some things about interstitial cystitis, aka bladder pain syndrome

41bnyll9t2l-_sx258_bo1204203200_Since my diagnosis with IC (also known as Bladder Pain Syndrome (BPS) or even IC/BPS), I’ve learned some things, and I’m about to share reflections on them. These are private things–though not secret, I mean, I assume you know I go pee and poop, just like you–and so you may prefer not to read them or know them about me.  And that’s fine. I never thought I’d be 40-some years old, blogging about my bladder, any more than you ever thought you’d be reading some 40-something blathering on about pee.  So if you don’t want to read any further, it’s okay. No judgment.  If you do, then you have a link to click.

As you might expect, a disorder related to the bladder and urinary system is hard to talk about. It involves “down there” and “tinkle” and things nice people don’t discuss in public. It even involves periods and sex and poop (oh my!), which only compound the difficulty. It’s no wonder some people go undiagnosed for years – it takes a lot of courage just to mention it in passing with the doctor, much less to make an entire appointment to talk about it!

I’ve learned a lot about my diet, about what goes into the foods I eat. I started avoid acidic and trigger foods about 18 months ago when this was tentatively diagnosed, and given other chronic conditions I struggle with, I went low-histamine just after Christmas.  I have greater and lesser degrees of success sticking solidly to a low-histamine plan, and I haven’t looked systematically to identify specific food intolerances. I have felt generally healthier since making this change, and that’s a good thing on its own.

incontinenceAnd I’ve thought a lot about pee.  (Surprise!)  We don’t think much about these functions of our bodies, but they’re important. On a flare day, my visits to the ladies’ room get closer together. They will be 2 hours apart, then 1, then 45 minutes, then it feels like a constant need to go – it will be painful and spasmy, and there’s a sense that it will all be better if I can just go already.  Unfortunately, going doesn’t help. Going only makes the next time come sooner.  I can handle this when I’m at work… kind of… but I feel very conspicuous getting up to hit the loo so frequently, and bladder pain distracts and affects me very differently from any other type of pain I’ve had.

Then there’s the other side of the flare: first come the spasms, and then comes the release. Once my bladder is spasming badly enough, it will just let go. That’s right, just decide, “Fine – if you won’t just go, then I will just go for you!”  And there’s the warm rush directly into my extra-long, maximum-absorbency pad. Hopefully not all over my undies, and super-hopefully not all over the clothes that people can actually see.

This is one of those things we absolutely dread: wetting ourself (or worse, so thank God I don’t have anything bowelly!). We were tiny when we learned to use the toilet, and it was a big deal for a few years. You would be ashamed to have an “accident,” and you would be humiliated if it happened at school. Your potty performance (or your pants performance) was the main measuring-stick for whether you would get to visit a friend or go to an amusement park or generally do fun things.  Being able to use the toilet meant you didn’t have to be with your parents all the time – it meant you were self-sufficient, independent. It meant freedom.

Similarly, continence means freedom as we approach the end of our lives as well. It determines whether we can live on our own, what kind of “home” we might have to move into. We joke about adult diapers, and we think privately how humiliating and demeaning it would feel to have to wear one.  We don’t talk about it, except in jokes, and we try not to even think about it.

I’m in a flare right now.  It’s lasted a few weeks so far, and I don’t know how long it will last. Yesterday and today I worked from home–and am so thankful that I’m able to do so–so that I could be closer to the smallest room in the house for the trip after trip after trip to go pee. There are three towels, folded, atop my chair. One is usually sufficient when there’s a release, but I’d rather be prepared.  I skip pants. Honestly, I’d rather not end up going through three or four pairs of pants in a day. So I sit atop my 24 layers of towel, wearing a shirt and underpants, with my extra-long, maximum-absorbency pad. I drink water. OMG I drink so much water.  I go pee. When I go pee, I refill my water. And then I go pee, and I refill my water.  I eat bland foods, and whenever I realize that my pelvic muscles are tight and spasmy I relax them. If the pain is enough that I resort to the pyridium, I will often feel better. The problem is, the pyridium numbs things enough that I don’t even feel it when my bladder starts to release. I only know I’m wetting my pants because my pants feel wet.

You might imagine that this would be hell to cope with on the job. I’m very fortunate to work a desk job, where I can telecommute from time to time.  I try to maximize my time in the office, but that doesn’t always work out. I haven’t kept a change of pants at work. I only stock a couple of spare pads there. (Went through six yesterday. I think I’m on number four so far today.) I don’t have the cubicle closest to the hallway door, easiest for escaping to the ladies’. I do keep a folded-up blanket on my desk chair, and I have had days where I’ve carried it with me when I went to meetings. I don’t know how to say to my boss or my colleagues, “Okay, so today I’m on a flare, which means that I will need to go to the bathroom in… twelve more minutes. And then twenty minutes after that. And then one more time, before our meeting is over.”

It feels humiliating. Shameful. Demeaning.  All those words and all those feelings that swirl around our relationship with our elimination functions, our relationship with the toilet. Am I not a “big girl” any more?  Does it mean I’m not a “good girl” if I literally can’t hold it for another thirty seconds? Am I less worthy as a person?

Those seem like absurd questions, don’t they? And yet… and yet, I fear that they all have some “yes” to them. We all do. One of the things that makes us human–among many, many others–is our ability to control our bodies with our mind, our will. The implication is that when we lose this ability, we become somewhat less human.  We pity those who have to resort to adult diapers or appliances, and we are disgusted, and we are terrified.

I don’t pretend to know what it all means. I’m still figuring it all out. While I sit on my towel-covered chair without any pants, while I take three breaks during this blog post to take a wee, while I count and plan to make sure I have enough extra-long, maximum-absorbency pads by Oops-I-Crapped-My-Pants, I’m letting these things roll around in my brain. Maybe it will all make sense to me someday. Maybe not. Until then, I hope that you will occasionally think about this, too, that maybe your reflections may lighten the burden of another person who feels humiliated by their own body.

Peace be with you, my friend.

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