Tired of Fighting All By Myself

Hey, having a really low day.  I’m just sick of being sick.  The same old thing over and over.  I wish the people that were there for me the most, weren’t people that are paid to help me ( social worker, psw, etc.)  I know they genuinely care, but I suppose it would be nice if there was someone who was here bc they wanted to be, not bc it’s their  job.

I don’t know why people act as though having pots, is as simple and as easy to manage as having a cold.  Every movement I make is a struggle and causes pain somewhere.  If you went for a walk with me, it would be for me like going for a jog.  Name any part of the body and I can give you something that my pots is doing to it to make it that much more of a struggle for me to get by.

When there are doctors that know we are at risk for a stroke, etc. why do they not give us the time we need? Instead I’m lucky to see a specialist who knows nothing about pots and takes two years to admit it to me.  And now have to wait double the time, if I’m lucky to wait that short of time, to see a specialist who does.  One who’s so busy, he won’t be able to make me any kind of priority.

Our major organs are working at least three times harder than a normal person’s are… when are our organs going to just give up?  What happens then?  And why does this not matter to people?  It breaks my heart to know that my life is shortened bc people don’t even take the time to learn what pots even stands for.  Guaranteed if I was to call up the people I love the most, not one of them could tell me what pots is in long form, let alone tell me anything about it, except maybe that it effects my heart rate and blood pressure.  Wow.. whoopdy shit for you!  It truly breaks my heart that no one sees us.  That they have no clue how much of a struggle it is to keep fighting for what seems like a lost cause.

It makes me cry that there isn’t one person who would just come by and offer to make me some soup without me having to call and hope that they aren’t too busy, or too tired to be with me.  How lonesome and tiring it is to do it all… or suffer and not get to eat days on end, bc no one thinks of me without me begging for help.

I wish I could be me, and do the things I want.  To be independent and happy.  Feel good.  Pain and nausea free for even one hour.  To be able to sleep and not wake myself up from my blood pressure being so low I’m shaking the bed.

Just one hour seems like too much to ask for.

Ash,

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