MS Life

This is going to be a tough one for me. The reason why is that I know many of the people who have visited or plan on visiting the site and what’s up for discussion, is embarrassing for me. But I promised myself that I would be brutally honest with this site for everyone’s sake and so I will.

I went to bed, as usual, around 2:00 a.m. Sometime around 4:00 a.m. I woke up to find that I had lost control of my bladder. So I jumped out of my nightgown and went into the shower and had my usual crying bout. Rather than going back to bed, I got dressed and went down to my music room to console myself. That’s right, I am a musician/composer and I will talk about this at a later date.

I will tell you another recent incident which was more difficult to deal with because it was out in public. I went to a craft show on my own several weekends ago. I didn’t feel like I needed a restroom until I got out of the car in the parking lot. It was a cold and windy day. I stood there with my purse and keys in hand gauging how far I would have to walk to the entrance of the building. It was pretty far. Meanwhile, all these people were parking their cars and happily strolling towards the building. Several people in cars thought that I was leaving because I was just standing there and I had to wave them on. There were no disability parking spaces left; otherwise I would have been much closer to the building.

I considered getting back into the car and driving to the nearest fast food restaurant. I would lose the parking space but that is just the way it goes. As I was about to put my key into the door, I felt my bladder let lose. There was simply nothing I could do about it. It ran down onto my shoes and onto the ground around me. I quickly opened the door to my car to shield me from prying eyes, but by the time I did that I had voided all that there was.

I wasn’t sure what to do next. I didn’t want to get back into the car because I didn’t want to mess it up. Luckily I had a long sweater on that went past my knees and that didn’t get wet. It pretty much hid what had happened. I began to tear up because no one was with me so I couldn’t ask someone what they thought I should do. I stood there thinking about it and because I had driven over an hour to get to the show, the wanna-be tears in my eyes hesitated and then receded. Instead I became angry; angry that I had no control over my body.

Okay, so I say I am enabled by my disability, I thought. So do something! Make a decision. I decided that I was going in to the show. This was not going to stop me. Grabbing my walker, I walked around the parking lot to gauge if anyone noticed that I was wet. No one seemed to notice. I continued walking quite slowly from fatigue hoping that the windy cold air would dry me off a little. It did. At that point I headed toward the building and the restroom to try and clean myself up. When I got into the restroom there were too many people there to do anything about it. I did my best, lowered my sweater down and left the room. I proceeded into the show. No one noticed, but my usual chipper self was downtrodden and felt beaten. I looked at items halfheartedly. As the afternoon wore on and I became dry, I avoided getting too close to anyone. This was not easy to do with hundreds of people walking all around me. I did feel good that I had at least not turned around and gone home. I did not feel the need to go again and I avoided getting any beverages while there.

When fatigue overwhelmed me, I decided it was time to go. I had made some purchases including a gift for my husband since it was his birthday. Rearranging my purchases in the walker’s basket, I headed for the exit. Several hours had passed and I should have stopped in the restroom before leaving. I noticed the long line an opted out because I didn’t feel the need to go anyway. Big mistake, or perhaps not.

As I approached my car, once again and completely unexpectedly, my bladder emptied itself. I was near enough to the car that I could get there in a matter of seconds, which I did. This time the tears also emptied themselves from my eyes. A few people noticed but said nothing. I opened the door to the car and just stood there until it was over. At that point I was so tired and disgusted with it all, that I threw the purchases into my car along with the walker and decided to heck with it I’m getting in. It was even colder than when I first arrived.

I sat in my car and just cried my heart out. My cell phone beeped at me telling me that I had an email so I checked it out. It was a message from someone that I normally looked forward to hearing from. But when I opened it up and read it, I began to cry all over again. The message has nothing to do with this post so I won’t go into it. After a bit and still sitting in the parking lot, I became angry at this sense of loss of control over my body and now over this email and the author who was being unreasonably stupid.

I was seeing red and I was exhausted. I drove out of the parking lot with my wheels spinning. I realized that I needed to stop and get control of my emotions and there was only one way I could do that. I decided to stop, park, and make a phone call. I called the author of the email and lit into him with ferocity, unusual for me. He could not get a word in edge wise. The entire time I spoke, I cried. I was completely overwhelmed by my day. After hanging up and waiting for a period, I then drove home with my sopping wet shoes that I threw away when I walked in my house.

I’ve told you of two recent incidents. There are many more. I had problems with urgency, a need to go immediately where my bladder felt ridiculously full but upon voiding there was no reason for it. Along with that, urinary hesitancy, where when you feel a need to go but you can’t go at first. These problems occurred earlier in the disease and when evaluated by a Urologist, it was determined that I had a neurogenic bladder.

It started out as incontinence, continued on into the neurogenic bladder, and now these unpredictable episodes of loss of control altogether without any indication of needing to go. Most of us with MS suffer from one of the other urinary symptoms. Some of us suffer from all of them, such as me. Some people don’t void completely and often have urinary tract infections so they use self catheterization to help avoid this. This is one I’ve managed to avoid.

I was going to put this topic aside for a bit, but when it happened again this week and while still fresh in my mind, I thought it best to go ahead and just get it over with and put it down. It’s a struggle and makes it difficult when going out. The first thing you look for when going anywhere is the location of the nearest bathroom.

In my previous post, I wrote about how people often will comment about MS symptoms as though they are not so unusual because as we all age, many people do experience some degree of incontinence, such as when we laugh too hard. Our symptoms, on the other hand, are to the extreme. So when a person with MS explains to you their symptoms and you are thinking well I have that too, think again. Sure oftentimes the symptoms of someone with MS are indeed similar to what happens to all of us as we age, but with that understanding, take your symptoms and multiply them ten-fold and then add to it an inability to have any control over it whatsoever, perhaps then you will try not to make a person who has Multiple Sclerosis feel undermined and hurt because you are not quite understanding the degree of the symptoms. What we need is people who will listen with the understanding that MS is a disease and therefore, the symptoms, although familiar to one and all, must be much more severe. Perhaps then many people with MS will speak more about their disease in an effort to educate the general public.