Acceptance

[Guest guest]

What a wonderful resolution as we head into the new millennium! I'd also like

to add that a *bad day* or week, as per the waxes and wanes, does not take

away from all the progress. It may be two steps forward and one back...but

when the wane returns, it's back to two steps forward.

Just a reminder from someone who needs to keep reminding herself! :-)

Take good care

In S. Ontario, Cda.

<<

You made an excellent point about accepting the waxing and waning involved

in our struggle with OCD and it's spectrum of associated disorders.

Remaining calm, being patient, refusing to fear the future for our OCD'ers,

not giving in to anxiety, are all things that I need to nourish in 2000 and

beyond. I also need to remember that progress is progress and is not

diminished by it's apparent slowness. Thinking about how far we have

come in our struggle really does help.

Take care.

Louis

harkins@...

>>

[Guest guest]

This was a beautiful site. Thanks for sharing.

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

From: Esther & Carol <cheerios@...>

< egroups>

Sent: Thursday, July 06, 2000 11:23 PM

Subject: [ ] Acceptance

> http://www.ishaah.com/Acceptance.htm

>

[Guest guest]

alisha here,

i have been doing a lot of thinking myself on this topic. infact i have been

falling behind again on my messages again.

for myself, i use a walker for my pain and fatigue only. i can walk without

it with no problem. i hate using stairs but i have to at home. at school i

use the elevator. i take the long way around the school to avoiid any

stairs. besides most people believe that i am still faking this all. some of

them r my friends that think this. i have known this for a long time and it

used to really bother me. for all the new members out there i am 17 and

still in high school. i have a reduced time table to help me at school so i

will be in high school a little longer then everyone else.

i haven't accepted my CMT. i was diagnosed when i was 13 and everything has

gone down hill from there. i have come into so many hard times for me to

cope with its been hard. i have been really angry at a lot of things that

have happened.

honestly i don't know why i can't accept my CMT, i am scared for one thing.

i don't know what will happen. i see my grandfather, he is in his 70's. his

CMT is severe, he uses 2 walkers, 2 canes, a wheelchair and a scooter. no

one talks about CMT in our family, its our little family secret i guess u

could say but they all know what's going on with me. it took me 4 years to

forgive my mom and accept that i have no control over my pain. its going to

take time, no matter how many people tell me to just accept i can't do that

on a whim because that's not how i do things.

hope this helps

alisha

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi Alisha,

My name is . I know what you mean about the " acceptance " thing. My

life has not exactly turned out the way that I thought it would, but I've

decided to quit thinking of myself as " DISABLED "

and have begun to think of myself as " DIFFERENTLY ABLED! "

Sometimes, that's all it takes. And I think Gretchen is right, I think we

ARE a smarter group of people because we have learned to overcome the

obstacles that life has thrown in our way. Hang in there sweetheart, life

is not through with you yet!!!

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

From: Alisha Peckham <fivertherabbit@...>

< >

Sent: Saturday, August 18, 2001 9:42 AM

Subject: [] Re: acceptance

> alisha here,

>

> i have been doing a lot of thinking myself on this topic. infact i have

been

> falling behind again on my messages again.

>

> for myself, i use a walker for my pain and fatigue only. i can walk

without

> it with no problem. i hate using stairs but i have to at home. at school i

> use the elevator. i take the long way around the school to avoiid any

> stairs. besides most people believe that i am still faking this all. some

of

> them r my friends that think this. i have known this for a long time and

it

> used to really bother me. for all the new members out there i am 17 and

> still in high school. i have a reduced time table to help me at school so

i

> will be in high school a little longer then everyone else.

>

> i haven't accepted my CMT. i was diagnosed when i was 13 and everything

has

> gone down hill from there. i have come into so many hard times for me to

> cope with its been hard. i have been really angry at a lot of things that

> have happened.

>

> honestly i don't know why i can't accept my CMT, i am scared for one

thing.

> i don't know what will happen. i see my grandfather, he is in his 70's.

his

> CMT is severe, he uses 2 walkers, 2 canes, a wheelchair and a scooter. no

> one talks about CMT in our family, its our little family secret i guess u

> could say but they all know what's going on with me. it took me 4 years to

> forgive my mom and accept that i have no control over my pain. its going

to

> take time, no matter how many people tell me to just accept i can't do

that

> on a whim because that's not how i do things.

>

> hope this helps

>

> alisha

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

[Guest guest]

hi alisha, my name is kelly and i'm 20 years old.

even though i've had this my entire life, i was just

diagnosed with it in april. now all i can do is cry

sometimes. some days i'll wake up and my legs won't

want to work at all. other days are a little better.

what really sucks is going out on a date and they walk

so fast that it's like a battle trying to keep up with

them, without falling (happened last night). (i

usually don't mention my cmt on first dates.)

everything you mentioned is exactly what i went

through in high school. i hated pep rallies because

we had to sit in the bleachers, and of course my

friends always wanted to sit at the very top. i have

fallen and cut up my shins while walking UP the

bleaches. at this point i had no idea what was going

on with me even though i knew something wasn't right.

i used to cry and ask myself why i couldn't do stupid

things like wear high heels, run, wiggle my toes, use

stairs without railings, or walk in a room with people

around me without falling over. i can't walk through

the mall anymore or go in the water at the beach.

(getting out of the water is a pain when waves are

crashing against you and your feet are just flopping

around like dead weight.) it's hard being young and

missing out on normal everyday things that people our

age do. you will find that though some are

sympathetic, they will never fully understand the

trials and tribulations we have to face constantly.

they don't understand that this is something that will

always be on our minds. i, too, am having a very hard

time with this. but all we can do is deal with it.

just try to take advantage of each and every day to

its fullest. there's no sense in putting things off

for another day. it goes without saying that life is

to short to dwell on unhappiness. just don't take the

little things for granted. and take full advantage of

every situation and every chance you get. if you ever

want to chat, i'd be honored to be here for you.

everyone here is awesome. they have all been in our

shoes once, and they have good advice. but it's also

nice to share with someone who is kind of in the same

boat

love, kelly

--- " Mr. Bracamontes "

<bracamontes@...> wrote:

> Hi Alisha,

> My name is . I know what you mean about the

> " acceptance " thing. My

> life has not exactly turned out the way that I

> thought it would, but I've

> decided to quit thinking of myself as " DISABLED "

> and have begun to think of myself as " DIFFERENTLY

> ABLED! "

> Sometimes, that's all it takes. And I think

> Gretchen is right, I think we

> ARE a smarter group of people because we have

> learned to overcome the

> obstacles that life has thrown in our way. Hang in

> there sweetheart, life

> is not through with you yet!!!

>

> ----- Original Message -----

> From: Alisha Peckham <fivertherabbit@...>

> < >

> Sent: Saturday, August 18, 2001 9:42 AM

> Subject: [] Re: acceptance

>

>

> > alisha here,

> >

> > i have been doing a lot of thinking myself on this

> topic. infact i have

> been

> > falling behind again on my messages again.

> >

> > for myself, i use a walker for my pain and fatigue

> only. i can walk

> without

> > it with no problem. i hate using stairs but i have

> to at home. at school i

> > use the elevator. i take the long way around the

> school to avoiid any

> > stairs. besides most people believe that i am

> still faking this all. some

> of

> > them r my friends that think this. i have known

> this for a long time and

> it

> > used to really bother me. for all the new members

> out there i am 17 and

> > still in high school. i have a reduced time table

> to help me at school so

> i

> > will be in high school a little longer then

> everyone else.

> >

> > i haven't accepted my CMT. i was diagnosed when i

> was 13 and everything

> has

> > gone down hill from there. i have come into so

> many hard times for me to

> > cope with its been hard. i have been really angry

> at a lot of things that

> > have happened.

> >

> > honestly i don't know why i can't accept my CMT, i

> am scared for one

> thing.

> > i don't know what will happen. i see my

> grandfather, he is in his 70's.

> his

> > CMT is severe, he uses 2 walkers, 2 canes, a

> wheelchair and a scooter. no

> > one talks about CMT in our family, its our little

> family secret i guess u

> > could say but they all know what's going on with

> me. it took me 4 years to

> > forgive my mom and accept that i have no control

> over my pain. its going

> to

> > take time, no matter how many people tell me to

> just accept i can't do

> that

> > on a whim because that's not how i do things.

> >

> > hope this helps

> >

> > alisha

> >

> >

>

_________________________________________________________________

> > Get your FREE download of MSN Explorer at

> http://explorer.msn.com/intl.asp

> >

> >

> >

[Guest guest]

Birdie,

I too am glad to know that there is more than myself feeling this way. I wish there was a way everyone could be treated with something, even if it was just to settle their mind. This is a very stressful disease. Yes, there are others out there as well, but as you say many have choices. In the end it is Our own personal choice as to whether we will do something about it when we can or choose not to.

Whatever the choice it should be respected.

The line between Love and Hate is thin just as Stubbornness and Strength, and Cowardice and Courage.

Stay Safe, Irish

[Guest guest]

Dear Nina,

I read your email! I found your experiences quite

similar to those of mine! I also feel that CMT people

are special, and need to be treated in a special

caring way )

Anyway, hope you are doing fine!

With best wishes!

Sameer

[Guest guest]

,

Thank you so much for that post. I have been having a

hard time accepting that I am too tired to do things and am angry at the

cmt, your post made me feel better. anyway thanks again.

ka

[Guest guest]

Barb:

I applaud you, I'm not there yet, but seriously considering

taking the plunge.

[Guest guest]

good for you, Barb. your legs take you where you want to go and as

long as you feel good that is all that counts...

Cathleen in Arkansas

[Guest guest]

Every once in a while we come across some really down to earth nice people.It is a feel good feeling when we do.

So often we are in a group,friend or family situation and everyone knows what you have,but nobody wants to ask or say anything to you.It is really awkward.

I quess thats what we are all here.

[Guest guest]

I agree. Sadly I don't always acknowledge it to myself and others. Thanks

Mike

[Guest guest]

,

Welcome. Yes walking is difficult, standing can be excruciating.

There fore I must find a job where I can sit most of the day. I wear

AFOs and even then standing is difficult although it does make

walking mush easier.

I wondered if I should walk for exercise and a Dr. told me " absolutely not " so

there you have it. My hands are also afected, but not as bad as my feet - yet.

My right side is more affected than my left. I notice that fine motor skills

are going and the strength - you know to even open a jar.

I have frustrations and anger, initially, but one learns to accept and get on or

it will beat us! All the best to you!

>

[Guest guest]

In a message dated 10/16/2006 5:15:36 A.M. Eastern Daylight Time, bostoncounselor@... writes:

When one is sick, the other is nurse - and vice versus. Clearly, her illness is more dabilitating and severe than mine, and the side effects of being immune supressed are terrible. So, I takte care of her more. It is draining. We are at this point of deciding to marry or move in together, she want's to do it now while she can or find a partner who is willing. I am one not sure if this is love... or loving caretaking.

Cut her loose. She deserves more than she's gonna get.

Anne

[Guest guest]

In a message dated 10/16/2006 12:44:09 P.M. Eastern Daylight Time, forevermylove50@... writes:

He walked out right after my operation telling me I was to handicapped to deal with. He never gave me a chance to heal he never cared about me at all.

,

I can understand your hurt. My marriage ended with a lot of pain (for me) and he seemed to walk away like it was nothing---and was remarried 3 months later. A wonderful Catholic priest got inside my head and talked to me, and at me, and listened and let me cry when I needed to. Hope you find someone you can talk to. It can make a huge difference. The most important thing for me was he helped me realize that no two people love (or anything else) the same way. He (my husband) didn't love me the way I wanted--or maybe needed--to be loved, but that didn't mean he wasn't giving it all he had.

Anne

[Guest guest]

Anne I like the way you said this. It is true. It is hard to love

people the way they want to or need to be loved sometimes.

>

>

> In a message dated 10/16/2006 12:44:09 P.M. Eastern Daylight Time,

> forevermylove50@... writes:

>

> He walked out right after my operation telling me I was to

handicapped to

> deal with. He never gave me a chance to heal he never cared about

me at all.

>

>

> ,

> I can understand your hurt. My marriage ended with a lot of

pain (for

> me) and he seemed to walk away like it was nothing---and was

remarried 3 months

> later. A wonderful Catholic priest got inside my head and talked

to me, and

> at me, and listened and let me cry when I needed to. Hope you find

someone

> you can talk to. It can make a huge difference. The most important

thing for me

> was he helped me realize that no two people love (or anything

else) the same

> way. He (my husband) didn't love me the way I wanted--or maybe

needed--to

> be loved, but that didn't mean he wasn't giving it all he had.

> Anne

>

[Guest guest]

When I got really sick, I had been dealing with

fibromyalgia and migraines for years and years. I was

found to have thyroid cancer because of xray

treatments for acne when I was a teenager. I broke my

ankle also. I had 5 surgeries in less than a year.

My husband thought I was 'faking' my disability. I had

had my bedroom stuff moved downstairs into the dining

room so I could be around my family more. They didn't

come to talk to me and I had no stereo or TV or window

there so I moved back upstairs.

My husband never brought me anything for breakfast or

lunch. He never checked to see if I lived through the

night. He made one trip upstairs a day - to bring me a

dinner plate. If I didn't tell him something I needed

or if he forgot to bring something (like a fork) I had

to do without.

I would bump downstairs on my bum to get to the

kitchen and get whatever I could to help me through

the next day. I'd get fruit, bottles water, bread.

This was why he thought I was faking it. It didn't

occur to him that once I finally had some nourishment

in my body, I had the energy to crawl to the kitchen

for more food for the next day.

He sold his car and took mine over. I was a prisoner.

When I got my back disabiliy, he thought he was in

high cotton. He was going to spend all of my back

money plus my son's. I got my son's money into a

savings account earmarked for college. My husband got

$750 a month to raise our son. He started 'charging'

him rent,groderies, utilities - everything he could to

get whatever money he could. The last I knew he owed

my son about $8000 that my son will never see.

We had run up bills and credit cards in the 4 years I

was bed-bound. Never have your disability check

deposited into a joint account to get it more quickly

unless you and your spouse have a very good

relationship. Joe put a lot of money and stuff in his

name only saying that he didn't have tie to come to

the house to get me and things had to be put in place.

Remember, he had confiscated my car so he's have a

better one and left me with no transportation.

I made it to the bank one day and put 1/3 of my back

disability money into an account in my name only. Boy

was my hubby furious. I told him I was leaving. He

said fine as long as I returned the money I had. He

said it was all back wages and should stay in the

marriage to reduce debt. I had already put 2/3 of the

money toward that. I felt like the other 1/3 was mine

to start a new life minus him.

I wish my son had come with me, but at 15, his friends

were more important and he would never be happy living

in the boonies. I had stayed in the relationship for

my son's sake as long as was humanly possible.

I had a little voice telling me the day before the

wedding that I was marrying the wrong man. I was a

very shy, couldn't stand up for myself person in those

days. I didn't know how to get out of the wedding so I

married him. And I have paid the price over and over .

.. .

Willow

--- AStep17427@... wrote:

> He walked out right after my operation telling me I

> was to handicapped to

> deal with. He never gave me a chance to heal he

> never cared about me at all.

[Guest guest]

In a message dated 10/16/2006 8:25:11 P.M. Eastern Daylight Time, bostoncounselor@... writes:

It is not the "work" of taking care of her that this is about...it is my conflict of missing passion and "love"

If you have to ask those questions, there is no love there. You might as well marry your sister. Let her go and find the kind of guy/relationship she needs.

Anne

[Guest guest]

Welcome to the group Boston,

I'm Helen, 55, from NW Ohio...

If your already having doubts then there is indeed something wrong in the relationship... You need to be talking to your other half of your concerns is my opinion... She too deserves that much...

((( Welcoming Hugs )))Helen

I'm new to the group. Glad I found it. I posted this earlier but it didn't make it up.My life is not where I expected it to be...and I am trying to answer a question.At 30 I developed (adult onset) chronic, disabling Migraine with complex siezure. It effected every dimension of my life (lost my career, savings, and social life) I met a wonderful, loving woman who is an 8 year survivor of a Lung Transplant (from CF). That was 3 years ago. We struggle to take care of each other. When one is sick, the other is nurse - and vice versus. Clearly, her illness is more dabilitating and severe than mine, and the side effects of being immune supressed are terrible. So, I takte care of her more. It is draining. We are at this point of deciding to marry or move in together, she want's to do it now while she can or find a partner who is willing. I am one not sure if this is love... or loving caretaking. I feel obligated to continue with the relationship, and taking care of her. But this is not who I thought I would be with, or what my life would be in my late 30s.So here is the question that keeps me up each night.Do I accept the life I'm living,or chase the one I wanted?

"When life's problems seem overwhelming, look around and see what other people are coping with. You may consider yourself fortunate."

[Guest guest]

Thanks for sharing. It sounds like you had some really painful, unfair

experiences with

people. I'm sorry. Those situations sound terrible.

Although I can't relate too well because we have a very giving, mutual

partnership. I have

learned a great deal about compassion and giving to another from this

relationship. My own

male ego has been deflated to a more healthy level of humility, and making

sacrafices for

someone out of love has become a lesson for me.

It is not the " work " of taking care of her that this is about...it is my

conflict of missing

passion and " love " My love has become doing loving things for her, receiving

acts of love

from her...but there is something missing for me that has nothing to do with

hers or my

illness.

If I was sure...from my heart, (not from the dependency or fear of abandoning

her), and as

long as I am not in dark room, dizzy, with an ice wrap around my head and shot

up with 6mg

Imitrex....I would bring her breakfast and her 35 pills a day for the rest of my

life.

If...

[Guest guest]

If you aren't sure, you need to tell her and get out *now, " for your sake as well as hers. TraceyOn 10/16/06, bostoncounselor <

bostoncounselor@...> wrote:f I was sure...from my heart, (not from the dependency or fear of abandoning her), and as

long as I am not in dark room, dizzy, with an ice wrap around my head and shot up with 6mgImitrex....I would bring her breakfast and her 35 pills a day for the rest of my life.If...

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[Guest guest]

I have a slow degenerative disease. When I got married you couln't

tell that I was sick. 19 1/2 yrs later, when I couldn't walk and was

on a mobility scooter full time, he left in an awful way. Alot of

lieing and manipulation. It has been 6 yrs and I still have abandonment

issues. He said he tried. I believe it. He fell out of love with me

when my handicapp got so noticable it embarrassed him. He got

remarried 30 days after the divorce was final. We don't speak. I have

to figure out the future on my own. I hope your abandonment feelings

and mine go away.

[Guest guest]

((Hi...I am Marely))

I think most of us have a life we never expected but its the hand given to us in life. Now its up to us how we choose to live it. I am in a wheelchair and my boyfriend is an abled body. I can understand where you are coming from, at times I feel I am draining him with him transfering me thru out the day. I am sure this isnt what he was looking for in a relationship.

But the TRUE question is are you Happy in the relationship? Dont stay in your relationship out of obligation...thats not fair to you nor her. If it was love and you were truly happy, it wouldnt matter how much you had to care for her needs. Your question wouldnt cross your mind...you would care to all her needs naturally and it would come out of love not because you feel obligated to.

This is only my opinion, you do what you feel you need to do. Just be happy and dont let life pass you by and you not being truly happy.

Much luck to you!

Marely

I'm new to the group. Glad I found it. I posted this earlier but it didn't make it up.My life is not where I expected it to be...and I am trying to answer a question.At 30 I developed (adult onset) chronic, disabling Migraine with complex siezure. It effected every dimension of my life (lost my career, savings, and social life) I met a wonderful, loving woman who is an 8 year survivor of a Lung Transplant (from CF). That was 3 years ago. We struggle to take care of each other. When one is sick, the other is nurse - and vice versus. Clearly, her illness is more dabilitating and severe than mine, and the side effects of being immune supressed are terrible. So, I takte care of her more. It is draining. We are at this point of deciding to marry or move in together, she want's to do it now while she can or find a partner who is willing. I am one not sure if this is love... or loving caretaking. I feel obligated to continue with the relationship, and taking care of her. But this is not who I thought I would be with, or what my life would be in my late 30s.So here is the question that keeps me up each night.Do I accept the life I'm living,or chase the one I wanted?

[Guest guest]

Dear ,

I am sorry that your husband proved to be less than he

promised to be. My husband was cut from similar cloth.

For a long time he thought that I was just lazy and

'faking it.' When it finally sunk in that I was not

going to get well enough to return to work, he showed

me in no uncertain terms that I was only a paycheck to

him. Without the $$$ I was not attractive enough to

cause him to stay. 28 years together meant nothing.

Willow

--- jumpnjen17 <jumpnjen17@...> wrote:

> I have a slow degenerative disease. When I got

> married you couln't

> tell that I was sick. 19 1/2 yrs later, when I

> couldn't walk and was

> on a mobility scooter full time, he left in an awful

> way. Alot of

> lieing and manipulation. It has been 6 yrs and I

> still have abandonment

> issues. He said he tried. I believe it. He fell

> out of love with me

> when my handicapp got so noticable it embarrassed

> him. He got

> remarried 30 days after the divorce was final. We

> don't speak. I have

> to figure out the future on my own. I hope your

> abandonment feelings

> and mine go away.

>

>

>

>

[Guest guest]

I am so sorry about your husband. How long has it been? My problem is

the emotional side of it. I don't love him but, I'm still so hurt. It

has been six years! It's better but I want the hurt to stop. Thanks

for letting me know I'm not the only damaged ex-wife. All my friends

are still happily married. I start to think I'm the only person to

ever be wronged.