Re: I hate this some days

[Guest guest]

Matt.

Good for you but I wouldn't be able to handle your day!!!!!!!!

Geri

[Guest guest]

I don't mean to sound in-sensitive but...... a few things:

1. If you wake up on a Monday am tired--- you are not taking care

of yourself and that makes it your fault! It is important to work

and with a 9-6 job Monday - Friday as a piority you must sleep and

rest all weekend if need be.

2. If you can be helped by AFOs you need to get them - A

dysfunctional gait(even a gait that looks normal or off a little?)

can drain energy faster than we can believe. (someday I will forward

a reshearh paper that measured energy use in gait dysfunction)

3. Are you over weight?

4. Stressed?

5. Healthy life style and some form of exercise and life control is

NOT AN OPTION FOR CMT'ERS! NO SHORT CUTS AND NO EXCUSES!

Sorry - you hit a sore point with me - I attend Pt 1-3x a week,

stretch, attend numerous other health appt, work a career that is or

can be stressful, work at it 6- 12hrs per day, can work 7 days a

week, single mom of two teenagers, perfectionish, etc... I feel

blessed when I am able to use my wonderful health insurance and

spend approx 10% of my income to get healthy, stay healthy or figure

out what I need to do next in order to manage a chronic health

issue.

Do I need to go on? No..... but no matter anyone's specific

challenges no should wake up on a Monday morning exhausted!!!

As a matter of fact.... I was honored to be on a cover of local

newspaper magizine.... You got it .... I did the pictures Monday am

bright and early. Good Luck..... at staying Rested......

Kim

[Guest guest]

Thanks Geri.

[Guest guest]

Hi Matt,

I'm so sorry for your difficult week.  I can relate to your frustration.  It's

hard to be in a situation that highlights our weaknesses.  Also, it's difficult

when changes (or declines) occur.  Even it it's a small change, it can trigger

feelings of grief.  That's completely normal and I can relate.  Even if we think

we've adjusted, if things change faster than expected, it can trigger this type

of grief.  So your feelings are normal!

In reading your story, it sounds to me like you performed very well.  The guy

with the bad ankle may have beat you, but you have two bad ankles, two bad feet,

two bad legs and compromised nerves throughout your body.  That's much more

difficult to deal with than just one bad ankle!!!

One last thought, if you are yawning at the beginning of the week, that's not

normal CMT fatigue.  It sounds like you aren't getting restful sleep.  Do you

have sleep apnea???  You may want to have a sleep study to get yourself checked

out.  Using a bipap machine can make a huge difference, if apnea is a problem

for you.  Talk to your doctor, ok?  And be proud of what you were able to

accomplish this week.  You did great!!!

[Guest guest]

Hi Kim.

I have been thinking about what you said and the best to reply since you are

right about some stuff and off base with other stuff. So I thought best to

answer in this fashion.

Yes, I exercise 3 or more days a week. If I did not I would not be able to do

as much as I can. So you are right there, we all must exercise to the best of

our ability. About taking care of myself you are wrong. I have an extremely

busy life with 3 children 8,6,3 who get more of my time then myself or my wife.

They take every bit of your time while you are awake and asleep too, would be

nice to get a full nights sleep when either I don't wake up by myself or, get

woken up by my 3 year old jumping in bed with us (although I really love it,

hehehehe). Its only once they go to bed that you get time for your self and

when I say that I mean, cleaning, preparing lunches, laundry, etc..... My wife

works most weekends, so I do it myself on the weekends and don't get much time

to rest. Normally my weekdays are less draining then the weekends. Fact of

life with 3 kids. I don't have an opportunity to rest all weekend.

Over weight, yes. I guess more exercise in in order but, tough. Draining

already. Stressed, always. I work for a Bank so times are bad right now.

Stress is always there.

" Do I need to go on? No..... but no matter anyone's specific

challenges no should wake up on a Monday morning exhausted!!! "

This is just plain incorrect. Everyone's life is different and priorities are

different. After spending 2 full days with 3 children and doing chores around

the house, I think I am entitled to be exhausted.

Congrats on making the paper, I am truly glad you can take care of your self so

well. Personally, I would have to do the pictures on a Friday morning. Would

be best for me. Like I said, we are all different.

One last thing. " Monday - Friday as a piority you must sleep and

rest all weekend if need be. " JUST NOT AN OPTION, plain and simple.

(Ontario, Canada)

[Guest guest]

Hey Matt!

We know just how you feel, some days (and weeks) are like that, some aren't, and

the only thing to do is persist. My week, for instance, consisted of enduring a

rather unpleasant virus of some sort. In addition to being more fatigued than

usual, I spent a day and a half sleeping almost non-stop (39 hours!)

I work with my loving lady, doing home-based child care, in addition to working

at starting our own Gem and Mineral business. She is able to " pick up the slack "

when I have a " bad day, " which happens often, and I am able to assist and

support her when she is troubled by her own health challenges. So, we muddle by,

and things are progressively improving from the lows of this past spring, when

our client base was all mortgage professionals, and were ALL laid off.

My spirits are good today, with the quiet that comes each weekend. I'm working

at learning the ins and outs of Ebay auctions, to sell the lovely, fragile and

perishable Halite specimens we collected in October, out in the desert west of

Death Valley. For a CMT sufferer, I am one of the fortunate few.

I have " essential tremor, " constant pain and " shadow " sensations, and am

troubled by balance problems and a crappy immune system, but am more physically

able than many other CMT sufferers. So yes, I DO do many of those things that

you see miners do, with the most notable exception of " blasting, " which I wish I

had the training for. *WEG!* And yes, I do pay for it physically, but " ya

gotta do what ya gotta do! "

So, I feel your pain! (Literally!) For me the week brought a new " sensation. "

It's sort of like the " zaps! " of lightning pains that I wrote of last week,

except it occurs in a " spiderweb " pattern across my forearms or the tops of my

toes, followed by intense itching. Just another in the seemingly endless

surprises that CMT brings to my life.

My biggest challenge recently has been in interviewing for jobs, since I

continue to seek outside employment, having been laid off back in April. I

prefer to interview with immigrants, since they ask quite simply " why do you

shake? " , rather than assuming that I'm an alcoholic, as many of my fellow

" native born " Americans do. It's gotten so I simply announce my tremor and its

cause, and do so with a smile. Still, it's very depressing when you receive

repeated " your resume is excellent, but we're hiring someone else " emails. So,

back to being a small businessman, instead of working for an employer.

Re: your " squeezing " sensation, it's quite familiar to me, being one that is

almost always present in my own feet, and has been for years. I don't mind it as

much as the " numb " feeling where I can still feel pressure on my skin, but it

feels " numb. " I wish it was easier to explain these sensations. It's almost

impossible to describe them adequately to a non-sufferer.

As with you, I truly appreciate the commiseration we afford each other, and the

voices of support we share. My thanks to the Moderator and to all of those who

" buck me up " with their good words.

Ciao, y'all!

Kris

________________________________

From: Matt & Marg <mm.morse@...>

Sent: Friday, November 14, 2008 6:13:36 PM

Subject: I hate this some days

OK, now I think you hopefiully all know me and I am not one to complain to much

buttttttttttttttttt tttttttttttttt.

This week has been awful. I work in IT as a Client Support rep for Network

infrasturcture. For thoose that don't know what that is, here is a small

explaination. I work mostly with CISCO network hardware, and I am technical to

the point where I explain things to business folks and assist them with there

network needs. I then take the buiness requirements to the very technical people

and make sure they deliver what the business expects. Anyways..... I have done

some training in the past and I have been lucky enough to continue my training

this past week.

It all started Monday morning at 5:45am with the alarm going off. Tired to

begin with. Get up do the usual make it to the train by 7:10, buy my ticket go

wait for the train. Get to Toronto by 8:20. Walk as fast as I can to get to the

training centre. 10 minutes, class start by 8:30. 10:15am, you guessed it, I'm

falling asleep. I was yawning by 9:15. Keep nodding off and wakeing up

throughout the rest of the day. Of course I look around no one else is yawning.

Getting me frustrated as such. Actually kinda angry by the end of the day. Now

I know I am one of the more fortunate ones, and I can do this at all. I am not

use to not being able to do things. Sure I get tired, sure things hurt more

then others and I do it slower but this time it all really seemed to be hitting

me up side the head. Class ended by 5, got to my train, again walking as fast

as I could. Got home by 6:30pm. Ate, dinner. No energy for anything else.

Went to bed and did it

all the next day for 5 days straight.

Today was the worst. We got off the train and went to the stairs as usual. I

am normally last, I got use to that. There was another guy walking with me, I

did not know him. We got to the stairs the same time. I told him to go first

and he said no its OK, I have a bad ankle, so I went in front of him. By the

time I got to the bottom, he was right behind me, so I held the door for him.

We both walked out of different doors of the train station and by the time we

walked to the first stop light he was in front of me. arggggggggggg, the guy

with the bad ankle remember. Again, I felt like I got punched in the head. Oh

well, just new thing to get use to I guess.

One last thing, my left foot has felt like someone has been squeezing all my

toes together. All week, morning, noon, and night.

Thanks for listening, I feel better already. I told my wife, about it. I know

she understands, but it not the same as telling you guys. Thanks again for your

ear.

Matt

(Ontario, Canada)

[Guest guest]

Thanks , you will read my last post so I won't say too much about the

Monday thing. Although I like the sleep apnea idea. My sister in law has one,

I should talk to her and the Dr. Thanks.

I was laughing at reading your reply. Never thought I actually had 2 bad of

everything, but you are right LOL. Thanks again for you post, it's nice to know

I am not alone. Just put the kids to bed, time to go study for my test. Making

that my priority for this weekend. I just can't stay awake readin this

material. Not like a book, it's kinda dry. Maybe I should have a nap first.

Thanks

Matt

[Guest guest]

OK, I'm going to take your side. ly, I never know how I'm going to feel

in the morning until I wake up and get moving, doesn't matter how much sleep

I got. There are good days and bad days and some long strings of bad days.

Interesting, my work is just the same as yours. I find myself wondering just

how

much longer I'm going to be able to keep it up. It certainly is not physically

taxing, but takes it's toll nonetheless. I will be in a workshop all next week

and

will have to walk from the hotel to the office and I'm sweating if I'm going to

be

up for it.

I feel your pain and I'm glad to be here to share.

P.

[Guest guest]

Dear Matt,

I respect your family choices of your spouse and your work schedule

to cover the kids. But..... again be carefull of choices you make

and the rationalizations you use so conviently(children,

church,career, or pride).

Let me share a moment 4 years ago-on a weeknight, I needed to go to

the grocery store after work and I could not walk another step and I

preped my 14 yr old daughter to go into store ....Well things went

badly and the trip ended with her in tears(me too)and her

questioning everything about her security and my ability to take

care of our family.

Or the night when I had made 3 trips in and out of my building = my legs were so

fatigued I couldn't walk out of my office. I called my neurologist in

tears(something also had to be wrong with me) It wasn't good. I was close to

disability. I used every rationalization in the book to feel good about how I

got as sick as I was.

The best rationalization was " movement hurt and caused pain " , so why move - my

pain was decreasing because I was working so hard (sitting at my job all day)-so

maybe I was getting healthy? And who had time for exercise anyway..it was just

time away from my kids who needed me way more(as a result of the recent divorce)

and after all I watched my CMT side of the family hit 40 years old - slow down-

get heavy- sit in the chair and complain about their feet hurting. Die from

heart attack 50 yrs old. Bless their hearts... they didn't know any better nor

did they even know what CMT was.

In addition, you give me way too much credit for being healthy! I

view those words " Exercise and Rest is not a choice for CMT'ers " as

more like the words a alcoholic uses everyday to stay on the wagon.

This weekend is my first real rest in 3 weeks = these are tough

times and yes I too work for a major banking firm -and keeping your

job should be a piority-and that means working hard during the week.

But I did make progress while I traveled these last few weeks - I

did my exercises in a hotel pool, I walked 18 holes of golf which

put me to bed that evening in pain, but I rested the next day with

computer and paper work. I didn't drink alcohol and I didn't over

eat. Not too mention I didn't lift or carry suite cases as I

planned not to rush thru the airport. I didn't forget PT.

I have a friend who ask me everyday - did I get in the swim spa and

for me to exercise! I hope to plan my dinners for the next week and

grocery shop on Sunday and have my kids ready to start their week

The kid thing doesn't go away - it does get better from the stand

point that they don't get in your bed at night but the other problem

is did they come home and where are they.

So stay actiive and strong and free from rationalizations!

Kim

[Guest guest]

Hi Matt,

Yes, after I sent my email, I saw your post describing all the things you have

going on with your family.  I didn't realize you had young children.  Oh my

goodness, a full-time job and 3 small children!!!  That would make ANYONE

tired.  Wow!!!  A three year old.  I'm tired just writing those words!!!  

On a personal note, I'd like to say that one of the things that continues to

cause me emotional pain is when I'm faced with a lack of understanding by

a close friend or family member.  When someone sets expectations and judges

me based on their own experiences and abilities, it's very hurtful.  It's so

nice to be understood, which is why I have found great comfort in sites such as

this one, which provide a sanctuary of empathy and compassion.  So, when I read

the posts from others, criticizing and judging you based on their own abilities,

it upset me.  It's hard enough when others don't understand us, but when our

fellow CMTers add additional stress to the situation, it's very unfortunate. 

I'm sorry that happened.

You have my support, Matt.  You are doing amazingly well given all that you are

managing with your health, work, and family.  Keep up the great work!!!  

[Guest guest]

Kim,

Sorry to be insensitive, too, but I've heard this crap all my life. Everyone has

different manifestations of their disability, which are completely separate from

lifestyle/accommodations.

Some people with disabilities seem needy in the sense that their self-worth is

determined by their 'work' performance. Life does not begin/end with the daily

slave-grind. Expecting a person to sleep/rest allllll weekend, just to be ready

for the rat-race, is just ridiculous.

Look, I know people who are paragons of physical health and strength, and they

do not work 12 hours a day, 7 days per week. I think you may be engaging in a

bit of self-deception, and wishful thinking, as a person with a disability.

Hyperbole in overdrive. Even US Dept. of Labor studies confirm that folks don't

'work' a full 8 hours; it's more like 3-4.

Surprise! Those 12 hour days of yours are probably peppered with plenty of rest

periods. And with all the working you do, how in the world do you have time to

do anything else?!! My point exactly.

And, don't we all wish AFOs, KAFOs, walkers, wheelchairs, scooters, etc., would

solve all our problems. However, they're not like superhero suits - when we put

them on, they don't give us 'magical' strength.

Some of us are not overweight, take care of children, manage our own homes, lead

a healthy lifestyle, and STILL don't have the energy levels of others.

As a disabled person, you need to be more sensitive to DIFFERENCES.

Augold

>

> I don't mean to sound in-sensitive but...... a few things:

>

> 1. If you wake up on a Monday am tired--- you are not taking care

> of yourself and that makes it your fault! It is important to work

> and with a 9-6 job Monday - Friday as a piority you must sleep and

> rest all weekend if need be.

>

> 2. If you can be helped by AFOs you need to get them - A

> dysfunctional gait(even a gait that looks normal or off a little?)

> can drain energy faster than we can believe. (someday I will forward

> a reshearh paper that measured energy use in gait dysfunction)

>

> 3. Are you over weight?

>

> 4. Stressed?

>

> 5. Healthy life style and some form of exercise and life control is

> NOT AN OPTION FOR CMT'ERS! NO SHORT CUTS AND NO EXCUSES!

>

> Sorry - you hit a sore point with me - I attend Pt 1-3x a week,

> stretch, attend numerous other health appt, work a career that is or

> can be stressful, work at it 6- 12hrs per day, can work 7 days a

> week, single mom of two teenagers, perfectionish, etc... I feel

> blessed when I am able to use my wonderful health insurance and

> spend approx 10% of my income to get healthy, stay healthy or figure

> out what I need to do next in order to manage a chronic health

> issue.

>

> Do I need to go on? No..... but no matter anyone's specific

> challenges no should wake up on a Monday morning exhausted!!!

> As a matter of fact.... I was honored to be on a cover of local

> newspaper magizine.... You got it .... I did the pictures Monday am

> bright and early. Good Luck..... at staying Rested......

>

> Kim

>

[Guest guest]

Matt -

There is no such thing as " normal fatigue " for folks with CMT.

is tired from morning to night, whether he is going to school,

doing homework on the laptop, playing games, shopping,whatver. Some

days are better than others. Changes in the weather affect him

greatly. Humidity, cold....all have affect on his stamina.

Now, let's add raising 3 children to the mix, having a spouse and a

full time job. You are entitled to having many days when you say you

hate having CMT!!! I applaud those who say they pull themselves up

by their bootstraps every day, eat well, exercise, get plenty of

rest, ya da ya da ya da. Good for them. We'll admire them won't we?

Everyone is affected differently by CMT and I just despair of how

that is so frequently overlooked when people post on this groups

site. Sometimes, I think our own members are more cruel than folks

who don't know what CMT even is.

I am 51 years old with two boys, a 15 year old (CMTer) and an 11 year

old who is suffering from depression, ADHD, OCD just to name a few.

My husband has diabetes, I have an artificial hip, suffer from Deep

Vein Thrombosis and have arthritis in my spine and my ankles and my

hands and knees. I also have 2 herniated discs. I am overweight (due

to steroids)and hypertensive. I work a full time job as does my

spouse. You and I live parallel lives even though I do not have CMT.

Due to my veinous insufficiency I am tired all the time.

We are parents first, and patients last. That was the choice we

made. So any time you want to vent...do so. It helps. I've

actually never shared this much here, because I didn't think it was

appropriate since I don't have CMT...but the stress that my sons CMT

adds to our family and to my health needs a scream out once in a

while too and we shouldn't be afraid of doing it in this forum.

SO = hang there Mr. Mark. Don't compare yourself to others...bad

ankles or not...you are who you are - a dedicated dad, devoted

husband and a CMTer...be proud of your accomplishments and try not to

think competitively against more able bodied folks.

[Guest guest]

Well said and I couldn't agree more.  CMT is often called the " hidden disease "

because it looks to many as us just being lazy.  For many walking to the end of

the driveway and back can be equivalent to running a mile for those not affected

by a disease such as ours. 

Luckily my job as busy as it is works well for me because I am always sitting

and standing and walking all day long so I am getting exercise, stretching and

resting a lot in between.  After a 12 hour day it's hard to just jump into an

exercise regime.  If I do to much I will most certainly do more harm then good. 

For me I found aquatic therapy twice a week beneficial as well as mild

stretching in the morning.

Andy

________________________________

From: augold123 <augold123@...>

Sent: Sunday, November 16, 2008 4:14:08 PM

Subject: Re: I hate this some days

Kim,

Sorry to be insensitive, too, but I've heard this crap all my life. Everyone has

different manifestations of their disability, which are completely separate from

lifestyle/accommoda tions.

Some people with disabilities seem needy in the sense that their self-worth is

determined by their 'work' performance. Life does not begin/end with the daily

slave-grind. Expecting a person to sleep/rest allllll weekend, just to be ready

for the rat-race, is just ridiculous.

Look, I know people who are paragons of physical health and strength, and they

do not work 12 hours a day, 7 days per week. I think you may be engaging in a

bit of self-deception, and wishful thinking, as a person with a disability.

Hyperbole in overdrive. Even US Dept. of Labor studies confirm that folks don't

'work' a full 8 hours; it's more like 3-4.

Surprise! Those 12 hour days of yours are probably peppered with plenty of rest

periods. And with all the working you do, how in the world do you have time to

do anything else?!! My point exactly.

And, don't we all wish AFOs, KAFOs, walkers, wheelchairs, scooters, etc., would

solve all our problems. However, they're not like superhero suits - when we put

them on, they don't give us 'magical' strength.

Some of us are not overweight, take care of children, manage our own homes, lead

a healthy lifestyle, and STILL don't have the energy levels of others.

As a disabled person, you need to be more sensitive to DIFFERENCES.

Augold

>

> I don't mean to sound in-sensitive but...... a few things:

>

> 1. If you wake up on a Monday am tired--- you are not taking care

> of yourself and that makes it your fault! It is important to work

> and with a 9-6 job Monday - Friday as a piority you must sleep and

> rest all weekend if need be.

>

> 2. If you can be helped by AFOs you need to get them - A

> dysfunctional gait(even a gait that looks normal or off a little?)

> can drain energy faster than we can believe. (someday I will forward

> a reshearh paper that measured energy use in gait dysfunction)

>

> 3. Are you over weight?

>

> 4. Stressed?

>

> 5. Healthy life style and some form of exercise and life control is

> NOT AN OPTION FOR CMT'ERS! NO SHORT CUTS AND NO EXCUSES!

>

> Sorry - you hit a sore point with me - I attend Pt 1-3x a week,

> stretch, attend numerous other health appt, work a career that is or

> can be stressful, work at it 6- 12hrs per day, can work 7 days a

> week, single mom of two teenagers, perfectionish, etc... I feel

> blessed when I am able to use my wonderful health insurance and

> spend approx 10% of my income to get healthy, stay healthy or figure

> out what I need to do next in order to manage a chronic health

> issue.

>

> Do I need to go on? No..... but no matter anyone's specific

> challenges no should wake up on a Monday morning exhausted!!!

> As a matter of fact.... I was honored to be on a cover of local

> newspaper magizine.... You got it .... I did the pictures Monday am

> bright and early. Good Luck..... at staying Rested......

>

> Kim

>

[Guest guest]

,

Very well said.

Thank you

Lainie

[Guest guest]

All, thanks for all your support and comments about being tired most days. I

did not think it would start up the conversations but it did and I am glad about

that. I have taken both the positive and the negative away with me and will

build on that for my own personal gain. Hopefully that it. Is just proves the

power of this forum and sticking together whether we like it or not. We are all

stuck with what we have and this forum makes it better, at least easier to deal

with.

Take care all, and get some rest.

(Ontario, Canada)