If you read my three part article series titled "The Scariest Day Of My Life" then you already know that I've got multiple sclerosis. MS is a disease of the central nervous system which is your brain and spinal cord. A person's body with MS is literally attacking itself. Multiple sclerosis leaves scarring on the myelin that is on your brain and spinal cord. Myelin is the fatty substance which acts as a protective sheath for messages coming from the brain to various body parts. It acts like the rubber around an electrical wire. When the myelin gets scarring on it the signals are interrupted from the brain to the various body parts. When this happens the body parts will not work properly. I've lost some things due to my MS but luckily I'm open to suggestions on ways to solve problems that arise from them. Below are four of my problems and how I've adjusted to them. For me my scarring seems to be on the part of my brain that controls the functions below my waist. My bowels, legs, bladder and penis are all affected by my multiple sclerosis. However, I've made the necessary adjustments for my legs, bladder and penis. My bowels are another story as I try to get on a regular schedule.
My bowels have seemed to get worse in the past year. I'm now drinking more water and eating more fiber. I've had bowel movements in my underwear since about 1992. It only happened every 6 months or so. But it still leaves me feeling like a baby dumping in his diaper. It's very embarrassing for me but I guess I have a good excuse. Back in the 90's it led me to some anxiety and panic attacks which I still suffer periodically from today. When I'd have a movement in my shorts in the 90's I wasn't sure if it was anxiety or my sphincter muscle not working correctly. However, now I know it's my MS and the nerves that control the sphincter muscle in my butt. I've also learned that it's easier to put on a pair of Depends underwear. That eliminates a lot of stress and anxiousness on my part.
As far as my legs go my MS has taken my walking in the past 10 months. I can still stumble around my apartment but it's so much easier to use my walker or get on my scooter. As far as outdoors I just hop on my scooter and go! I think when you have an illness like mine you fight for everything you can hang on to. Eventually though, you give up a little and start accepting that you can't do the things you used to do! I don't mind riding my scooter and I used to tell people that walking was overrated anyway. lol However, I'm now rethinking that one, too. I've also noticed lately that legs are needed for other things, too. I can be sitting down reaching for something on the floor and lose my balance. Where I would normally move a foot to balance myself I now find that foot doesn't respond to what my brain is telling it to do. Sometimes I fall over and sometimes I catch myself in time. Somewhere in my six feet of body the signal gets interrupted and goes somewhere else. Where it goes I don't know!
To take care of my bladder problem I now catheter. I've been doing this since February of 2000. A self-catheter is 14 inches long and I put some KY jelly on it. Then it slides into my penis and it doesn't hurt at all. When the catheter reaches my bladder I start urinating. I've only had two bladder infections but one led me to the emergency room in Minneapolis. The other infection I caught in time and with some pills I was able to stay out of the emergency room. When I catheter I have to wash my hands before and after going. I also have to make sure my bathroom is kept clean. Any dirt, dust or germs that are tiny enough to make it into my bladder can cause a problem. I now know what to look for when I have the start of an infection. The first indication is this. I can urinate and after finishing it will feel like I have to go again. The second urination is usually about 3 drops of urine. But it feels like you have to really go. The other feeling I have is in my penis and lower abdomen. It's just a tingling feeling for lack of a better word. Now when I sense an infection coming on I start taking Ciprofloxacin pills. I take 2 pills per day for a week and it clears up the infection. That saves me a lot of time and money going into the emergency room.
That last way my MS affects me is in achieving erections. I can no longer achieve an erection on my own. This has been solved by the invention of Viagra in roughly 1998. All I'll say is Viagra works very well for me. I didn't know this fun fact and I'm sure most people don't. There are two nerves which control a man's penis and erections. Please don't quote me on this because it has been many years since it was explained to me. The first nerve that controls erections is called the sympathetic nerve. This is when a man is awake and aroused. I think that's a funny name because that nerve is certainly not too sympathetic. lol The other nerve is simply called the unsympathetic nerve and controls a man's penis when he is sleeping or unconscious. There are many times when I wake up in the morning with an erection but as soon as I fully wake up it disappears. This doesn't seem fair but neither does this disease.
However, I'm getting used to being a disabled person! I was diagnosed in 1991 so I've had plenty of time to get ready for my disabledness. If that's even a word? The problem for me is that I never thought I would get to my current condition! In the first 14 years I was considered to have relapsing remitting MS. I would have an exacerbation every 12-18 months where my symptoms would get worse. I could live with my MS being like that. I could still walk (sometimes with a cane), I had gotten used to using a catheter, my bowels were OK and my fatigue was manageable. My neurologist said I would always stay the way I was after five years from my diagnosis date. My fifth year was 1996. I was still walking well and working so I didn't think my MS was so bad. If I did have an exacerbation and I could tell it wasn't going away I could always go in and have a steroid treatment. I would go to the hospital for an hour a day for 3 days. Nurses would put steroids into my body intravenously with a needle. They usually found a vein on the top of one of my hands to get the steroids in me. The steroids would speed up everything in my body including the exacerbation. After three days of the steroid treatments my walking would be better, my blurry eyes would be cleared up and no more tingling! It was like a miracle drug! My doctor told me though that steroids are hard on the body so doctors don't like prescribing them to patients too much.
When I moved to the Fargo, ND area permanently in September of 2003 I got a new neurologist. After a year and a couple of examinations he said that my MS should be considered secondary progressive. This is just like progressive but instead of becoming debilitated in one year it might take 20 years. I started having more problems with my mobility in year fifteen. I now ride my scooter outdoors all the time and indoors I'm using a walker to get around my apartment. I live in a town of 1,800 people. I can easily get my scooter downtown which is only three blocks away. I can get into every store that I frequent. If I drive into Fargo all the stores there have automatic doors. I have a lift in the back of my van so I just load my scooter in the back and away I go! They make hand controls for vans now and I'm pretty sure Medicare would pay for them. Eventually, when my legs get too bad to drive my van I'll just get some hand controls so I can stay mobile.
I used to think that I wasn't much of a man because I had all these weird things happening to my body! I mean come on! After all, being only 48 and using diapers, catheters, scooters and Viagra has a way of making a guy feel not very manly. In the last six months I have changed that thinking. Now, I think this! I'm more of a man for all the crap I have to put up with on a daily basis. A weaker man would have already been broken!
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