By Jon Wegner
I would like to say first that I’m not a doctor so I don’t know all the technical words for what I describe in the following paragraphs. But I speak in layman’s terms that I think most people understand. I have secondary progressive multiple sclerosis and as I sit here I’ve been thinking what my life is going to be like in a year, five years and 10 years from now? I’m 49 years old and I suppose I’m getting set in my ways. My MS is only going to get worse. That’s not a very cheerful thought but I try to never feel sorry for myself. I was dealt this hand of cards and I have to deal with it the only way that I know how, with laughter and a never say die attitude! I was diagnosed in 1991 but now that I know what the symptoms of MS are I can easily trace it back to 1980 and maybe even earlier. It’s ironic but I managed health clubs in southern Minnesota from 1980 until May of 1987. It’s ironic because I used to be able to run a couple of miles per day and also bicycle 20 miles the same day. Now I can hardly get out of bed and when I do I’m reaching for my electric scooter or my walker.
The first symptom that I clearly remember is from 1980. Obviously, I didn’t know it was a symptom back then but I do now. I was working at a racquetball club in my hometown of Rochester, MN. I remember sitting in the whirlpool after work or working out and when I got out of the whirlpool I would feel strange. I thought I just didn’t like the hot water because the whirlpools were at least 105 degrees. I couldn’t explain the feelings then and I can’t explain them now but I just didn’t feel right! I was sort of lightheaded, a little dizzy, and sort of wobbly. Thinking back now I was at the clubs for almost 7 years and I bet I wasn’t in the whirlpools more than six times! I also remember having that feeling when I sat in the saunas or the tanning beds. Now I know that it was the beginning of my sensitivity to heat. When I think back I can’t believe that my MS was in my body just waiting to get out. I did a lot of activities in the 80’s that made me warm and I always drank extra beer and blew it off that I just didn’t like heat! Who would ever imagine that it was multiple sclerosis? I know I didn’t.
The second noticeable symptom that I had was fatigue or tiredness which is still a major problem for me today. I worked hard in the early 90’s trying to get my carpet cleaning business going. I would clean a restaurant’s carpets at night and then I would get up and do the marketing the next morning! I used to come home at lunchtime and I can remember lying down on my floor by my TV set and dosing off. I always laid by my TV set because I didn’t have a remote control for channel changing. I had to do it manually. I guess this was the ice ages for TV! lol Then I would wake up after 10 minutes, collect myself and then head back to my office! I did this every day. I learned how to country western dance in October of 1989. I didn’t clean carpets too much on the weekends so when the weekends came I wanted to save my energy for dancing! Again, I would take it easy during the days for dancing and drinking during the night! I would just lie around waiting for 7pm to get there. Again, I would lie in front of my TV dozing on and off all day. I thought I was kind of lazy but I worked hard during the week. In 1990 I was 32 years old and I thought I could spend the weekends any way I like to! In the summer I always explained it to myself as simply not liking the hot weather which in hindsight was true.
The third major symptom that I noticed at this time was the most compelling and I knew something wasn’t right but I didn’t know what. Back in 1990 I jogged two miles everyday. I always ran the same route from my apartment around my neighborhood. I did this year round in all seasons. Anyway, each time I ran at the very same spot my right eye would cloud over! It was like someone had a piece of shrink wrap over it. I could still see out of the eye but it was annoying and I wondered what it could be. I never got too excited about it because after coming back to my apartment and cooling down it would clear up. It was weird and I was a little scared but I didn’t have the time or the money to visit a doctor! I jogged everyday and this would happen everyday. Eventually, after a year of this I made it to an optician who made my prescription stronger but that had nothing to do with the clouding over. I know now that optic neuritis occurs when the optic nerve, the pathway that transmits visual information to the brain, becomes inflamed and the myelin sheath becomes damaged or is destroyed. After learning that I had MS I figured when I ran my body was heating up and affecting that optic nerve. After cooling down the nerve would go back to normal and my eyesight would return.
To answer my question from the first paragraph I think my disease will progress over the next ten years. I know that I’ve gotten worse in the past year. I now rely on my scooter to get anywhere when I go outdoors and the heat really seams to bug me worse. I now have my apartment set up so I can ride my scooter in every room including the laundry room, that bathroom and my tiny bedroom. That’s nice and a load off my mind! As far as work goes I have my two insurance agents, a mortgage company and a carpet cleaning company that I do telemarketing for. They pay well I can do the work in my apartment sitting on my backside. I’m also trying to sell my e-book online and that should start moving now! My life is still GOOD!
Jon Wegner is a resident of Fargo, ND. He’s lived there for three years after being a lifelong Minnesota resident. Jon’s young son lives close by and the reason he moved there. Jon’s ebook and website can be found at www.disabiz.com To subscribe to Jon’s newsletter go to www.mymultiplesclerosisbookandlife.com
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