Making lemonade

“To make lemonade out of the lemons life throws at you, you sometimes have to strangle kittens.”

Somebody tweeted that recently. Oh wait!… It was me! I tweeted it!

Why?

Because to aid a restful night’s sleep and to stop myself getting urinary infections, I will now have to self-catheterise every day, at least once a day, for the rest of my life.

Hooray! MS rarely gets sexier than that, eh?

Oh well, something else to put on my health CV.

So what’s happening?

I went to the hospital for my yearly check-up this week. I had to have a bladder scan after my usual neurologist appointment. Despite this, I needed a wee really badly when I finally got to the clinic and I used the loo before I’d even checked in at the desk. I’m sure you won’t mind me saying – it was a nice big wee.

45 minutes of waiting room passed as all sorts of MS patients came and went. Some who looked fitter and healthier than me to those in wheelchairs. MS waiting rooms are funny places. I always sit at the back, so I can look out over the city (the clinic is on the 11th storey of a hospital on top of a
hill). I always feel like I’m being weighed up by the other patients when my name is called and the very slight limp I have and the clumsiness I feel as I circumnavigate all the chairs seems amplified all of a sudden).

After my usual questions with the neurologist I got to see one of the MS nurses. Not my usual one.

He scanned my bladder – I had about 640ml of urine in it. I was just about ready for another wee, so he gave me a bed pan and off I went to the loo again. Again, it felt like a nice satisfyingly big wee. As it trickled to a stop I had a slight residual feeling there was more there but the feeling passed and I couldn’t go any more.

The reveal moment came when he told me that I’d managed to pass 120ml of that original 640ml and sure enough the follow up scan revealed that I had about 500ml of wee still inside me. To put it in context, a bladder can hold up to 1.5 litres, so that pint of wee I’m carrying around everywhere is about a third of a bladderful.

I think I can say I was mildly shocked.

Anyway, treatment options were discussed and we both decided that self catheterisation was the way forward. This will involve passing a thin lubricated tube, about a foot long into my bladder every day, once or twice (or more) a day.

It sounds potentially painful, but to his eternal credit he intimated that he’d tried catheterising himself to see how it felt. Just so that he could talk honestly about it to his patients. I felt completely reassured about it and I’m sort-of looking forward to the nursing team who will visit me in the next
week or two to show me how it’s done.

Actually, I’m not looking forward to it at all, but if it needs to be done, it needs to be done, and I’ll have a follow up appointment with the MS nurses in a month or two to see how I’m getting on.

A lot is said about specialist MS nurses and how great they are, but let me say this… I have received care from my MS nursing team for about five years now and going to see them is like going to see a good friend. Even though I’d only met this nurse for the first time, we had a long chat about music, bands we’re both into, cycling, drumming, vegetarianism, local neighbourhoods I wanted to explore after my visit and so on… He even made me a cup of tea. Despite the white coats and the technical equipment hanging from the walls, I completely forgot I was in a hospital.

I said as much on the online hospital feedback form the next day – credit where it’s due, and all that.

Travelling the ten or so miles into the big city and the usual pains of parking spaces, students and traffic congestion put aside – it’s always a pleasure to visit. Long may it continue to be so.

Three cheers for MS nurses!

Incidentally, I nearly chose “Taking the piss” as the title for this post, but felt that would have been unfair.

More soon…

PS – the shaking I experienced recently, didn’t tick the boxes of a fit, but may have been some residual dream-movement, like I thought.

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4 thoughts on “Making lemonade

  1. Cute title. I had retention issues too and am on my 7th year of doing this. I was a mess when I had to start, complete with a panic attack. Hope you have better training than I did, although your target is a little easier to aim for! I hope you will discover, as I have, that doing this is actually a good thing that allows you some control over your schedule (no more having to locate the bathroom EVERYwhere you go). Consider taking a Tylenol before your appointment just to make it easier.

  2. This has been on my mind recently, too. I’ve never had a strong bladder, but I’m clearly not voiding properly either at the moment. It’s not too big a deal right now, but I have been wondering if a catheter is in my future too. It sounds horrendous, so I will be very interested to see how you get on. Also totally get that feeling in the waiting room too…. my symptoms are pretty invisible to most people, so I tend to feel the stares very keenly. Aren’t people with MS funny? That assessing look. I like to imagine that they are composing furious, whiney blog posts about it when they get home. Perhaps they are.
    Keep soldiering on, Dave. You’re not alone.

  3. Hi guys! Thanks for your support. I’ll definitely be updating the blog with my experiences, good or bad. It seems very un-natural to be feeding something so long into a very sensitive part of the anatomy. I’ve had a urinary tract infection before (possibly before diagnosis) and remember that it was like peeing broken glass, and I’d rather not go through that again, so there’s no turning back on this. The drug alternatives involve making my kidneys suck up the excess urine as if I was walking across the desert and that seems even more unnatural.
    Thank you climbingdownhill. I confess I had to look tylenol up on google and found out it was the american way of saying paracetamol. Good advice – I certainly will dose up beforehand. Your words are very reassuring.
    swisslet – the waiting room amuses me greatly. We all know we have hidden symptoms, but we still assume that those with mobility issues have it tougher than others. Maybe they do, but it all feels very competitive sometimes. I might turn up with a stick next time to make me feel less awkward.
    I also sometimes attend my work’s disabled workers group and even though I’m probably the most potentially disabled person there, I feel the same way as I do in the waiting room. The majority of members being deaf to vaying degrees.

  4. Just a quickie to wish you good luck. I’ve been told that the actuality is much less than the thought. Will be very interested to read how you get on as starting to ‘progress’ (was there ever a less apt and insensitive word in the MS context?) along this road. The gift that keeps on giving, eh?

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