Re: Ways to describe our hidden disability

[Guest guest]

Hi Mike-

This is how I explained my CMT to others including doctors. For the lack of

strength in my hands when I was in my late 20's thru my late 40's. I said I felt

as if my hands were faced together in a lunch size brown paper bag over them and

I couldn't break the bag apart. It's obvious my hands want to try to do whatever

but they're just not strong enough.And now at 54 1/2 they're definitely

weakening.

For my CMT body I simply say that a CMTER is starting out on half a battery to

begin with so of course we're going to tire out

and wear out faster.

Listen Mike, you need to listen to your body. Do things in moderation.

Barb

[Guest guest]

Mike,

Once it was described to me like this: our CMT muscles have to work

twice as hard to do 1/2 the work as a non-affected CMT person. This

is why we get fatigue.

It took me years to fully grasp this, and once I got to know my body

clock and the times I am more mentally alert and physically alert, I

purposely fill those times with required tasks, work, the gym, etc.

As for your 'moderate exercise': I don't tell strangers anything. As

for family, friends, with my exercise, they are amazed that I joined

a gym and frequent it (they don't!) They are, however, very

supportive of my time spent in aquatics, pilates and on my bike, the

main complaint is " when do you have time for me? " (yes, I've

invited them to the gym, pool, on a ride, the answer so far is some

excuse)

Mike, I have had to learn to step out from the crowd. No one needs

to know anything about me; ok, family, so I keep it simple.

In my earlier years (like in my 30's) I had an insane urge to prove

I was as good as non-CMT affected persons (this started in college

where, after writing my papers, I'd write ones for my roomates -- a

bit of a financial incentive for me too)

In my early career, I was a quick study at all my jobs, within 3 - 6

months I would take a literal mess, clean it up and have it working

tip top. Or I would have taken nothing more than a job description

on paper and made a 'real job' from that. The more I did, the

greater my own expectations of myself - but sometimes I suffered

health wise - like the Rheumatic Fever, a car accident, an

infection, all from not taking care of myself in the first place;

putting " Gretchen First " later became my motto. My family had always

been supportive of my need for rest, or better yet, for quiet.

Perhaps that is a throwback to being a CMT child. I just had to

say " I'm tired " and excuse myself to sleep, rest, or read to get the

wind back in my sails. My family knew how important sleep was to me,

and my good friends know that now too, although with new friends, I

do have to set good boundaries.

These days I don't spend a minute on what others think. And unless I

am attempting to educate inquiring strangers about CMT, my life is

not open to them.

Just say " I'm tired and I need to rest " .

About the work, well, try it, do it. You'll know if you can do it

and do it well, without fatigue, you'll also know if it is too much

for you. If our muscles are working twice as hard to do 1/2 the

work, it's not laziness, it's fatigue.

I prioritize what's important. Whether I have 3 hearings back to

back in an afternoon, or whether its getting the laundry done,

groceries bought, a party planned, or working with the landscaper

while the rugs are being cleaned, each day I prioritize what must

get done...I allow myself flexibility, the right to cancel plans,

the right to eat well and exercise and time for R and R if needed.

Each evening, I make a list for the following day then in the

morning, first thing, I make revisions if necessary.

However, If I am already fatigued, I can't do sh** until I get the

fatigue issue under control, and I do speak up about this if needed.

Caring for ourselves is extremely important, we need to be vigilant

about our health, sleep, rest, nutrition, exercise, fun time, work.

If you feel too exhausted for too long after making changes in self-

care, perhaps check-in with your doc for a thyroid test and/or

others.

I've never avoided work, but have just avoided alot of useless

fatigue by making notes, discipline, and backing up a project

deadline into my own timetable, where I can pace it all out.

Like I said this has been learned from my entire life with CMT. We

may all have CMT, but our needs and wants are sometimes different.

Hope this helps.

~ Gretchen

[Guest guest]

I describe it as walking on stilts that are 100 lbs each. My hands are like

sticking them in the freezer for an hour wrapped in tight rubber bands. It's a

hard thing to describe but for those who live with it day by day certainly

understand.

Andy

[Guest guest]

Mike,

I also have the problem of how to explain it to others. I tell them the facts.

If they don't like they can go away. It is hard to not feel " lazy " or a " bum "

because you can't do as much as others can. I am a wife and mother and there are

days when I don't " feel " like I can do the work being asked of me. But I try to

be good to myself and understand that I have limits. The people who expect you

to do your share of the work, need to do theirs and then ask you what you can

contribute.

Good Luck

Nina

[Guest guest]

Mike,

I once had similar problems and concerns as you. Kinda bruising

to my male ego. Now, with my bilateral braces, cane, visible atrophy,

and hand tremors, others have fewer expectations of me.

Earlier, when I had unusual fatigue and way before I admitted I had a

problem - definitely before the diagnosis of CMT (at age 49) -, I'd use the

running term 'I've hit the wall' ... not everyone bought it

though.

I had the help of seeing some acquaintennaces erratically, ie., once a

year or so. They compared their memories of what I once did with what

I was now capable of, and flat out asked me if I had a problem. Of

course, I denied it but that's another story.

Dan

[Guest guest]

Hi Mike!

A lot of what you said reminds me of myself. I have been battling fatigue for a

long time now and my doctors don't seem to get what I am saying to them. It is

very frustrating. I also use the word crash. Sometimes I crash for a few days

at a time. I want nothing more than to have the energy and stamina that I used

to. My husband used to call me the energizer bunny!! Now I am more like a

lump!!

Yes it is hard when people look at you and assume that you are fine just because

you may not have the outward signs of an illness. I also feel as though people

view me as being lazy, but when you just don't have it in you, what can you do!

I don't think we ever

know what will cause a crash, we just try and then deal with the

consequences. Sometimes I get scared to take on something because I know what

will be in store for me. I can associate with you and feel for you.

Teri

[Guest guest]

I use the gas tank image, too, that I have about a quarter tank on my

best days. There is also the marathon one- that daily activity is

like a regular person running a marathon by the end of the day. I

sometimes ask how they feel after going to the fair or disneyland or

some big event, then say that's how I feel at the end of almost every

day.

It's hard because I teach young children so I get into crisis mode

where adrenalin carries me through and then the crash is bad. since

they don't see the crash - I'm at home- people assume everything is

fine. So I have to be assertive.

I find I have to listen to myself on a physical level because some

days I can do more than other days. Some days I have energy and some

days I don't. Like Gretchen, I do a lot of prioritizing. I also try

to define what I can do realistically. Awhile ago I decided to

switch my perspective from measuring how much I accomplish in a day

(I'm an overacheiver) to how I'm feeling at the end of the day. It's

a tough one.

Every once in awhile someone will hurt their ankle or foot or pull a

muscle and they'll come up to me saying " I don't know how you do this

every day. " And some days I'm not sure either. But I feel that

communicating is important so I do share my CMT with families in my

class. We all have our challenges. But it's tough to stand aside

and watch others move boxes or clean when I feel like I should help.

I just try to let go of what other people think. I approach the

world with the attitude that everyone is doing their best and

hopefully they know the same of me. If not, well, I can't control

them. But if I overextend myself now they'll won't notice and I'll

deal with the fall out, maybe not even the crash, but in increased

stress and symptoms down the road. I have to put myself first. Not

always easy . Good luck! Lenka

PS I write out a letter that I handed out at work and at the

beginning of the year to families. If you are around a group often

like work or church or family, this can be a way to communicate

without the many conversations.

[Guest guest]

Hello.

I don't have a hidden disability and people still think I'm lazy. Had company

over Easter and I'm still tired and I didn't do much of anything! LOL. Feel like

my house and everything I do should be better then everyone else(cleaner)OR

people will think I'm not capable. If things are not up to par...I worry that

they will say I can't take care of myself!

But.. oh my yes...I am so tired most of the time....and it is very hard for my

family to understand.

Going through a divorce I didn't have much money to live on, my daughter in law

and my son wanted to take over my finances. I was having a very hard time but

the answer was simple...live frugal!! a remark was made that I will never forget

and sends fear into me to this day...IF YOU CANT TAKE CARE OF YOURSELF WE WILL

PUT YOU SOMEPLACE!! How sad that people can install fear into another person

.....and family at that!!I still tremble and tear up thinking about that time in

my life.

Geri

[Guest guest]

Hello, friends

I don't explain my situations to other people unless I am in a good

mood to say something about CMT. Since I have been always very busy and other

people are also quite busy, I see no reasons that myself have to spend my time

to explain and I also see no reasons that other people would regard my CMT

situations as the most important thing in their life. Different people have

different important

things to take care of in their own life.

The world is full of perceptions and judgements. People don't see

things as the way they are, but people tend to see things as they way they like

to see. Subconscioulsy, people have some presumptions about how things should be

and how other people should be, based on their presumptions, they perceive other

people based on whether other people match their own presumptions or not. If

other people match their own presumptions, they say it is good. If other people

don't match their presumptions, they think it is bad. This is a system full of

false consciousness and manipulation.

So, I just be myself without trying to dance with other people's

presumptions and perceptions.

Please take care

Caroline

[Guest guest]

This is how it is with me also. I'm in a wheelchair full time and my family

thinks I'm lazy because I took the disibility retirement option at work instead

of continuing on.

Ron

[Guest guest]

I tell people to think of the body as an old house's electrical system, with the

brain as the fuse panel. Over time the insulation (skin) of the old wiring

depletes and small short circuits begin to happen, not enough to shut the lights

off, but enough to begin to dim the lights, slowly, but continuously worse over

time, starting in the room farthest from the control panel.

Then I switch to elementary human anatomy. The muscles in the body need

electricity (thus the nervous system) to stay strong. Because of the small short

circuits that happen throughout my body (more and more with time) the muscles in

my extremities (starting with hands and feet and working towards the brain)

don't get the necessary electrical current and begin to atrophy (wither).

Exercise and diet can maintain the strength that I have now, but inevitably,

there really is nothing that I can do about the lack of electrical current.

Eventually things will worsen. I am have a family that actually is dominated by

this gene and so understanding is not an issue. I also am blessed with friends

that have been around long enough to have seen the the way this works over time

and understand.

Something funny that I noticed though. I went through a fat phase (gained about

75 extra pounds). People then acted more like I was a lazy ass then than now,

1st because I was a fat pig (trust me, it wasn't pretty, I'm still trying to get

rid of my man boobs) and 2nd, because of the weight, it was harder to see the

muscle deterioration that occurs with CMT.

Eventually I HAD to lose the weight (still working on the man boobs) because it

was causing all sorts of trouble in my joints, especially my hips.

[Guest guest]

Mike,

Although I'm a woman, I'm 5'10 " and have been jokingly called 'muscles' for

years. About 4-5 years ago, I built the front

deck, one of our storage buildings and a play fort where I'm living

at now. Last fall, I started a second storage building. I quickly

discovered that this old gray mare ain't what she used to be.

Doing things takes me 3 times as long as what it used to. I get

tired. If I continue to work past the point of getting tired, I

fall, I step in paint, I drop things, spill things, and I hurt for

days. I've had to learn to listen to my body. To stop before I get

too tired. Things don't always get done as quickly as I like. I

have to break it down into smaller pieces. I plug away a little at a time, but

I eventually get it done.

Does this mean that I'm lazy? Nope, just smart. If I work past

tired, I'm down for days - days that I can't do a thing. I wind up

further behind than I would have been had I stopped at tired.

Is this easy? Absolutely not!! It's frustrating as all get out to

be so slow about getting things done.

I don't usually explain myself to others. I do what I can and then

stop. I guess others may think I'm lazy, but I know differently and

that's what matters.

Mike, have you thought about talking to a counseler about this?

Sometimes talking to someone objective can help you sort things out

in your mind.

Tonya

[Guest guest]

Tonya,

I have to tell myself when to stop, too. It is not easy but the job

will eventually get done! I am also a woman who likes to do things

around the house, especially gardening, and if I don't stop then the

price is too heavy for the next few days. No pain no gain DOES NOT

work with CMT.

Karon