Tie a Knot and Hang On

Hello. This is the first time I have submitted a story to this forum. I was diagnosed with MS in 2000. Over 16 years of dealing with this has taken its toll on me but I try not to show it. Although I am still mobile, every single day I deal with new or old symptoms manifesting themselves. I always have the fear every morning of whether or not I will be able to walk.

I have been fortunate in many ways and I try my best to deal with what has been given me, but there are many days of anxiety, frustration, anger and feeling sorry for myself. My life has changed since being diagnosed and I find myself with more anxiety than ever. My husband and family are wonderful. Their understanding means the world to me but the guilt over plans being cancelled or changed, gets the better of me. Because I don’t look sick, it is difficult for anyone to understand what I am dealing with. Comments like “you look great” or “it could be worse, you could have a sore back”, or “I know someone in a wheelchair who is still working, why aren’t you”, can really hurt. I put on a brave face and push myself to do things when I really don’t have the energy to. The desire is there but the fatigue and bowel issues stop me from really wanting to attempt any kind of activity.

I am now retired and this is supposed to be the best years of our lives. My husband and I do everything together and even get away from the cold for a bit every year. The lead up to this trip is exhausting and the old “worry needle” hits maximum speed. The “What If” syndrome manifests itself and I picture all kinds of bad scenarios that could (but never do) happen. The imagination is very active before trips, doctor appointments, visits with family or friends or even something simple like going to the hairdresser prove to be sometimes insurmountable.

My parents have both passed. My Mom had Crohn’s Disease. I had 3 sisters and 1 brother who have all died at a young age from cancers, strokes or suicide. I am the last one in my family and left to deal with this without their support or encouragement. My husband, children and grandchildren are what is keeping me hanging on and pushing myself to accept what I cannot change.

MS is a disease but it doesn’t define us. We didn’t ask for it but we can choose to accept it and move on or let it take over and win. You just have to tie a knot and hang on for the ride.

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