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Re: Any suggestions for preventing fatigue?

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,

Drinking water on the outing will be good, same as for times of breaks. I'd also

suggest aboot 2 days before to rest and get a good night's sleep. Try to listen

to your body, and before you start to feel pain, stop. Period. Rest. Then go on.

Advil is OK but really try to 'feel that moment' * before the pain * .

I am wondering if you would be open to using a rental or borrowed scooter for

the day?

Gretchen

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Gretchen,

Thanks for the tips!

I hear what you are saying about a scooter, but I am not sure I am on board with

that as of yet. I have noticed that there are things my sister will no longer

do because she can't walk for long anymore, and I have wondered about talking

with her about using a scooter for those events. That has led to me

contemplating doing the same thing for myself at some time in the future. I

think I need to see how this event goes and then think seriously about my

options. I will know for sure that I need to " do something " if I start to think

that I " can't go anymore " because of my CMT.

Of course, when I had my ankle surgery in college my mom got a wheelchair for me

so we could go Christmas shopping at the mall. I could not believe how

oblivious people were to the chair and how frustrating it was to try to maneuver

through the crowds. I think I'll have to take an anger management class before

I ever get in a scooter! lol!

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Hi ,

I am so jealous that you are attending Equine Affaire. It is one of my favorite

events all year and I usually go the one in Mass, but can't because of work this

year. Here's what I typically do at Equine Affaire: I try to insperse the

shopping with the seminars and demonstrations and make sure that I take plenty

of breaks. I don't know about you, but I usually collect lots of stuff there as

well--when my bag gets too full of the free stuff, I go through it and dump the

stuff I don't really want, or I run it (or have someone) take it to the car

periodically so that I'm not lugging around a ton of stuff all day.

I know you'll have a blast there. Also, it must mean that we two horse loving

CMTers aren't too far away from each other. I live in southern NH.

Liz

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I find standing the most fatiguing activity, Second -- a very close second -- is

sitting in confined spaces where I can't move my legs. Here in Rome where I

can't/won't drive long bus rides as almost as tiring as walking. Unfortunately,

some of the shortest rides take the most time, especially when the President of

the United States or his wife show up. The only streets that front the US

Ambassador's residence are the very streets that 80% of my travels cross. For

your convention, sit as much as possible where you can stretch your legs. One

great joy I have is to take off my shoes, wiggle my toes, and walk around a bit

barefoot.

Now I am going to make a very controversial statement: Fatigue is mostly mental.

The problem with fatigue is how we let fatigue dictate how we live.

The last six months I lived through I wouldn't wish on anyone. In that six

months my right(my previously stronger) leg withered. I was forced to begin

using 2 crutches whenever I could. I fell 5 times since June and anyone who has

fallen knows that the fall is secondary to all the muscle pulls that show up the

next day.

My wife has polycystic kidney disease an in the course of these six months

started dialysis and had a kidney removed. We live with a 87 year old aunt, so

managing our lives moved from my wife to me.

About half way though, I noticed that the level of my fatigue didn't increase as

my exercise increased. When I awoke each day, I knew I had certain tasks to do

regardless how tired I felt. I did them all was extremely tired during the day.

What surprised me was after about 30 minutes of absolute rest I was able to go

on.

Absolute rest means lying down and totally relaxing. I learned to take short

naps while in the army, and while working in operating rooms on long cases. I

can " sleep " standing up if I need to.

It isn't real sleep, but 10 minutes of absolute relaxation works remarkably

well. I think I was using procedures similar to what Transcendental Meditation

teaches.

Sorry for the digressions, but what I discovered about myself that however

fatigued I was, I was able to complete my tasks -- much slower as the day wore

on, but I still completed them.

What became apparent was that fatigue wasn't the limiting factor in my life, but

stamina was. What I knew from my athletic background in the 55 years I didn't

know what CMT was, stamina is almost limitless if between exertions, a period of

absolute rest intervened.

With that paradigm, fatigue is a mental brake on what we want/need to do, and if

one's stamina is allowed to recover, fatigue is nothing.

I still wish that life was downhill and downwind in both directions, but is

something needs to be done, I will be able to do it.

I am not saying that I was able to use my weakened muscles in any exaggerated

way. What I have is what I have. What I am saying that within my envelop of

muscle strengths, I was always able to respond.

Please don't decide this is just another missive from that wacko across the

pond. I hope you look into how you respond to fatigue, and try something a bit

different.

Regards.

--Larry

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