Wednesday, April 22, 2009

My biggest issue with MS: Incontinence

Usually, my biggest complaint here is about pain or neurological symptoms, because those have had the greatest effect on my life. Well, that's not true. I write about those symptoms because I can talk freely and without any embarrassment. However, my most difficult symptom is incontinence. It was actually the sudden loss of bladder control that sent me running back to my neurologist. A healthy 24-year old woman does not lose control of her bladder. Thankfully Dr. Friedberg agreed.

And through discussion with other MS sufferers, it's a pretty common symptom. Yet no one talks about it publicly and few wear adult diapers to protect against accidents. For example, I attend a monthly group for SF East Bay lesbians with MS (yes, there are groups for everyone!). At my first meeting last month, one of the women there mentioned that she finally went out and bought a pack of diapers. Although she appeared healthy (without cane or other visible symptoms), she began to tell the small group about her recent troubles. Like all the women there, she can hold her urine for under a minute before she begins to drip, trickle, or have a full emptying of her bladder. She typically uses sanitary pads designed for menstruation when she leaves home, but we agreed that they provide no protection. After three straight days of accidents, she finally broke down and got the diapers. Usually she wears them to bed, if she goes on a long trip, or to a fair or show.

What I found interesting about this entire conversation was the way her voice dropped when she talked about wearing them. Although the entire group talked openly about having accidents, the diaper portion of the conversation was whispered. We would rather risk accidents than wear a diaper.

No one wants to wear diapers. I'm sure I wasn't the only kid who swore they would die before getting back into diapers. Though, I could never expect to experience this at my age or begin to comprehend what being incontinent means. In my case, from the moment I get the urge to go, I have max 2 minutes to empty my bladder. Sometimes I get the urge and I have 30 seconds. And that's not 30 seconds to make my way to the restroom, that's 30 seconds to get to the restroom and get undressed. This means, that if I'm at work and the urge comes on, I have to go immediately. My bladder would not wait for me to finish a phone call or write an appointment card, when time's up, it's up. First it starts out with a drip/trickle and if I don't go soon, then the flood gates open.

My story is not unique. All of the other women describe it the same way. Yet we take our chances. When we go some place new, we immediately find the restroom and plan our activities around it. Even when I'm home, I make sure I drink during times when I'll be able to get to the restroom. The big problems occur at night. While we sleep, our legs go numb or get weaker, so when the urge to go comes on, we have to fight our legs to get us to the restroom. Even if you wake up and get out of bed in time, there's a good chance you'll drip to the restroom. For me, believe it or not, it is much more demoralizing to stand in your own restroom, a foot from the toilet, soaking wet, than to have it happen in a public place. I don't know why.

What I can tell you is that I've been thinking about trying diapers. Even though I take a pill designed for bladder control, I still have accidents. Part of the reason is that I often forget to take the pill. It only last for 3-4 hours, so even if I take it in the morning, I forget to take it again. Also, it makes me incredibly thirsty and even though I can hold my urine for up to 30 minutes, I'm drinking so much that I have to go more frequently and my legs don't like that. I will likely only wear them as my group member does, but that will mean less middle of the night anxiety. And less anxiety is one of my life goals.

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