A Day with Disabilities

        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.

3 thoughts on “A Day with Disabilities

  1. My son had a seizure disorder when he was younger and the exhaustion and bewilderment in his face after a series of seizures was heartbreaking. I really feel for you dealing with this so constantly. There are very few people, especially in the US, who get disability without really seriously needing it. I’m fighting for it here in Australia because I have a chronic pain/fatigue condition (Fibromyalgia) and they seem to think that I could work more than 15 hours a week… Well to be honest I could if I could work lying down! Thanks for this glimpse into your life.

  2. Dear Mia, one thing you did leave out is that in spite of all your challenges, you continue to inspire others and serve as a fantastic role model for any of us who have to overcome. Challenges come in all shapes and sizes. Thankfully, heroes do too. Thank you for being mine.

    Love,
    Nadia

    • Thankyou Nadia, Your beauty, your intelligence and your chuttzpah impress the hell out of me. If I inspired you I am only able to do that because people like you exist, you let nothing get in your way you let nobody tell you you can’t and the world is truly your oyster. Thankyou for your kind comments and thankyou for being my friend. Mia

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