When my MS got worse and I was no longer able to walk or use my right hand and arm I felt particularly vulnerable; this feeling has got worse as time passed. At first I was living at home and I had carers who we employed using money from the benefits agency. For about twenty years my husband, Adrian, was my main carer, then, when he reached the end of his tether and I was identified as having special health needs, I moved into a local nursing home which could deal with my situation day and night. Adrian visits me regularly and I have a number of local friends who come to visit me once a week which I find stimulating, and a break from the four walls of my room. With the help of mobility allowance I was able to buy a specially adapted car in which I can be driven places by my husband or friends; this allows me the extra stimulation of leaving my room and visiting gardens or friends.
The carers in the nursing home are, generally, caring and I have been encouraged to decorate my room with familiar pictures from home. I used to be a journalist and so I enjoy writing and my friends are willing to take dictation. My blog came about through one of my sons; now it is a useful target for me to write for. I wrote a short book called “How my life was tripped up by MS” which is being published on my blog.
One situation that I became aware of was my friends kept telling me that I was “remarkable”. I think this is really because I do not complain about my situation. My friends say they visit me because they enjoy my sense of humour and my company and are impressed by my remarkableness. I once met a person with MS who was in a wheelchair and told me about what they had been able to do and no longer could. I realised that looking back on one’s life is no help; that person was very depressed. I have avoided being depressed by looking forward to what I can do like writing articles and emails, etc. and keeping my sense of humour alive.
With the help of Adrian I have various tools to keep the negative feelings at bay; one is the Possum. Possum means “I am able” in Latin and it has certainly enabled me to feel I can do things like contacting my family and friends on the telephone which Adrian organised for me beside my bed. Not only can I answer the phone but also I can use the Possum to ring my friends, and the phone has a hands-free button which my visitors can push if someone rings while they are with me. I can also use the Possum to turn the television on, and to change channels. Though the telly can help to make time pass in the evenings I do not watch it during the day when I see friends or have other activities. The Possum is an amazing piece of modern technology, and it enables me also to call a nurse when I press the pad that works it.
I find in my present state that I am a clock-watcher; Adrian bought me an electric clock that I have beside my bed so any time of day or night I can see what the time is. Another useful feature of my days is that I have physiotherapy every weekday morning to keep my leg and arm muscles and joints moving; these exercises also help the blood circulation. I have a full body massage every other week; this of course is very nice and also helps the blood move around in my body.
Both Adrian and I are members of the MS Society and I contribute articles to the local group newsletter. Adrian belonged to the carers group which he found helpful. I have plenty of time to think and I use this thinking time for my articles to go in the blog or the local MS magazine. I have written this one to help other people to look forward, perhaps to find activities that they can do, or to use their partners or friends to help them to be positive.
Mary Smith, December 2013