‘You’re a gender reassignment patient’
I woke up in the middle of the night last night with all the urgency of a fire alarm. My personal sprinkler system was at considerable risk of going off under the bedcovers and I needed to move fast to get things under control. I got to the toilet, felt all the indicative burn of a urinary wildfire and saw the liquid-suspended clouds of smoke, all of which told my sleep-slowed brain that I was likely combating a urinary tract infection.
I use intermittent self-catheterisation to pee. This involves quite literally tapping the keg of my bladder manually using sleek little disposable catheters the NHS mercifully provides. When I started catheterising, the NHS offered catheters that came in individual pink plastic cases that could be mistaken for vapes at a first glance, or apparently disposable syringes, for which a friend told me they had mistaken them. But after the NHS worked to reduce expenses they largely replaced them with smaller catheters sitting in their own little transparent plastic and paper containers. These things are clearly little medical devices.
My old catheters were prelubricated, and I was trained explicitly not to let the interior of these containers, the catheters themselves, touch anything other than their intended target. If they touched anything else by accident on their way to their destination they needed to be destroyed and replaced with a new one.
The new catheters need to be run under a cold tap before use.
Intermittent catheterisation generally risks infection. Some studies put the rates of UTIs in folks who intermittently self-catheterise at over twice per year on average. The catheter is less like the secret service smoothly and efficiently infiltrating and exfiltrating their charge from a hidden destination and more like an enthusiastic bus driver, stopping off to pick up bacterial passengers and happily carting them into MI5 central command.
I am so very careful with catheterisation. Even with numb hands and an intention tremor I have mastered this skill. I complete my task with surgical precision, sterilising my hands thoroughly beforehand every time, getting everything ready one-handed, not even risking the right hand touching anything but the catheter after being washed, then maneuvering with all the deftness of a yoga instructor to hit the target with Hawkeye levels of precision.
But I still got an infection.
I called my doctor’s office early the morning after I realised what was going on. My call was picked up quickly by a very friendly and enthusiastic AI whom we’ll call Friday.
Friday asks me about what’s going on with surprisingly effective if superficial empathic concern.
I tell her about the symptoms, the context of self-catheterisation, about my immunosuppression.
Friday tells me that my pharmacist can deal with this issue.
I tell Friday that I doubt it.
Friday enthusiastically tells me that I’m right and promptly hangs up on me.
So I go to the pharmacist. My pharmacist is a truly lovely man who has what can only generously be described as an office, into which I can very barely squeeze the Rocinante. He asks questions and I tell him all the relevant information. I mention that I intermittently self-catheterise and he tells me that this isn’t something he can manage at the pharmacy. He turns his laptop to face me, showing a large banner at the top of the screen: ‘urgent escalation’.
He’s amazing and he sends me immediately to the surgery, referring me over for someone to see fairly quickly.
I get called in almost instantly, and I am always so incredibly impressed and grateful for the NHS when something genuinely urgent needs addressing.
The nurse practitioner who sees me is wonderful, asks the right questions, and quickly recognises that we need antibiotics given that this is likely a UTI complicated by intermittent self-catheterisation.
But then she looks at me with some consternation, awkwardness perhaps.
She takes a moment for what looks like an internal run-up:
‘You’re a gender reassignment patient’
I get visibly nervous. I really don’t like people knowing this. I have been a woman in this world outwardly, visibly, for far more of my adult life than I ever appeared as a man. People knowing this, raising it, reminds me suddenly and sharply of what makes me different to other women, and I don’t like that feeling.
I stumble for a beat: ‘Yes?’
She explains: ‘Well the medications work differently on men and women…’
I hesitate: ‘riiiiiight…’ implicitly wondering where this line of questioning is going.
She asks pointedly: ‘Do you have male genitalia?’
I’m a little startled by the question. I know the question is relevant and reasonable, but I cannot remember ever being asked it before, and I have no chambered quippy retort to hide behind. So I just shake my head gently.
She says something vague about a shorter urethra and that this is relevant to which drugs we choose. I tell her that I don’t mind the question, and I don’t, but I do feel weird. I think we both feel weird.
I go get my antibiotics, thank the nurse profusely, and wheel my ass home. The journey to recovery is complicated by MS, and the symptoms and fatigue worsen considerably for some time while I clear the infection.
Infections aren’t fun for anyone. When the MS gets temporarily worse because of one, it’s hard not to panic. I feel the numbness worsen, my right hand weaken so that I need two hands to drink from a cup, my legs get wobblier and it’s harder to stand for long periods, my vision blurs, and my bladder control suddenly goes on holiday to the Cayman Islands. And I get one of my favourite little windows into a more disabled future. I know that this future is coming, that worsening disability is essentially the definition of a degenerative disease, and that this becomes inevitable while the disease remains incurable. It just isn’t supposed to happen now, not yet.
And I know that I don’t get any say in when it comes for me, or how, or how bad things get. But I’m trying really hard to give myself the very best chance of survival and sometimes I can trick myself into thinking that I’ve got this thing under control, that I’ve found a way to keep it at bay, that if I just keep doing mindfulness, and working out every day, and eating right, and catheterising perfectly, that I might just be able to keep my enemy behind our shield wall forever.
Maybe not forever. Maybe I can’t hope for that. But maybe I can still hope for a little longer. Overcome the infection, get back into the Rocinante, get back into the world.