It is half past twelve in the evening. I lay in my bed, my teeth brushed and washed. I lay on my back, my feet a bit higher, to get them a bit less thick and swollen. I cannot move or change my position, because my legs are totally paralyzed. I listen to the sound of my bed. My mattress has air compartments that are inflated or deflated with air to prevent bed sores. One hour later my husband comes to bed. He wakes me up en helps me to turn on my right side with the help of an ingenious turning system. I pull my knees up, with the help of two scarves, tied around each leg. I fall asleep again. At three o’clock I wake up. My muscles are stiff because my legs have been in the same position for hours. I try to push one leg a bit down, to let the cramp disappear. I don’t want to wake my husband up already. 30 minutes later I can’t stand the pain anymore, so I wake my husband. He steps out of bed and turns me on my back again. I can get asleep for a few more hours. Around five I wake up again. I lay immobile and helpless. I just can grab the side of the bed and pull myself on my left side. With the scarf around my leg I pull one leg over the other. I can go to sleep for a few more hours till half past seven. The alarm clock wakes us. My husband turns me on my back again. I raise the head of the bed, so I can take my medicine with some water.
Quarter pas eight: home care comes in. Today Anneke will help me. I cannot get out of my bed myself, so Anneke helps me to get up and to slide onto the commode. This commode will be rolled over the toilet and afterwards into the shower. I cannot reach my feet, so Anneke to washes my feet, my hair and my back.
Getting dressed: If your legs are paralyzed you cannot dress yourself. So Anneke puts on my underpants, pants, socks and shoes and helps me with blouse and vest. Big sigh. Getting out of bed, to the bathroom, shower and getting dressed was hard work for 45 minutes. I feel human and able again. Now getting in my wheel chair. I SIT. For the rest of the day I will sit on my bum.
Now breakfast and after that to the office for a few hours. With help of the transfer board I slide onto my mobility scooter. My husband has to give me a big push, because I have to slide up. Then he has to lift my legs and feet onto the scooter, because I can’t move my feet or legs. After a 10 minutes ride I reach the office (I am very lucky to live so close to the office).
Half past ten I reach the office. I have to slalom via the wheelchair ramp. I am used to it and have become quite handy. Then with the elevator to the second floor. There my electrical wheel-desk chair is waiting for me. Every day there are a few colleagues waiting for me to help me into the wheel-desk chair. I manage to slide onto it myself, but they have to lift my legs and feet onto the feet rests. The mobility scooter will be turned, ready for my trip home later that morning. Now I sit behind my desk and start reading the news bulletin. Today our Secretary of State writes about the people who have brought their hidden savings back to Holland. Also the list of bonuses for 2009 is published. The files are all in the computer so I open a file and I try to get some work done. Around noon I need to visit the bathroom. Time to go home fast!! My colleagues fetch my coat and they help me into my mobility scooter. Lift my feet and legs (because …) Ten minutes later I am home. My husband opens the door to the bathroom, so I don’t loose any time.
Visiting the bathroom: First one of the feet rests must been pulled off the chair, or else I cannot get my legs off the chair. I cannot lift those rests myself, because my leg stands on it and I cannot lift my leg. Husband lifts my leg and pulls the feet rest off. Very cautiously I slide sideways onto the toilet. Then I need help to pull my underpants and pants up. With the help of the transfer board I slide onto my wheel chair. Husband needs to give a big push, because I have to slide up. Then lifts my feet en legs onto the feet rests. Pffffff. Finished.
Today I don’t have therapy and we will have visitors. So we will stay at home. For the rest of the day I will stay in my wheelchair. When it is evening I start to be fed up with sitting in my chair. My heels start aching, because my feet are immobile all day on the feet rests. My back is tired, because the muscles of my torso are weak. I look at the couch. I would love to sit on it, but once I am on it, I couldn’t possibly get off. So I just stay in my wheelchair.
When it is eleven o’clock I have sat all day. My feet and ankles are swollen again. Because the calf muscles are paralyzed they don’t have a pump function anymore. My bottom hurts. I have a vicair cushion to prevent sores, but still all those hours of sitting is hard work for my bottom. My husband helps me for the last time of the day to the bathroom. (feet rests off the wheelchair, pull pants up) and into the bedroom. He pulls my shoes and socks off, and my pants. Night trousers on, so I can slide onto the commode in the morning. Tie a scarf around each leg. With an experienced sway I am thrown onto the bed. A bit of pulling and pushing and I lay in the middle of the bed. The day is ended, I can go to sleep again.
My husband will enjoy another glass of wine in front of the television. Today he prepared breakfast and lunch. He cooked dinner, did the dishes, did some shopping, some cleaning. He made coffee and tea for the visitors and for us. Put flowers in a vase. Gave me my medicine, poured me some wine. Etcetera, etcetera. And I?? I have talked to the visitors, I sat behind the computer to write this blog, I play a computer game, read a book. Very lazy. But that is not by choice. I would have preferred to be more active, but that is not possible anymore.