Throughout my adult life, I have often been accused of being cynical.
I actually don't really agree with this assessment at all, but I've probably only got myself to blame. I prize critical thinking very highly indeed, and I'm also blessed with an almost complete inability *not* to say what's actually on my mind. On the rare occasions that I have been able to keep my mouth shut and my opinions to myself, I have sadly been unable to keep exactly what I'm thinking from being easily readable on my face.
I admire this quality in other people, but I have to say that it hasn't been particularly good for my career.
Anyway. Safe to say that I don't think I'm generally seen by people as a glass-half-full kind of a guy.
I was speaking to someone that I've known for more than a decade the other day, and he was genuinely taken aback when I suggested that I was a cynic. He seemed to think that I was pretty much the case-study of an optimist.
Well, how else did I explain my attitude to life since my diagnosis with MS and the fact that I started running marathons?
Now I was taken aback. I've been called lots of things over the years, but I don't think anyone has ever accused me of optimism before.
Well, it's been a little over three weeks since I ran the hottest London Marathon ever. Since then, I've been managing a dodgy ankle, a black toenail (incredibly the first one in my running career!), a strained glute muscle, a sore knee, a possible inguinal hernia and a nasty lingering cough.
Oh, and MS.
This coming Sunday, I'm going to be running the Liverpool Marathon on what is apparently forecast to be the hottest day of the year.
Perhaps it's my age, but I find myself becoming irrationally angry when I see a child on a motorised scooter or mini-buggy or something. It's becoming increasingly common to see them on the paths and playing fields around the river near me. The council have recently built a lovely little mini-roadway around there, complete with pedestrian crossings and traffic signals, designed to help kids become more road aware on their bikes and things. Yesterday, seeing a little girl motoring around there on a scooter with an engine just made me feel cross and a bit sad.
Don't get me wrong, I'm sure I would have absolutely loved to have one of these when I was a kid... but not having one meant I was forced to get out on my pushbike under my own steam, and I'm pretty sure that didn't do me any harm in the long run.
That girl on the mini-roadway wasn't paying any attention to the traffic lights, either... and I hope she never takes that scooter out onto the roads.
Is it any wonder, I found myself chuntering to a friend as we were doing a warm-up before an interval session on the playing fields, watching a slightly tubby child driving around on a miniature four-wheeled, motorised truck, that type 2 diabetes is such a plague and that our kids are growing up fat?
**Pause for reflection**
.... rather than just growing up skinny and judgmental like me.
I'm suddenly feeling a bit emotional at the thought of running a marathon on Sunday.
I've run this marathon twice before, so I'm not intimidated by the distance and I know I've put the hard work into my training. I've run the hard yards through a pretty brutal and relentless winter and know that I've earned my place at the start of what looks like it might be the hottest London Marathon on record (typical, right? You train through the Beast from the East and end up running in a heatwave).
I'm feeling emotional because I've been humbled again by the generosity of the people donating money on our fundraising page. Our friends, family and lots of total strangers have been dipping their hands into their pockets and have nudged us towards a fantastic total -- currently over £7,000 before gift aid. The MS Trust is a fairly small charity, but the impact that they have on the lives of people with multiple sclerosis and their families is massive. I was attending an MS clinic the other day, and the nurse that I saw was trained by the MS Trust (many others are also partly funded by the Trust), and the leaflets I was given to help me with some important decisions were funded and produced by the MS Trust. The money that we raise here will make a genuine difference.
As usual, I've deployed my tired old sob story in an attempt to emotionally blackmail people into donations. In 2016 I was an official London Marathon blogger, but this time around, my story was picked up by the Daily Mirror and run both online and in the printed edition. This has been more than a little surreal, not least because the bottom 25% of the page I'm featured on tells the story of someone running the marathon without functioning kidneys.
As well as helping me give people another nudge towards our donation link, this sort of exposure is so important for the charity in helping them to increase their reach. It was a little weird to see myself in a mass circulation tabloid, mind. They describe me as "fun loving Tim", possibly because I'm wearing a tutu.
I'm obviously not shy about deploying my story like this, but it's strange to see people talking about how remarkable I am, how my PB is "Brilliant" (well, I'm hoping to beat it this year, for starters...weather permitting). I don't feel particularly inspiring or amazing.
I mostly just feel lucky.
My race number for Sunday is 24120. Look out for the tall, skinny chap in a blue tutu.
There's a documentary series - Hospital - on at the moment that was filmed at the beginning of this year at the Queens Medical Centre in Nottingham. It follows the staff and patients of my local hospital as they struggle to cope with the demand of a particularly brutal winter. Watching it is an emotional experience: I get a surge of pride when I see what a wonderful institution the NHS is and how these dedicated staff are able to give the best possible care they can to every patient, but I also get very angry when I see the impact that decades of cuts are having on this service and how they compromise that care at every turn. They say that the more direct experience you have with the NHS, the more you appreciate it.... but it's heart-breaking to see the impossible decisions that doctors are forced to make when we simply don't have the resources to provide the right level of care.
This week followed a surgeon who specialised in head and neck cancers. He loves his job and had extended a six month posting to cover eighteen months, but he was working in a ridiculous short-staffed department of two surgeons (when there should have been four). With his wife already working as a plastic surgeon in the USA, he took the decision to give the department five months' notice that he was going to leave the UK and follow her. Although the NHS is a wonderful and precious thing, he said, in the USA he would have the time and resources to provide a better quality of care to a smaller number of patients. What he didn't say was that this care would only be provided to those with the insurance to be able to pay for that care... which, for all of its failings, is not true of the NHS, even if it's what some of our politicians seem hell-bent on delivering for us.
During the course of this week's programme, we watched this same consultant being asked by the camera team if a delay to surgery to one lady had played a role in her cancer becoming inoperable. Conscious that he was being filmed, he picked his words carefully: well, it's difficult to say for sure and absolutely impossible to prove... but if someone had told me that this is how my mother had been treated, I would be very angry. Enough said, I think. The lady herself was heartbreakingly phlegmatic: "I'm old, I've had a good life, done everything I wanted to do and been to every part of the world I've ever wanted to visit...". I was in pieces watching this on my sofa.
As chance would have it, I was in QMC myself this morning. I stopped injecting Avonex after the possible allergic reaction that I had in January, so this was an appointment to check in with the MS Nurses and the consultant neurologist to decide what we do next. A trip to the MS Clinic is sobering: as I walk into the clinic, I look around the waiting room and see people with walking sticks and wheelchairs. This morning, one lady arrived in an electric wheelchair, accompanied by her carer. She had a big head support that held her head in place, and when she tried to speak to the nurse, she was only able to communicate with moans and grunts rather than actual words. I try not to think about it very hard, but this is what the future might look like for anyone with multiple sclerosis. Meanwhile, I was warmly greeted by the consultant with a cheery "Ah, it's the patient who runs marathons!" I'm a fairly unexceptional runner, but I certainly stand out here. (My wife would also probably like me to point out at this point that the consultant then apologised to her for not remembering this, but she looked athletic, so was she a runner too? She was thrilled. If an eminent medical professional thinks you look athletic, then.... well, you must be.. right?)
As we left, C. asked me how I felt. I've got a few decisions to make about whether I want to resume my injections, or if I want to continue taking nothing and six monthly MRI scans to check that my disease is continuing to progress as slowly as it has seemed to for the last ten years. Do I want to go back onto the treatment I've been using for the last ten years, or do I want to roll the dice? It's a tough one.
But how do I feel? Honestly? Well I don't know if I know the answer, or if there are any right answers here, but how do I feel? Lucky.
I feel lucky.
I'm running the London marathon in a couple of weeks; I'll also be running the Liverpool marathon in May too. We're raising money for the MS Trust. At my appointment today, the nurse who saw me was trained and partially funded by the MS Trust; the leaflets that we were given to take away to help with our decisions are written and produced by the MS Trust. This small charity provides a crucial support to the medical teams that support patients with MS, and they provide support and information to the families of people affected by the disease. I'm so proud that I'm able to do something to help them continue their work and to continue to support the NHS and people with MS.
You can sponsor us here! The money that you good people have donated so far will make a massive difference to the lives of people with MS and their families. No one should have to go through this alone.
Flight of the Conchords @ Milton Keynes Theatre, Wednesday 14 March 2018
We went to New Zealand in March 2010 after a month spent travelling in Australia. In my head, I’d lazily imagined that they were probably pretty similar countries, but my preconceptions began to be changed the moment we came in to land in a rainy Christchurch that was significantly smaller than I’d imagined New Zealand’s third city would be. For the next four weeks, travelling around in a very basic camper van, I quickly fell in love with the self-deprecating Kiwis and their beautiful country. It’s in the little things: the homemade rugby posts in the back gardens of remote homesteads on South Island; the quiet excellence of their coffee (the Australians like to tell you that they have a coffee culture - not compared to the Kiwis, they don’t. The Kiwis just don’t like to shout about it); that wonderful accent (fush & chups?); the self-deprecating humour (on any subject except rugby); the fairy penguins.
I can’t remember now if I started watching Flight of the Conchords before I went to New Zealand or not (the TV show started in 2007), but I have found that exposure to Kiwis and their quirks has really enhanced my enjoyment of the show. Sure, it’s funny anyway, but visiting New Zealand and having a first-hand appreciation of Kiwis and the way they differ from their Australian cousins has sharpened my appreciation. I found that it’s much the same with a film like Hunt for the Wilderpeople, directed by Taika Waititi: it’s a lovely film in its own right, but I just felt like I got a little bit more out of it by having at least a little understanding of New Zealanders. Not least the “Stungray”.
Actually, Flight of the Conchords are that very rare beast where I think I actually prefer their music to the TV show. I like the show, but there’s just something about their two albums that has really connected with me. They don’t just write funny songs, they write songs that I’m happy to listen to and am still happy to listen to many years later. Take “Carol Brown”: on the face of it, this is a comic version of Paul Simon’s “50 Ways to Leave Your Lover”. It certainly is that, but it's also a whole lot more than that and I actually prefer it as a song too. It’s probably true to say that their humour is right up my street: they’re clever and self-deprecating and delight in word-play.
Just my sort of thing.
Ticketmaster’s unbelievably greedy and incompetent fuckwittery aside, when they announced a UK tour, I was always going to try and get to hold of some tickets if I possibly could (and ultimately did, directly through the Milton Keynes theatre website). It this necessitated a midweek trip down the motorway and a predictably average tea in a Slug & Lettuce, then so be it.
Support was from David O’Doherty, a brilliant musical comedian in his own right. Tonight, his own set seemed to be about 20 minutes long before he introduced the main attraction onto the stage (he was back a few times during the headline set, including a lovely performance on percussion (including some hastily sourced spoons) during the encore.
With a cheery "Good evening Milk and Beans!", our heroes enter the stage. Bret and Jermaine have both certainly aged a bit since we last saw them together in the TV show, something they’re quick to acknowledge. But haven’t we all? They’re already played a few shows on this tour, and I have no idea how much work they’ve been putting in at the rehearsal room, but I think that “slightly shambolic” is probably the best way of describing them onstage. There a plenty of fluffed lyrics and onstage asides during the show, but that’s always been their schtick and is very much a part of their charm. They take great pleasure in introducing the New Zealand Symphony Orchestra onto the stage to accompany them… Nigel, who shuffles onto the stage in a tuxedo t-shirt. It’s a funny joke, but when they don’t quite get the reaction they’re hoping for from the audience, they good-naturedly grumble about it to each other and to us. They don’t like to compare audiences, they say, but weren’t Portsmouth great the other night. Actually, mild grouchy dissatisfaction with the audience reaction is something of a recurring theme for the show. I think they’re mostly doing it for a laugh, but I can’t help but quite escape from the feeling that they do mean it a little bit, because they’re a bit sensitive about being a bit ring-rusty and, dammit, they’re proud of how clever some of this stuff is. The first half of the show is mostly stuff that’s not-exactly new, but is likely new to most of the audience and doesn’t feature in the show or on the records. “Father and Son” tells the touching story of a father and son relationship where it slowly becomes clear that mum isn’t dead and dad’s life has just come off the rails; “Deana and Ian” is the thrilling tale of an office romance between Deana from HR and Ian from accounts; “Stanus” is a long, shaggy dog story of a song done in the style of the theme tune to an old Western TV show like Rawhide; “The Seagull” is a lovely song about, um… a piano-playing seagull (and Portsmouth were much better at the call-and-response seagull noises than the New City of Milton Keynes, apparently. Jermaine actually asks us how far to the sea from here. Milton Keynes certainly isn't a port. Or even a New Port. Although there is Newport Pagnell just down the road...).
The pair obviously go back a long way and it shows in their comfortable relationship onstage. I’m sure they’ve told those gags about the muffin and the lift a million times already, but they have a way of making it sound fresh to me, which is all that really matters. I mean, how many times has Keith Richards mouthed "I love this job" at the camera every time he plays the guitar solo in "Satisfaction"? The newer songs sound pretty good (although they’re not all 100% successful. It’s easier to laugh at songs you know because you're not having to concentrate as hard to catch all of the lyrics). The older songs are, of course, rapturously received: the ones from the first series especially. It’s good that they’re not just performing a greatest hits show and that they’re trying to offer us something new, but it’s also undeniably thrilling to hear songs like “Inner City Pressure” and “Hurt Feelings” first hand.
My favourite song on the night was probably “1353 (Woo a lady)”, because really, how often do you see a duel of recorders onstage?
Were they perfect? No. Would it be better if they were? No, absolutely not! They’re treasures just as they are and should never change. Plus I now own a pin badge saying “band meeting” and another one (which I’ve put onto my lanyard at work) saying “business time”. If that isn’t the sign of a successful night, then I don’t know what is. They’re be sorry to hear that I didn’t buy a metal reusable water bottle laser-etched with their picture though. Sorry about that.
Bret broke his hand a few days after this gig and they were forced to postpone the rest of the tour until the summer. Absolutely gutting for everyone who fought so hard to get tickets, but I now feel extra specially lucky thate I got to see them.
Setlist (this might not be an exact list or exactly in the right order on the night…. but it was definitely something like this)
- Father and Son
- Deana and Ian
- The Ballad of Stana
- Carol Brown
- The Seagull
- 1353 (Woo a Lady)
- Chips and Dips
- Inner City Pressure
- Mutha'uckas / Hurt Feelings
- Bus Driver's Song
- Back on the Road
- Shady Rachel
- Albi the Racist Dragon (this was a shouted request that they decided they might be able to remember. Someone also shouted “Business Time” and was just told they weren’t going to do it. In response to a “Where’s Murray?”, Jermaine just said, “fictional” and carried on.
- Foux du Fafa
My team at work have developed a real liking for rubbish jokes.
I think it all started when my wife started bringing home packets of Carambar every time she returned from work. As well as being slightly old-fashioned caramel flavoured sweets that seem designed to pull out your fillings, each wrapper also has a set of jokes (in French) on the back. These jokes are so famously bad that "blague Carambar" has entered the French lexicon as a phrase that means "cringeworthy joke".
I think part of the appeal for my team is my translations: they hand over the wrapper and I do the best I can to make sense of the joke for them. The challenge is that many of these jokes rely on a play on words that is quite difficult to translate when you only have a somewhat functional grasp of French.
This one had everyone in stitches:
"What's a dentist's dream?"
"To live in a really big house".
I think something must have been lost in translation there.
I find myself sometimes texting some of the more baffling ones to C. for a proper explanation. Almost invariably they just aren't funny, but it's good to know that for definite. At least my comic mistranslations seem to be amusing.
Here's my current favourite. It's not a Carambar joke, mind.... but it did make me laugh.
Jokes about white sugar are rare. Jokes about brown sugar? Demerara.*
Go on, it's okay to admit to me that you laughed before you groaned. Everyone does.
I have a friend who is particularly sensitive about cultural appropriation: she's a white westerner but has the most highly attuned filter to other people's possible offence that I have ever come across. I can't help but wonder if she might pull me up on that gag because it seems to encourage the teller to adopt a particular accent in the pronunciation of that last word.
Maybe I'll tell it to her and find out.
I'll perhaps leave the props in the dressing-up box. Some gags are good enough to stand on their own two feet.
* I may not be blogging much at the moment, but you're glad you stopped by just for this, aren't you?
When I was diagnosed with multiple sclerosis in 2009, I very quickly had to make two very important decisions: did I want to start taking a disease modifying drug (DMD)? If so, which one did I want to take?
Neither of these decisions is particularly easy. You’d imagine that everyone would want to be on a drug as soon as possible, but actually, NOT taking a drug is also a perfectly valid choice. MS is (currently) incurable and none of the drugs on offer can make any claim beyond *maybe* slowing down disease progression, although there will be no way of knowing if it’s doing you any good because everybody’s disease presents differently and advances at different rates. And, of course, they all have side-effects… which range from something as benign as getting a bit of a headache all the way through to developing a brain tumour. Nobody wants a brain tumour, do they? Lots of people actually find that the side-effects they do get are so awful that they would rather roll the dice and take nothing at all than face up to that.
For me, the decision was relatively simple: I would rather take something that might be doing nothing, than to take nothing…which is definitely doing nothing to help. The drug I chose was Avonex, and the reason I chose it was because it was a once-weekly injection into the muscle of my thigh that (at the time) I wouldn’t need to keep in a fridge. Yes, it involved a big needle, but I’m not squeamish and it meant a much lower level of general disruption to my life than some of the other drugs that needed injecting several times a week.
As it turned out, I seemed to tolerate the injections fairly well: a couple of paracetamol and 400mg if Ibuprofen before injecting at bedtime, and I seemed to be able to ride out the worst of any side-effects. Occasionally I’d wake up the morning after feeling completely drained, but I certainly never got any of the flu-like symptoms that many other users reported. I tolerated it well, my blood tests seemed relatively normal (on these sorts of meds, you need your blood monitoring to make sure they’re not doing you any form of mischief elsewhere) and, most importantly of all, my MS didn’t seem to be progressing. Never mind that newer therapies – many of which didn’t involve injections at all – were coming onto the market; why change?
For the last three or four winters, I seem to have become susceptible to chest infections that linger for several months. As a runner, this has been annoying, but it was only when my GP mentioned to me this year that this was something that was likely to happen to me every year now, that I even really began to think that it might be down to something other than bad luck. The drugs used to manage MS essentially work by damping down your immune system in an attempt to stop it going rogue and attacking my own nervous system. Is it really such a leap to imagine that suppressing my immune system might lead to other infections? Well, perhaps that was still a trade-off worth making… but then I started to get swelling and white mottling on my tongue and on the back of my throat. I didn’t have any signs of a bacterial infection and came back negative for fungal infection… was I starting to get an allergic reaction to my medication? One week, my throat swelled up within minutes of my injection, and my MS Nurses just told me to stop [I wrote about that the other week]
Did I mention that the MS Nurses are great? They've offered me front line support since the day I was diagnosed and one of the reasons that we support the MS Trust is because they provide the funding and training that helps the MS Nurses carry out their vital work. We're running a marathon in April to raise money to support that work, and you can sponsor us here..... the MS Nurses all remember me when I ring because I'm the runner. This money is needed precisely because it's so unusual to run a marathon with MS. Most cannot.
Heck, on Saturday I ran 18 miles before breakfast! I was out of the house at 05:45 wearing a head torch! I know! And a 5.2 mile club cross-country race through knee-deep muddy water on Sunday!
A month later, my throat is clearing up… but what next? Obviously, it’s not much good taking nothing at all. I’m feeling better, but presumably the same decision I made in 2009 still applies: I’d rather be doing something than doing nothing. But what am I going to take? Well, I spoke to Kate the MS Nurse again today: apparently, although Avonex is one of the older treatments, it is also one that suppresses your immune system the least; all of the others hit you harder. But does that mean that taking them would make me even more prone to infection? Was the infection down to the Avonex suppressing my immune system, or was it something else? I’m told that it’s unlikely that my neurologist would want me to continue with it (only now do I learn that 9 years is a long time to be on Avonex), but it’s not clear where I go from here.
Meanwhile, I wait… and hope that I don’t have a relapse in the meantime. It's something like this that helps me to remember how lucky I've been in the 9 years since I was diagnosed. I really haven't had any great dramas from my MS and - relatively speaking - I still don't really have a great deal to complain about.
At least I’m not very likely to catch a cold.
Swings and roundabouts.
* UPDATE -- the neurologist wants to see me. My next appointment is in November, so they're seeing if they can get me in over the next couple of weeks. His preference is to keep me on the Avonex as I've responded so well to it over the years, but.... who knows?
I was away for a couple of days last week on a team building thing.
TEAM BUILDING. Now, there are two words to strike fear into the heart of any office worker. Luckily, we don't do this sort of thing very often and it really wasn't as bad as I feared.
Amongst all the usual fun (treasure hunts! presentations! a quiz!), we had one session on the first morning where we were split into teams and asked to spend some time thinking about our "values". To help us, we were given a sheet of paper containing a hundred words to help inspire us: joy, integrity, curiosity, intelligence, perseverance.... things like that (although I do wonder if anyone ever actually picks words like holiness or serenity from that list...).
I was slightly surprised when most people in my team started drawing out different lists for values for home and for work. I really don't make that distinction: my values are just my values. Then again, that might just be me. After all, I could never understand it back in the day when people said they hated the idea of a casual dress-code in the office (Ah, how The Gap loved those times). These people liked to make a clear distinction between their time at work and their time at home, and apparently this becomes a lot more difficult if you don't change clothes between the two. Um. If you say so. Although, is that really a good enough reason to wear a tie?
After some discussion, the teams came back together to discuss the values we'd chosen and to see if we had (m)any in common.
"Honesty...." began the spokesperson for one team
I jumped in. "...is such a lonely word?"
Everyone turned to look at me blankly and a confused hush fell across the room.
Well, here's what I learned at my team building event: if the people you work with aren't Billy Joel fans, then you're probably working with the wrong people.
One of the things they never tell you about growing up is that at no point in your life do you actually feel as though you've grown up. I wouldn't go back to being seventeen again for any money in the world, but at the same time, I still find it a little difficult to believe that I'm apparently now a forty-three year old man. When did that happen?
I'm not really sure what I wanted to be when I grew up. I suppose I still don't really know. At one point, as a very young child, I remember being dead-set on becoming a motorcycle policeman (which would have had to be over my father's dead body: as a doctor who attended more than his share of road traffic accidents, he naturally wasn't that keen to have any of his children on a motorbike. A few years later, I completed one of those career advisory questionnaire things and it suggested that I should give serious consideration to a career as a zoo keeper.
Frankly, I was as surprised and disappointed as anyone that I ended up in a career in IT.
Still, it does look like I've always quite liked hats and animals.
I think I'm really styling out that cowboy hat, to be honest. I'd totally wear that outfit again.
And yes, that guitar is upside-down and no, I wasn't some kind of lost, teenage troubadour. Yes, that comic is upside-down too. It must just be how I roll.
On the train on the way home from London last night, we were joined in our carriage at Leicester by a teenager, He took the opportunity of a sparsely populated train to park himself in first class to plug in his phone and make use of the free WiFi. Rather than be amazed at the fact that he was able to charge his phone and connect to the internet on a train at all, he was more concerned and irritated by the fact that the connection wasn't quite reliable enough for him to have a Facetime chat with his friends. Isn't it amazing how quickly things change and just as amazing how quickly they're taken for granted? The same youth also didn't seem to be able to afford a belt for his trousers. I appreciate that it's the entire purpose of fashion to confuse and anger the older generation.... but really?
Hey! Good news! I think I've worked out where my never-ending infection is coming from.
Quick recap: over the last few winters, a cold has turned into a lingering chest infection that seems to take months to shake off. This year was initially no different, and my GP was good enough to pretty much put me straight onto to antibiotics in an attempt to shorten the whole process. This was, she told me, likely to be my fate every winter as long as I was on immune-supressing drugs. Great.
That's the thing about the disease modifying drugs used to treat MS: they try to slow down the progression of the disease by weakening the ability of my immune system to attack my central nervous system. It seems to work, but a weakened immune system obviously leaves the door open to any and every passing infection. What a choice.
This year, the chest infection seemed to develop into something else, a swelling of the throat and tongue with little white nodules. I was treated for a fungal infection (three times), but it didn't seem to make any difference. I've been working pretty long hours for the last few months, so perhaps I'm just run down. A couple of weeks off with an 8 day break in the Maldives can't hurt.
It was a lovely break, but it didn't shake off my throat problem. I thought it had gone, but after my weekly injection, it came back before I even had a chance to think about the 30 degree drop in temperature waiting for me when I returned to the UK.
By this point, my GP is baffled. I am fit and healthy with a strong pulse and no obvious signs of infection. My throat and tongue were swabbed for a fungal infection and came back completely normal... and yet, here we are. This damn thing has been hanging around for months. It's affecting my voice, so I've had to stop going to choir. It's not especially debilitating and it's no longer in my lungs, but it is certainly BLOODY ANNOYING. Could it perhaps be something to do with the Avonex I've been injecting every week for the last 8 years?
Now that I thought about it, this confirmed a pattern for me: mouth and throat start to feel like they're getting better, then I inject and it comes back, getting better over the course of the week until I inject again and then the cycle repeats. I spoke to my MS Nurses - my gateway to the neurology team at the hospital - and they brushed me off, telling me to book a blood test and to wait and see (as if waiting and seeing since September wasn't quite enough waiting and seeing...)
I injected again on Monday night, and literally within an hour, my throat swelled and the white nodules were back all across the back of my mouth. This is surely not a coincidence. I spoke to the nurses again the next morning. It appears that 8 years is a long time to be injecting Avonex and my body might be developing some sort of a reaction to it. The told me to stop injecting immediately and we'll see where we are in a month and if things clear up.
I suppose this is progress. It's possible that my MS might strike in the period when I'm not covered.... but if it gives my body a chance to finally shake off this bloody infection or reaction or whatever it is, then that's got to be a risk worth taking, hasn't it?
This coming week will be the first time in eight years that I haven't injected myself. I've injected in a camper van in Australia and New Zealand, in a tent in Africa, in Cambodia, in Vietnam, in Canada... all over the world in all sorts of places. But next week, it stops.
What a palaver.
Meanwhile, as long as this has stayed out of my lungs.... marathon training has continued as normal. Because, you know...