For most of us with MS, we have had some damage to our nerves that results in the inability to do something, something that most normal people can do and something that they take for granted. When you can’t do what you used to be able to do or something that the average person can do, it is not easy to accept. A period of grieving is required before acceptance but to move forward with your life, you need to learn to live with it and find ways to manage it. This is not easy.
For me, I have 2 main symptoms to manage, the first is my left leg/foot drop – which can be painful, numb and uncoordinated, it results in a difficulty to walk far (one end of Liffey Valley (shopping centre) to the other) or stand for long (+20 mins) and an inability to run. It also affects balance. This is really hard as I was very fit being a World Champion Kickboxer and my body was a tool that I used to be the best. I was also in great shape which is hard to maintain when you can’t do aerobic exercise.
So I have to plan, when I go shopping or out with friends or on a date, I need to know how much walking there is going to be or that there is a seat available. It also means that I can’t clean all of my house together or go for a walk or dance the night away, all things that I used to love to do (well maybe not the cleaning). As I said it is not easy but once you learn to accept and listen to your body it is manageable and most of the time not too frustrating. You plan – clean one side of the house today another tomorrow, park nearest the shop that you need to get to, have a date where suits you best – all things that make your life easier. You also learn to take help when it is offered, to use the wheelchair in the airport so that you conserve your energy for when you arrive at your destination, to listen to your body. Resting is very important and can mean the difference between a lot of frustration/tears and feeling sane. You still have some bad days but trying to manage things can keep them at a minimum.
My second is my bladder, which was a big problem and a source of constant stress for me for a number of years. It wouldn’t empty fully on its own, which lead to repeat kidney infections and that lead to some leakage. This is very embarrassing especially when you are a young woman. It was also frustrating because there were times that I knew that I needed to get to the bathroom but my leg wouldn’t work and wasn’t fast enough to get me there and I ended up having an accident. It was a constant source of worry and stress and didn’t help my MS, I don’t know how many times I cried over it. I suppose I am giving you all this detail because if you have a similar problem there is a solution.
I use a disposable catheter to empty fully so I no longer get kidney infections. I also made a decision to get Botox in my bladder so that there can be no leakage or accidents, it is something that I get done on an annual basis. The other option is to take drugs that can stop leakage like detrusitol and lyrinel. Finding a solution to my problem was life changing. It is like somebody lifted a weight off my shoulder and gave me back my life. I no longer worry about it or the effect that it could have on a relationship.
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