Friday, January 15, 2016

Sometimes I think; Nobody cares!

I am up late.  My mind is a whir with hundreds of thoughts.  Self pity and depression appear to be close cousins.  Sometimes, I think, nobody really cares about how I am doing.  What brings me to that conclusion?   A number of things, for instance:

No one wants to discuss my disease!  They all just assume I do not have any disease.  They discount my issues or down play them.  Then, they change the topic.  Discussion LBD is important to me.  LBD IS my life, just like Navy was.

Few people call and virtually no one comes over.  Yes, I get some telephone calls from so my old friends.  And my best buddy, Jerry, calls me, or I call him, once a week.  We talk for at lease an hour and I look forward to that call all week.  Visitors, just don't happen.

People think, since I am relatively young, I am faking it!  I guess this goes with the first item, but I have actually been told, I do not have Lewy Body Dementia!!

I take these issues and deduce that no one cases about me.  I may be wrong, but it is how my mind processes these inputs.  But, then again, maybe people thing they can catch Dementia from me!!

As a note of interest.  Today, my Psychologist's Administrative Assistant called and wanted the address of my LBD Blog and the LBDA.org site.  I was impressed, since my Psychologist does not use a computer and did not know about blogs until I told him about them.  Still, I am curious how he will use this info.  Since I trust him, I am not worried, just happily curious. 

LBD is a lonely disease.  And somewhat peculiar it seems.  I want to be isolated, in a cocoon, alone, with a locked in routine, that I control. I do not like crowds and I am quickly overwhelmed by too many sensory stimulants.  But, I crave people that are interested in how I ma doing.  These issues seem to be in conflict with each other.  But, that fits with how my mind works anyway, i.e. yesterday's post.

Oh well, LBD is a journey.  "And I have miles to go before I sleep."  But there are less miles than there were when I started this journey.  And for that, I am glad.

3 comments:

  1. I care. I hope you are having a better day today. You sounded so sad last night. Please know that when people search for this terrible disease they find you and read your stuff...even if they don't say anything. I wish I had internet at home. I would read every post!

    I am in a hotel with my mother checking out today. She brought me a stack of papers from the Mayo Clinic with my husband's symptoms all over them. He's had hallucinations. He's fallen down the basement steps twice just in the past month. He has been sleeping terribly with thrashing and talking in his sleep. Sweating with every activity, no matter how minor.

    How old are you? I see you said you are relatively young. I am curious and can't poke around your blog long enough to see if it's in here. I will be at the library tomorrow morning to check to see if you answer.

    I hope you have a good day today. I am on my way home soon and can't open my mouth about this yet. Please pray for me and I will pray for you!

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  2. Silverfox, I have tried to comment several times but couldn't get through.

    I care about you and if I were there I would stop in to listen to you. My dad had (undiagnosed) LBD but we had not heard of it and did not know what it was. It was very difficult for us and for him. I appreciate everything you write.

    You are doing a great service. I am not there in person but I listen to you every time you write and look for your posts.

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  3. Everything is very open with a precise description of the issues. It was really informative. Your site is extremely helpful. Thanks for sharing!

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    ReplyDelete