Loss of self

[irbald]

My name is John.  I have a brain disorder called diffuse white matter disease that makes it difficult for me to remember, understand, and follow things.  I just spent 4 hours trying to tell my story only to discover as I tried to preview what I wrote that I had been kicked out 3 hours previously.

I had read of the 1 hour limit but I forgot it, a problem I have.

I am angry.

I may try again.  If I do, I will probably have to do it in chunks.

It would be useful for people who have cognitive problems who want to use these forums, if there are any, for there to be some sort of warning flasher to let us know that we are closing in on our limit.  Remembering this can be difficult.

This may not even be an appropriate place for people to talk about losing the non-physical parts of themselves that make them unique people.

[browneyedgirl]

Dear John ~ I am very sorry that you are dealing with this disease.

I hope that you do come back and write some more.

Take care of yourself.

[grainofsand]

Hi John~
How frustrating that must be for you to struggle with things we take for granted.
Here is a suggestion for you:

When you want to post, type it in WORD or what letter software you might have.  There is NO time limit for that as you will not be logged on to webhealing.  Then you can log on and cut and paste it in to your post...
This way you will not be using up your time.

I  hope this will work for you.  I look forward to reading about you.
Welcome to our board, let us know if you need any other help, just ask us.

[irbald]

Hello, Grainofsand,

Thank you for your suggestion.  When I told my wife about my attempt, she suggested I do the same thing you have.

I will try it.

It will take a while.  I am slow and long winded.

And frightened and hesitant.

Thank you, Browneyedgirl, for your encouragement.

This is the second time I have tried a reply to your replies; I lost the first one trying to preview it.  I'll just try posting this.

[Luvinmike]

Hi John;
You are in the right place here, as we are here supporting each other with all kinds of grief. Sorry to hear of your situation. We are a community of caring non-judgemental people. Some people, like me, stay around and post and read regularly, others not as often. Whatever is helpful, everyone is unique.

Hope you are having an okay day.
Terri

[laurenE]

Hi John,

I do hope you find it helpful to post here.  I'm sorry that your post got lost before you could post it.  Let us know how you are doing.

lauren