This post has taken me so long to sit down and write. I have been avoiding it for months. I’m tackling it a few paragraphs at a time, separated by several days and interspersed with wine/vodka/chocolate. It’s an episode in my life I’d really rather forget – nothing short of traumatic.
It’s autumn 2011. At my yearly appointment with the neurologist, I mentioned I was maybe having a teeny tiny problem with needing to wee more often than I should. Maybe. Perhaps. It wasn’t a big deal.
I didn’t mention that my long-term relationship with my soulmate (we’d been together for 16 years) had been falling apart for the past year and a half and was basically over, nor that I’d been carrying a bowling ball of stress and anxiety in the pit of my belly all this time that made me very emotionally unstable. (I’d just taken myself away for a week to get away from things. I went to Nice, where I did a lot of sitting on the promenade and staring at the wide expanse of glittering Mediterranean Sea.)
It had all started when I fell over in March the year before*. I was walking to the station, tripped over my own feet, bashed my lip a bit on the pavement but no big deal. A simple fall. People do it every day. But somehow it was a catalyst that brought about an inability to walk – I realise now I injured my left hip, which was already compensating for my right leg not really working – emotional vulnerability and neediness, and the beginning of the end of things with me and him. And needing to go to the loo more often.
It sparked the collapse of my life as I had built it.
So all this was going on and my body was expressing my emotional state. When you’re in it, it’s hard to see that. But someone else might have. The medical practioners I saw at the time didn’t even bother to ask about what was happening in my life, to find out the context surrounding the physical symptoms. I was an MS patient with ‘bladder’ trouble – just another symptom to tick off.
First, I see a couple of MS nurses. They’d ask me to keep a record of fluids in/fluids out, but aren’t bothered about seeing it when I go for the appointment with them. They do an ultrasound scan of my bladder before and after going to the toilet, to see if I empty properly.
But it’s Monday morning and a time when I also need to void my bowels. Two nurses are waiting for me, so I don’t want to be ages, nor have a poo in the hospital bathroom, so it’s for sure a quick wee.
So, I don’t empty properly. The scan shows there’s still some urine in my bladder after I’ve been to the loo (though I believe it was on the borderline of the amount it’s OK to retain).
I definitely had a problem. My voiding reflexes were all screwed up. But their course of action? I need to use a catheter twice a day, a silicon pipe that would drain the urine manually. It’s called Intermittent Self-Catheterisation (ISC). I burst into tears. In response, the nurse is matronly and patronising: well, I wouldn’t want to get a kidney infection, now would I?
I don’t know why they went straight for the most invasive form of intervention. You’d think perhaps a bit of pelvic muscle rehab might have been an idea. But anyway…
So they refer me to the continence service with a recommendation for ISC. There, I meet nurse Shirley, a woman whose therapist seems to have told her to count to ten before answering any question. Again the ultrasound scans, again the Monday morning situation, and she sets a time to come to my home to show me how to do it.
It’s not easy inserting a lubricated, sterile, floppy silicone tube into the tiny opening of the female urethra, which is anatomically hidden away to avoid exactly this kind of intrusion. When Shirley shows me how, I’m lying on my bed with towel and bowl, naked from the waist down. Over the next few weeks I do it twice a day as instructed, sometimes sitting in the bath, sometimes perched over the toilet, mostly crying with frustration and stress.
You can’t touch the tip of the catheter because you don’t want to introduce bacteria into the bladder, because then (as I was to discover) you get a urinary infection. You can’t see or feel the hole you’re aiming for, so if you miss it the tube just slides along the skin, again risking contamination. As soon as you finally DO have it in and push it along the 4cm into the bladder, liquid will come out, so you need to be over some receptacle to collect the piss.
It was a nightmare and added to my stress. It wasn’t even the right solution in the first place. It made the problem worse not better. But still I continued to do it for NINE MONTHS!!!! I guess because they said I had to, and my state of mind was too vulnerable to question it.
I had the first uncontrollable pissing episode about 3 months in – completely wet myself one lunchtime coming back from the shop to my office. A month or two later – during which me and him broke up, my dad told me he was dying, and I moved into a flat on my own – I had the first infection. Antibiotics cleared this up in a weekend, but not long after I was dealing with another (much worse) infection.
In the meantime, I was also doing my best to support my parents as Dad went for various tests, and the diagnosis and prognosis kept changing. He was very seriously, probably terminally ill. Dealing with my own health issues got rather overshadowed.
At the beginning of August 2012 I took myself away for a few days to the Isle of Wight. But I was just… in pieces. My lower pelvis hurt, I kept pissing myself, I was weak, unable to walk well, and I was an emotional wreck trying to hold it together. I called my doctor where I’d left a sample for testing and got some antibiotics, which my ex kindly picked up for me as I made my way home, missing my grandmother’s 90th birthday tea.
After about four rounds of different antibiotics, I finally got rid of that infection and finally decided to stop doing the fucking catheters. I was probably re-infecting myself every day. And it turned out I wasn’t retaining enough wee to justify the need for the procedure anyway! Super!
Some months later, still having problems (worse ones than before this whole thing started), I was referred to a urologist. She called my two (different bacteria) catheter-caused infections ‘recurrent UTIs’ and wanted to stick a camera in my bladder. I refused. It was the first time I’d ever defied a doctor. It was very upsetting.
Nine years later and I’m still dealing with the physical effects of this time, though I have learned the problem comes from that fall in 2010: something to do with an irritated pudendal nerve, a hypertonic (too tight) pelvic floor and fungal overgrowth/lymph retention. It’s finally healing now.
What’s more, I am forever changed mentally by the experience. The incompetence of the people supposedly looking after me absolutely destroyed my trust in medical practitioners. Being incontinent destroyed my self-confidence (nothing like pissing problems to make you feel like an old woman). The episode was the final straw in me being so damn compliant with the health system and was the beginning of taking back control of my body.
So I overcame the (bacterial) infections but still had the problems, and Dad got more ill and then died. It all hit me very profoundly and the next year I had a revelation that the interferon was doing more than I thought…
*Another significant incident that didn’t seem like much at the time (see also dislocated ankle and ‘inner ear virus’).