The best drug

I’ve just had a weekend home alone while my wife and kids went to visit friends in the North East.

As usual I had a list of jobs to do and as usual I missed their company.

On the Saturday I made a concerted effort to finish everything. I tidied out our garage making a couple of trips to the tip. I chopped up some wood for kindling, I also changed all the beds and did all the washing, sorting out and putting away all the dry things from earlier in the week.

Jobs done, I treated myself to a curry and had an early night.

I didn’t sleep well, I never do when I have the bed to myself, and I eventually got up at about 7am with a blistering headache.

I had promised myself that I’d go for a run in the early hours as part of my gradual easing-myself-into-getting-fit campaign, but the headache was going to scupper that one. I’d probably slept funny, judging my the pain in my neck muscles, but it felt like one of those dehydration headaches that you get when you’re hung over. One that feels like your brain has shrivelled up like a prune.

I downed two ibuprofen, put the kettle on and ate a banana, thinking…

I was up early for a Sunday and I had time on my hands. If I couldn’t go for a run, why not go for a brisk walk instead?

I’m lucky enough to live on the edge of town and there’s countryside only a ten minute walk away.

So after I’d finished my cuppa, I put on my waterproof and I was out of the door.

Fab! Typically for a Sunday morning there was no traffic and no-one about, just a bloke jogging to start with.

It wasn’t long before I found an old farm bridleway that I used to frequent when I was doing my masters degree and needed to escape, some eleven years ago.

At one time I had walked every footpath in that area, but it was so long ago, I’d forgotten half of them existed. I had to remind myself that the vicious looking dog that used to live in one of the farms was most likely dead by now. Some of the eccentric architecture of some of the buildings came back to me like a nice surprise as well, like the un-nervingly tall but thin house standing on its own on a muddy lane or the old rickety house with the stone tile roof.

It was lovely, the sky was still starting to brighten and with my headache now gone. A fine rain dampened my hair. The smell of mud and leaves filled my nostrils. The birds were singing, and a cow stuck its head out of a barn and watched me as I went past.

I said “good morning” to a handful of dog owners. I even shared a laugh with the owner of a large black Labrador that had run, leaping and body-checking me – something that would have frightened me silly at one time.

After about an hour of walking in what had become a steady drizzle, it occurred to me that a strange, yet familiar feeling was engulfing me. Something I seriously haven’t felt for perhaps years.

I was deliriously happy.

Half an hour later I returned home with a box of mushrooms from the local shop. I reckon I walked for about six miles. After cooking up brunch, I sat down, plate on lap, and opened up my Woody Allen box set. I watched Manhattan.

A while ago, I wrote on this blog about a sixteen mile walk I had once done in the snow, a few years before any big relapse and way before I was diagnosed. I wondered whether I’d ever repeat that, whether I’d ever just pull on my walking boots to hit the hills, pocketing an ordnance survey map on my way out of the door.

I’m not altogether sure I will, in terms of distance, but I have resolved, particularly as the days get longer, that if I can’t get back to sleep post-4am, I may just have to cut my losses and make the most of the early hours.

I’m not saying that I’m unhappy, but there are stresses and strains in everyday life that can build up and drag you down, particularly when you have a chronic illness and perhaps can’t manage everyday life in the same way that you used to.

I guess I’ve just resolved to take advantage of that me time while everyone else is buried beneath their duvets. Endorphins are the best drug and I fully intend to become addicted.

Happy Christmas!

Just wanted to wish my followers a happy and healthy Christmas and new year as I’m unlikely to update this site again before the big day.

My life has changed markedly in the past few months with the change in working hours and my bladder problems, so I particularly want to say thanks for the support. It is greatly appreciated.

Have a fabulous festive season everyone!

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.

Trump card #1

My wife and I went to see Depeche Mode in Manchester the other night.

I don’t normally do stadium gigs, and it’s been a while, but they were excellent. Even though we were near the back of the auditorium and it wasn’t loud enough (I like the music to thump through me and rattle my rib cage). Depeche Mode are second only to 1989-era The Cure when I saw them at the NEC.

Anyway, my wife got to play the MS trump card.

During a Martin Gore ballad, she went to the bar to get us both a drink. On the way back carrying two pints, she was shouted at by a bloke with a gang of his mates:

“Alright, love? Are you thirsty?”

“Actually one’s for my husband.”

“The lazy bastard! He sent you to the bar?”

“Yeah, well, he’s got multiple sclerosis so he’d only spill them everywhere.”

The trump card played, my wife watched as his shoulders slumped and his mates rolled their eyes and shook their heads.

“Take no notice of him, he’s an idiot. Can we help you at all?”

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.

The day has arrived

Hurrah!

Today I have a spring in my step.

Why?

I’m officially a part-time worker. I started work at 9am and I’m just leaving for home. It’s 3pm.

I have a pair of shoes to pick up for my daughter and then I’m picking the kids up from the childminder at 4.30 which gives me a little extra time to chill, and to start getting dinner ready.

In seperate news, this morning my six year old daughter said “Daddy, I feel like a grown up.”

“Why’s that then?”

“I’m really, really tired.”

I guess that reflects badly on us as parents, doesn’t it?

Ho hum! Hopefully my new hours will help dispel that concept.

I’ll keep you  posted on how it works out.