Sunday, July 22, 2012
Having as many outlets as possible for support, shared information, and ventation is essential for surviving difficult situations such as trauma, health issues and crisis, and other life altering events.
As a child, I only knew two others with an ostomy and those were family members who had ostomies for the same reason I did - FAP. It was bad enough to have severe chronic health issues and undergo life altering, self image assaulting procedures and experiences but it was also difficult feeling alone in my experiences as I didn't know anyone else my age or anyone beyond my family members with similar experiences, period.
My parents started attending a local ostomy support group for myself and theirselves as well, I was connected with a group for children with bowel and bladder diversions and my parents gave me great strength to endure. I survived those tough years in spite of bullying by classmates that didn't know anything nor cared to try to understand what I was going through.
As a young adult, I remained active in my local support group and became more active with the national ostomy association and maintained close relationships with others with similar experiences.
Even this blog is a therapeutic outlet for me. I work in the medical field with chronically ill persons and there are times that I want to share my experiences with my clients or coworkers, but I don't. Sometimes it is frustrating when my clients make statements such as "You don't know what it's like, you're healthy" just because I don't have the same disease as them and currently am the healthiest I have been since a child. I'm not there for my own therapy, so I keep the boundaries clear. But this blog allows me to speak about my experiences in another outlet. Plus, I'd like to write a book one day and this is also helpful for documentation.
After I started being bullied in 6th grade, I was filled with an intense hate and resentment not only toward those bullying me but also in regards to my health. For a few years I tried to cope on my own without much success. Through the support of others, I was able to start accepting myself and my health. It is very hard to mentally survive such traumas without adequate outlets. Through these outlets I survived it all and have gotten to meet and form incredible relationships with many amazing people. I am a much healthier person, physically and mentally because of these outlets.
What are your outlets and how have they changed your life?
Thursday, July 12, 2012
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.