I could tell that she really likes her job. The thing about this particular shopping trip is that I have no idea what I’m doing. I don’t know exactly what I should be looking for or what would fit me, I don’t even know the sizes.
The lady in the store wasn’t talking about a silk scarf or an accessory for a new dress. No, she was talking about a catheter. A disposable catheter. I had just come home from the hospital after my third operation for a disc prolapse. My first op was in 2011, and the other two occurred in 2017. After the last operation I wasn’t able to empty my bladder properly and the solution was to catheterize.
The stitches in my back tightened a little and the beads of sweat on my forehead weren’t just because I was in pain. This was something new and I felt insecure about it.
At the hospital I was introduced to this therapy – catheterization (CIC) – and it quickly became apparent that the staff at the neurological ward didn’t have much experience instructing patients in how to perform self-catheterization.
A nurse came to my room – she had brochures, links to YouTube videos, a mirror and catheters with her. She sat down to explain the process and after that she said “I’m going to let you have some time alone now. I’ll leave this mirror here, so you can get a little more familiar with how things look 'down there', if you dare to look!”
Down there? I didn’t know what to say. I felt even more nervous than before because she made it feel like it was all very unpleasant. Did I have a choice if I didn’t “dare to look down there”? Not really. She left the room and I lay in the bed with lots of unanswered questions about self-catheterization buzzing in my mind.
Luckily for me I live with a wheelchair user who uses catheters – Kissinger Deng. At our house, the catheters have their own place in the bathroom, and I knew that it didn’t cause any problems in his life, so I felt reassured that it wouldn't cause any for me either. But what about those who have no prior knowledge of self-catheterization? The guidance I received on the ward was woefully inadequate and raised more questions than it answered.
I already knew the importance of good hygiene and that, even if it feels a bit challenging at first, it will get better. What made it a whole lot easier for me was that I didn’t have to explain catheterization to my boyfriend as he already knows all there is to know about it. But it would have been okay anyway. I’m open about it with my family and friends too. For me it’s important to always be open about these sorts of things. I believe that it leads to less awkwardness when people know. And by sharing my story I hope that it removes the taboo around the matter.
Okay – back to my shopping trip. The lady at the pharmacy gives me a whole load of choices. At the hospital they just told me to figure out my “size” and choose what I felt comfortable with. I was just so confused. My size? What on earth are they talking about and how am I supposed to know, or figure it out? How can they expect me to know what's best for me?
The pharmacy lady asks me this exact thing: “Which size are you and which brand to you prefer?” She could see the confusion in my eyes. It seemed like the most natural question for her to ask, but as I wasn’t able to answer her, she began to explain. She explained about different brands, the latest products on the market and the most common sizes. She advised me that I could start with the most common choice and then try out a few different types to find out what I was most comfortable with. I received a bag of catheters with a range of sizes, types and more brochures. I was relieved to go home and start trying everything out.
It’s been a few months now and I have more experience. I have catheters in my lockers at school, in my handbag and in my gym bag. I make sure to have the equipment I need so that I can avoid situations where I have to use a catheter without clean hands or without being able to clean properly. As I’m quite new to this game I want to share a few tips with others who might be new to all of this too.
I'm no longer stressed about using catheters. It feels quite natural and I have found routines that work for me. I spent a lot of time reading up about it and made sure all my questions were answered. That helped me feel much more secure and safe. The best part of all this is that last time I was at the pharmacy to order new catheters, I could answer the question I knew nothing about the first time; now I know which size I am!
Thank you for reading!
Frida