Yes my wife gets up at 6am and goes to work and I sleep till 9am, Then I get out of bed into my wheelchair get to the bathroom shower dress go back make coffee and breakfast and start my computer and my day begins.
My day as a person with seizure disorder that is not controlled, and as somene who has PTSD and I am in a wheelchair for life and at the moment my left arm cannot be used without agonizing pain and my right arm dislocates. I just had 2 tumors removed and am waiting to find out if it’s cancer and two days after having them removed another tumor the size of a human eye has been discovered and I am having daily seizures and I am home alone without assistance for 12 hours a day so yes I have it easy I stay home all day.
Today my sciatica pain is also out of control, so here I am a woman who cannot walk, is lying on a sofa next to a wheelchair she cannot push because I have two arms that don’t work while waiting for labs to call to answer the question were the lumps cancerous or simply benign?
Most days my facebook friends will tell you every second word is ran into the next a letter a day chooses not to work, today it’s the letter W it isn’t working on my aging keyboard so reading my posts some days requires a Navajo code talker.
Most people ring a sister or a brother when illness is bad, but what would you do if you had my problems and had no living family in this country and the family you do have is across the world and doesn’t care anyway?I’ll tell you what you do You survive, you don’t live you just survive. I used to live I did it by climbing and by training in the pool 2 miles a day and by competing semi pro in wheelchair road races but all those take working arms and a body that the parts that still do work don’t scream with pain. But when they do scream in pain your life stops, and the problem with society is they look at the wheels under your ass and think”SHES IN A WHEELCHAIR SHE DIDN’T HAVE A LIFE ANYWAY SO WHATS THE RUSH ?”
The rush my dear doctor is this, the universe took out her PMS on me one day and fucked my legs, I complained so she threw in a seizure disorder or four and then as if that wasn’t enough she thought what the fuck let’s bring back that decade of childhood molestation into your dreams every night and give you ptsd! When the universe treats you like their ex wife and does their best to fuck your life you have to take the little she didn’t mess with and roll with all your heart, you climb it if it’s there and you swim it if it’s wet and jump out of it if it has a propeller and fight like if you stop fighting you die and shout so loud for those without a voice going through the same crap so everyone going through it with you can be heard. So Doctors, If you dish out apathy instead of answers you screw that up and who the hell gave you permission? to not me.
I have been waiting a month for my doctor to do her job, another doctor thought me wanting a tumor looked at was “needy” and I have a seizure less than an hour from hitting but I will climb a wall real soon and I will swim 3 miles next time to make up for my absence and I see a 20 mile race in my near future. If I keep typing this for the time it takes PTSD can go to hell because my mind had other things to do.
So yes I sleep in because I was having seizures till 5am and my poor wife was up tending my needs, and yes I stay home most days because the day before I probably did 2 miles in the pool and 10 miles on the road because you see we the people who live between the pain have to fill every spare minute with life, because the moments its meant to fill are spent in a state you would never wish on your worst enemy. Anyway thanks for listening, but my face is ticking my left hand is ticking and my old mate grand-mal is knocking on the door.