This evening I pushed against my illness-addled brain to try to sit in on the fortnightly Zoom call with the Three Rings dev team.
Unfortunately it seems like the primary symptom of my cold is an inability to string words together.
At one point, I apologised to by colleague “Beff” (I meant “Bev”, but I had just been talking about “Geoff”) that I couldn’t work out how to stop “scaring my screen” (well, I suppose
Halloween is coming up…). Then, realising my mistake, explained that it was a bit of a “ting-twister”.
I never thought about taking the offer, but last week took a toll on all of us. It was a weird and sad week. So the Woo DM worked not only as it usually does, a week to bond with
colleagues, have fun and collaborate in person. It was also one hundred times more energizing than it usually is. It had that little taste of “we are here because we believe in
this. LFG!!!”. A togetherness that feels special. We could talk, discuss, and share our concerns, opinions, memories and new ideas for the future of Woo and WordPress.
…
That’s a good summary of the week, I feel. It was weird and sad, especially to begin with, but it grew into something that was energising and hopeful. There was, in particular, a
certain solidarity, of us being the ones who stayed. It’s great to be reminded that my experience is shared.
Whether or not somebody chose to stay for the same reason as me, or as Rosie, it felt like a bonding experience to be among those who made that same decision. I’m glad we got to have
this meetup (even though I’m feeling a bit run-down by a combination of exhaustion, jetlag, and – principally – some kind of stomach bug I’ve contracted
somewhere along the way, ugh).
If you wanna bend a stream of electrons travelling at nearly the speed of light, you’re gonna need a lot of big magnets.
This started on Saturday with a trip to the Harwell Campus, whose first open day in eight years provided a rare opportunity for us to get up
close with cutting edge science (plus some very kid-friendly and accessible displays) as well as visit the synchrotron at Diamond Light Source.
It’s hard to convey the scale of the thing; turns out you need a big ol’ ring if you want to spin electrons fast enough to generate a meaningful amount of magnetobremsstrahlung
radiation.
The whole thing’s highly-recommended if you’re able to get to one of their open days in the future, give it a look. I was particularly pleased to see how enthused about science it made
the kids, and what clever questions they asked.
For example: the 7-year-old spent a long time cracking a variety of ciphers in the computing tent (and even spotted a flaw in one of the challenge questions that the exhibitors then had
to hand-correct on all their handouts!); the 10-year-old enjoyed quizzing a researcher who’d been using x-ray crystallography ofproteins.
Medicine
And then on Sunday I finally got a long-overdue visit to my nearest spirometry specialist for a suite of experiments to try to work out what exactly is wrong with my lungs, which
continue to be a minor medical mystery.
“Once you’ve got your breath back, let’s fill you with drugs and do those experiments again…”
It was… surprisingly knackering. Though perhaps that’s mostly because once I was full of drugs I felt briefly superpowered and went running around the grounds of the wonderfully-named
Brill Hill Windmill with the dog until was panting in pretty much the way that I might normally have been,
absent an unusually-high dose of medication.
It’s got a graph; that makes it science, right? (I’m ignoring those party political histograms that outright lie about how narrow the margins are…)
For amusement purposes alone, I’d be more-likely to recommend the first day’s science activities than the second, but I can’t deny that it’s cool to collect a load of data about your
own body and how it works in a monitorable, replicable way. And maybe, just maybe, start to get to the bottom of why my breathing’s getting so much worse these last few years!
This week, I received a ~240V AC electric shock. I can’t recommend it.
As you may have guessed based on photos in previous posts, our house is currently wrapped in a convenient climbing frame scaffolding.
We’re currently having our attic converted, so we’ve had some electricians in doing the necessary electrical wiring. Shortly after they first arrived they discovered that our existing electrics were pretty catastrophic, and needed to make a few changes including a new fusebox and disconnecting the
hilariously-unsafe distribution board in the garage.
The owner before last of our house worked for SSEN and did all of his own wiring, and left us a rats’ nest
of spaghetti wiring that our electricians described as being unlike anything they’d ever seen before. Also a literal rats’ nest under the decking, but we got rid of that already.
After connecting everything new up they began switching everything back on and testing the circuits… and we were surprised to hear arcing sounds and see all the lights flickering.
The electricians switched everything off and started switching breakers back on one at a time to try to identify the source of the fault, reasonably assuming that something was shorting
somewhere, but no matter what combination of switches were enabled there always seemed to be some kind of problem.
You know those escape room puzzles where you have to get the right permutation of switch combinations? This was a lot less fun than that.
Noticing that the oven’s clock wasn’t just blinking 00:00 (as it would after a power cut) but repeatedly resetting itself to 00:00, I pointed this out to the electricians as an
indicator that the problem was occurring on their current permutation of switches, which was strange because it was completely different to the permutation that had originally exhibited
flickering lights.
I reached over to point at the oven, and the tip of my finger touched the metal of its case…
Blam! I felt a jolt through my hand and up my arm and uncontrollably leapt backwards across the room, convulsing as I fell to the floor. I gestured to the cooker and
shouted something about it being live, and the electricians switched off its circuit and came running with those clever EM-field sensor
pens they use.
Somehow the case of the cooker was energised despite being isolated at the fusebox? How could that be?
Buy one ECG appointment. Get a free partial chest-shaving free!
I missed the next bits of the diagnosis of our electrical system because I was busy getting my own diagnosis: it turns out that if you get a mains electric shock – even if you’re
conscious and mobile – the NHS really want you to go to A&E.
At my suggestion, Ruth delivered me to the Minor Injuries unit at our nearest hospital (I figured that what I had wasn’t that
serious, and the local hospital generally has shorter wait times!)… who took one look at me and told me that I ought to be at the emergency department of the bigger hospital over the
way.
The first hospital were kind enough to hook me up to an ECG before sending me on to the A&E department. It indicated possible cardiac arrhythmia in the sinus node – basically: my heart’s natural pacemaker was firing somewhat
irregularly – which is kinda what you’d expect from an AC zap.
Off at the “right” hospital I got another round of ECG tests, some blood tests (which can apparently be used to diagnose muscular
damage: who knew?), and all the regular observations of pulse and blood pressure and whatnot that you might expect.
And then, because let’s face it I was probably in better condition than most folks being dropped off at A&E, I was left to
chill in a short stay ward while the doctors waited for test results to come through.
Apparently our electricity meter blew itself up somewhere along the way, leaving us with even less of a chance to turn the power back on again.
Meanwhile, back at home our electricians had called-in SSEN, who look after the grid in our area. It turns
out that the problem wasn’t directly related to our electrical work at all but had occurred one or two pylons “upstream” from our house. A fault on the network had, from the sounds of
things, resulted in “live” being sent down not only the live wire but up the earth wire too.
That’s why appliances in the house were energised even with their circuit breakers switched-off: they were connected to an earth that was doing pretty-much the opposite of what an earth
should: discharging into the house!
For the next day or so, a parade of linesmen climbed up and down all the pylons in the field behind our house, hunting for the source of the problem.
It seems an inconceivable coincidence to me that a network fault might happen to occur during the downtime during which we happened to have electricians working, so I find myself
wondering if perhaps the network fault had occurred some time ago but only become apparent/dangerous as a result of changes to our household configuration.
I’m no expert, but I sketched a diagram showing how such a thing might happen (click to embiggen). I’ll stress that
I don’t know for certain what went wrong: I’m just basing this on what I’ve been told my SSEN plus a little
speculation:
By the time I was home from the hospital the following day, our driveway was overflowing with the vehicles of grid engineers to the point of partially blocking the main street outside
(which at least helped ensure that people obeyed our new 20mph limit for a change).
We weren’t even able to get our own car onto our driveway when we got back from the hospital.
Two and a half days later, I’m back at work and mostly recovered. I’ve still got some discomfort in my left hand, especially if I try to grip anything tightly, but I’m definitely moving
in the right direction.
It’s actually more-annoying how much my chest itches from having various patches of hair shaved-off to make it possible to hook up ECG electrodes!
The actual conversation at this point seemed to consist of the guy at the top of the pole confirming that yes, he really had disconnected the live wire from our house, and
one at the bottom saying he can’t have because he’s still seeing electricity flowing. Makes sense now, doesn’t it?
Anyway, the short of it is that I recommend against getting zapped by the grid. If it had given me superpowers it might have been a different story, but I guess it just gave me
sore muscles and a house with a dozen non-working sockets.
We’d intended to actually go to the Isle of Man, even turning up at Gatwick Airport six hours before our flight and working at Pret in order to optimally fit around our
workdays.
It’s (approximately) our 0x10th anniversary1,
and, struggling to find a mutually-convenient window in our complex work schedules, we’d opted to spend a few days exploring the Isle of Man. Everything was fine, until we were aboard
the ‘plane.
As the last few passengers were boarding, putting their bags into overhead lockers, and finding their seats, Ruth observed that out on the tarmac, bags were being removed
from the aircraft.
Once everybody was seated and ready to take off, the captain stood up at the front of the ‘plane and announced that it had been cancelled2.
The Isle of Man closes, he told us (we assume he just meant the airport) and while they’d be able to get us there before it did, there wouldn’t be sufficient air traffic
control crew to allow them to get back (to, presumably, the cabin crews’ homes in London).
To add insult to injury: even though the crew clearly knew that the ‘plane would be cancelled before everybody boarded, they waited until we were all aboard to tell us then
made us wait for the airport buses to come back to take us back to the terminal.
Back at the terminal we made our way through border control (showing my passport despite having not left the airport, never mind the country) and tried to arrange a rebooking,
only to be told that they could only manage to get us onto a flight that’d be leaving 48 hours later, most of the way through our mini-break, so instead we opted for a refund and gave
up.3
After dinner at the reliably-good Ye Old Six
Bells in Horley, down the road from Gatwick Airport, we grumpily made our way back home.
We resolved to try to do the same kinds of things that we’d hoped to do on the Isle of Man, but closer to home: some sightseeing, some walks, some spending-time-together. You know the
drill.
There’s evidence on the Isle of Man of Roman occupation from about the 1st century BCE through the 5th century CE, so we found a
local Roman villa and went for a look around.
A particular highlight of our trip to the North Leigh Roman Villa – one of those “on your doorstep so you never go” places – was when the audio tour advised us to beware of the snails
when crossing what was once the villa’s central courtyard.
At first we thought this was an attempt at humour, but it turns out that the Romans brought with them to parts of Britain a variety of large edible snail – helix pomatia –
which can still be found in concentration in parts of the country where they were widely farmed.4
Once you know you’re looking for them, these absolute unit gastropods are easy to spot.
There’s a nice little geocache near the ruin, too, which we were able to find on our way back.
Before you think that I didn’t get anything out of my pointless hours at the airport, though, it turns out I’d brought home a souvenier… a stinking cold! How about that for efficiency:
I got all the airport-germs, but none of the actual air travel. By mid-afternoon on Tuesday I was feeling pretty rotten, and it only got worse from then on.
I felt so awful on Wednesday that the most I was able to achieve was to lie on the sofa feeling sorry for myself, between sessions of The Legend of Zelda: Tears of the
Kingdom.
I’m confident that Ruth didn’t mind too much that I spent Wednesday mostly curled up in a sad little ball, because it let her get on with applying to a couple of jobs she’s interested
in. Because it turns out there was a third level of disaster to this week: in addition to our ‘plane being cancelled and me getting sick, this week saw Ruth made redundant as her
employer sought to dig itself out of a financial hole. A hat trick of bad luck!
Sniffle. Ugh.
As Ruth began to show symptoms (less-awful than mine, thankfully) of whatever plague had befallen me, we bundled up in bed and made not one but two abortive attempts at watching a film
together:
Spin Me Round, which looked likely to be a simple comedy that wouldn’t require much effort
by my mucus-filled brain, but turned out to be… I’ve no idea what it was supposed to be. It’s not funny. It’s not dramatic. The characters are, for the most part, profoundly
uncompelling. There’s the beginnings of what looks like it was supposed to be a romantic angle but it mostly comes across as a creepy abuse of power. We watched about half and gave
up.
Ant-Man and the Wasp:
Quantumania, because we figured “how bad can a trashy MCU sequel be anyway; we know what to expect!” But we
couldn’t connect to it at all. Characters behave in completely unrealistic ways and the whole thing feels like it was produced by somebody who wanted to be making one of the
new Star Wars films, but with more CGI. We watched about half and gave up.
As Thursday drew on and the pain in my head and throat was replaced with an unrelenting cough, I decided I needed some fresh air.
The dog needed a walk, too, which is always a viable excuse to get out and about.
I find myself wondering if (despite three jabs and a previous infection) I’ve managed to contract covid again, but I haven’t found the inclination to take a test. What would I do differently if I do have it, now, anyway? I feel like we
might be past that point in our lives.
All in all, probably the worst anniversary celebration we’ve ever had, and hopefully the worst we’ll ever have. But a fringe benefit of a willingness to change bases is that we can
celebrate our 10th5 anniversary next year, too.
Here’s to that.
Footnotes
1 Because we’re that kind of nerds, we count our anniversaries in base 16
(0x10 is 16), or – sometimes – in whatever base is mathematically-pleasing and gives us a nice round number. It could be our 20th anniversary, if you prefer octal.
2 I’ve been on some disastrous aeroplane journeys before, including one just earlier this
year which was supposed to take me from Athens to Heathrow, got re-arranged to go to Gatwick, got
delayed, ran low on fuel, then instead had to fly to Stansted, wait on the tarmac for a couple of hours, then return to Gatwick (from which I travelled – via Heathrow –
home). But this attempt to get to the Isle of Man was somehow, perhaps, even worse.
3 Those who’ve noticed that we were flying EasyJet might rightly give a knowing nod at
this point.
4 The warning to take care not to tread on them is sound legal advice: this particular
variety of snail is protected under the Wildlife and Countryside Act 1981!
5 Next year will be our 10th anniversary… in base 17. Eww, what the hell is base 17 for
and why does it both offend and intrigue me so?
I wasn’t supposed to be here. I was supposed to be on the Isle of Man with my partner, celebrating our 0x10th anniversary. But
this week’s been a week of disasters: my partner lost her job, our plane to the Isle of Man got cancelled, and then I got sick (most-likely, I got to catch airport germs from people I
got to sit next to on an aircraft which was then cancelled before it had a chance to take off). So mostly this week I’ve been sat at home playing video games.
But the dog needed a walk, and my partner needed to go to the supermarket, so I had her drop me and the geopooch off in West Witney to find the hashpoint and then walk to meet them
after she’d collected the shopping. I couldn’t find my GPSr, so I used my phone, and it was reporting low accuracy until I rebooted it, by which time I’d walked past the hashpoint and had to
double-back, much to the doggo’s confusion.
I reached the hashpoint at 14:16 BST (and probably a few points before than, owing to my navigation failure). I needed to stand
very close to the fence to get within the circle of uncertainty, but at least I didn’t have to reach through and into the school grounds.
Over the last three or four years I’ve undertaken a couple of different rounds of psychotherapy. I liken the experience to that of spotting constellations in the night sky.
That’s probably the result of the goal I stated when going in to the first round: I’d like you to help while I take myself apart, try to understand how I work, and then put myself
back together again.1I’m trying to connect the dots between who-I-once-was and who-I-am-now and find causal influences.
As I’m sure you can imagine: with an opening statement like that I needed to contact a few different therapists before I found one who was compatible with my aims2.
But then, I was always taught to get three quotes before hiring a professional.
Constellations are necessarily subjective. It’s always pleased me to think about how Orion the Hunter, one of the Northern hemisphere’s most-recognisable Winter visitors, was
interpreted by the Lakota people to represent a bison, and some Indian traditions see it as a deer.
It’s that “connecting the dots” that feels like constellation-spotting. A lot of the counselling work (and the “homework” that came afterwards) has stemmed from ideas like:
This star represents a moment in my past.
This star represents a facet of my identity today.
If we draw a line from one to the other, what does the resulting constellation look like?
I suppose that what I’ve been doing is using the lens of retrospection to ask: “Hey, why am I like this? Is this part of it? And what impact did that have on
me? Why can’t I see it?”
When you’re stargazing, sometimes you have to ask somebody to point out the shape in front of you before you can see it for yourself.
A better writer would make an allusion to looking into one’s past through the symbolism of looking into the Universe’s past, but I’m not that writer.
I haven’t yet finished this self-analytical journey, but I’m in an extended “homework” phase where I’m finding my own way: joining the dots for myself. Once somebody’s helped you find
those constellations that mean something to you, it’s easier to pick them out when you stargaze alone.
Footnotes
1 To nobody’s surprise whatsoever, I can reveal that ever since I was a child I’ve enjoyed
taking things apart to understand how they work. I wasn’t always so good at putting them back together again, though. My first alarm clock died that way, as did countless small
clockwork and electronic toys.
2 I also used my introductory contact to lay out my counselling qualifications,
in case they were a barrier for a potential therapist, but it turns out this wasn’t as much of a barrier as the fact that I arrived with a concrete mandate.
I managed to dodge infection for 922 days of the Covid pandemic1,
but it caught up with me eventually.
Well, shit.
Frankly, it’s surprising that it took this long. We’ve always been careful, in accordance with guidance at any given time, nd we all got our jabs and boosters as soon as we were able…
but conversely: we’ve got school-age children who naturally seem to be the biggest disease vectors imaginable. Our youngest, in fact, already had Covid, but the rest of us
managed to dodge it perhaps thanks to all these precautions.
The vaccine provide protection, but it’s not a magical force-field.
Luckily I’m not suffering too badly, probably thanks to the immunisation. It’s still not great, but I dread to think how it might have been without the benefit of the jab! A minor fever
came and went, and then it’s just been a few days of coughing, exhaustion, and… the most-incredible level of brain-fog.
Today, for example, I completey blanked the word “toilet” and struggled for some time to express to the dog why I’d brought her into the garden, while she stared at me expectantly.
I’ve taken the week off work to recover, which was a wise choice. As well as getting rest, it’s meant that I’ve managed to avoid writing production code with my addled brain! Instead,
I’ve spent a lot of time chilling in bed and watching all of the films that I’d been meaning to! This week, I’ve watched:
Peggy Sue Got Married (y’know, that other mid-1980s movie about time travel and being a teenager in the 1950s). It was okay; some bits of the direction were
spectacular for its age, like the “through the mirror” filming.
Fall. I enjoyed this more than I expected to. It’s not great, but while I spent most of the time complaining about the
lack of believability in the setting and the characters’ reactions, the acting was good and the tension “worked”: it was ocassionally pretty vertigo-inducing, and that’s not just
because I’ve been having some Covid-related dizziness!
RRR. Oh my god this Tollywood action spectacle was an adventure. At one point it’s a bromantic buddy comedy, then later
there’s a dance-off, then for a while there’s a wonderful “even language can’t divide us” romance, but then later a man picks up a motorcycle with one hand and uses it to beat up an
entire army, and somehow it all feels like it belongs together. The symbolism’s so thick you can spread it (tl;dr: colonialism
bad), but it’s still a riot of a film.
Cyrano, which I feel was under-rated but that could just be that I have a soft spot for the story… and a love of musical
theatre.
Also, at times when I didn’t think my brain had the focus for something new, I re-watched Dude, Where’s My Car? because
I figured a stoner comedy that re-replains the plot every 20 minutes or so was about as good as I could expect my brain to handle at the time, and Everything Everywhere All At Once which I’ve now seen three times and loved every single one: it’s one of my favourite films.
See, I’m fine! (Feel like I’ve spent a lot of time lying here, this week.)
Anyway: hopefully next week I’ll be feeling more normal and my poor Covid-struck brain can be trusted with code again. Until then: time to try to rest some more.
Footnotes
1 Based on the World Health Organisation’s declaration of the outbreak being a pandemic on
11 March 2020 and my positive test on 19 September 2022, I stayed uninfected for two years, six months, one week, and one day. But who’s counting?
I’ve been having a tough time these last few months. Thanks to COVID, I’m sure I’m not alone in that.
Times are strange, and even when you get a handle on how they’re strange they can still affect you: lockdown stress can quickly magnify anything else you’re already going
through.
We’ve all come up with our own coping strategies; here’s part of mine.
Only people who are highly-allergic to pine needles normally look like this when they’re shopping for a Christmas tree.
These last few months have occasionally seen me as emotionally low as… well, a particularly tough spell a decade ago. But this time around I’ve
benefited from the self-awareness and experience to put some solid self-care into practice!
By way partly of self-accountability and partly of sharing what works for me, let me tell you about the silly mnemonic that reminds me what I need to keep track of as part of each day:
GEMSAW! (With thanks to Amy Blankson for, among other things, the idea of this kind of acronym.)
Because it’s me, I’ve cited a few relevant academic sources for you in my summary, below:
Gratitude
Taking the time to stop and acknowledge the good things in your life, however small, is associated with lower stress levels (Taylor, Lyubomirsky & Stein, 2017) to a degree that can’t just be explained by the placebo effect (Cregg
& Cheavens, 2020).
Frankly, the placebo effect would be fine, but it’s nice to have my practice of trying to intentionally recognise something good in each day validated by the science too!
Exercise
I don’t even need a citation; I’m sure everybody knows that aerobic exercise is associated with reduced risk and severity of depression: the biggest problem comes from the
fact that it’s an exceptionally hard thing to motivate yourself to do if you’re already struggling mentally!
But it turns out you don’t need much to start to see the benefits (Josefsson, Lindwall & Archer,
2014): I try to do enough to elevate my heart rate each day, but that’s usually nothing more than elevating my desk to standing height, putting some headphones on, and dancing
while I work!
Warming up. Things only get nuts when the bass drops, but I’ll spare you having to watch that.
Meditation/Mindfulness
Understandably a bit fuzzier as a concept and tainted by being a “hip” concept. A short meditation break or mindfulness exercise might be verifiably therapeutic, but more
(non-terrible) studies are needed (Vonderlin, Biermann, Bohus & Lyssenko 2020). For me, a 2-5 minute
meditation break punctuates a day and feels like it contributes towards the goal of staying-sane-in-challenging-times, so it makes it into my wellbeing plan.
Maybe it’s doing nothing. But I’m not losing much time over it so I’m not worried.
Sunlight
During my 20s I gradually began to suffer more and more from “winter blues”. Nobody’s managed to make an argument for the underlying cause of seasonal affective disorder that
hasn’t been equally-well debunked by some other study. Small-scale studies often justify light therapy (e.g. Lam, Levitan & Morehouse 2006) but it’s possibly
no-more-effective than a placebo at scale (SBU 2007).
Since my early 30s, I’ve always felt better to get myself 30 minutes of lightbox on winter mornings (I use one of these bad
boys). I admit it’s possible that the benefits are just the result of tricking my brain into waking-up more promptly and therefore feeing like I’m being more-productive with my
waking hours! But either way, getting some sunlight – whether natural or artificial – makes me feel better, so it makes it onto my daily self-care checklist.
10 minutes of overhead, unoccluded sunlight is the minimum therapeutic dose. That translates to about 30 minutes of winter sun at my latitude or 10,000 lux full-spectrum sunlamp.
Acts of kindness
It’s probably not surprising that a person’s overall happiness correlates with their propensity for kindness (Lyubomirsky, King & Diener 2005). But what’s more interesting is that the causal link can be “gamed”. That is: a
deliberate effort to engage in acts of kindness results in increased happiness (Buchanan & Bardi
2010)!
Beneficial acts of kindness can be as little as taking the time to acknowledge somebody’s contribution or compliment somebody’s efforts. The amount of effort it takes is far
less-important for happiness than the novelty of the experience, so the type of kindness you show needs to be mixed-up a bit to get the best out of it. But demonstrating kindness
helps to make the world a better place for other humans, so it pays off even if you’re coming from a fully utilitarian perspective.
Writing
I write a lot anyway, often right here, and that’s very-definitely for my own benefit first and foremost. But off the back of
some valuable “writing therapy” (Baikie
& Wilhelm 2005) I undertook earlier this year, I’ve been continuing with the simpler, lighter approach of trying to no more than three sentences about something that’s had an
impact on me that day.
As an approach, it doesn’t help everybody (Zachariae 2015), but writing a little about your day – not even
about how you feel about it, just the facts will do (Koschwanez, Robinson, Beban, MacCormick, Hill, Windsor, Booth, Jüllig &
Broadbent 2017; fuck me that’s a lot of co-authors) – helps to keep you content, and I’m loving it.
Despite the catchy acronym (Do I need to come up with a GEMSAW logo?
I’m pretty sure real gemcutting is actually more of a grinding process…) and stack of references, I’m not actually writing a self-help book; it just sounds like I am.
I don’t claim to be an authority on anything beyond my own head, and I’m not very confident on that subject! I just wanted to share with you something that’s been working
pretty well at keeping me sane for the last month or two, just in case it’s of any use to you. These are challenging times; do what you need to find the happiness you can, and
hang in there.
This is Lorcán. Lorcán has cystic fibrosis (CF) Lorcán is two years old. Lorcán has been fighting a potentially life shortening lung infection for the last six months and treatment
isn’t working.
There is an amazing drug called Orkambi made by Vertex that is not funded on the NHS, this drug could help Lorcán and thousands of others. Over 240 people in the U.K. have died
waiting for it to become available. Vertex and the U.K. government are letting people with CF die because of a disagreement over cost.
Parents have had to find an alternative way of getting these drugs for their children and the Cystic Fibrosis Buyers
Club have found a generic copy of the drug that individuals can legally import, it is a fifth of the cost. This is however still beyond what we can pay.
…
I’ve previously shared (one, two) content about my friend Jen‘s two-year-old son Lorcán, who suffers from cystic fibrosis, as well as joining in the
#strawfiechallenge earlier this year. A particular aim of Jen has been to get access to a drug that could add decades to her son’s life, but which isn’t being made available on the
NHS. Running out of options to get access to medicine that could dramatically improve her kid’s quality of life and prognosis,
she’s now set up a GoFundMe and is soliciting donations.
#strawfiechallenge – 1 minute of simulated breathing difficulty in recognition of sufferers of cystis fibrosis
Today I’m attaching a clothes peg to my nose and breathing through a straw for 60 seconds. As I won’t be able to talk while I’m doing this, I’ll type an explanation why:
Like most people, I’ve spent most of my life lucky enough to not really know anything about cystic fibrosis. I first really became aware of it when my friend Jen‘s son Lorcán was diagnosed with it (you may remember I shared a video of hers
previously).
It’s a lifelong disorder with no known cure.
It’s a genetic disorder, and as many as one in every 25 people carries the gene that can cause it. Inherit two genes and you’re a sufferer. Among other symptoms, it causes frequent lung
infections and difficulty breathing.
I’m taking part in the #strawfiechallenge as an exercise in appreciating how difficult it can be to cope with reduced lung function. A new drug, Orkambi, is helping to extend the lives
of sufferers in other countries around the world. But it’s not yet available in the UK. :-(
CF sufferers want #OrkambiNow. They need your politicians to act.
Bitesize introduction to the (mostly-unspoken) history of the last century of sanitary products. It wasn’t so long ago – still within living memory! – that doctors’ advice was not to
exercise during your period and that sanitary products had to be packaged in plain containers so as not to embarrass buyers nor sales assistants. Humans have had a long and complicated relationship with menstruation but the largest and fastest period (no pun intended) of cultural
change has been only recently, and we now live in a world divided by a huge diversity of opinion and philosophy on the subject. This video covers only a fraction of the story of the
recent (Western) social change, but it’s still a strong reminder of how far we’ve come as a culture.
An increasing number of people are reportedly suffering from an allergy to the meat and other products of nonhuman mammals, reports Mosaic Science this week, and we’re increasingly confident that the cause is
a sensitivity to alpha-gal (Galactose-alpha-1,3-galactose), a carbohydrate produced in the bodies of virtually
all mammals except for us and our cousin apes, monkeys, and simians (and one of the reasons you can’t transplant tissue from pigs to humans, for example).
The lone star tick (You call that a star, tick? Looks like a blob to me!), one of several vectors for alpha-gal sensitivity.
The interesting thing is that the most-common cause of alpha-gal sensitivity appears to be the bite of one of a small number of species of tick. The most-likely hypothesis seems to be
that being bitten by such a tick after it’s bitten e.g. deer or cattle may introduce that species’ alpha-gal directly to your bloodstream. This exposure triggers an immune response
through all future exposure, even if it’s is more minor, e.g. consuming milk products or even skin contact with an animal.
That’s nuts, isn’t it? The Mosaic Science article describes the reaction of Tami McGraw, whose symptoms began in 2010:
[She] asked her doctor to order a little-known blood test that would show if her immune system was reacting to a component of mammal meat. The test result was so strongly positive,
her doctor called her at home to tell her to step away from the stove.
That should have been the end of her problems. Instead it launched her on an odyssey of discovering just how much mammal material is present in everyday life. One time, she took
capsules of liquid painkiller and woke up in the middle of the night, itching and covered in hives provoked by the drug’s gelatine covering.
When she bought an unfamiliar lip balm, the lanolin in it made her mouth peel and blister. She planned to spend an afternoon gardening, spreading fertiliser and planting flowers, but
passed out on the grass and had to be revived with an EpiPen. She had reacted to manure and bone meal that were enrichments in bagged compost she had bought.
Cats can eat bacon. But some cat owners can’t. More bacon for the cats? The plot thickens. Also: haven’t used this picture in
a while, have I?
Of course, this isn’t the only nor even the most-unusual (or most-severe) animal-induced allergy-to-a-different-animal we’re aware of. The hilariously-named but terribly-dangerous
Pork-Cat syndrome is caused, though we’re not sure how, by exposure to cats and
results in a severe allergy to pork. But what makes alpha-gal sensitivity really interesting is that it’s increasing in frequency at quite a dramatic rate. The culprit? Climate change.
Probably.
It’s impossible to talk to physicians encountering alpha-gal cases without hearing that something has changed to make the tick that transmits it more common – even though they don’t
know what that something might be.
…
“Climate change is likely playing a role in the northward expansion,” Ostfeld adds, but acknowledges that we don’t know what else could also be contributing.
An average serving of beef contributes almost 8kg of greenhouse gases, compared to around 1kg for chicken. Thanks, Beeb (click through for full article).
A little dated, perhaps: I’m sure that nobody needs to be told nowadays that one of the biggest things a Westerner can do to reduce their personal carbon footprint (after from breeding less or not at all, which I maintain is the biggest, or avoiding air
travel, which Statto argues for) is to reduce or refrain from consumption of meat (especially pork and beef) and dairy products.
Indeed, environmental impact was the biggest factor in my vegetarianism (now weekday-vegetarianism) for
the last eight years, and it’s an outlook that I’ve seen continue to grow in others over the same period.
Seeing these two stories side-by-side in my RSS reader put the Gaia hypothesis in my mind.
If you want a pop-culture-grade introduction to the Gaia hypothesis in the context of climate change, this SMBC comic does the job, and does so almost with fewer words than this
caption explaining that it does so.
If you’re not familiar with the Gaia hypothesis, the basic idea is this: by some mechanism, the Earth and all of the life on it act in synergy to maintain homeostasis. Organisms not
only co-evolve with one another but also with the planet itself, affecting their environment in a way that in turn affects their future evolution in a perpetual symbiotic relationship
of life and its habitat.
Its advocates point to negative feedback loops in nature such as plankton blooms affecting the weather in ways that inhibit
plankton blooms and to simplistic theoretical models like the Daisyworld Simulation
(cute video). A minority of its proponents go a step further and describe the Earth’s changes teleologically, implying a conscious Earth with an intention to
protect its ecosystems (yes, these hypotheses were born out of the late 1960s, why do you ask?). Regardless, the essence is the same: life’s effect on its environment affects the
environment’s hospitality to life, and vice-versa.
There’s an attractive symmetry to it, isn’t there, in light of the growth in alpha-gal allergies? Like:
Today – climate change causes ticks to spread more-widely and bite more humans.
Tomorrow – tick bites cause humans to consume less products farmed from mammals?
Both my appreciation and my rejection of Gaia Hypothesis can probably be traced to me playing way too much SimEarth as a
teenager. Here’s my Daisyworld in state of equilibrium, because I haven’t yet gotten bored and spawned dinosaurs to eat all of the daisies.
That’s not to say that I buy it, mind. The Gaia hypothesis has a number of problems, and – almost as bad – it encourages a complacent “it’ll all be okay, the Earth will fix itself”
mindset to climate change (which, even if it’s true, doesn’t bode well for the humans residing on it).
But it was a fun parallel to land in my news reader this morning, so I thought I’d share it with you. And, by proxy, make you just a little bit warier of ticks than you might have been
already. /shudders/
My friend Jen‘s been blogging and vlogging about cystic fibrosis – which her young son Lorcán has – in order to raise awareness of
it and of a promising new treatment, Orkambi, which would very likely dramatically improve the lifespan and health of chidren like Lorcán… were it available on the NHS. For more
information, including petitions you can sign, see their blog Little Fierce One.
