After while, you just forget that everything smells of petrol now.

Today in Further Shit I Did Not Need, someone cased up my bike.

 

Drove past, incredibly slowly, in a flatbed lorry, and the passenger leant out, eyeballed the bike, took a photo of the lock, then drove on. Then they turned around at the bottom of the road, and did it again on the way back up.

 

The solution to this?WIN_20151215_21_59_31_Pro.jpg(Dog on settee, in comfortable parlour, with the front wheel and head assembly of a GZ125 lurking in the background like a guest that’s not taken its shoes off.)

 

Today has been a bit of a push on the Christmas front, though, which is definitely a good thing.

 

To whit:

 

Sweets for Grandparents arrived.

Books for Parents have been dug out.

Whiskey for Dearest’s Family has been found and dusted.

Hot cushions for Nieces have been sewn up.

Cuddly toy for Dearest has been finished apart from the appliques.

Smoking cap for Best Friend has been finished but for the lining.

 

Meaning all that’s left to do is finish Dearest’s thousand stitch belt, wrap everything, and then get my bike down to the garage on Saturday morning to have the heated grips fitted, before going up North.

 

I have also recieved a couple of lovely presents and cards from fabulous internet friends, which have basically made my entire month. Friendship is awesome. I can see a lot of internet friends getting Januarymas presents, once I’ve sewn my head back on straight, drank most of the whiskey, and calmed down.

 

This has actually been a pretty good week, overall. My leg is healing with the speed that I’m used to (to whit, unnaturally quickly), my ribs and shoulders feel like normal-hell, rather than had-a-bike-drag-them-along-the-carriageway-hell, and Dearest has done basically all the laundry, so I’ve got safe stuff to wear to go North in. And, possibly best, me and Sambuca have arranged to meet up in York in January. So things are going to be good. It’s always been a comfort to me to have things planned for after the big-difficult-stressful stuff (The classic ones always being having a holiday planned after my exams, a night out planned after a hospital appointment, and a few days at a friend’s house after visiting mine or Dearest’s families) and this is my thing that I’ve got planned for after New Year.

 

All is well.

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Vision Things

This will probably be a bit of a disjointed post, so sorry about this in advance.

 

I have PTSD. It doesn’t matter what it’s from but, effectively, it’s been with me for most of my teenage years and all of my adult life. As a result of it, I am both more sensitive to traumas which are similar to my original trauma, and have memory problems.

 

For “similar”, consider it like this:

There is a small, blue vase with a smooth glaze and a painting of a hummingbird on it. Things which are similar to it are things which are blue, vases, hummingbirds, smooth textures, things of a similar size, hollow things, things which make the same noise when set on a surface, other ornaments which might be in the same place as a vase.

 

I have memory problems: My long-term memory is fragmentary at best, and there are stories within it (Usually ones which I’ve either had to repeat a few times, or which other people have told back to me) where I remember them oddly. It’s like the Princess and the Frog – The story remains the same, but it could be in the city or the country, and it could be a witch’s curse or a self-imposed exile, and the girl could be a princess already or a commoner, and she might have kept her promise or broken it, or found the golden bauble, or had it brought back to her as proof. As I’m telling a story, I’ll often have to hunt around to find out who it was with, or when it was, or where. Sometimes I’ll start telling a story which I think happened after I’d left university, then realise that it happened when I was a child, or one which I think was in Tokyo and was actually in Berlin, or which I think was with Dearest but, logically, was before I met him.

 

And I have flashbacks. Usually brief, usually brought about by something that reminds me of a trauma (Some physical sensations, the smell of a certain brand of industrial cleaner, a certain turn of phrase). Sometimes it’s just a bad dream. Most of the time, in fact, it’s bad dreams. Not as bad as night terrors, but they feel almost like night terrors, and I end up screaming or lashing out or sleepwalking.

 

Sometimes, because of it, I lose track of what day it is, or what year. Just a nagging sensation that I have to do something – Go to my Grandparents’ house for tea (Not a regular occurrence since 2003), wake up in time for work, meet someone at the club (which closed in 2010), press my uniform for school.

 

I actively avoid nostalgia. There is nothing for me back there, only forwards. When I feel like there’s a chance of worse episodes, I don’t listen to music at all, since the chance of getting a line stuck in my head, and it feeling a bit like an intrusive thought (Like in the vase analogy) is too much of a risk, since it can set off a full-blown episode, if not of flashbacks, then at least of depression and self-harm.

 

Last week, I fell asleep at Best Friend’s house in the usual fashion. The next bit that I clearly remember is being curled up with my head on his shoulder, crying uncontrollably, and whenever I raised my head for a second, seeing him looking terrified.

 

From his accounts;

 

I was “gone” for nearly an hour.

I seemed to be in my late teens, knowing what he knew of my past and the people in it.

I was freshly grieving someone who has been dead for more than ten years.

I didn’t know that I had EDS – He had to keep explaining to me that my back pain wasn’t from a climbing accident, and that my hands weren’t hurt from sparring.

I didn’t know where I was.

I wasn’t answering to my own name.

I kept looping back as if I wasn’t making new memories within that hour – Having to re-establish where I was, when I was, what was happening.

 

By the time I returned to myself, I was just upset, exhausted, tense all over and shaking. He relayed back to me what had happened – My screaming waking him up, him taking a few minutes to work out that this wasn’t just a nightmare, then putting the lights on and listening to what I was saying whilst reassuring me where I was, when it was, and that I was safe, reminding me of my dog, my partner, my house, my bike, the swimming pool that I loved, the things that I’d made and done since the last year that I remembered. I asked if I’d hurt him, and he said no – That I’d not even tried, I’d just been frightened and sad. I was relieved. If he’d said that I’d even made an attempt to hurt him, I’d have put on my boots and gone home.

 

Suitably caught up, he offered me my diazepam, both to release the spasms that had taken hold whilst I wasn’t protecting my movements and to settle my mind far enough that I could move forwards, and we talked about inconsequential things in the present – Casting plaster, painting with nail varnish, production lines, cricket balls, archaeology, cats. I had to sleep with the light on, and he agreed that it was wise.

 

I went back to sleep, and thankfully didn’t dream.

 

 

The horns the horns the horns…

The destruction of a perfectly good word;

So, when I was about fourteen I had a friend who was chronically ill, and she was in hospital quite a bit. One of the things that happened was that she got impacted bowels sometimes from being, well, confined to a hospital bed by the sheer amount of gubbins she was hooked up to. One day, when we were there, she was gleefully celebrating having had a massive bowel movement – “Litres and litres of the fucking stuff” as she put it, watery diarrhoea brought on by a bad takeaway that we’d brought in the night before. The nurse, who was not all that much older than us and was hanging around, put the theory that she had been cured by a lamb jalfrezi soundly to bed with a metaphor;

“You know the Tyne Tunnel, right? There’s always traffic jams, the lorries backed up all the way across the river. So you get to the roundabout on the way in, and there’s nothing but motorbikes…”

Thus meaning that, regardless of all else, I can’t use the word “motorbikes” without a puerile little giggle. Which explains my many circumlocutions to avoid talking about the plural of a motorcycle. Difficult when owning one, and having friends with more than one motorbike, and more than one motorbike-owning friend.

 

Motorbikes morotbikes motorbikes. Aaaaahahahahahaa.

 

But what else is this about – Well, it’s that friendship group. To a greater or lesser extent, we were all goths. Or enough into metal and poetry and victorian gothic literature and tattoos that the difference was negligible. And we were probably the most tightly-knit large friendship group that I’ve ever been in, beyond even the normal teenage things.

Could argue which direction the horse and cart are travelling in here, but since we were a group that read books and listened to music that adressed things like depression, physical illness, and loneliness we were both more ready to recognise it in each other, and to accept people who were suffering. When our friends were depressed, we could name it and knew the beginnings of how to deal with it. We knew that, sometimes, “I don’t want to be around anyone” really meant “I don’t want to be around anyone” and not “I hate you personally” which was a step up from most teenagers. We knew about the complicated relationships between the Byrons and the Shelleys and their friends, so we knew that “You slept with my partner!” didn’t necessarily mean that the friendship was over, or that the pair was doomed, or even that monogamous pairings were the answer to everything. And, of course, we were teenagers, so we got everything wrong, but we’d look for frameworks within our culture, and lo, there were plenty.

And now there’s another study out saying that teenage goths are more likely to be depressed, and that this means that goths should be watched more closely than other subcultures. And, well, that just feels wrong. I don’t think that being a member of a subculture, even one that does go digging into the dark, is going to trigger a mental illness. I think that, if you’re already depressed or heading towards a mental illness, finding a subculture where depression is considered to be just part of the spectrum of human experience rather than being either the bogeyman or something to be joked about is pretty much a relief.

 

Unrelatedly; Just got my 666th comment!

Zebra Senpai

This will probably be a car crash of a post.

I’ve been really thinking about Japan a lot lately – Something about the particular kind of crisp cold we’ve had lately reminds me of autumn in Tokyo, the perfect kind of weather in which to put on some fingerless gloves, pick up a hot coffee in a can from a vending machine, and wander aimlessly around an almost-impossibly busy city, listening to the 16-bit twinkle of pachinko machines and the rush of trains overhead and underfoot, breathing in the smell of falling ginko leaves, and generally revelling in the sheer neat, flowing, well-organised urbanness of it all.

It struck me, comparatively recently, that when I’m sad about not being in Japan anymore, I don’t just miss Japan, I miss being ablebodied, since that was the last year that I managed to “pass” in.

Every Monday, I’d come home from my shamisen lesson and spend the afternoon resting my hands because my wrists hurt so much. In the evenings, after Dearest was out at work, I’d Skype with one of my pen-pals, and I’d do it lying down because sitting upright was so painful. During the day I’d still walk tens of kilometres, stand for hours on trains, teach six lessons a day in Toda whilst spending my dinner hour cycling around the nearest towns, or shuttle back and forth between Tokorozawa, Gotanda and Hasune, or (after the earthquake) donning steeltoed boots and a hanten to hep re-setting fallen gravestones in my beloved Zoushigaya-reien, but I was pretty much already obviously more ill than I had been before I left.

I returned home in the September of 2011. By the spring of 2012, I was taken to an occupational therapist by the then-new friend that I now call my sister, to get help for the pain in my hands. I degenerated for another year after that, until I had to admit that the pain was everywhere and all of the time. I was given naproxen and codeine in May of 2013, a tentative EDS diagnosis in August, my first bottle of morphine in October, then finally saw the specialist to confirm it in July 2014.

But that’s not the whole story.

Whilst I was in Japan, a then-peripheral-internet-person-I-knew was in Canada, getting a diagnosis of EDS. This was the first I’d heard of it, and my response was something along the lines of “Oh god, hope you’re all right” [Let me google this…]

She had comforted her followers with a brief “I know that many of you will now be thinking “Do I have EDS too? And the answer is probably not – You’d have to have been really sick, for a long time, so you’d know. And it’s really, really rare.” but I looked at the list of symptoms, looked at myself, and quietly filed it away as “This sounds a little bit like me.” I met another of her friends, also with EDS, and reading about their day-to-day life made me think “Yep, this really does sound like me”.

On the same day in November in 2011 that I’d met my sister, I also met Best Friend. We got on like a house on fire from the start, enough that the friend who’d introduced us to each other admitted that he’d deliberately kept us apart for about five years because he knew that if we met, we’d wreak havoc, love each other unto death, and (subtext) would completely push his nose out of joint in favour of the other.

The fact that the old schoolfriend who had tried so hard to get us not to meet never gets mentioned in my blog is probably telling – This was one of the last of his self-centred bullshits, in which he’d manipulated, undervalued and generally treated-as-things the people around him.

Best Friend is a creator of things – Better than I am now and better than I ever was – and I found myself always making excuses for my current lack-of-creative-output. He knew my hands were ruined, he was the one that first sprayed the inside of my wrist-braces with an inhaler to stop me from scratching off my own skin, and he was pretty much the only person to offer reasonable condolences at the loss of their use. And, honestly, encouraged me that it was worth trying to keep working with them, even though it hurt and I was producing work that I was ashamed of, because at least it was something.

Anyway, about a year after first meeting Best Friend, in the middle of a month-long blizzard, I spotted a symptom in him that could be nothing other than EDS. I pointed it out. He went into treatment and, soon after, was diagnosed. In return, he pushed me into also going back to a doctor, and thus we went through diagnosis and treatment together.

At some point it occurred to me – Almost every zebra that I know has their zebra-senpai, the person who usually knew them well enough to say “Look, having put together all of the things that’s wrong… This is what you need to say to a doctor.” My two online friends did that for me, then me and Best Friend did that for each other, then both of us have done that in-turn for other people. Looking back even further, at least one of the two online friends credits someone else with putting together the jigsaw pieces for her first, before her doctor got to her, and I bet that if I asked some of the many other zebs that I’ve now met if they has a zebra-senpai, they’d be able to name at least one non-doctor who put the idea on the table first.

And this makes me worry. I worry because I am part of a well-educated, accessible, tolerant community who very much look after each other and aren’t afraid to go digging through PubMed to make sure that they’re helping correctly. And there are definitely zebras out there who don’t know anyone else like them, who don’t have internet access, who don’t have the background to stand up to a doctor and say “No, you’re wrong and here’s why.”

There’s thousands of zebras out there who have no idea that they’re zebras. They think that being tired all the time is normal, and falling over when their hips fail is clumsiness, and that hand pain and loss of function is just overwork, and probably a dozen different just-so-stories about why their back hurts and shoulders don’t always move right and why they only eat every third day and defecate once a week.

If anything needs an awareness campaign, which I’m usually so sceptical of, it’s EDS.

Cherry Menthol Sea Monster

So, my two days up North were actually awesome. I’d packed light (Everything I needed fitted into the pockets of my leather jacket, including a change of clothes, a toothbrush and toothpaste, medication, soap, a support bandage, phone, wallet, keys, passport, notebook, multiple pens and a selection of empty vials for emergency use) meaning that I didn’t have to worry about where I was staying – No need to check in to the hostel, or commit to catching the last train to Algernon’s or back home, or to staying with Sambuca, I could just see where the night ended up. One of my big fears is of being socially stuck with people for extended periods, so having a handful of options which would let me have the option of sidestepping society was an important part of persuading me to travel. Even knowing that Sambuca always has a spare bed made up for me, I’m still always going to book a hostel bed in advance when I do this again, just in case.

Met up with Sambuca outside the railway station, and immediately launched back into the same conversations we’d been having in 2006. I seem to have a damn good record on having long-time friends who are really good at taking all of this in their stride (Other than the obvious exception, who will probably get his own blog post one day). We went up to Westgate and ogled about a million bikes. I have seriously fallen for a secondhand Suzuki VanVan; 2014, just over two thousand miles on the clock, previously owned by a couple who used it to pass both of their CBTs, then their Direct Access, then sold it back to the dealership and bought two Triumph Tigers. Every review of the VanVan that I’ve seen has included the words “Squidgy”, “Easy-handling”, “Gentle” and “That back tyre is verrrrry interesting, it’s good on dust and cobbles and makes the low-speed handling really forgiving”. So it’s not just a bit of pretty arsecandy, it’s a sensible machine for a nervous novice.

After that, we got a quick curry, then retreated to our old table in our old pub and sat until one in the morning, drinking a dozen bottles of brown ale and looking at photos of Tokyo (Wow, my ability to read Japanese goes downhill fast when I’m drunk) and photos of our mutual friends’ innumerable children (All, mysteriously, ginger). It turns out that, other than me, everyone still lives within half a mile of the river and east of the bridges and other than a couple who have gone into coupley hibernation, everyone still goes on on a Saturday night. Bliss.

Anyway, by time we got back to his house I was both very, very drunk and had put about a quarter of a bottle of of morphine down my neck to try to stop my hips and clavicles from completely destroying themselves. I’d nearly passed out from pain a couple of times in the pub (More alarming for Sambuca than for me) and had struggled to manage the steps down into the cellar, so I slept in the living room in what could only sensibly be described as a morphine coma, finally being woken up at ten when, in Sambuca’s words “The house woke up”.

I went up to get a shower, and found that my towel still had the tags on it. I came down for breakfast, and there was a whole breakfast bar set out, with four kinds of cereal, multiple teas, and toast. I was informed that the family had gone out, but that all of this had been laid on entirely for me. Basically one step behind buying a hat. And we sat and had a very civilised breakfast, with toast and marmalade, then he drove me down to the far side of the river to catch up with Algernon.

Algernon turned out to be very much trapped at work (match day, in the one pub in the village with satellite), so instead I wandered down to the seafront and managed to get caught up in a massive charity drive on the main street for the long-abandoned saltwater swimming pool – Built in the 20s, used as a pool until the 80s, turned into coldwater scuba training until the 90s, and then filled in with sand and rocks in an attempt at turning it into an “artificial rockpool”, which failed miserably and the whole thing continued to gently rust and corrode into the sea. So I decided to take a walk and went down to the abandoned pool itself and had a good look at it – Amazingly, I’d never seen it before in my life (There is a massive cultural divide between the north and south sides of the river) and it was more than a little eerie, thus perfect. Two massive tanker ships loomed prow-on, turning before they came into the river, but at the moment looking alarmingly like they might smash into the white-painted metal railings. The sea lapped up against the concrete base of the structure, the odd wave crashing over the side, and more water flowed in through the old infill pipe. I stayed for a while, standing where the old diving blocks would have been and sighting along the fifty-metre stretch which was once the main tank, sitting on the concrete steps which made up the viewing gallery, and trying to work out where the old changing rooms would have been. The whole site was strangely resistant to being reclaimed by nature, and it felt more like a ship in a breakers’ yard than anything else. I bought a T-shirt from the fundraisers on the way home, shared what I knew about its long-destroyed sister pool on the south foreshore, and promised to keep in touch.

From there  it was just a matter of getting back on the local train, then the regional train, then back home within three hours. The migraine was kind enough to wait until I went to bed to strike.

Today I am completely destroyed. My clavicles, which were complaining about being upright for so long, have gone on strike and crawled up my throat, my right hip is an immobile wreck, and my wrists are making a noise like a succession of bathroom sinks being thrown off a towerblock roof. But it was worth it.

And lo, that’s the end of the stressful week. Now I’ve only got two things to do in August left – Meeting up with Best Friend for his birthday, then doing my CBT on the 22nd. I think I’ve survived it.

Return to Castle Karnstein

So, tomorrow I’m heading up to Newcastle. My itinerary is a bit… Gruelling.

1)  Arrive in Newcastle after a three-hour bus and railway journey.

2) Meet up with Sambuca, go looking at bikes on Westgate Road in preparation for Compulsory Basic Training and basically to remind me that I’m doing this because I love bikes and want to ride them, and it’s a fun thing, not a chore.

3) Probably eat, I hope.

4) Pub, one of our old haunts if any of them are still open.

5) Club, oh dear god, for the first time since about 2007. I hear there’s a new metal night at the Union.

6) Back to the youth hostel, probably at about 3am, where I will be sleeping in a dorm with ten other people.

7) Youth hostel kicks out at 10am.

8) Local rail (always erratic on a Sunday) down to Tynemouth to meet Algernon, and maybe go to the beach.

9) Local rail back to Newcastle.

10) Mainline rail back home, another three hours of travelling time.

Am I looking forward to it? I don’t really know. I’ll be travelling light (No rucksack, everything stuck in my pockets), and the two people I’m going to see are both lovely old friends whom I’ve either not seen in forever or only reconnected with briefly and recently, so that will be good. On the other hand, I’ll be travelling light, so won’t have an internet connection to do long conversations with anyone from back home, I’m not sure that I’m physically or mentally equipped for going to a nightclub (Not much seating, loud music, late night, people who might remember me and I can’t remember them), and I won’t have any privacy for the whole time that I’m there. I know it’s only two days, but my mental state is fragile, I’m not physically in very good shape, and I’m going to be running very close to exhaustion for much of it.

Part of me wants to just stay at home and finish watching the cricket, but even that alibi will probably run out by about noon.

Tryptophantasia

Stress is occurring.

Dearest’s Mum is visiting tomorrow (Sunday).

Mine is visiting on Tuesday.

Getting the chimneys cleaned on Wednesday.

Going up to the Old Country to see someone that I’ve not seen for the better part of a decade on Saturday, including both going to a nightclub and sleeping in a dorm. This is the friend that I cancelled on in May, and that I tried to hide my EDS from. I, of course, failed. His asking “Why didn’t you finish your CBT the first time then?” being answered with “Google ‘hypermobility syndrome’, which is also half the reason that I’ve spoken to nobody for the past few years…”, which got a “Shit, man, if I’d known, I’d have stayed in touch – Can’t have you hiding away”. So I think he’ll be normal about it. I just worry that the plan of “Go out, get shitfaced, danceuntilitallmakessense, eat garlic bread at 3am, sleep in a bunk in a hostel” might be a bit much, and it might turn into “Quiet pub night, awkward conversation, never see each other again.”.

This is how my fear works. Especially with a friend where, for the first five years of our friendship, we’d never seen each other in daylight. It’s a very physical friendship – Lots of drinking, lots of running around and play-fighting, lots of walking around the city in the snow in the wee hours of the morning, not getting much sleep, and generally behaving terribly.

On the other hand, I think I’ll also use this as an opportunity to catch up with Algernon again, if he’s free on one of the daytimes.