Carbon brainprint

I’m quite happy with the fact that, as a family of four (six if you include Fluffles and Fudge our guinea pigs), we’re pretty good at recycling. Our youngest even has the job title of Recycling Officer to encourage her to weed out things that could be added to our recyclable waste.

On top of the fortnightly ‘black bin’ collection, there’s a fortnightly ‘blue bin’ collection for the usual recyclable materials and a ‘green bin’ collection for garden waste, which includes guinea pig bedding and poop.

I also have an allotment, so a lot of raw vegetable kitchen waste and cardboard gets added to a caddy and taken to the compost heap. I re-use our jam jars for my home made jams (rhubarb jam currently in production), before they’re added to the glass recycling.

Every regular black bin collection day, our landfill waste fills only about half a bin, which I think is not bad for a family of four (six).

It pains me, therefore, at the amount of waste having MS generates.

On the bladder front, I use approximately six catheters a day which come in individual hard-plastic screw-top sheaths. These need disposing of, and to do this I have some black granny-scented ‘nappy sacks’, there’s also associated wet wipes and hand gel. The only things I can recycle here are the info leaflets, the plastic bottles the hand gel comes in and the cardboard box that contains the catheters. Also the larger cardboard box and brown paper packing that the cardboard boxes are packed in when they’re delivered. The majority goes to landfill.

Medication-wise, I’m currently injecting Copaxone seven days a week. The syringes are supplied in plastic cases with peelable seals. The seal is somewhere halfway between plastic and paper and is (as far as I know) unrecyclable, so gets sent to landfill. The plastic cases are pretty much the same plastic that supermarkets use for fruit and the like, so they can go in the blue bin, as can the cardboard box the syringes get supplied in and the cardboard box the cardboard box comes in, when it’s dropped off at my GP surgery every month. Although, there’s that many luminous “chillcare” labels and cellophane invoice wrappers attached to this box, I’m unsure how much I’m contaminating the recycling with this when I dispose of it.

Of course, once I’ve done with them, the syringes are popped into a yellow, plastic sharps bin, that I drop off at the GP when it’s full and ask for them to dispose of as medical waste.

The company that supplies my Copaxone, rings me once a month to arrange delivery. Each time they ring I have to make a conscious effort to remember to ask them not to supply a new sharps bin as each one can last several months until full. If I don’t, they supply a new one by default.

Last month I forgot to ask and a new unnecessary one arrived. I’ve added this to what I consider to be my ‘accidental backlog’ because the GP surgery won’t take it and neither will the pharmacy over the road (I’ve asked) and I can’t contemplate chucking it in the bin.

So that’s sharps bins full of used syringes and approximately half a metric tonne of used catheter waste in bags and any other associated medication packs (inter-Botox solifenacin blister packs, for example) either going straight to an incinerator or landfill because of my MS.

So how is all this offset?

The only thing I can think of is that every now and then I work from home as a necessary adjustment, saving 20 miles worth of petrol each time, and the Botox injections have cut down the catheter waste and toilet flushes considerably. Other than that I’m struggling a bit, so I’ll just have to concede that these things are unavoidable and make a concerted effort to reduce waste further in every other aspect of life.

Advertisements

The brutal brilliance of bladder Botox

I’m away on holiday for a couple of weeks soon and this means taking two boxes of urinary catheters plus an extra box just to cover all eventualities. And that’ll take up a considerable amount of space in the case.

Recent experience bears me out. A couple of years ago, we spent four weeks travelling round Australia. This was an unforgettable experience that involved everything from snorkeling on the barrier reef to cuddling baby kangaroos. The whole holiday was marred only by a kidney infection in the outback (treated) and subsequently running low on catheters in my final week. I was still able to pee at that point, but unable to completely empty, which left me needing the loo more often. In the end, I had to make do by rationing myself to one catheter a day (middle of the night) to leave me enough for the flight home.

Last year things had deteriorated to the point where I was less able to ‘go’. At the end of a week in Spain I had one catheter left for the journey back. I decided to use it before the one hour drive to the airport as I felt the need and I knew I had a few spares in the boot of my car in the car park back home.

Stuck in traffic on the ring road round Barcelona, a text came through from the airline to say our flight would be two hours late leaving. On the one hand, this was good news because we weren’t confident we were going to make it to the airport in time, but it was also bad news for me as I knew I’d need the loo again before take-off. To say I was ‘bursting’ all the way home is the understatement of the year. I don’t think I’ve ever been in so much bladder-related pain.

I recounted all my experiences to my sympathetic MS nurse who laid out the different options. These mostly consisted of different medications to either augment or replace the Solafenacin I was already on.

Of the options presented, there appeared to be only one thing that would do the trick, and a subsequent visit to the urology department sealed it: Botox injections it was.

The theory behind this is you get twenty or so injections into the bladder wall; this causes the relevant muscles to contract and then the bladder can take loads more in terms of volume. The only catch is if you were able to pee by yourself before, you definitely can’t now, so you’re completely reliant on self-catheterisation.  Not a problem for me, of course.

Eventually the day came for my injections. I turned up on time after dropping my youngest off at school and driving the ten miles to big-city hospital. My name was called just as my bum hit the waiting room seat, which at least spared me the torture of the piped local radio.

After a quick, less-than-gentle, wash of the relevant area by what was apparently a sponge on a stick, the procedure itself involved a rod being inserted into the bladder. There’s only one way to get it there folks, but as the rod’s no wider than a regular catheter there’s no real discomfort. It’s wide enough just to enable instruments such as a fibre-optic camera and needle to be passed through.

First, the bladder’s inflated with saline solution so the camera can have a proper look round to make sure everything’s healthy. I had a peek on the monitor above my head to satisfy myself and everything was pleasingly pink with little red veins spidering the walls. Then once the two doctors were happy, handling what appeared to be long thin joysticks, they got to work – one advanced the needle to the next injection spot and the other deployed the Botox.

The injections were as you might expect: they hurt in the same way that dentist’s injections hurt and some more so than others. For some reason – possibly because I have to inject medication everyday into relatively fleshy, relatively pain-free areas – this came as an unpleasant surprise. I was a bit too much of a wimp to watch the procedure on the monitor, opting to grit my teeth and stare at the ceiling instead. I’ll save the joy of that experience for another time, when I’m an old hand.

After about ten injections, they let me know they were halfway through, allowing me to have a breather for a second or two, and then they were off again: 21 injections in all.

And that was it. I was led away to dry myself and get dressed and then my pressing need was to find a loo to empty the saline they’d pumped in.

Apart from me, there were three others in the operating room: two doctors (one female) and a student observer. I didn’t mind, I’ve long since lost any inhibitions about exposing my nether regions to medical staff. I just found it a short, relatively brutal experience. It’s over in ten minutes flat.

I don’t know if it was because it was my first time, but I immediately felt the need to be by myself and ‘lick my wounds’ afterwards. Not easy in a big city hospital with a concourse filled by wheelchairs, visitors, charity stalls, staff waiting for lifts, and people in dressing gowns clutching cigarette packets making a bee line for the exit. I didn’t even feel like sending the promised text to my wife to say that it was all over. I just wanted to shrink into a quiet corner. Even the chocolate I’d promised myself as a reward for being brave tasted flat.

But, boy! What a difference . . . I go to the loo as often as a ‘normal’ person now, four to six times a day, and only once during the night, depending on how tired I am (I’ve even slept through a couple of times). One exceptionally busy day at work, I only realised I hadn’t been to the loo all day when I was halfway home – a total of eight hours. This is a far cry from the bad old days of yo-yoing to the gents and back. I can’t tell you how much this has improved my quality of life. It was totally worth the ten minutes of discomfort.

So how long does the Botox last? I’ve been told it could be anywhere between three and 12 months with most people averaging at six. It’s been four months for me, now, and it still seems to be going strong, so I’m very happy so far. There are no side-effects either – from the Botox or from the medication that I no longer take.

All the better for me to enjoy my forthcoming trip and one more aspect of MS that I won’t be taking with me.

Making lemonade #2

Way back when I started secondary school, a rumour went around that all the boys would need a medical during the first term. This would involve a procedure where a nurse would hold our testicles while we coughed.

This never happened, of course, but a part of me believed it. It made the eleven year old me unduly anxious to say the least.

I often think about how cool it would be to be some sort of guardian angel to my awkward, shy, younger self. I’d put a supportive arm around my own shoulders and whisper something into my ear… some mature advice to make me feel better: “That thing about a nurse holding your bollocks? It won’t happen. It’s utter nonsense… ha ha! Just you wait another 30 years.”

Fast forward to the other week…

I’ve learnt a new skill!

It involves passing a foot long length of tubing into the most sensitive and private part of my anatomy.

The first time I did it, I had my trousers round my ankles, while a nurse (female), who I’d met for the first time barely 20 minutes previously, looked on, rubbing my shoulder in a supportive, encouraging manner.

Yes, I have to catheterise myself at least twice a day, now, due to the fact that I retain approximately one pint (500ml) of urine in my bladder, even after visiting the loo. The urology nurse who came to visit told me that anyone who regularly holds 400ml of urine is advised to catheterise (the MS Trust say anyone holding more than 100ml), so I fall (un)comfortably into that bracket.

I’ll be performing this procedure for approximately… hmmm… how many months? Oh wait!… The rest of my bloody life!

I’ll be honest with you. The first few days you try it, it isn’t easy to do. I winced each time at the prospect of threading the tube into such a seemingly tight space. I also had to change the type of catheters I was using as the initial bendy latex ones were causing too much pain and I was finding blood in my urine. Plus I found them as easy to hold as a live eel. But two weeks on, with stiffer, differently lubricated catheters, it’s a lot better, and I feel a lot calmer doing it.

So has it worked? Do I visit the loo less urgently? Do I go less often? Do I finally have an unbroken night’s sleep?

The answer to that is yes and no.

I can’t describe how crestfallen I felt on the first night. After painfully tubing myself before going to bed, I woke up at 2am, 4am, and then 6am desperate for the loo. It was as if nothing had changed. Nothing except for the fact that I now had to perform some sort of low level surgery on myself.

After a few nights of this, a phonecall to my MS nurse and a visit to the GP meant that I’ve started taking solifenacin tablets to relax the bladder muscle and reduce the urge to pass water.

It’s early days still, but I mostly wake up with my bladder just once a night now (and I catheterise when I do). During the working day I might make a trip to the loo, two or even three times in my six hour shift, instead of three times an hour, so to me, it’s an unbelievable turnaround. In the daytime I couldn’t be happier. I’m getting to be friends with my bladder again and it turns out he’s quite a nice guy.

There’s still the element of waking halfway through the night to contend with, though. I wonder if part of it is to do with learned behaviour. Perhaps my body automatically wakes up at regular points during the night and now needs to be retrained. I’ve tried to combat the night time loo visits by cutting down massively on the amount of caffeine I take in and the drink of water I have with my evening meal is often the last liquid to pass my lips every day.

It’s early days on the pills, though. Tomorrow marks one week of taking them and the GP told me it takes about seven days for them to kick in (the MS Trust says up to four weeks), so we’ll see how it goes. I don’t remember the last time I managed to sleep through the night without waking. The day I finally do, I’ll be partying.

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.