Egarag

I had a bizarre dream yesterday about riding a horse down the central motorway. I can’t remember if in the dream it was also a bike, or if it turned into a bike (or if a bike had turned into it) but it was a horse – And of course, this got me thinking about the eternal horse-bike comparisons. You care for them. You spend long hours with them, travelling, otherwise alone (I powerfully suspect that a modern Aslög, invited to meet Ragnar “Neither alone nor accompanied, either fasting nor eating, neither dressed nor undressed” would arrive with a motorcycle, a cup of tea, and wearing full leathers but no helmet). You feel like they have a lot of personality but, as with a horse, a lot of that personality is what you project onto them, or expect, or is a non-human behaviour given a human motivation (I insist that my beloved GZ, which hasn’t been able to be moved due to an electrical fault since the day that I passed my full test, is sulking). They’re valuable, beloved companions to their riders even if to a total stranger they’re “Just a means of transport”. They range from barely-clinging-to-life and worked to the bone, to pampered near-pets, to the core of their owner’s livelihood.

The big place where the comparison breaks though, is maintenance. Obviously, you have to keep both of them in their favoured environments (Actually, warm and dry with low salinity and not too much ambient dust or spores is ideal for both, as is giving the option to take the weight off their heels, in the form of soft straw or artificial bedding for a horse or a paddock stand for a bike, and a fleece blanket to prevent scrapes and surface chill and moisture for both of them… Hm) and you need to fuel or feed both of them commensurate to how much work they do (With the horse obviously doing work just to keep respiring – A horse’s engine basically constantly idles – and the bike should either be left with a full tank or winterised so that it doesn’t rust up) but actual maintenance – Vet med or service and repairs – is totally different. On a horse, leaving it with a problem is cruel. On a bike, as long as you don’t try to ride it, and it’s kept in those ideal conditions, it won’t get worse.

I’m not saying that every part of a bike has already reached the minimum of molecular complexity and thus the heat death of the universe – You can, literally, make matters worse – but you probably can’t do it casually, if you’ve taken the time to read ahead in your Haynes manual and apply a bit of common sense. Bikes may have diaphragms that can perforate and crush washers that can deform and fuses that can pop, but most parts of the machine, once taken off and cleaned and bent back into shape, are pretty durable and as long as they’re not either deliberately broken or corroded beyond use by time on the road, they can be fixed. If the worst comes to the worst, they can be replaced, piece by piece, either from the factory as a legacy part, or as parts from a donor bike. If you (and I know people who have found this) tighten up the mixture screw in a carburettor the whole way, you’ll only have to replace that screw. If you go off half-cocked and try to ride it after you’ve done this, you will literally blow the carbs off the engine and probably destroy either the carbs or the engine or both.

Effectively, if you have a problem, you notice the problem, and you fix the problem, you can’t go wrong. If you need to stop in the middle of disassembling the entire machine, you can just throw a sheet over it at night and leave it for weeks at a time, provided you’re in a relatively clean, dry, temperate environment.

Working on a bike, the worst that can happen is that you have to replace a component. Blow a fuse, shear a screw – You’ll be able to buy new ones. Strip the thread out of a socket – You can do amazing things with blobs of hot metal and the appropriate tap. Even go as far as fouling up the inside of a cylinder – It’ll take skill and money, but you can re-bore it and keep the engine block. My own EN was condemned in 2002 with a structurally corroded frame – Fifteen years later, given a strip-back, structural welding, a few new support bars, and a nice glossy black powdercoat, it’s thriving. It sat SORNed for at least two years at some point. You can’t SORN a horse. At worst, the component will be a large one – Like an engine, or an entire wiring harness. There are people who’ve brought bikes back to life from nothing more than an empty frame, a photograph, and a collection of classified ads in their local bike magazine. There are bikes where every component has been changed enough times that they’ve been handed a Single Vehicle Assessment form and told to re-register as a new vehicle.

As one of my machines is currently sitting awaiting a cure for carb icing (The effect of the venturi and the resulting vacuum, along with rapid heat transfer, in producing ice crystals under certain atmospheric conditions would be fascinating if it didn’t also cause my bike to drop to one cylinder at high speed and make a noise like tinsel being used as a carwash) and the other is awaiting a pickup so that I can work on it in the warm and dry, it is extremely reassuring to me.

Somewhat relatedly; It irks the shit out of me that in British English we only have one word which can in various dialects be used to mean bikehouse, bikehospital, bikegreengrocer, bikepetshop and bikehotel (That’d be a garage, a mechanic’s workshop, a petrol station, a showroom or a used bike dealer, and an underground multi-storey car park, in the dialects that differentiate). So basically, I can get my bike out of the garage and go to the garage on the way to the garage, then garage it there whilst I go to the garage to look at new bikes, then ride it to a garage in the city centre for a cup of coffee before going home and putting it back in the garage.

Totally unrelatedly – I’ve not slept for fifty-odd hours. Bugger insomnia.

The joy of duplicates

Somehow, last week managed to be a great week. An MOT pass for my bike, a theory test pass for me, a stunning red kite sighting at the swim (through that amazing glass roof, that floods the pool with daylight) and a bit of light work done in the garden – meaning that there are now pots of seedlings on every window sill.

And yet, this week, reality has reasserted itself. Having probably my worst episode of suicidal ideation since 2014, when I was sectioned. The physical pain isn’t helping.

I’m trying to spend a bit of everyday in the front garden with my next door neighbour, since that forces me to be out in the sunshine and be supervised. And, if nothing else, the dog likes it.

I also have my second last University deadline in week. The work is inane and I’m struggling to fill the word count but it’s distracting me from the bad thing.

In terms of my earlier scale, this is somewhere between a type III and a type IV on a background of very distressing and insistent type II.

I may have to codify a type IIb, which is “I am keenly, physically, aware of my pulse and where all of my arteries are, for some reason especially the ones in the top of my feet, my femoral, and my radials.” Since I’m getting that too.

I’m safe, just miserable and not sleeping properly. Haven’t got to sleep until gone five for the past few days, and still getting up at about ten. Not good for me, and feels like I have no control over my sleep cycle, which is distressing in its own right, especially since waking up means spending two to three hours lying completely still, semi-conscious and confused and in a lot of pain, before getting the mobility to take my morning medication.

And the pharmacy have been late with my medication again this month. Supposed to be due yesterday, they swear that they sent it off this morning, so I’ll have it by Friday. It’s fine, it’s not like I need my medication to function at all and have anything approaching a quality of life, right?

A damned slab-sided Dutch-built bastard.

Well, that went about as well as expected.

Apparently, all I need to do is be more disciplined about getting up early in the mornings, so that I’ll be tired by an appropriate time at night! Gee golly, I’d not thought of that in the eighteen years that my sleep pattern has been a problem. I tried to explain that it wasn’t a matter of “No, just another five minutes in bed…” it was “Someone can literally be shaking me, slapping me, trying to wake me up with alarms and lights, and I will fall asleep again, standing up, or vomit” but apparently that’s just a matter of willpower.

My exact words were “That’s like telling a depressed person to just smile more.” and Dr Ly looked very sad at that, then came back to it a while later in the conversation to apologise and clarify that she “wasn’t trying to be flippant” so maybe, just maybe, she’s understanding the problem.

And then there was the Stanmore stuff.

UCLH claim that they sent the referral off on-time in July 2014. Stanmore claim never to have recieved it.

My local GP doesn’t have the full copy of the letter (Which I’ll blame on RL, since they’ve got page 1 and page 3, but not page 2, which was on the back of page 1, suggesting that a receptionist failed to check that they’d scanned it all in) but once they do, since the missing page is the one which says “Refer the patient to Stanmore” they’ll be able to backdate my referral to 2014, and hopefully get me bumped up the order.

Good thing I keep my own records, isn’t it?

For the record, this is the “lost” letter. It’s a pretty fucking important one.

letter1cens letter2cens

Look at that list on the second page. Let’s see whose responsibilities they were, and if they’ve been upheld;

  1. Better pacing. More swimming. My responsibility. Carried out.
  2. Work on core strength. My responsibility. Carried out.
  3. Drink more water, eat more salt. My responsibility. Carried out.
  4. Regular physio every 4-6 months. Local Hospital Trust’s responsibility. Not carried out.
  5. CBT for pain. Local Hospital Trust’s responsibility. Carried out.
  6. Stanmore referral. UCLH’s responsibility. Not carried out.

Effectively – The only person to not lose their wicket here was me.

Under the bridge, with my big tall hair.

Today I’ve got a migraine, being reigned in with the power of Zomig and soft green lighting.

On the other hand, my dislocated right hip chose this evening to slingshot back into its socket with an audibule “THUNK”, so it now hurts, but moves properly.

And I’ve printed out my whole month’s sleep schedule to take to the doctor tomorrow.

And I don’t want to go to the doctor tomorrow. I have a migraine.

Key:

M is morphine, d is diazepam, numbers in yellow are sleep, b is bike time, w is alcohol, xx is diphenydramine, s is swimming, T is the hour change.

sleep2

I still find that sawtooth pattern interesting, likewise the way that I seem to always wake up before noon unless I’m really going to be sleep-deprived if I don’t. If I was a betting man, I’d bet something along the lines of “The warming/light cues in the morning are recieved pretty much right, but the ones at night to tell me to switch off don’t work, so my circadian “night” keeps getting moved forwards, and getting shorter”.

Hot Milky Hygiene

Dr L2 was really nice, believed me, trusted that my graphs were accurate… And gave me depressingly unhelpful advice. She also said there was no sleep clinic nearby who could take me.

The advice I’ve got – Start my “going to bed” regime earlier, about 10pm rather than near to midnight, and don’t read after that point. Make my bedroom be purely for sleeping in, not for anything else. She seemed to think that my exercise regime was doing me good, so to stick to that. And to stop taking nytol, which I would rather not be taking anyway. She also advised that I get up every morning at about 9am, as I have been doing anyway.

Let me point out what this means in reality.

This means coming home from my swim, and immediately turning off the lights and lying in the dark. With no chemical assistance to get to sleep. I’d shown her the graph which showed that, sans-nytol, I fall asleep about an hour or an hour or a half later every night, leading to occassionally going to bed in the early hours of the morning. This could mean lying still, in the dark, wide awake, until sunrise.

I am pretty sure that this will nuke my mental health, with nothing to do overnight but either ramble through my favourite daydreams (fun) or descend into one of my more usual depression-anxiety-horror spirals.

Well, it’s a month. I can do anything for a month. And this will make an even more interesting graph. Next appointment is on the 11th, also with Dr L2.

For the curious, here’s the whole first month’s graph:

firstmonth

Oh, and I got a Stanmore update – Dr R did nothing in February, other than to mark down that there’d been a fuckup, and Dr L2 reckoned that they wouldn’t be able to refer me out-of-area until they’d been to the funding committee, and made a case for why I personally deserved funding.

So, yeah, all of the time between July 2014 and now has been wasted. She’s promised to get someone to phone me back, soon, about progress with the funding committee.

I have been in pain, howling, life-wrecking, sanity-shredding pain, for the fourteen months since seeing the hypermobility clinic. In those fourteen months, I’ve become almost entirely housebound, and have only very recently started going out again for anything other than completely essential errands. Those fourteen months, in which I’d been clinging to hope by racing to the door every morning to see if my Stanmore admission had been confirmed, have just been wasted.

Fuck everything with a sharp stick.

Assortment

Two medical-related phone calls yesterday. This is basically me settling in for Winter, when my physical and mental health both go from bad to worse – I take about twice as much pain relief and antispasmodics in winter as I do in summer, my sleep pattern goes to pieces, I eat less often and less well, usually coinciding with my guts slowing down, and I get much more upsetting and graphic suicidal thoughts, not to mention the increase in self-harm for both pain-relief and mental-illness related reasons.

The first was to Rheumatology, to find out what was going on with Stanmore and what was in the letter that had been sent to the GP.

First is the bad news – It looks like I’m having to arrange that Stanmore referral myself, since once again it’s gone around the full cycle of “Nope, nobody knows what it is, or when, or where, or anything.” without making any progress. So I have no idea how to do that, or even if I can do that. By the original reckoning though, it’s three months overdue, which is starting to get ridiculous. I’ve been told to “Just chase them up” with both my GP and Stanmore, which as far as I can tell basically means nothing.

(On this note – Anyone who has any experience in following up referrals, how does one do it? I’ve in-theory got letters from my GP, Rheumy and UCLH Hypermobility all saying that I need to be referred to Stanmore, and all of the above claim to have sent letters to Stanmore to refer me as well, multiple times. So other than just turning up at Stanmore with a suitcase, what do I do next?)

Then is the worse news – The letter that was supposed to say “Plesae give this patient more diazepam” instead says “Thank you for giving them a small amount of diazepam”. These are not the same sentiment, at all.

So I nearly went into my GPs practise and looked like a drug-seeking liar, because I would have said “Dr D said to give me more diazepam” and they would have read the letter and said “No, he didn’t”.

So I’ve booked an appointment with my GP for the 8th, at 16.50, and I had the strangest exchange with the receptionist whilst doing so.

“Who’s it with?” I asked, basically just checking that it wasn’t with Dr Rh, who I personally consider to be not-a-doctor and more like a stale breadcake in a suit.

“It’s with Dr [Name unclear]”

“Who?”

“The Lady Doctor”

Happy at least that this precluded it being with Dr Rh, I hung up. But this baffled me. Of the people in this practice, I’ve got a clear mental picture of about half a dozen of them. Dr Rh is, as I’ve said before, a winnet with legs, Dr Ch is sympathetic and keeps a casual eye on my mental health, Dr R is viscerally horrified by my dislocations but willing to work with me to hack the most efficient possible use of my medication and the system, Dr L is great for mental health but scared of the drugs that I take, Nurse Practitioner Rs is a lovely person and technically very competent, but knows when she’s stumped and isn’t too proud to refer me up the tree when needed. And I don’t think I’ve ever sorted these people by sex. In fact, I can’t think of any situation where I’ve used “Does this person have matching genitals with me?” as a selection criterion.

This is probably all complicated by the fact that I’ve barely ever socialised with people who are the same gender as myself. I don’t seem to consistently feel a gender in the same way as most people do (Though for about three months near the start of this year I felt much more definitely “man!” than usual, which was weird. I usually just use it as a shorthand for “I am a fairly masculine person” or “Most people consider me to be masculine”) so I don’t have that immediate sense of solidarity with people for being the same gender as me that a lot of people seem to get – Especially in fields which are skewed in the direction that makes them a minority (For example, women in physics, men in childcare, etc).

But anyway, that’s all by the by. I’m seeing a doctor on the 8th, it’s about my sleep pattern, and I think it’s a doctor that I’ve not met before, so this could be really complicated.

Glimmers up the sun

I’ve now got enough data in my sleep tracking that I’m starting to see a pattern;

sleeptimeofday

On one hand – It’s slightly chaos, I don’t sleep anywhere near enough, and if I nap during the day I don’t sleep well at night (Wait, being honest – If I don’t sleep well at night, I nap during the day. that’s the direction of causality, not the other way around).

Now, this is also the most stable time of year for my sleep pattern. In winter, the nights are too long, so I often end up completely nocturnal as I fall out of synch with everyone else and don’t have regular enough daylight cues to pull me back into phase with everyone else, and in summer we never get beyond maritime twilight, so I end up in a biphasic sleep cycle, taking a short nap just after sunrise then another short nap just after noon, missing the hottest part of the day.

Now, the above chart looks like chaos, until I re-divide the days so that instead of going from midnight-to-midnight, they run from falling-asleep-to-falling-asleep.

sleephourcycle

Pretty much a clear 25-hour cycle, other than on days where I’m notably sleep-deprived. Which suggests something like failing to “reset” whilst I sleep (Managed by most people by external cues, light levels, temperature etc, which make the body produce/regulate melatonin and cortisol and all that appropriately).

At this point, I expect to hear screams of “BAD SLEEP HYGIENE! HAVE HOT MILKY DRINK YES MILKYHOT MAKE YOU SLEEP GOOD NAUGHTY ZEBRA NOT NO SLEEP HYGIENE MILK HAVE HOT YES NOW”.

So here’s my “going to sleep” and “waking up” rituals.

I wake up when I wake up, usually to one of a series of alarms set between 8-9am and immediately have my morning medication. From that point, I have a two-hour window to have all the caffeine I want for the day, never more than 200mg, usually pills or an energy drink, along with a cup of tea. If I can’t physically get out of bed and go downstairs, I at least reconfigure the room into “daytime” settings – Put my desk on the bed, open the curtains and window, switch on the radio. I don’t “lie in”. I have my last cup of tea two hours after I wake up, to ensure that there’s no caffeine in my system by the time I want to go to bed.

Within an hour of sunset I do an hour of light therapy, then after that I go for a swim. After my swim I don’t switch on any screens (unless I really feel that I need company, in which case I use a yellow screen-mask and talk to a few people on Twitter), and generally avoid artificial light other than a low night-light so that I can read. At this point I might have a hot oat milk, some valerian or hops, or sometimes a small glass of port. An hour before I think I need to go to sleep, I absolutely turn off all screens, set my night light to “sunset”, then read something familiar and non-exciting until it’s too dark. I then try to sleep.

Right – It’s not perfect. I have a glass of port once every few weeks, I rely on either diphenydramine or valerian/hops to get me to sleep if I want to go to bed at a “normal” hour, and likewise need caffeine to wake up, I don’t always leave my room first thing in the morning (Because my mobility isn’t fantastic) and sometimes I need to use Skype or Twitter to keep me company if I’m in pain or anxious, which does mean having a screen switched on. But I think I have the best “sleep hygiene” that someone can possibly have in the real world, without completely structuring their whole life around it.

And my inability to sleep at normal times has made a bit of a mess of my life – I’ve lost most jobs, eventually, due to not being able to arrive in time for the morning shift (This is why I gravitated to nightclub work) and if I wake up earlier than I naturally want to I’m groggy for the rest of the day – regardless of how much sleep I’ve had. If it’s before sunrise, even if I wake up naturally, I feel sick for the whole day and can’t keep food down (Great in winter, obviously, when it’s incredibly difficult to wake up after sunrise.) I’m difficult to share a bed with, since I often come to bed really late, or get up early, or just don’t sleep properly overnight at all. I basically can’t plan to go to things which start before noon, and often I can’t plan to go to things in the evenings either, in case I’m in one of the weird (thankfully rare) phases where I go to bed in the middle of the afternoon and get up jut after midnight.

I think once I’ve got about two weeks’ more data, I’ll take it to my GP and ask them to do something about it.