When I was well and, on my feet, I was extremely active. I never used to lie in bed in the morning and I didn’t really enjoy sitting watching TV. I was a bit hyper active, preferring to walk places rather than drive, make things rather than read. Ironic then that the illness has limited me to bed and made me so reliant on others.
When we used to have visitors, I would always leap up to make drinks and be quick to cook and or wash up. I actually enjoyed tidying up!
How frustrating then to have to sit or lie down and watch others do everything for me. The most frustrating thing being when someone helps me with DIY, I want to be able to do it myself again.
There was one time, years ago, when we hired people from a local, low cost, social services funded group, to do some work in our house. I needed the TV putting where I could view it. That involved moving the TV and aerial, a job I would have expected to take me less than an hour. I watched the guy work all morning in fascination wondering just how long it could take to do such a simple job. In the end it took 4 hours! I was glad their hourly rate was so low. But I was also frustrated I couldn’t just get up and do it myself.
Many times, my wife Mary is rushed off her feet sorting out the house, organising everything ready for my carers and looking after me when I have no carers around. I have carers visit around 19 hours a week. As I need to be looked after 24/7 that means the remaining 149 hours are down to Mary.
We often find that everything happens at once. When we arrive back from a trip out there is a lot to do. Mary must remove my coat, then hoist me out of the wheelchair into my bed. My bed is in our front room and that is only small, so the wheelchair needs taking into the kitchen to give room and be charged. Then she needs to take off my sling, put up the bed sides, remove the sheets that protect our carpets, wheel across the trolley that holds my urine pots and off course empty them. Because of course I need to use them. If you are a man and have ever tried to wee sitting up in a chair into a urine pot, you’ll understand why I wait till I am in bed if I can. For the benefit of women reading this, you get easily injured, enough said. My drink also needs filling. Then my duvet needs bringing across along with a pillow for my legs to rest on and it all needs tucking in. When you are immobile your feet get very cold. Add to that the fact we often arrive back at meal times, the phone often seems to ring, or someone calls at the door and you can see how busy it becomes for Mary.
One time I was in the middle of being dressed in my pyjamas on arrival home, fortunately I was in my underwear, when a delivery driver found his way into our back garden and was knocking and waving at me through the window while I grabbed a blanket.
As I watch Mary rushing around getting everything ready, waiting for a duvet or drink or a urine bottle. I just wish I could get up and get it. It is very frustrating to look at something just beyond my arms reach, that would perhaps be only one or two steps away and just not being able to get it myself.
There was one time when I was so desperate to reach something just out of my arms length and Mary was extremely busy. So, when she was in another room sorting things out, I decided to try and reach it. The cot sides on my bed only go to half way down so I dragged myself to the bit without bars and sat on the edge of the bed, holding the bars. Still I couldn’t reach. Then I thought ‘maybe if I knelt on the floor?’ My bed is very low to the floor and I have quite long legs, but even so I dropped quite hard onto my knees. Hard enough that they bruised, and I had to explain to my carer the next day what I had done.
Now here’s a thing I should have realised, I can’t stand up or weight bear because I lack strength in my legs, all my legs, not just below the knees. So, you can probably guess what happened? I fell flat on my face. After I recovered, I used a great deal of effort to drag myself back onto my bed before Mary came back through. I still had to explain it to her. Obviously, I was exhausted, I caused a collapse, I was bruised. I never repeated it. Yes, I can be very foolish.
It’s easy to take for granted the simple things of life. Being able to get your own drink, go to the bathroom, fetch your coat, walk across a room, wash up, so many things you do without thinking. When they are gone, each one is a mountain you can just look at in wonder and be amazed you could ever do it.
Mary and I on a trip to Dawlish a few years ago