MS has most definitely changed my life
Multiple sclerosis

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on 2/27/16

Thank you for your story Ann. I too have SPMS, having been diagnosed 30 years ago. For the last 15 years, I have been confined to a wheelchair and this has the greatest effect on my life. My wife is also my carer and never leaves my side when we are out. However, I feel increasingly invisible as people talk to her or to the chair rather than to me.

Being disabled also makes life much more expensive. For example, necessary adaptations to our car cost as much as the car itself. Having forcibly retired from our careers, our only income is a modest corporate pension and my state disability benefits. Yet our home has needed much renovation to accommodate a wheelchair, hoist, wet room, ramps, etc. Meanwhile we have had to move house and downsize three times to release enough capital to live comfortably.

Another disruptive effect of MS symptoms is the impact on bladder and bowel function. These are areas of potential embarrassment, so I take no chances. It severely restricts our ability to maintain a social life or attend events. My urinary function is controlled by a suprapubic catheter, so that is not a major problem. But my bowel function needs a hoist and disabled WC, which are rarely found together. It also makes air travel impossible, so has put an end to our overseas holidays.

On the positive side, I attend a day-centre two days a week, which gives my wife some respite and renews my interest in activities to keep my mind busy, such as debates and discussion groups. I have also reawakened an interest in art (after 50 years) and have launched a portfolio of watercolour paintings. This pastime helps me relax and boosts my self-esteem. However, I have to limit my time at the easel because my one useable arm gets tired quickly and my bottom gets sore from sitting in the chair for too long.

In short, I concentrate on the things I can do and 'delegate' those I can't. My next hurdle is the painful catheter change, which I must endure every six weeks. The time passes all too quickly.

In the end, we are all in the same boat. After all, life itself is a terminal illness.

Alan Butler

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