IC Journey

Remember – normal is just the average of everyone else’s flaws

Posted in Uncategorized by LJ Johnson on April 11, 2010

When confronted with the word chronic, even when assured there are “good days and bad days,” it is a LONG journey to get to a point where you have that to any point of balance or organization. If you are someone who struggles as a people-pleaser, like me, it is even worse. The LAST person on your priority list is always you. Even when you know that you are hurting yourself to “do unto others,” you do it anyhow until the last few dregs of energy and stamina are left. Worse, for some reason, when you look up, instead of getting the required rest and empathy, you are met with the nearly impossible expectations you’ve created.

I’m not “there” yet, if you can’t tell by my first paragraph. For one, every time I have a good day I wonder if I should be pushing harder because I obviously haven’t hit my “limit” yet. Additionally, since the last thing I want is to have my illness effect my family, I always choose to make sure that things they are used to – laundry being finished, breakfast cooked and served to them, the house staying clean – that all those things are done first. My needs are often ignored or postponed in hopes of meeting my family’s.

Since interstitial cystitis, especially in its later stages, includes frustrating frequency (if I’m hydrated I’m in the bathroom about forty times a day), you end up choosing to either stay home all the time, or avoid fluids to go out (if I’ve avoided fluids long enough my frequency goes down to only twice an hour – that requires no blood pressure medication and only enough fluids to swallow pain medication). I’ve learned, with experience, that if you limit your fluid intake to a pint or less of water a day you have three days until every movement makes your legs charlie horse. I’ve been told no one should know that. With IC, well, you get creative.

When I was first diagnosed, and realized that I might NEVER get back to what everyone else considers normal (voiding 8 times or less per day, sleeping through the night without having to go, no pain), I announced I was on the journey to find my “new normal,” hoping that I would learn a balance that at least gave me quality time with my family and enough well-managed days to not feel like a shut-in. I’m accomplishing it, but not the right way, and now I struggle with the question of what I should really choose: a normal that takes care of me and reduces the quality of life for the rest of my family, or a mind-set which learns not to resent my family when they seem unaware of the toll it takes on my body when they want to spend the day fishing at the lake, or running around shopping or going to a special event.

Today I resented them SO much. I tried to beg off, but it was quietly ignored, and I ended up spending six hours drinking less than a half cup of water and eating nothing (the only thing that was there that was “safe” for me was the hamburgers if I skipped the bun) while I watched everyone drinking can after can of soda, beer, and bottles of water, eating hamburgers, hot dogs, s’mores, flavored potato chips and coleslaw. I know that the family needed the time together (extended family) and that my husband loves every time he gets to spend with his grown sons. I also know that allergy season had increased my pain significantly, I was dying of thirst and nowhere near adequate restroom facilities and the toilet paper that was in what restroom facilities there were happened to be filled with a wasp’s nest.

I spent much of the day honestly asking, “What about what I need?” I was blessed to spend some time later this evening with my son, talking about how much I love him, and hearing him tell me he knows it because of all I do for them. It made it kind of worth it. I honestly never liked fishing in the first place, though… and I don’t know if I want to ever go again at this point.

Perhaps my new normal should include access to restrooms with adequate toilet paper, adequate hydration when in the sun for extended periods, and the understanding of my family when I say, “I’d really rather not,” that I am NOT a mandatory participant?

In the end, normal is an average, not an absolute.


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