Little things

With all the talk of AI, I feel like a very lonely robot with no emotions.

Needing help basically with everything in life, small things can have a massive impact.

Windows really cause me frustration. When I want to open or close them after staff leave and won’t be back for hours.  Wind changes or a storm comes up, not a damn thing that can be done.

When it comes to eating, NOTHING worse than when I’m trying to eat a meal and the fork is flimsy.  Also, the food must be firm on the utensil.  Huge turnoff for me, when the food is not held properly.

It’s truly imperative that I get everything done within my time limit.  There are plenty of times when this does not happen.  My day can very quickly go into a tailspin. Say I forget to ask for a drink on the table, there’s nothing for me to do but go thirsty.  Add to that, no matter how hard I try, all life cannot be planned out.  Things are going to come up that are out of my control.

Someone phones me and I am by myself this is really difficult.  Odds are good that I cannot reach my drink during the conversation.  When this takes place, I get uptight and it is almost impossible to understand me.  So, the phone call is over before in starts. 

Company coming over is nice but at the same time it is nerve racking.  If they leave and I have no staff here, things can get interesting. Having to use the washroom and having nobody here to help me, is pretty self-explanatory.  Nothing I can do but try to not have an accident and try and hang on until help arrives.

Going uptown alone for a drive should be relaxing.  However, it can also cause havoc in my life.  A dry cough can cause me so much grief.  A drink or candy may be beside me, but they feel like two miles away.

If I have to sneeze and wipe my nose.  Nothing to do but hope people don’t think that I’m having a seizure.  My hat blows off in the wind, only thing I do is hope that someone stops to pick it up.

Not being able to move in bed really sucks too.  Being in the same position all night is tough on the body. Thirsty or hungry at night, not a darn thing that I can do about it.

 Having a physical disability, the way I look and feel is very important.  If I just, out of the blue want to wash my face or brush my teeth, this has to be timed out.  I want to go to bed early, sure, only thing is I have to stay in bed for a longer amount of time.

I have talked to people who can fix my life and they just don’t get it or care about my situation. I will never give up, but fighting for and living the most basic of lives is beyond exhausting.

Please don’t see this as complaining. This is just the way it is.  Some people say to me ‘I don’t know how you stay so positive.’  Trust me, I have my days of anxiety, stress and anger.  It would be nice to relax with a cup of tea and go pee. Instead, I am locked up and not free but I’ll continue to fight for my freedom and my rights to the little things.