Basic Human Necessities…? (light trigger warning)

Human bodies supposedly have basic needs. Sunlight? Check. Water? Check. Food? Check. Sleep? Check. Social Interaction? Check.

I can’t have most of those. If I look outside when the sun is up my eyes burn. If I go outside and the sun is up my skin starts to blister even with sunblock unless I have a shelter. If I drink water, not just water but most liquids excluding Sprite my throat blisters shut. If I eat just anything? Woops near death or worse. Sleeping? Supposedly four hours a day is not enough but here I am… Dealing with people? I am just out of spoons.

I have been thinking a lot lately, while struggling to muddle through my day, which consists of barely up before the caregiver gets here and down right after she goes most of the time. That’s four or five hours and I start wilting right away. The cause of this deplorable energy drain is related to the constant pain factor but also  how much I have to do just to get to the door to unlock it. I haven’t had any spoons left for a while. I know that this will change with the chair but the pain won’t and nor will always feeling thirsty. It’s a constant burning sensation in my body, my back won’t stop sending stabbing burning aching numbness through out my body. My throat mirrors this same feeling but in a way that my mind interprets with a constant desperation.

I am dying of thirst.

I wake up with this notion daily. It’s terrifying, and it never goes away. There is nothing I can do about it, except put my life at very real risk to try a new beverage or an older one periodically. The only solution? Sometimes I have to have those throat closing blisters for a moment of relief. Sometimes I have to eat something bad for me so my body will stop signalling that it is starving. Sometimes I send my caregivers home early because I cannot stay awake anymore, which hurts us both.

I don’t have any answers, and no one else does either for any of this but what are you supposed to do when the basic primal needs you are taught as a child that are supposedly irrefutable do not work for you? In school I was taught that we humans need shelter, as being in the elements will harm us. I was taught we need sunlight as well as too much shelter will harm us. We need food and a variety of it not just one or two things. I was taught we need fresh, clean water.

Maybe it’s just a sign of the contamination that this world is suffering from? I would rather not be an ear marker for someone in the green movement or as I call it Environmentalism for a Buck. I just want to live. There are times when this sensation of a slow burning death is frightening. If there is a disaster how am I going to live? Washing my hands makes my body burn. Swimming and bathing? same. I started pondering this when the deaths of people during hurricane Katrina were described.

These people were the disabled and disenfranchised, left to die because they were seen as other or less than human. We won’t mind dying of thirst cause we’re just not people. I mind. I also noted that the symptoms that they described of that thirst, the burning throat, slightly swollen tongue, and the sensation that you must claw at yourself just to breathe, for day two of dying of thirst are my constant symptoms. Even writing that I had to grab a bit of my drink because for a split second while the liquid is going down my throat I feel alright.

I wonder too how this will effect my voice acting. Sometimes I cannot talk and I am not sure if that is an issue with the Autism or my body over riding vocals because I am just so THIRSTY. This goes beyond the immune system issue now. I can smell that water is bad for me just like any other allergen but my body still has the need. I am not sure if I should try adding more milk and maybe some home juiced orange juice into my diet. The OJ is bad because of oranges being on the list of things I cannot eat but the juice tends to be okay in small doses. The milk is good in small doses but the doses are both too small to rotate out. I need at least a week between orange juice consumptions and I can only do three days of Milk. It’s still a primary ingredient in all I eat as cheese but we are just talking liquid form.

Pomegranate juice only comes in a concentrate that has been re-liquefied now. I get sick from all the brands but POM, and POM makes me sick after three days too. With that I need months before I can drink it again and who knows what is in it? What if they changed the concentrate? I could die. No thanks.

I am at a point on my energy where I am not sure I can finish reading the healthcare bill and trying to boil it down to just what is important with an explanation for people who can’t understand it on the big stuff. It may take me an entire year at this rate. I finished maybe a fourth of it, but that’s not a lot considering how big this thing is. I am having trouble even making my writing commitments. I WILL keep trying but I am just not sure. What if I am denied for the chair again? My entire life beyond eat sleep and drink hinges on that chair.

Basic Human Necessities: Wheelchair.

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