I received an email from the MS Register yesterday asking me take part in a survey. It was set up by the University of Exeter as part of a project funded by the MS Society. No doubt many of you received the same one.
I found the experience rather disturbing for, uncannily, I had been reflecting on such matters, including mortality, over the past months. The questionnaire sets out a number of long term health scenarios and asks the participant to consider trade-offs. For instance, would you consider six years of rude health as a worthwhile trade-off against ten years of debilitating illness?
I had recently been thinking about the way MS might affect the rest of my life. I am 62 with PPMS. Presently, I can do a number of physical activities and my powers of concentration are largely undiminished. I do suffer from some fatigue but only moderately so.
To me, the ability to enjoy reading, music, works of art and my surroundings mean more than the performance of physical functions. I can still go to concerts and the theatre, although the timing of the interval is crucial. Films are out of the question, as explained later. I hasten to add that that my views might change should I become more physically compromised. I can walk about half a mile with my rollator, on a good day, although the bane of my life is bladder urge incontinence. I do miss long walks and cycle rides, however. Since joining this Forum I am acutely aware that I am very, very lucky compared to many of you and I always admire how positive people are. This is not meant to be partonising.
Has anyone else taken part in the survey and what are your opinions? I am keen to know if any of you were discomfited by the experience, or was I taking it too seriously?