Thursday, July 12, 2012
A Plan for a Plan
Planning for an activity away from home and specifically in a location you're not sure about the access to restrooms, is tiring and difficult at times. Yet, I never really thought about my thinking about that.
For those living with bowel and bladder disorders, this is a huge concern. I feel as though my life revolves a toilet. What a disgusting thing for my life to revolve around.
From small to big plans, that toilet is forever beckoning. For instance:
Every outing I want to go on, every activity I want to do, my immediate thought is restroom access.
For the 4th of July, my family and I went to a local park to enjoy an evening of music and fireworks. So all day I watched my food intake, packed up my porta-potty survival kit, and went to the restroom several times right before leaving the house. Then upon arriving, again I tried to limit my food and fluid intake and resist the need to use the restroom for as long as I could. I enjoyed my evening but at every turn, that toilet crept into my thoughts.
My husband and I will be purchasing raw land to build on in a few years. I'm very excited about this new adventure. I'm even looking forward to maintaining the property until we are ready to build, so I'm planning my mowing trips so that I can keep it under control for when we do build and my thoughts stop dead in their tracks and I begin to worry about being able to mow when there won't be any restrooms easily accessible due to location. Again that toilet is calling!
I traveled to Europe with my family a few years ago (and would like to again in the future) and restroom access was a giant concern and issue! Some places wouldn't allow you to use restrooms, some activities couldn't stop for a bathroom break for hours, some activities I couldn't even do because of bowel issues. That damn toilet!
So what do we do?
Sit at home, spending all our time with that infuriating yet so necessary and ingenious invention or do we go out, take the risk and enjoy what we can?
Because the truth is, as much as it sucks and sometimes hurts....if we let it stop us from doing at least part of what we want, then it will take complete control of our lives and we'll spiral to an abyss. And an abyss is very hard to climb out of, trust me.
It's like with any illness, we have to accommodate it. Some things we're going to have to change, but we don't have to change everything. So instead of getting to mow until it's done, I'll have to mow for a while and take a 20 minute drive for a restroom break before I really need one.
I can still travel but I'll need to plan on needing restroom access, know when I should take a break before I need the break, and do the activities I can without fretting about it.
But if I plan for that, then I can still enjoy and complete my other plans. And so can you.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
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