Saturday, June 26th 2010

The warm weather… and its effects?

Here in the south of England were enjoying a warm spell. Now I know I mustn’t complain too much because we get so precious little of it. I only mention it because of the effect it’s been having on me lately and this evening in particular… or perhaps it’s just a strange coincidence. Apart from the obvious one of trying to keep cool I’ve also been suffering from a drastically reduced appetite just lately and have begun to steadily increase my reliance on high calorie ensure drinks again. The heat has also left me feeling very weak. In short, I’ve just not been feeling myself these past few days. Maybe it’s the heat or maybe it’s another step along the disease progression path.

The afternoon call started off promising when Debbie scored a few brownie points when she came bearing gifts: the loan of a desktop fan. Within minutes the oscillating fan was bringing me down to a more comfortable temperature and I was able to sit at my desk working away at my computer with ice cold drinks only a straw way! Unfortunately a near disaster was only three hours away.

As I’ve mentioned previously on more than one occasion my ability to stand up is getting harder and harder, and that distribution of effort between myself and the carer is slowly shifting towards the carer. I thought we’d gained a little bit more time when we discovered a couple of days ago that my office chair had in fact slid down about an inch and a half on its gas strut. And in fact it did make a difference, however I still have the problem of staying up and the amount of time I can do so is slowly going down. In fact lately even standing a few minutes whilst I’m being dressed is becoming a real effort and the slow walk along the corridor between my upstairs rooms is becoming very traumatic because of the fear of falling. This evening after dinner I had a need to visit the bathroom so I was helped into a standing position and began the slow shuffle along the corridor concentrating hard on every step I made. I paused at the bathroom entrance uncertain of my footing, shuffled forward a few steps and suddenly felt my legs grow very weak and start to buckle. I called out ‘I’m falling, I’m falling’ and fell towards the edge of the bath. To her credit Debbie acted very swiftly and caught me in mid fall, pivoted me around and just about deposited me on the edge of the bath seat. It was then a slow and difficult process for Debbie on her own to transfer me to the glide about chair and then get me back to the study and into my office chair. My legs felt drained of energy and I was little help to her.

In my current state getting me to bed with just the one carer was going to be difficult and dangerous. We were going to need another pair of hands but on a weekend at short notice this was not going to be easy. My other main carers were unavailable but fortunately the office managed to locate someone who turned up around 9 PM to help Debbie get me to bed. This was my first exposure (in more than one sense of the word) to being in the hands of a double-up team. It all went smoothly enough although of course it was a bit uncomfortable for me. Later, alone and lying in bed I wondered if this was a one-off incident or if after all the signs I’ve had in recent months that I was at last reaching the next stage in disease progression. Were my days of mobility drawing to a close? One thing is for sure, if it hadn’t been for Debbie’s quick reactions I could have suffered a serious head injury tonight and having already suffered two of those in the past couple of years it is not something I want to go through again. So a big thank you to Debbie for saving me a lot of pain and also arranging at short notice extra help in getting me safely to bed.

Mark

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