Lynn and I have talked several times about me posting to her blog or starting one of my own. So I'm going to share my typical day.
I've been waking up early lately which is strange because I've been going to bed later. I guess it's just another part of the disease. The first thing I do after I wake up is lower the foot of my hospital bed and throw my feet over the edge. The weight of my legs helps to get me in a sitting position but occasionally I have to use the hand rails to pull myself up. I then go outside and smoke a cigarette before coming back in and settling into my recliner. If it's too early I just sit quietly and use my phone to check email and catch up on Facebook, I don't want to disturb Lynn so I try not to turn on the TV before 8.
I spend most of the day watching TV. My home health care person comes on Monday, Wednesday and Friday from 10 to 1. It's nice to have someone to watch TV with and make small talk. She also does range of motion exercises with me and makes sure I get lunch. Lynn fixes my lunch and leaves it in my fridge in the basement. I'm pretty much confined to the basement now. I'm comfortable in the basement and have most everything I need; small fridge, microwave, hospital bed, TV and my recliner, all the comforts of home in 500 square feet.
I usually take a nap in the afternoon after lunch whether I want to or not. Trying to find something entertaining on TV can be a challenge. I'm not into the celebrity reality shows or all the conspiracy shows that are on. I try to watch one of the national news shows and the local news just to stay in touch with what is happening in the world. Dinner can be something Lynn prepared that I can heat in the microwave, something someone brings over or something Lynn picks up on the way home. I spend the evening watching some more TV before I turn in around midnight.
So that's my typical day it's quite a change for someone that was used to working 40+ hours a week. It's been almost a year now since I had my first noticeable symptom. It took about 6 months from the onset to diagnosis. I really thought things would progress slowly but I've been rather surprised how fast the disease has advanced. I don't notice a change everyday, they just suddenly appear. I've lost the use of my arms and my right leg is becoming more useless on a weekly basis.