Fighting Fatigue of MS - You will live longer than you might expect! see Text 3 (new) - Personal - http://maxpages.com/happymspage/Redisign_the_way_you

UPDATE;
May 22,2004 I'm told as so are you that fatigue comes with this disease.
No matter what you do,the fatigue is still there.The hardware that we are prescribed is mainly designed to make mobility easier and less stressing.

UPDATE Oct.18,2003 The SPMS affected body having sudden but tempory break down.
Every once in a while I have a grand overdoing for several weeks in a row.
Then maybe for several weeks in a row . My body reaches a fatigue level that
is just the pits.I find I have to regroup my strengths by staying in my
trusty Quickie all day for a week. My consumption of zanoflex also has to
increase as I'm very spastic for weeks.Then finally my body rallys and slowly
I get better to a point for a while.

Eventually your body will become addicted to anti spastic meds.
I get a sort of chill feeling when I'm over due for a zanoflex.
Some people get so stiff from MS that it becomes very difficult to transfer from bed to wheelchair

Ever since I was first diagnosed fatigue has controled me in what
I'm able to accomplish.
In the very beginning I was told by my very wise neuro that it
would be my worse enemy in MS.The grinding fatigue is what makes
it almost impossible to work a full day.
It is the grinding fatigue which will force you to just stop what
you are doing and take a nap right then.It will blur your eye sight.
Make your legs or arms almost stop working.
It will just make your brain just say you must get rest,NOW!!!
The need for bed rest,where all is quiet,you get a chance to sleep,
can't be
overemphized. When I was first dx in 1980 My then wise doctor told me
daily rest
was one thing which no medicatons can match."Unless you get rest,you
will just feel terrible the rest of the day"It may take two naps a
day somedays.
He was right It does take two a day some days.

In the 24 years of Ms now for me. And about 8 years in the SPMS type
fatigue forces may things to change.
I stopped trying to drive with my legs years ago and got a set of
hand controls.I was suggested 13 years ago to get AFOs .
Now I can't exist with out them.I chose a pair off forearm crutches
over a cane because my fatigue factor was less.I don't attempt to walk more
than 200 -300 feet with out having my scooter.I even now get tired on
the scooter.I really need a power wheelchair with a joy stick and a
very comfortable seat to relax my body.
. There is one great expendure of energy per day and that is my 1/4 mile swim.I come
home from it absolutely ready for a nap.PDQ. How do you convince your
Insurance company you need a Jazzy power chair?

FATIGUE OF BRAIN AND MUSCLES GANG UP AGAINST YOU
The brain will because of chemical imbalances existing because of
your MS will tire out,then muscles which have to overwork just to get
your body about will add to physical and mental fatigue.
This isn't an easy problem to handle.The more fatigued I get the more
mistakes I make.What do you do about it?

There are medications,I take one of the better known Amantodine,
it helps because I tried giving it up and found what it was really
doing for me.It's a safe medication.Some of the rest which will keep
you on edge aren't good for long term usage.
Both my doctor and myself have a unified idea about fatigue.Much of it
is mine but he too has made some contributions.
1. Learn what you really can safely do in a day.
Find out when you best will get the greatest advantage with your naps.
2. Keep yourself as cool as possible in hot weather,heat of the
body core temperature will greatly add to your fatigue.It seems the nerve
impulses slow down even more when we get over heated.
3.Don't struggle without an assistive device.Even Clawson Rocker shoes
will save you energy in the same walking distance.
A cane is ok for starters but I believe in the use of physics forces
will asist you better if you use crutches. It took me a while to notice
I didn't get as tired as quickly as with the crutches over the use of a cane.
You don't get much leverage from a cane they are more for balance.
My former doctor when I lived in Akron introduced me to the crutches
as a better alternative.
You can lean your hold body into the forearm crutches and you weight
will assist the legs in motion.Try it and you will see the distance
increase you can do.
I tried a wheeled walker in fact two of them,there wasn't the same
physics advantage.

The AFOs will save a lot of energy:
I have gone into this advantage about the AFOs (lower leg braces)
in a separate article on this same web site.
But after talking to people with other muscular and nerve diseases,
I have concluded that many others besides MSer benifit from AFOs
Several polio friends say while they aren't the same clunky braces
that had to wear when they were kids ,this AFOs will save a lot of energy
which would other wise be wasted in keeping your balance.
Personally I couldn't live without them unless I start staying in either
a wheelchair or scooter all the time. Save your strength and life will
be a bigger joy.
The one thing that will make you hate the MS disease is to be overly
tired all the time.Take what ever measures you must to stay fresh and
enjoy your life.
I just plain tell my doctor I need such and such and he obliges me with
a prescription.He knows how bad the disese really is.

YOU and YOUR Wheelchair:
You say you don't need one? If you get excessively tired then you do.
This was another
piece of advice my first doctor said.

I went in to see him about 6 months after I started using crutches.
I had used the freebee wheelchairs in malls and stores,but they really
never fit you.Besides they don't have a cushion.
Anyway I asked if I should have a wheelchair of my own,since it was
progressive.
He grabbed his prescription pad and said Yes.He directed me to look at
what was available at the three stores in town who handled wheelchairs
and said here is a prescription to get it.
There is no doubt in my mind you will enjoy life in big stores,malls,
and other places where you must be moved big distances.I'm now on my third manual wheelchair and my fouth scooter.They are extensions of your mind,and feet.
Let go and live with one .Don't worry about will it make me weaker.
You are weak if you have MS.You need all the help you can get.

Now I have the best,a super light weight Quickie.They really are
superior and save me an imense amount of energy as they are also very
portable for travel.

Eileen Lukeman and Richard Tanner

FL.

Eileen(Lobosgirl) and Richard (RET1000) both at aol.com

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Page Updated Tue Jun 10, 2008 7:25pm EDT