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-   -   Lost !!! (https://www.neurotalk.org/new-member-introductions/198398-lost.html)

Greg W 12-10-2013 01:50 AM

Lost !!!
 
I have been diagnosed with Stiff Person Syndrome...been having problems for years.
I am active but slow and get tired.
The dominant problem I have had is that I am loosing social contacts as I cannot keep pace physically...I have an active lot of friends.
What occurs is that I am beginning to be left out...out of sight out of mind .
The trouble is I am still capable but not to others standards.
How do I build a new life?
Thanks

Rrae 12-11-2013 12:03 PM

Hi Greg
 
Welcome to NT! :hug:

Oh how I know what you are going through. I call it 'the silent pain' and yes, it does get lonely. The people around us don't really understand and they tend to distance themselves. I don't think that it's as tho they don't 'care'....but it can seem like that to us. Also, it might seem like they don't 'believe' us and we get those 'looks'.

What you've been going through is real and you NEED support. This forum has been a life-saver to me. People here truly do care and there is no judgment. I know it's not as good as having a true buddy to hang out with.
Maybe some of your friends will still enjoy hanging out with you, let's say you bring a dvd over to their house to watch a movie or something like that where there is no physical demand required.
You are still 'you' and you have an important place in this world.

Make yourself right at home here and post wherever you feel inclined. There's a friend around every corner. :)

I would suggest checking out the MS forum as a starting place, even tho you don't have MS. That forum is very active and they can still find ways to see things on the positive, despite the fact that they've had to slow down in life because of their symptoms.

In no time you'll get to know some people here and once you realize that you are not alone, it does somehow make things a little better.

It's great to have you!

Caring,
Rae


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