Confidence & MS – 2/2/19

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One thing MS can do to a person is affect their confidence, at least it did to mine! No two MS disease trajectories are the same and how it will affect your confidence is unknown.

I’ve always been a fairly confident person. All through my school years I got A’s and B’s. I was well coordinated so all sports were easy for me. I had a good personality so meeting people was no problem. I don’t think I was ever cocky but I was confident of my abilities. Then in 1991 I got my MS diagnosis at age 33, then I started having exacerbations (worsening of symptoms) and started losing some confidence. Now I can say after dealing with MS for 27 years that my confidence is shot. Most days I’m afraid to leave my apartment!

I didn’t admit it back in ’91 when I had my first exacerbation but it must have bothered me to some extent. I was happy when the exacerbation ended but then I’d start wondering when the next one was going to start. That’s not a good way to live. It also seemed that after each exacerbation I would lose one more body function and more of my confidence.

Multiple sclerosis is not like other diseases. The lack of a cure, the numerous and varying symptoms and the uncertainty of exacerbations can affect you on every level – physically, emotionally, mentally and spiritually. The one good thing about having Secondary Progressive MS like me is that you don’t have to deal with exacerbations anymore, if that can be considered a good thing.

As I said above I’m 60 years old now and nothing below my waist works properly. I stopped walking at the ripe old age of 53! I used to be so proud of my legs. In 1994 I was traveling alot for my work. I said many times to myself that if my vehicle ever broke down and I was stranded somewhere I’d be OK. I had very muscular legs from all my sports playing, running and biking that would save me. I could walk or run somewhere to get help. Now my legs have atrophied and look puny. They aren’t good for anything, just 40 pounds of nothing.

I thought I’d accepted and conquered all my MS symptoms and problems by 2016. I had adapted my life to all of them. However, there was one big symptom that was still to come. Loss of bowel control has really affected my life and confidence. I’m embarrassed to even talk about this but it might help someone else. I started losing control of my bowels in the summer of 2016. Let me clarify losing control for me… I know when I’m going to have a BM but I have to be on a toilet in 45 seconds to a minute. It’s like when you have the flu with a bad case of diarrhea. Your running to the toilet alot except I can no longer run!

In that 45-60 second time period are also transfers to my scooter, scooting to the bathroom, transferring to a wooden stool the same height as my toilet and then transferring to the toilet seat. I also have to get out of my sweats and undies in that time period. Sometimes, I play it a little too close and have accidents. On the other hand many times I feel like a BM is coming but nothing happens. I sit on my toilet for 30 minutes and read. I get alot of false alarms like that. Loss of bowel control can really affect your confidence. Losing control of your bowels is definitely a pain in the rear, no pun intended. lol

Here’s another example. I have always been very independent and self sufficient. My wife is from Peru. She was going to go back for two weeks in November for a funeral. I hadn’t lived by myself for two weeks in 8 years. I was apprehensive to say the least. My main concerns were my bowels and a month earlier I’d fallen on my head transferring to my scooter from a small stool I used for BMs. Luckily, after the two weeks were over I didn’t have any bowel problems and I’d figured out a safer way to transfer to my scooter from the stool. I’m happy to say my confidence level was higher after the two weeks ended, too.