guest guest]

Michele, sounds as tho you do not have very understanding people around you, but

then none of us gets to choose our family. Maybe giving them some literature

about CMT would help. Or you could print out some of the inputs you see on this

site.. Understanding, of course, is a 2-way street. Maybe mentioning that you

understand how frustrating it is for your sister when you can't work at her

speed? We are all the Star in our own picture shows, but we're only bit

players (supporting players at best) in other peoples picture shows. All we can

try to do is play those bit parts as well as we can. Asking other people to

walk a mile in your shoes is a little like trying to be the director of their

picture shows.

You write well, sound like you have a good mind, and I'm sure will find ways to

ease the family tensions.

Best wishes and keep plugging,

Jack

C1520@... wrote:

> In a message dated 12/6/2000 10:57:59 PM Central Standard Time,

> mikerobertac@... writes:

>

> > My non-CMT friends did not like it and thought I was playing poor

> > me. See what you think. Much kindness and understanding, Michele >>

> >

> >

>

> It's like I always say, let them try to walk a mile in my shoes because I

> certainly can't. My sister says she understands, but she got all bent out of

> shape at Thanksgiving because apparently I wasn't pulling my own weight with

> all the cooking, etc. But you know how it is, we're pushing ourselves to the

> max and if we can't keep up then we're slackers----at least that's the way I

> think that others think sometimes.

> C

>

>

[Guest guest]

, sounds like you could profit from a sympathetic ear more than breaking

pots. Any counselors around? Clergy?

Best wishes,

Jack

C1520@... wrote:

> In a message dated 12/7/2000 9:28:43 AM Central Standard Time,

> ktbugg54@... writes:

>

> > Tomorrow is scary for me too, we just have to take

> > one day at a time and be thankful for the time that we have had. I hope you

> > keep sharing feelings with all of us. I get so scared sometimes that I just

> > have to cry. Do a lot of that. Let the people that are closest to you, help

> >

>

> I cry a lot , too, but I also get angry and resentful. Y'all won't believe

> what I do to releive the stress sometimes-------I have a bunch of clay pots

> that i have cracked or broken over the years and when I get real upset, I

> throw them down and smash them on purpose! Sounds crazy, but it works. I call

> it " controlled breakage. " It's great therapy, instead of dropping things

> accidentally like we all do a lot, I get to decide what gets broken and when.

> C

>

>

[Guest guest]

Great idea, about controlled breakage, that is. Perhaps I will try it. The

holidays can be frustrating when I can't shop as long as I would like to,

etc. But, I guess we can do it a little bit at a time!

[Guest guest]

Jack, Thanks for the suggestion, but I promise you have great support from my

husband, children, friends, priest, and therapist. I just need to physically

express my self sometimes--- I get tired of talking. I'm not mad at anybody,

just frusrated. That's why I have my controlled breakages. It makes me

healthier in the long run. I raise trees for a living and have to do

controlled burns to allow a healthy forest to grow----it's the same idea.

C

[Guest guest]

Well , as we said in the 60's--whatever. Or was it whatever works? That

does make a difference. As a young man, I used to put my fist thru plate glass

windows. Made me feel better. But didn't make me better.

Of course, we're all different and if pot popping gets you thru the day or nite

or whatever you need to get thru, more power to you. By the way, do you have

various types of pots for various frustrations or levels thereof? I mean, for

the bigger frustrations do you pop bigger pots, prettier pots, older pots, more

perfect pots, more misshapen pots, special colors of pots, what?

The more I think of this, the more potential I can see. I can visualize a whole

new school of therapy evolving, perhaps incorporating a ceramics workshop to

create pots to fit individual needs. Or potters developing specialized lines for

the individual needs of special clienteles.

Anyway, the best of luck to you. We all need it.

Jack

C1520@... wrote:

> Jack, Thanks for the suggestion, but I promise you have great support from my

> husband, children, friends, priest, and therapist. I just need to physically

> express my self sometimes--- I get tired of talking. I'm not mad at anybody,

> just frusrated. That's why I have my controlled breakages. It makes me

> healthier in the long run. I raise trees for a living and have to do

> controlled burns to allow a healthy forest to grow----it's the same idea.

> C

>

>

[Guest guest]

In a message dated 12/10/2000 12:19:33 AM Eastern Standard Time,

C1520@... writes:

<< That's why I have my controlled breakages. It makes me

healthier in the long run. I raise trees for a living and have to do

controlled burns to allow a healthy forest to grow----it's the same idea.

C >>

A lot of therapist would go along with the controlled breakage therapy. I

think it is a great idea, you're not hurting anything or anyone. I certainly

understand frustrations. It would probably help me more if I done something

similar. I tried talking to pastor once, he didn't care and told me so. Guess

that just proves they are human, like everyone else. God is my best therapy,

next to Him is my hubby.

[Guest guest]

Michele,

I just read your beautiful poem re: our problems. It expresses so much

within all of us. I always ask my support group people to pray for the

researchers so that they might find some HELP for us.

Please remember that there are still many things you can do; perhaps just

being with your loved ones is the best of all, your gift of your time to and

with them.

BLESSINGS,

ANGELA