After months of trying to find the perfect solution to my bladder issues, I have conclusively determined that…there isn’t one. I suppose that is probably obvious because I’d be rich and famous right now if I had discovered the solution to bladder control after a spinal cord injury. Alas, here I sit, not rich, not famous, and still possessing a bladder that endeavours to rule my life. But I promise you it’s not as dire as it sounds. My bladder may still hold power over me, however I trust it more than I once did and we are slowly becoming friends again. Well, actually, Botox is my true friend. I’m just kind to my bladder with hopes it will be kind to me. Maybe it understands reciprocity?
If you saw my first post on bladder control, you would have read that I had just recently
tried Botox for the first time. It has now been about three months and Botox has definitely made a positive difference. There is much less unexpected leaking in my life and I can trust that my bladder can successfully hold a certain amount of fluid (and won’t leak) overnight. I’m very careful to do laundry (and other tasks that require me to bend to the floor) only when I have recently used the washroom – pressure on a full bladder just causes unwanted problems. I would say most times that I do leak (which is maybe 1-2 times a week) are when I’m having to bend down to the floor. I’m
either helping my daughter get dressed, picking up toys or picking up one of the other million things that the children leave in the path of my wheelchair.
I still watch the clock closely. I plan my day around what time I need to catheter and where I will be when that time comes around. I check and double check that I have enough supplies with me when I leave the house. What if we spontaneously decide to make another stop while we are out but we can’t because Mommy ran out of catheters? I would be nobody’s favourite person in that scenario (unless of course that spontaneous stop was the grocery store). But my point is, that even though the entire process of voiding my bladder has become more routine and predictable, it still takes a lot of time, brain space, planning and supplies.
The one piece of equipment that I recently decided I didn’t want to depend on anymore was a mirror. When I first started to learn how to self-catheter I couldn’t imagine ever doing it without a mirror. In the beginning, I couldn’t find my urethra with a big mirror, flashlight and someone literally pointing at it; I was hopeless and brought to tears on numerous occasions. It eventually became obvious and I could find it easily. Take the mirror away though and it takes the Sam Hunt lyric “I know every curve like the back of my hand” to an entirely different and far less sexy level. However, it also means I can remove the bulky mirror from my purse and that I can catheter in the dark now if I have to…so that’s something.
However, you have to remember that I have a two-year-old daughter. Anyone who has children knows that they are curious little creatures; every mom I have ever met knows what it is like to have company in the washroom. My daughter wandered in the other day and started asking me why I have to touch my body like I do. Her questions are easily answered at this point but I’ve decided that the poor girl will be confused for many years to come as she grows up in a house full of catheters and penises. It’s a strange world little one and this is just the beginning. Although maybe our three-ways-of-peeing household will make all of my kids more tolerant of differences in life…I’m looking for a silver lining, just go with it.
Whether or not it makes them more tolerant, it has forced them to be more patient. No longer does a public washroom trip take just a couple of minutes. They have learned to wait for Mommy on her trips to the bathroom, which usually take 6 to 10 minutes. I can’t say I ever enjoyed using a public restroom, but it is an entirely different world now that I’m in a chair.
For many months I would plan my life so that I could be home as much as possible when it was time to catheter (so every 3 hours). If we realized that we would be out of the house when I needed a bathroom, we would have to call and make sure there would be accessible washrooms that my husband could come into with me, as I still needed his help. Thankfully I can manage a public bathroom independently now (oh the things that excite me). However sometimes the experience is not a smooth one. I’m still reeling from one such adventure…
Just over a month ago I went into a busy airport restroom. My VIP (very important paraplegic) stall was in the corner but in a high traffic area across from the bank of sinks. I went in and started to get organized – transfer on to the toilet, get my supplies out of my purse (wipes, hand sanitizer, catheter, mirror)
and then wiggle my pants down. Just as I finished that last step, the door in the stall beside me slammed shut and mine opened. It only opened up a crack (the lock was clearly not working properly) and I sat there with my pants around my ankles trying to decide what to do.
The door may as well have been a mile away from me; I wasn’t about to just reach over from the toilet and hold it shut. Also, two hands are necessary when using a catheter. At first I thought I could just finish quickly. As soon as the thought entered my brain, a lovely middle-aged lady tried to come in. She was very embarrassed and offered to hold the door shut for me. I told her not to worry as I shoved all of my supplied back in my purse and transferred back onto my wheelchair – pants still around my ankles. I wheeled back to the door and locked it…with extra force this time.
I contemplated going to find another stall but the effort of getting my pants up and then down and then back up again seemed just too much. The idea of finding the other stall with my pants around my ankles was tempting but not going to happen.
So with the door locked (again) I was trying to move fast. I transferred to the toilet (again) and pulled my supplies out (again). At that moment, the door opened…again! Now I was hot and flustered and ready to cry tears that were either out of anger, frustration or embarrassment – I’m still not quite sure. Regardless, I didn’t cry and managed to repeat the process (again). Thankfully that was the final obstacle but it took my a few days to be able to laugh about the event and how ridiculous it all was.
Writing all of this down makes me miss simpler times. I miss the times when I could just go pee. People talk a lot about spinal cord injury cures and what the ‘next big thing’ is research wise. Technology is amazing. A cure would be amazing. But, honestly, improvements alone would be amazing too. One of which would be the ability to pee without catheters and without a schedule. Until then, I will continue to get Botox and live my life in 3 to 4 hour segments. I will also continue to leak and attempt to keep the expletives at bay when I have discovered that my bladder betrayed our friendship yet again. And I will just keep living as best I can without bladder control. Fortunately, I have – maybe – figured out the whole world of bladder management.
Hi Codi, from one para to another, this post definately strikes a cord. Using catheters and living with bladder issues kept me home for about 8 years. I know every injury is different but I’m going to share what I did. I started sitting on the toilet & pushing to empty out my bladder, then I would use a catheter to empty out completely. It wasn’t easy, there were many accidents along the way but eventually I stopped using a catheter. I still have catheters at home just in case I ever need one, but its been about 12 years that I’ve been catheter free! I hope this helps and thanks for being so candid with your life.
Wow that’s amazing! Is your injury complete?
I’m french para, my english sucks. I utilised google trad to understand your article and a little bit to write ^^.
Thanks a lot to write the reality . I have medical treatment for my bladder. I think it is more difficult to live with this bladder than without my legs.
See you later here or on your instagram.
We need more of this! Thanks for sharing. The condition of bladder and bowel problems needs to be understood. We need to shed the shame and stand proud.
[…] control which was essentially useless. Botox has worked so much better (as I detailed here and here in my posts on bladder control). There have been pills to try and regulate bowel function and […]
This was the best post ever. I have been dealing with so many freaking bladder issues and will have botox next month. Good grief wish me luck!
[…] and frustrating. Eventually I discovered Botox which I’ve talked about in detail here and here. But even that’s not perfect and my bladder still acts up if an infection is on the horizon or […]
[…] Check out the next post in this series “The Pursuit of Bladder Control – The Saga Continues” […]