Path: utzoo!utgpu!news-server.csri.toronto.edu!cs.utexas.edu!yale!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt
From: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt)
Newsgroups: misc.handicap
Subject: MS
Message-ID: <14354@bunker.UUCP>
Date: 21 Sep 90 15:10:25 GMT
Sender: wtm@bunker.UUCP
Reply-To: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org
Distribution: misc
Organization: FidoNet node 1:105/41.15 - Busker's Boneyard, Portland OR
Lines: 69
Approved: wtm@bunker.UUCP

Index Number: 10569

>others.  I had thought I was becoming a recluse because I too will only let
>people see me when I feel I have the energy. A psychiatrist was suggested
>for me because of it. 

I am just finishing up some counselling.  It has been very
helpful.  The counselor I've been seeing has some connection with
the MS Clinic in the local University hospital so she sees people
with MS and is knowledgeable about many aspects of the disease.
She's helped me to see and accept some of the realities of my
situation and to understand that I have options and though I am
dependent in a lot of ways, I am still in control of my life.  I am
sure there are other ways to accomplish the same sorts of things
other than counseling.

>I find my biggest problem is helping others understand
>what has and is happening to me.  My Rabbi is a sympathic guy (but empathy
>might be better). I tell him I am tired and he says 
>"Thats OK I will just stop bye and we can talk". Or another friend 
>doesn't understand when I feel I can't stop bye. 

I've spent a lot of time waiting and hoping that someone will tell
me all the answers so that I will be able to deal with other
people.  I think the sad reality is that there is no bundle of
answers.  I think that to a significant extent we each have to be
both inventor and teacher.  Did you read Gene Zeak's message to me
where he says that he explains things to people once?  It seems
like there is some risk in that but there is also risk in trying to
use energy that you just don't have.  I guess what I am trying to
say is that we each need to try to find and stick to our own
limits.

>What I am trying to say is
>I have not the energy for conversation or even to listen much of the time
>and sometimes I am so angry inside at people for making demands on my time.
>And yes it turns to depression becasue I one hand I want to scream leave me
>alone and on the other I don't want them to. I just want them to understand
>that I am tired.

The fatigue is just so incredible.  It really is amazing to be too
tired for conversation or listening.  But that's how it really is.
It's funny when I try to describe things I experience I can't find
the words to do it, the normal words don't describe the
sensations.  I try to tell my husband that fatigued and sleepy are
two entirely different things to me.  One does not imply the
other.  Resting helps the fatigue but sleeping when I am not sleepy
only sets me up for a night of insomnia.

I am trying to sort out what is important to me so that that is how
I can spend my limited amount of energy.  Perhaps you can
"schedule" your conversation times for when you have more energy,
maybe tell someone who wants to talk that you need to lie down for
an hour first.

Dare I say it?  I am afraid I'll jinx myself if I say it out loud
but I'll risk it anyhow.  The last few days I've been noticing that
I am not falling into bed totally spent every night.  I am sleepy
but my body is not dead weight like it used to be.  Also, the
fingers on my left hand are working better.  I am typing this two
handed for a change!  Could it be slowing way down is paying off?

Take it easy....but take it!

Adrienne

--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!41.15!Adrienne.Barhydt
Internet: Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org