Feeling the heat

Well, last week was a scorcher.

So much so, that I gave up on Fathers’ Day activities halfway through the afternoon and went to bed for a bit. The following day, I dressed for work, drove my youngest to school, and then turned round and headed back home I felt so rough.

Again, I had an hour’s kip during the afternoon. After this I felt brave enough to step outside into our south-facing garden with some crazy idea about hanging out some washing.

Stepping out of the back door, I felt sure, was pretty similar to stepping off an aircraft in Saudi Arabia.

I turned round and went back in.

I felt so fatigued, dizzy and achey that I even Googled to see if I’d given myself cyanide poisoning. I’d made elderflower cordial, and elderflower and gooseberry jam a day or two previously and the stems apparently contain cyanide (in the same sort of way that apple pips do).

To a paranoid, heat-addled, MS-scarred brain like mine, it’s pretty amazing how similar the symptoms of MS and elderflower-induced cyanide poisoning are.

Tuesday, I was pretty much right as rain, so I ventured back to the office knowing that I could leave any time I needed to, and on Wednesday I’d booked a day off anyway to attend school sports day.

My youngest daughter’s school sports day involves a lot of standing up and moving from one event to another. The weather reports said partial cloud.

After two and a half hours of hanging around in full burning sunshine, I ventured back to my car that I’d helpfully parked about a mile away.

It was then that I found it was incredibly hard to walk in any meaningful foot-in-front-of-the-other kind of way. As I was the first one out of the school gates, I wondered what the other parents thought of my stumbling feet; feet that felt like they were made from bags of sand, and legs that felt like they were wading rather than walking.

At least I’d had the forethought of deliberately parking somewhere shady. Slumping into the driver’s seat, I allowed myself a rare emotional moment – probably no more than a few seconds, but enough to release the weight of what I’d bottled up – before turning the key in the ignition and just getting on with the rest of the day.

When I eventually got home there was a letter from Big City Hospital waiting for me. It was my neurologist to say the results of my recent MRI were back. It showed new lesions, apparently.

Now here’s the interesting thing – my neuro’s exact words look designed to set my mind at rest: ‘a small number of small new lesions compared to the scan of three years ago’. For someone who proof reads as part of their job, the use of the word ‘small’ twice in the same sentence stuck out like a luminously sun burned neck. The scan of three years ago that he mentioned had itself shown no new activity since the previous scan when I was first diagnosed, so these are the first new lesions on a brain scan of mine in nine years.

Anyway, my neurologist didn’t think this ‘necessarily need prompt a change in treatment’, but he’s asked that I come in to see him anyway ‘to discuss’.

Hmmm… all well and good if I’m being summoned to ask questions and set my mind at rest, but there’s also a little part of me that feels a little worried.

Just keep swimming

Well, I’ve just returned from a family holiday to Florida. It was 90% Disney just like the last time we went. Both my wife and my youngest are big Star Wars fans, so my youngest had a light sabre battle with Darth Vader and my wife got a hug from Chewbacca among the many highlights. If anything, it was just nice to have a fortnight away in 40 degree heat.

The return trip was a bit arduous though as it involved a faulty aircraft and a four hour wait on the tarmac in Philadelphia.

Phew!

Needless to say, sitting in such cramped quarters for such a long time while the captain repeatedly switched the plane off and then on again, is not good for me and my MS. I don’t sleep on flights anyway, I find it impossible, and for the six hours after the 2am take-off I think it’s fair to say I suffered a bit.

Anyway – I now know the following:

  • I like warm / hot weather. I’ve been suspecting this on previous holidays but now it’s official. A few years ago I would’ve said the opposite, but it’s far more pleasant to take it easy and carry around a t-shirt, shorts and sandals than jeans, coat, pullover etc. I feel much better for it.
  • Disabled loos in the places we visited seem to be an add-on to the existing gents as extra wide cubicles. This means that even if you feel justified using them they’ll be used by the general public anyway if the others are engaged. There doesn’t seem to be the same stigma around non-disabled usage as at home.
  • How to swim.

So there you go, all things I . . . hold on a minute – what was the last one again?

Yes, that’s right, I’m so proud of my older teenaged daughter, who succeeded where so many have failed, by patiently and good naturedly curing me of my 45 year deep-seated phobia of water and swimming pools. I’ve faced up to some pretty scary things in life both generally and (especially) as an MS patient, but my fear of swimming is right up there.

“Think back to the dawn of time and of all the millions of people who have ever died. How many of them drowned in a swimming pool?” she smiled as she persuaded me to doggy paddle a handful of metres to the edge of our villa’s pool.

Without batting an eyelid she skillfully turned me from someone who panicked each time I slightly lost my balance into someone swimming the backstroke, breast-stroke and even the crawl (with my head underwater the length of the pool), within an hour.

I ended up tiring myself out making up for lost time. Every day afterwards I gave myself a big grin by double-checking that I hadn’t forgotten how to do it.

The next step, I feel, is working out how to breathe and swim at the same time, so I might be looking at taking extra lessons now that I’m back in Blighty.

The thing that amazes me though, is how easy it was to take that extra step and stop panicking. Once I realised how I naturally float, I was away. I did the starfish float, I tried to get my bum to touch the floor of the pool and failed, I even held my breath and tucked my knees into my chest and let myself roll in the water.

Why on earth didn’t I do all this years ago?

Also when I mention it to others, I find that most people I know haven’t really made it to the next rung of the ladder. I suddenly seem to be in the middle of a sea of people who aren’t that proficient at swimming. When I jokingly mentioned the fact that I like swimming backstroke because I can actually breathe, a workmate agreed and said in the event of a ship going down he’d backstroke to the lifeboat for that very reason.

Is it difficult to progress as a swimmer, then? Is it because most people don’t swim regularly enough to have built up a stamina for it? All these years I’ve been labouring under the misapprehension that everyone is as good as Ellie Simmonds or Steph Millward albeit a good deal slower.

Of course, my daughter and all her friends haven’t reached a lifetime of apathy yet, so they’re all fantastic swimmers apparently.

So why have I spent a lifetime as a non swimmer? Well, I mainly blame moving house from Manchester to the rural redneck backwater of East Anglia for a few years as a kid; my crippling shyness at the time, coupled with an inexperience of swimming pools, particularly freezing open air school ones and the fact that goggles didn’t seem to have been invented in the late 70s / early 80s. Also, the lack of encouragement from teachers and parents.

Various family members did attempt to teach me to swim, but they tried to do so while up to their chest in the balmy sub-tropical waters of the North Sea. Claiming, while I steadfastly kept my arms crossed and my feet anchored to a pebbly beach, that their sadistic dads and uncles did the same to them so why wouldn’t it work with me? Or they’ve dangled the ten-year-old me by the ankles off the ends of piers for fun – memories I’ve obviously repressed until now.

Even as a teenager, I pulled an outstretched hand (and the fully track-suited swimming teacher attached to it) into the deep end of the school pool after thrashing around in a panic when a float torpedoed from my slippery grasp.

If I can keep on swimming in an environment I’m comfortable with, it could be just the exercise I need. The local MS Society branch have a pool meet-up one evening a week in a special school within walking distance. Here they obviously have hoists and the like for those with mobility issues but also a nice warm pool. So I might explore that option if it’s suitable. Also, the local authority where I live have nice friendly looking teachers who do group and one-on-one sessions for adults.

Until then I’m looking forward to my next holiday – camping in Cornwall – and yes, I’ve made sure there’s a pool.

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.

Friendly fire

I think it’s fair to say that I think about my MS every hour of every day.

While I don’t like for it to define me in any way, you can’t help it sometimes. I leave work every day at 3pm, for instance, and apart from a colleague with ME, and another who’s not quite in remission yet from cancer, everyone else in the office works till 5.

But I’ll always be surrounded by a cloud of symptoms, invisible to everyone except me. I still have the diplopia gifted to me by my 2008 relapse and a little noise creeping into my vision courtesy of a scarred optic nerve. I get swimmingly dizzy doing up my shoelaces sometimes and goodness knows why there aren’t bruises peppering my elbows and knees, the number of times I’ve walked into walls and the like.

Last night I woke up at 5am and decided I wouldn’t be able to go back to sleep unless I went to the loo. This turned out to be a bit of a palaver, mainly due to the fact that our bedroom is cluttered with suitcases and holiday packing ready for two weeks in Florida from this weekend. Added to this and the general grogginess of sleep is that I get some spasticity in my arms and legs when I get up and my balance is not the greatest it’s ever been.

So I did quite well to get to the bathroom and back unscathed.

Last night I dropped back off to sleep straight away. What happened next I blame on a vasterbottensost cheese and malt whisky nightcap. I slept soundly and deeply, but dreaming that I could no longer walk and needed a wheelchair to get about and a stairlift to get upstairs.

It seems that my under fire neurology is now targeting my unconscious life. I’ve always been free of MS in my dreams until now.

Ninety minutes to Grandaddy

The other night, I traveled across the Pennines to see my big brother and to witness Grandaddy in concert at Manchester’s Albert Hall.

The Albert Hall is a marvelous venue right in the city centre. It’s a converted methodist chapel with a balcony (a bit like a smaller, less springy Ritz, for those of you who know their Manchester venues). I really like it, although the couple of gigs I’ve been to there have been a little on the quiet side for my liking. It could, of course, be that my ears have been blasted to partial deafness by decades of gig-going but I do like the bass to rumble through my feet and ribs when I see live music.

Well, I was both looking forward to and dreading my outing to an equal degree. The reason for dreading it is the outward hour and a half I spend in the car, inevitably following a heavy load or getting snarled up in the bob and weave of the A6 as it passes through Hazel Grove. Coupling this with the fact it was a school night and leaving hot on the heels of returning from work, I was filled with a sense of impending fatigue before I’d even started.

This sense of forboding means I’ve held off getting tickets for other upcoming Manchester dates such as Thee Oh Sees (now sold out, I think) and Thurston Moore, who I’ve seen solo several times over the last few years (I’m a big Sonic Youth fan).

It turned out the journey wasn’t so bad, apart from the inevitable tailbacks on the Derbyshire / Cheshire border. Even Hazel Grove wasn’t too bad and I managed to successfully circumnavigate the box junctions, the buses in the left hand lane and the turning drivers in the right without too much difficulty. It still took me exactly an hour and a half.

As a student in Manchester a quarter of a century ago, it used to make me smile that I could catch a National Express bus home, or a train, or get a lift with my dad, each of these taking wildly different routes, and for any number of reasons it would always take an hour and a half. And it still does, give or take five minutes.

Once I’d reached my brother’s house, had a cup of tea, said hi to his family (making them look up from the XBox for a second) and made a fuss of his new dog, he did the driving into town. This took the stress out of finding parking spaces and the like and I ended up relaxing into and enjoying my night out.

It has to be said, great though they are, Grandaddy aren’t the most thrilling act to watch live and I ended up with the standing-in-one-place fatigue that you get at gigs, shifting from one foot to another to see past the head of the guy in front. In fact, the thing that worries me most – my legs giving way and crashing me to the deck in a public place – happened to someone else nearby. He was OK though, and his friends carefully lifted him back up and dusted him off, checking he was alright.

Afterwards, we made it back OK and I hopped into my car for the drive home.

This time, instead of the usual route, I set my sat nav for a neighbourhood in Gorton, a predominately working class area on Manchester’s east side where I used to share a house, way back when. Just for old time’s sake.

It’s not a studenty area at all and my walk into uni used to take me along the A57 Hyde Road, a good three miles, past a huge railway sidings, a multiplex where I’d seen Bill and Ted’s Bogus Journey in the middle of the day with the cinema to myself, an Eccles Cake factory which used to smell sweet and comforting in the middle of winter, and the crumbling ruin of the charmingly named Fort Ardwick – a condemned, concrete housing monstrosity from the 1960s.

Driving through in the middle of the night, I was amazed how much I didn’t remember. A neighbourhood can change a lot in 25 years, of course, but I didn’t even remember the huge Piccadilly-bound railway viaduct I would have had to walk under on my way to lectures every day.

Mentally shrugging my shoulders, one hand on the wheel, I altered my sat nav for home.

For whatever reason, I missed my turn for the Snake Pass and ended up following the old National Express bus route along the Woodhead to the north of Sheffield. The last time I’d traveled this way, I’d been in the last vehicle to travel over the tops before the snow had closed the route, and I remembered that night as my headlights lit up the white snow posts at the side of the road, my sat nav telling me about the reservoirs lost in the night just beyond the road’s edge.

It seemed to take an age. I was at the head of a line of traffic twisting uphill in the slow moving lea of a heavily laden juggernaut. Eventually, somewhere near the route’s apex, it pulled into a lay-by to let us all past and I sped along for a hundred yards or so, only to hit a series of speed checks and an almost identical juggernaut on the downhill stretch.

Eventually I waved it goodbye near Stocksbridge and I hit the M1 southbound, flying along the home-stretch in the early hours of the morning.

Slotting my keys into my front door, I checked my watch: an hour and a half exactly.

Copaxone changes

Thanks to a comment from HoneysuckleB on a recent post, I rang my MS nursing team at big-city hospital to find out if I could switch from the daily Copaxone injections to the three-times-a-week version.

The reasoning behind this is a fairly straightforward one: rather pathetically, I’m dependent on my Outlook calendar at work to remind me to inject.

It actually has a dual purpose. I currently leave work at 3pm, so I set the reminder for then just so I know it’s time to go home. I’ll then ‘snooze’ this reminder for an hour or two after I’ve left the office. When it pings up at the start of the next day, I’ll pop the injection while I’m waiting for the day to start and the kettle to boil.

It’s a seemingly faultless system. It falls down, of course, on the days I’m not at work.

I don’t know how crap my memory is. I like to think I’m still OK but surely it says something when you can take an injection every day at the same time for five days of the week and then completely forget about it for the other two.

And let’s not forget that when I cook at home, make a cup of tea or want to put some marge on my toast in the morning, I have to move that box of Copaxone to one side to reach various items in the fridge.

It couldn’t be more in-my-face, but I still forget to take it.

Anyway, the MS nurses said yes, no problem, and they’re altering my prescription accordingly.

If I were to faultlessly take my medication, the daily shots should deliver 140mg of medication into my system. The three-times-a-week shots will deliver 120mg (with no loss of effectiveness).

I knew the new dosage has been available in the States for a while, but hadn’t realised it had come over here until HoneysuckleB’s comment, so thank you HoneysuckleB!

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.