Unproductive neuro visit

[Carolina]

Oh Paisley!

I know the push-crash style of life.

So I don't push.

I spend a LOT of time sitting in a chair as a result, or on the bed, which I prefer cause it's easier on my knees.

But it REALLY bothers people to find me lying on my bed all day....so I sit in a recliner.   Books and my computer are my salvation, and the phone to some extent.

My push/crash is mostly because of the extreme difficulty I have in walking/moving, the fatigue that results, along with the regular fatigue of Sjogren's (etc) and the temperature dysregulation which causes horrible sweating the moment I move around.

Just going to the grocery store and coming home requires an hour of recovery.

No one 'gets it' at all.  that's OK most of the time.

My volunteer group was decorating for a fund raiser that we were helping with, and I wanted to help.  But I realized that I couldn't hang decorations, stand on a chair, move tables and chairs around, lug boxes of stuff....what would I do?  Nothing.  So I didn't volunteer.

That was sort of sad for me.  Cause that used to be my favorite activity........team work to get something fun done, not heavy labor mind you, but fun stuff.

So for that group I was Secretary and now I'm Parliamentarian, and I am the one who sends out the Sunshine Cards (ecards and snail mail) and I do the organizing for a couple of book groups. 

For political things I can make phone calls.  So there are ways to be useful.

As for people staring, Cassi,  I try to remember that at base people are animals.  All animals watch other animals very carefully to see if that animal is like them,  injured, sick, wounded and might attack, etc.   We scan our surroundings carefully.  Should I run, should I stay, should I fight?

My sister was in a wheel chair and people stared.  They wanted to figure out what's wrong, will it get better, can it happen to ME?

She said people were really upset when she said she wasn't going to get well and get out of the chair.  People are people.

They operate out of fear and doubt a great deal of the time.  Is that person shaking?  Are they drunk?  Are they having a fit?  Are they OK?  Am I ok?  At the basis of it all is, AM I OK?

People are really just thinking about themselves.   You just happen to be there.

My joy in life is to try to transcend thinking about myself long enough to be kind and useful to others.  I don't do a very good job, but the process helps me have a more peaceful life, I do believe.

Again I mention the book:  How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard and Sylvia Boorstein.

It is really a book about how to live.   Heaven only knows we have to live with a lot of 'stuff' so we might as well learn to enjoy it.

Hugs

Elaine

[paisley62]

The lumbar puncture, cerebro-spinal fluid test for lyme is accurate, right? 

[Cassi307]

Paisley
It is just awful where life takes us sometimes. The challenges we face are tiring just to think of them. Like you, I am now going to have to find new coping mechanisms and  living the best way I can.

We learn from each other. I am thankful for the support and understanding and suggestions.