don't believe what your body tells you

[Guest guest]

Before I even heard of MSA, I was quite aware (dancer's are very body

aware, like athletes), that what I felt (pain stiffness, numbness), did not

mean I was imobile, or hurt I referred to it as my nonsense-ations. I've

learned more and more to question what I feel and look to other means for

verifications (mirrors, cues from others, mood rings). At first when my

arm would go numb and stiff I would avoid using it assuming it was also

weak and incapable. When the Dr. told me I had lost muscle (wasting 2 " ) in

my arm, I was devasted. Went home and started re-training my arm working

through the pain and numbness, and although I am clumsy my arms are once

again symetrical. I cannot feel the ground with my feet either, but this

does not mean I can't walk. I cannot feel the temperature, but I can see

the mottled skin, or feel as though my skin is too tight when I overheat.

I look grey when I am cold red when I'm hot. I'm on manual override, but

it is a lot of work to now consciously do what others can do without any

attenion or effort, I think this is why I am so tired. The mantra remains,

use it or lose it. Hardest to accept was not that this was fatal, but that

my potential for quality of life would predictably fade, and coddling and

bedrest are an enemy. I am getting so tired of sleeping so upright, I

always though how tragic the elephant man wanting so badly to sleep like

other people could that it was worth dying. His affliction was obvious,

I'm sure no-one ever said " but he looks so good " . Perhaps the low blood

pressure and low body temp slow down all the obvious aging, those symptoms

might even be a survival mechanism to slow down the degeneration in the

brain. Since it feels good to think that those are two symptoms easy

enough to live with.

I'm thinking of having a plain casket with white primer, give everyone

coloured markers to do with as they see fit at a service, then varnish.

I'd like to be buried in pyjamas, nice and comfy, no makeup (my kids can

make sure I'm dead, but I don't want to be on display). And just to piss

off all the stuffy in-laws I want balloons as well as flowers. My sister

is livid everytime I mention what kind of funeral I want as though denying

it will stave it off (you'd think a nurse in neurology could wrap her head

around this a little more). So I'll have to do it on my own, I always

think once you have it all planned, it never works out. This is one plan

that could fall apart with my blessings. Everytime my apartment has been

decorated to my liking I end up having to move, worth a shot.

don't feel well the last couple of days, chest pains, rapid heartbeat, neck

and shoulder pain (as though they are scalded) and the leg spasms, yipes.

I suppose I will get to that point of wanting to sleep just like a normal

person, not just yet.

aletta mes, vancouver, bc canada

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Site: http://wwwaletta.0catch.com

[Guest guest]

Aletta,

Thanks for sharing with us! I too was a dancer but not professional

(reason for my email addy). You ARE more aware of your body. I too

LOVE the ocean but mine is not very close (10 hrs away and I haven't

been there in 3 years, I MUST go this coming summer!!! Oh how I'd

love to be able to paint, but not so, but I like calligraphy and

crafty things. For many Christmas gifts I made wine glass markers

which were loved by everyone. I also think they appreciated them more

than usual as the dystonia in my left hand has made EVERYTHING much

harder to do. I have not gotten a concrete diagnosis BUT I just feel

certain it is MSA. It meant a lot to me for you to be sharing

with 'me' and the group. Many thanks!

Hugs,

Valarie