2-4am Ella’s voice breaks the dark it’s ok babe you had a seizure I am in a fog I ache I feel like I just played full contact lacrosse I exhaustedly fall back to sleep.
6; 30 am alarm breaks the mist, Ella goes to work, and I’m on my own
8; am I wake aching wondering why? then the vague memory of the seizure comes through the fog. I can’t reach My wheelchair but the sofa is 5 feet from the bed so with a practiced leap I make my sofa it’s specially set up for my epilepsy I have 3 bean bag cushions 4 ft. long that I place around me in case I seize.
I take 7 pills for 4 illnesses and just sit, my right hand starts to tic my right eye joins it so I shake for 20 minutes. I hook my wheelchair with my walking stick and pull it over and I roll to the kitchen. The espresso machine is turned on and I’m about to light the stove, I have a 10 second Peti-mal the matches are all over the floor and the kitchen smells like gas I turn everything off breakfast can wait. I start to sip my espresso I always put my cup above me on the table so I can’t knock it flying (15 minutes later I had uncontrollable tics couldn’t type) sip the coffee for 15 minutes. Breakfast take 2 I get it made, now to get it back without throwing it when my arm gets a sudden life of its own, sometimes the real reason I think I have lost 250lbs is 1in 3 breakfasts don’t make it to the table.(ticking again) Manage to finish breakfast and I get to and out of the shower I’m dressed.
11; am Had a seizure, woke up don’t know how long it was out but must have hit something hard because my injured shoulder dislocated.
12 lunch Only took 4 hours to get fed ,get caffeinated and get dressed, in the mean time I have posted a good morning and managed to get the first story of the day out. ,Depending on the pain level I either laugh or cry when I think what if my fb and twitter friends could actually see my day.
2;30 I have had 2 seizures ,dislocated my shoulder, fallen twice and now I’m on m y sofa. Laptop in front ,blackberry to the left remote to the right 2 steno pads and pillows in a circle so when I seize again (and I will) no more breaking bones on the solid wood coffee table.
3pm 2 more anti Convulsants 2 more anti myoclonic meds and 2 others and if it’s Tuesday an inter-muscular injection all with shaky hands.
4;pm I don’t know how long I was out this time 23 fb messages 120 new tweets 7 missed phone calls and 11 Im’s from Ella. I am so sore, so exhausted and it’s another 2 and ½ hours till Ella gets home.
5pm I manage to get the prep done for dinner,
6; 30pm Ella comes home, she takes over, and I take more meds. By 11pm its bed time I have had another seizure and my meds have worn off I spent the last 3 hours with exhausting uncontrollable body tics and petti-mals.
This is not an exaggeration, this is not a bad day this is just my day. I’m not saying this is representative of other disabled peoples days although I’m sure it represents many, but through all this I manage to live, I manage to love and I get my work for others done. But to the nay sayers who think we get payed for sitting around I say you come sit with me for 24 hours. To my brothers and sisters in the life blessed be.