A guest blog by member Shannon
MS gives me a lot to write about, which is a wonderful coping mechanism when certain aspects of the disease are difficult to talk about. Initially, I wrote about stress and the heavy toll it’s played in my life, and on my body, in the last month. But, as often happens with this disease, I was interrupted. My body said unexpectedly, “No, this is the way we’re gonna do things.”
And just as suddenly, my writing inspiration is changed, because although my temporary season of severe stress was very real and terrible, there is a part of this disease I must expose for the sake of anyone who may suffer in the way I do. Possibly, I’ve waited years too many to share. I’ve written multiple accounts to describe my suffering which have never been read; kept private to spare myself additional pain and embarrassment. I tucked them away, in the same way I attempt to shamefully tuck away this symptom and pretend it isn’t there. Until the next time.
I received an email recently from PatientsLikeMe which prompted me to share the details of likely, the most humiliating part of MS. Incontinence. The word itself is uncomfortable. Many can’t even say it right, and most people aren’t totally sure what it means. Having worked in retirement homes, it’s a familiar word to me, yet even I was unsure of its depth, assuming it meant, “a little bit of urine leakage, typically in the elderly when the bladder simply gets old and tired.” And then there’s my own personal definition.
A few months back when my kids got out of school for the summer, I decided to take advantage of the peaceful morning (not filled with making lunches and carpooling for the first time in nine months) and take my beautiful big-white-fluffy-dog, who we like to call our own personal pet bear, to a local preserve to practice using a mobility harness we bought her. If you know anything about me, you’d know this was overly optimistic and risky from the start as my walking range is quite small and as a rule, I don’t walk our dog ever. I reasoned that I would walk a very short distance to save my strength for the walk back. I hoped that the a harness and mobility handle would assist me enough to make this a successful morning stroll.
On my drive to the preserve, I realized that if I didn’t find a bathroom and attempt to empty my bladder, I might have a predicament at the preserve, since I didn’t know if there were any restrooms there. My preparation seemed flawless, this was going to be a great morning. But, when I arrived at the preserve there were no restrooms in sight.
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