This morning was tough, but tonight I am feeling brighter. I woke up, bleary eyed and nervous at half past six because today was the day they were taking my catheter out. Yes you did read that right; apparently here half past six is prime time for trying out whether someone has any level of bladder control.
When taking a catheter out, it is my understanding that the patient can have a little difficulty with bladder capacity and control, the former of which we knew would not be a problem for me due to a minor clamping episode that I will discuss in another post. But control was potentially an issue, and added to that was the uncertainty of how my nerves would react to being moved about during my operation.
Nerves don’t like being touched. This is something I have learned the hard way since this operation, and in my experience they appear to either fire off madly or shut off completely. It is a weird feeling having a nerve stop working; it is as though the muscle it controls never existed, as though you have no memory of ever being able to work it. And there is nothing you can do to get it back…there is nothing to build upon, you can only hope it spontaneously starts to work once again.
During my operation, a set of nerves on the right hand side of my body were removed, These nerves partially controlled a number of bodily functions, including bladder control. Luckily for me, the nerves on the left hand side of my body remained intact and since these are actually the dominant set in controlling these functions, my surgeons predicted I should retain control of this and a few other things. Unfortunately, they did not warn me that regaining control could take a while and I may need to relearn a few things, and so since waking up from this operation I have had a few shocks.
So yes, at half six I got a lovely injection in my butt, and then my catheter was removed. The nurse specialist was coming to see me about the whole weeing thing at half ten, which gave me four hours to stress about what would happen if I needed a whizz before then, which I knew I would since I am someone who likes to drink and pee a lot. When breakfast came round I, not really thinking it through, ordered Rice Krispies with lots of milk and then a coffee, a drink that made me need to pee straight away even before my op. I then lazed about, drunk a couple more cups of water, showered, washed my hair and came back to my bed, by which time it was about ten and I was busting for a wee. I went to the toilet and sat on the loo for a while , trying to pee, but I was unsuccessful and so I came back to my bed and decided I could hang on for just ten minutes more. It turns out I couldn’t, and five minutes later I wet myself.
At 21, this is not something you see yourself doing, and it really, really killed me. I had already felt as though this operation had stripped me of my dignity and in that moment, this was the final straw. The specialist nurse came, and all five nurses and myself traipsed to the toilet because I needed to learn how to manage this, and so I sat on the toilet blinking back tears as I learnt how to self catheterise.*
After I had a go, I had a shower to clean up and I cried. I was crying with anger and shame, mourning for the life I felt I had left behind and for everything little thing I felt I had lost. I wished briefly I had not had this operation, a wish that I can now see as appalling and ridiculous, and I allowed myself briefly, but still for too long, to be dragged down by the weight of self pity and hatred. I am not sure how long I was in that shower for or how I got up and out, dressed and back onto the ward but I did.
And after feeling sorry for myself for about an hour more, all the while continuing to knock back the water, I realised I really needed to pee again. I was not going to wait for the specialist nurse to return and risk peeing myself again, so I decided that I was going to do it myself. I armed myself with a plentiful supply of catheters, grabbed my crutches and practically ran to the loo, once again surprising myself with how fast I can move when a toilet is involved. At this point I was really pissed off with this whole thing, and I was determined to get it right. And I did; I self catheterised.
I can’t explain the relief that washed over me as I came to the realisation that I could do this. I felt as though I had got back a little bit of me, because I had put myself back in control. Suddenly it all clicked that this wasn’t a big deal; I owned this.
Since then, I have needed to self catheterise every time I pee. This sounds scary, but it really isn’t and, strangely, this is not something that bothers me at all. The idea that I may have to do this for the rest of my life isn’t a worrying one, because, really, all that has changed is that I do one extra little thing when I go to the toilet. And although tonight, after taking a very high quantity of drugs that make me drowsy, it took me such a long time to do that one extra little thing that another patient actually asked the nurse if I was okay, it doesn’t matter. Who cares if I take an extra five or ten (or twenty or thirty?!) minutes on the toilet each time? I certainly don’t and I won’t apologise for making anyone wait.
Self catheterising puts me in control. I decide when I need to go to the loo just like usual, and then all I do differently is self catheterise rather than play candy crush on the toilet. So although my progress through candy crush level soda swamp may be a little slower, that is all that is going to change. The only difficult thing is figuring out how to get my supply of eleven hundred catheters to Florida.
*I figured I should probably explain what self catheterising actually is because I know I wouldn’t have had a clue myself even just a week ago. Self catheterisation is defined by the Free Medical Dictionary as “a procedure performed by a patient to empty the bladder by inserting a catheter into the urethra”. The method is used by people who can hold their pee but can’t actually pee themselves. Basically the catheter works as a little straw that bypasses the pelvic floor muscles, which is useful for me since my nerves have turned off at the moment and that seems to mean my pelvic floor muscles refuse to relax.
I actually wrote most of this post a few days ago whilst I was still in Stanmore, however I was not able to finalise it until today. I felt it was still something I really wanted to publish since although self catheterising is not something that bothers me, it is an aspect of me that has changed. Hopefully talking about this will help others understand more about it, and normalise what is now just a small part of my life.