All homage due to Salt ‘n Pepa, talking about pee probably isn’t as fun or interesting to most folks as talking about sex, but hey. I never claimed to write about fun topics, did I?

For those who don’t know already, I have what’s called a suprapubic catheter. For folks not in the know, I am unable to stand up. The catheter allows me to avoid getting on and off a sit-to-stand lift to pee a million times a day due  my neurogenic bladder. As with most things, this convenience comes with strange associations and for me, obsessions.

The pee in the bag haunts me. Is there enough? Is there too much? Is it the right color? Why do I have to empty the damn thing so often? Oh wait. That’s because of how much water I drink. But dry mouth and hydration needs mean I drink a lot of water each day. Again. Another obsession. I typically do at least 4-5 liters of water, Gatorade, or club soda a day. I do the Gatorade and club soda to help make sure I’m not depleting my sodium levels too much. I guess it’s because I can see how much urine I am passing. I mean it’s right there in a goddamn bag. Calling to me.

OCD man. It’s a killer. Another thing for which I must thank my MS. Yet another psychological diagnosis. I’m chock full of them these days.

But back to the pee.

I tell myself to stop obsessing about it. I tell myself to use other strategies for dry mouth (chewing gum, for example, which I loathe doing but am now forced to do). But nothing really does it for me. Nothing makes me want less water. I drank a ridiculous amount of water before MS – this isn’t a new thing for me. The habit never came with such bizarre potential dangers before – such as the week I spent in the ICU trying to get my sodium levels normalized. Non-rehab floors in hospitals are ridiculously ill-equipped to deal with disabled patients. I didn’t have a bowel movement the entire week I was in the joint. Poop in a bed pan?! I’m lucky I can poop in a goddamn bathroom.

My obsessions come from the fear that something terrible will happen if I stop paying attention to every little detail and every little symptom. For example, I’ve just stopped drinking water to manage how much pee I have to deal with for the rest of the day. What happened as a result was the tube on my pee bag suddenly filling up with urine which then immediately makes me feel like I have to shit. And now I’m here by myself so shitting isn’t really a possibility until my next caregiver gets here in half an hour. This is where the panic starts. What if there’s a disaster and I have to go to the bathroom before she gets here? What if so much pee keeps coming out I can’t keep up with it and I spend the rest of the afternoon in and out of the bathroom emptying the bag?

It’s exhausting living in this brain. The sprain it never stops trying to figure out all the things that can happen and how to prevent them. People tell me, “Just relax and let it be bethy. Stop trying so hard to control everything that’s uncontrollable. “

And I want to scream: DON’T YOU THINK I WOULD DO THAT IF I COULD?!?!

Intellectually I understand what I’m doing. I’m a smart woman. I’m trying to control the things that are controllable in my life and there’s so few that the ones that I can control such as how much urine goes into my bag based on how much water I drink become the things I focus on to help me redirect focus away from those things that I can’t control for example when my next caregiver will get here. I don’t know why the agency doesn’t get the caregivers here on time! I don’t know why there’s these times that I must be alone and have my brain just go into over-drive. But it happens almost every day.

What I hear repeatedly is, “We’re so busy Beth! We can hardly keep up with the daily tasks of running this business whether or not you have to be alone for half an hour is not as big a deal as you think it is. Some people aren’t covered at all and those are the things that we need to focus on. Leaving you alone for a short period of time is not a disaster. You are OK alone for short periods of time. Just focus on that.”

And that makes me want to scream again.

There are so many things that make me want to scream in my life right now that it’s hard to even begin to know where to recount them. For example, once my caregiver gets here, I will no longer be able to focus on writing this post because I’m dictating it out loud and I don’t want her hearing what I’m writing about. Typing is difficult when I get this tired at the end of the day. For me the end of the day starts at around 3:00 PM when I just frankly run out of gas. It’s just like my brain and my body need a break and they’re not going to get one until I get in my recliner chair once the evening begins around 6:00 PM. So, every day I have this block of time between 3:00 PM and 6:00 PM where my mind just races. It’s the absolute worst time for me to be alone. And it’s the time that I’m alone almost every single time. It’s funny to me that I used to love being alone and now it’s the worst thing I can think of. Well not funny in a “ha ha” way but more in a “that’s so fucking irritating” way.

I used to have these sessions once a week with a woman on Instagram who offers services as a disability mentor. I wish I never would have stopped having those sessions. I stopped because I need to pay for them, and I like to pay what I think her time is worth. I also know that she would take whatever money I’d be willing to give her to restart my sessions. Regardless, she used to say to me on a regular basis,” I’ve been disabled my entire life Beth and I still struggle with the reality of what this lack of control means in my life. You’ve been disabled comparatively for about 15 minutes after spending almost 50 years of your life as a “normal.” Of course you’re struggling! Give yourself the grace that you would give a dear friend. Allow yourself to struggle and stop beating yourself up for it. You’re just a baby! You’re just a baby disabled person! Of course, this is hard it’s going to take time until you feel comfortable dealing with the discomfort that comes with being disabled. You’re just a baby give yourself the love you would give a small child who needed your care, attention, and love.”

Do you think I do that?

Right. I do not.

I’m not sure I know how. Therapy helps? But therapy helps slowly. I’m impatient. I want someone to fix me now. Just fucking fix me!

I just realized something. This post isn’t about pee at all. It’s about the lack of control this disease imposes on my life. My pee output and how much water I drink things I can control. Of course I try to control them. I’m desperate to regain some independence and control over my life the way I used to when I was able to stand up. I rail against the fact that I can’t be independent. I fight it with everything I have. That’s probably why I’m so tired all the time. Fighting reality it’s a full-time job. Takes a lot of energy. That’s what this post is about. My unwillingness to accept my current reality.

But still, I want to know why someone can’t just fucking fix me already? I guess I’m stubborn.

That might be the understatement of the century! Amirite? SMDH.