Wetting myself laughing
Generally my symptom profile has become fairly manageable. I catheterise to pee so I can empty fully regularly, and while I get bladder spasms I have the pelvic control of an olympic gymnast and I can fight the sudden urgency with matched resistance. My mobility is shaky, but I can walk up to a kilometre before I start stumbling like a dolphin attempting the three peaks challenge. My hands are numb, but I can tell when I’m holding my wife’s hand, or touching a key on the keyboard, or the tip of a disposable catheter, importantly. The vision in my right eye is like looking through frosted glass, but my lack of ability to process longer light wavelengths makes blues look rather vividly beautiful. My life is different, but with stability I have learned to accommodate my disability.
But, now, something has changed.
I got a urinary tract infection. Intermittent catheterisation flirts with that danger whenever I tap the keg. The urethra isn’t really designed for objects to be pushed into it, no matter how prelubricated they are.
After clearing the infection I found that my multiple sclerosis was somewhat louder, each symptom more present and harder to manage. My mobility remains now much weaker. I move around my flat like the Enterprise is being hit with photon torpedoes. My hands are numb like they’ve been sitting in ice water, and weaker like all of me has been sitting in ice water. Bringing a pint to my lips requires two hands. I can lift a drink just fine, but whenever I go to take a sip it’s as though I just deeply offended my right hand and it hurls the drink at me in protest.
But the bladder is the most troubling issue.
My bladder has two different problems both caused by lesions in my spinal cord. The first is difficulty emptying. The bladder starts to empty like a sprinter moving off the blocks as soon as they hear the starting gun. But after a few metres the sprinter stops running and puts their hands in the air celebrating victory. With some… encouragement I can push the sprinter to get going again, but they then start beaming after a few more steps thinking that this now must surely be the finish line.
Thankfully I have intermittent catheterisation, which I guess is like an exasperated coach pushing our sprinter all the way to the finish with a long broom.
The second problem is bladder spasms. Usually the bladder works like your car’s gas tank, though in reverse. The tank empties gradually and the urgency to refill builds commensurately. Sure, if you leave it late things can become urgent but a little planning and stopping regularly can allow you to easily keep the car on the road. But bladder spasms are like the car periodically pinging you an alarm that you have no fuel left, when you know you’ve half a tank in there. Worse, the car acts as though it really is empty and when it alerts you to its status, if you don’t promptly fill the tank, it’ll leave you on the side of the road even though it has plenty of fuel. The bladder fires an alarm every so often that the bladder is full, even when you know it has a lot of space left to offer, and if you don’t respond to that alarm by emptying its contents, the bladder will happily empty itself all over your legs.
I am generally strong enough to counter my bladder’s threat. I can resist the advance of my abdomen pushing warriors toward my urethra with the shield wall that is my pelvic floor. Generally this isn’t pleasant, and it usually isn’t super clear who is going to win, though in practice I frequently do. But when I’m too hot, or too strained, my control of everything below my belly button starts to slide away from me. What were soldiers bracing the gates against the oncoming horde suddenly become overworked actors threatening to strike, the gates are polystyrene, the battle is happening on a film set and the director is ready to yell ‘cut’ while my bladder doesn’t know the meaning of the word.
It happened this week at the hairdresser.
I arrived, and when I got out of the car the alarm sounded internally that the bladder was so full that it was existentially disturbing and that if I didn’t find somewhere to empty it was going to take the situation into its own hands. I got to the hairdresser, got to the toilet, and the alarm had gone from ‘reasonably urgent’ to ‘imminent catastrophe’. The door wouldn’t lock, and it took some jiggling to get into place, and that was all the time it took for the bladder to spasm and squirt a little stream before I’d found somewhere appropriate to land it.
Ugh. I hate this problem. It’s so deeply inconvenient to be wet at the start of your appointment, or to smell lightly of urine.
I took the time to clean myself up before heading out to see my hairdresser.
I have a meeting with my Urologist next month and I can’t wait. I’m browsing catheter options like a kid at a bike shop looking wistfully at ever larger numbers of gears, except I’m looking at how sharp these little cases look in my handbag. Sure, none of my catheters are really road-worthy, and the NHS keeps looking to downgrade me from carbon fibre frames to ones made of cardboard, duct tape, and a lot of imagination, but I still have some hope. There’s a big difference between a catheter you can pop open with one hand, and one you need to run under the tap before use.
It might sound like a pretty minor inconvenience needing to run something under a tap before use, given that there are always taps in bathrooms. But imagine for a moment you’re at the sink of a public toilet. You need to sterilise your hands before you do anything with the catheter. After you wash your hands the thumb and first two fingers of your right hand are in sterile mode, they shouldn’t touch anything else but the catheter handle itself, inside the catheter packaging. If you’ve got catheters you can pop open with the flick of a thumb, then you can carry the thing in a pocket to the stall, drop trou with one hand, pop it open with that same hand, and then go to work with your right. If your catheters need to be run under a tap you now have to open the floppy plastic case at the sink and fill the pouch with water. Now you need to get into the bathroom stall, but you can’t pocket the pouch, so you carry it in your left hand working hard not to cover yourself in water and lubricant while you lock the door, but now your left hand is in use and your right hand is sterile, so you have to find somewhere to place the catheter pouch without it risking falling or tipping water everywhere so you can get undressed. It is manageable most of the time, but there isn’t always a level surface to place a catheter onto, and all the while, all the time you’re taking, you’re trying to fight your bladder for dominance over the dryness of your clothing.
And that’s not the worst part. If you miss with that catheter, either because you’re too hot and your legs won’t stay where you put them or because your hand is spasming, or because you’re jamming out to a great track at the time and head banging is strangely not conducive to fine motor coordination, then you need to throw it away and get a new one. If you have these sleek solid plastic cased options, you chuck the old one, reach for a new one, and then pop it open ready to go. But if you need to open it and run it under the tap first, there isn’t a tap in most standard stalls, so you need to get dressed and start the entire process from scratch while your friends start to wonder whether they have a recent picture they can show the police.
So I’m really hoping that I can get more of the good catheters, but with the NHS in financial crisis I’m scared I’ll lose the ones I have. It’s such a strange feeling to be afraid of your Urologist because they might decide that you don’t need catheters any more, and leave you with either worse versions, or nothing at all, and essentially make it impossible for you to leave the house.
But the real hope is for anticholinergics. These can help to manage bladder spasms, though they can also cause constipation, dry mouth, and blurred vision, which sound less like a party at my place and more a party at my Nanna’s. Just a few fewer spasms, though, just a hair gentler, would make a world of difference.
I have my fingers crossed, and my legs crossed, for something that might help. But in the meantime I will do what I always do. If I’m going to wet myself…