Red Right Hand

Suddenly I am BUSY.

 

Last week, I passed my Mod 1. Regular readers may know this was the ninth or tenth attempt. And I passed it, not powered on by confidence or love or hope, but by the things that have always been there for me; Righteous indignation and pain.

 

So, the first manouevre in the test is the manual handling. This is where the rider has to push the bike from one bay into another without hitting the cones or dropping the bike. There are no official guidelines on how to do this, and due to being skinny and (critically!) extremely disabled, I tend to do it by sitting astride the bike and pushing it backwards with my feet. this is, according to the actual rules of the test, perfectly legit.

 

According to this examiner though, that wasn’t manual handling, and manual handling explicitly meant “Standing beside the bike, one hand on the bars and one on the tail”.

 

This of course took literally five minutes of agonised pushing to move the bike from one parking bay to the next, complete with shoulders exploding out of socket, discs herniating, literal crying. But, I did it. And from that point on, I was fuelled with finest grade vitriol. I did a control exercise and figure-8 that could have gone in a training manual. My slow ride was a stately crawl. I U-turned with enough room left over to drive a bus through between my bike and the kerb. In the high speed exercises, I hit the speed gates at closer to twice the required speed than below it. I passed, with two faults (One for having difficulty in the manual handling, one for taking a while to brake after the hazard avoidance) and booked straight in for my Mod 2.

 

I got home, and found out that my Grandmother was in hospital with a broken wrist. So the next morning, I loaded up the bike and rode North.

 

I’m not going to talk about her being in hospital, because that’s not my story, but suffice to say that being up north, even though I got to see Sambuca Guy again and go to Ocean Road for a curry, and watch the ships on the river, was exhausting.

 

I also got pulled over by the police on the coast road for having a burst light – So they got out the screwdrivers and spare bulb kit, patched me up, and sent me on my way. Because even the police are nice on Tyneside.

 

Anyway, after three nights away, I rode home, getting to Thirsk just as it started to snow, then fell into bed in a complete pile.

 

The next few days will be possibly busiest. Here’s my last few days, as they’ve been, and my plans for the next weeks;

15th – Bike training

16th – Day of rest

17th – Mod 1 (I passed!)

18th – Leather shopping to reupholster the EN500’s saddle

19th – Ride North, visit Grandmother in hospital

20th – Jerry-rig existing bike headlamp, out with Sambuca Guy

21st – Visit Grandmother in hospital, socialise with family

22nd – Ride home, 120 miles in a snowstorm

23rd – Today! Rest! Sleep! Possibly go out this evening but I really don’t want to.

Tomorrow (24th) – Go to the garage to get the parts for the new headlight (Am switching from a single 5″ light to a pair of 4″ ones)

25th – Rheumatology at StJ, then Ghost In The Shell at the pictures in the evening.

26th – Bike training

27th – Going to Boggle Hole Youth Hostel for the weekend, because Whitby.

28th – Day in Whitby

29th – Ride home

30th – More bike training

31st  – Nana’s birthday, but also a day off.

1st – Bike TEST, as in my Mod 2

2nd – Day off!

3rd – Physio at Stanmore again.

 

…As you can see, by my standards, this is being a busy month.

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Hundredaire

Right, a recap of a really shitty month. Dear reader, I petition you to remember whilst reading this whole post that at the best of times I feel like an unnatural mistake and a crime against nature.

 

First – The good; A long ride out to Selby in the cold, haring along the A63 on my beloved little 125, to meet the EN500; My prospective new bike. It’s good – A handsome old machine, with a high-revving parallel twin engine, a belt drive, and a very comfortable riding position. This one comes with a touring screen, a USB hookup, panniers, a tool roll (full of tools) and a sparkly custom paint job (In Kawasaki purplish-black pearl). Of course, I bought it on the spot. Riding back in the pitch black on twisty, unlit roads, watching the frost forming a halo around the moon was a tonic for the soul.

 

6th of December was my bike test – Failed, with technically zero faults, which I consider to be a sign that I was doing rather well. Only clocked 48kmph on the hazard avoidance – I needed to do it at 49kmph. Considering that this was in deep fog, with the ground green and slippy with moss and ice, I think that I did the sensible thing in taking the course more slowly than I would on a bright summer’s day, really. Next attempt, 17th of January.

 

After that, me, my instructor M, and his wife AM, all went out to Selby in the van to pick up the EN500. It’s now safely ensconced in the bike office, basically until I pass my test.

 

About three days after this, and two days before I was due to go home for Christmas, I got a migraine. Not just an ordinary, two-days-and-it’s-done migraine, but a full-on seven day nightmare. For the first four days, I couldn’t tolerate any light; Literally, even with my hands over my eyes, and the curtains shut, at night I was still screaming that it was too bright. By day three, I was still vomiting after so much as a sip of cordial, and it was only day six before I could stand up without getting so dizzy that I fell straight over again. This, by the way, is with Zomig, morphine, and a couple of over-the-counter anti-nausea pills. Without Zomig, I assume I’d have just killed myself.

 

And then yesterday was physio. The first driver picked me up at 10am, which was where the issues started. Before reaching the ringroad she had;

 

  • Nearly crashed twice at roundabouts, as she seemed to think that priority was to the LEFT, and had seriously jarred my back both times.
  • Decided to opine at length about how I should stop taking my meds and start taking turmeric instead
  • Told me about her haemorroids, describing them as “Pain so bad [I] could never understand it”
  • Explained at length about how everyone with a mental illness was just workshy and grifting.
  • Told me about three tragic cases of beautiful young people she’d taken to hospital who had awful conditions that she had to pray for.
  • Touched my leg four times.
  • Insisted on manhandling me and my bags, really hurting my knee in the process.

Upon reaching the motorway, she drove for most of the way on the hard shoulder, or in the crawler lane, and my attempts at sleeping for most of the journey were wrecked by her veering around in the lane – Not changing lanes suddenly, just being unable to follow the lane or maintain a steady speed.

 

We got to the hospital anyway, and she insisted on checking me in, giving a load of spurious requirements to the receptionist (No, I do not need my bags carrying, or a wheelchair, and if I did, I would ask for myself, ta), and then hugging me (I froze) as she left.

 

Physio itself went well – three new exercises, and just still not being patronised or blamed, which is an incredible victory in itself. Today was with Physio HH again, who is basically my main physio now, and was working on my hips and lower back.

 

The exercises (Since I’m keeping track here)

 

  1. Lie on back, knees bent about a foot apart, feet also about a foot apart. Close eyes. Keeping one leg upright, slowly lower the other leg out sideways, then pick it back up.
  2. Lie on side, ankles together,knees bent at about 90 degrees (as if in a chair) – Slowly pick up top knee, to about six inches off the bottom knee, then lower it back down.
  3. Sit on a balance ball, bouncing slightly (for core strength)
  4. Sit on a balance ball arching and curving back, whilst staying upright – This is also how we found that my left leg is shorter than my right, and I’ve got a functional scoliosis.

On the way out, I ran into Physio T, who seemed both really happy to see me, and also really worried that she’d been meant to see me that day, and had missed me. She was surprised that I’d not been in inpatient rehab in the month in the middle, since our last appointment, but also seems to think that I’ll do well once I’m in it.

 

That’s the other thing – Inpatient rehab; Aka, the fabled Stanmore Programme. There’s two versions of it, the hotel version and the hospital version, and for obvious reasons I’d rather do the hotel version. It’d just be conducted by physios, H was very certain to advise me that there’d be no nurses on-hand, thus no care shift – But then, in the real world, I don’t exactly have nurses on-hand all the time either.

 

The journey home was fine, even if I did have a two hour wait for patient transport, and only got back at 10pm. Nine hours of travelling, two hours of waiting, and an hour of physio. Seems like a great use of time.

 

The trouble is, well, my mental health. It’s not exactly great right now, it’s stable, but it’s stable at a low ebb – Nothing seems worth doing, up to and including things like “getting dressed” or “washing”, and stuff like putting on clothes more complicated than just bike leathers or surplus is so terrifying that I go into paroxysms of anxiety for days. Likewise, any kind of socialising – I’ve seen Best Friend a slack handful of times since we were on holiday, and I’m not really spending time with Dearest either. For my own good, I’m not doing Christmas now, but I almost wish that I could have some kind of in-person social interactions with people without finding it hateful and pointless. Not because I feel like I want to, but because I know that’s what “real people” do, and I really do suffer when I’m feeling more aware of persistently feeling like I’m not real, or not equivalent to a “proper person”. Failing repeated tests on a technicality, failing my degree, ending up in non-standard NHS treatment because my local trust don’t think I’m worth treating, being very socially isolated by a combination of awkwardness, reluctance and circumstance (today I rang up a client, for free, and chatted for an hour because I had nothing better to do), and having a job that relies on being able to be a very good liar/actor/cold-reader, atop a childhood of feeling like a mistake, an exception-to-a-rule, an outsider and an ersatz substitute for being with “real people” makes for a distinct sense of being not-a-real-person. It’s probably no coincidence that I’m happiest and feel most like myself when I’m entirely alone and hard to physically pick out from the next person; ie, either on my bike and in my leathers, or swimming and underwater.

 

It’s not exactly rocket science that I’m plagued with suicidal ideation at the minute either. I’m watching TV and generally numbing myself out with morphine and lacework, but it’s there in my head and I’m having a bit of a shitty time making it stay shut up. Ah well, not long to longest night, and then with any hope, I’ll be on the way up into Spring.

 

 

Hellscape

So, as the world has gone completely mad, I’ve not had time to talk about Stanmore.

 

First – it was a long day. Left here at nine, got home at 23.00 and didn’t get to eat in that time.

 

The physios were lovely (Physio H, hips, and Physio T, shoulders) and have started me off with a simple shoulder exercise; Lie on back with arm out sideways at shoulder height and forearm bent at ninety degrees. Rotate arm so that forearm travels from pointing towards your head to pointing towards feet, without using pecs or lats – The consensus is that I have basically no stabilising muscles in my rotator cuff, and my pecs and lats and other shoulder muscles (all frankly huge) are doing the work. As H put it “You’re lifting your arm, and activating a muscle that’s meant to pull the arm downwards. That means that the ‘arm’ that you’re lifting weighs probably about twice as much as your real arm”.

 

H opened the session with talking about swimming, and really wants to focus on getting that fitness to carry across to landlocked exercise as well. Like, serious emphasis on doing dryside training in between swimming sessions and using that to get me back up to strength. T, having a good close-read of my actual shoulders and back (Actually looking at and touching, not just vaguely gesturing! She reminds me of Physio C, my benchmark against which all other physios are compared) agreed with Dr Hd from the last Stanmore consultation that I have the muscle pattern of a serious competitive swimmer, right down to slightly shifted and split insertions and heads from a land mammal. She also made me blush by grabbing a handful of lat and going “ooh that’s just lovely to see isn’t it H? Real muscles, and all easy to get at, nothing in the way…” Very much in a professional tone, as one would evaluate carcase quality in beef cattle, but I am easily flattered.

 

The bad news – They think that I would benefit from inpatient, even if I do just stick my headphones on, or nip off to the pool for a session during the basic or counterproductive stuff. I worry that given a torrent of lies-to-children level information about pacing or prognosis, I’d cause disruption. not even deliberately, just by asking questions.

 

Anyway, step one is to return for more outpatient on the 15th of December, nine days after my bike test. Oh, did I mention we have no central heating, and haven’t had for… Over a month now. Ow. And it’s snowing.

 

Ah well, off for that swim. Got to keep on impressing the physios.

Rasputin

Time is passing.

 

Well, in two days I’ve got Stanmore, again, which I’m trying to look forward to. Going to try to do it in one day again, and to try to get as much out of the single appointment as possible – If there is a second appointment, I probably won’t be able to afford to get to it, even with the disabled person’s railcard.

 

Just failed another Mod 1, so am about to take on the eighth attempt in December.

 

The kitchen ceiling is dripping in three places, and the bedroom wall has filled up with black mould because the outside downpipe has broken. Heating repair is coming on Monday, gutter repair was supposed to be today, but I’ve heard nothing yet.

 

I had to fill in a reapplication for PIP, which arrived on the 3rd of October and was due in for the 3rd of November. I got it sorted eventually, but it took me ages and again there’s something cripplingly embarrassing about having your best friend and their Mum both doing a close-reading of exactly how you wash your hair and feed yourself and wipe your arse. Was frankly mortifying to realise how antisocial I am now; How much I don’t like to see, or talk to new people, and how much it’s getting worse. It wasn’t that long ago, in lifetime terms, that I used to willingly go to societies, and parties, and to find value in meeting new, interesting people. My attempts at such this year turned pretty quickly into realising “I like the swimming, but I wish there were no other people” or “I like riding, but I wish I was the only person at this biker cafe” and, well, I’m not sure if that’s mental illness or just utter disillusionment with all other people. Anyway, it’s been coming on for a few years, but now other than Dearest and Best Friend, I’m a complete hermit, and even seeing them is a little exhausting.

 

In good news though: I’ve been swimming a couple of times, I went to Harrogate and got myself a nice lambswool jumper and a load of buttons, and my lacemaking is getting on a bit.

 

All I really want right now is to be out on my bike, or to be curled up in the warm with someone lovely, or just in general for it to be not this week at all.

Cold Fear of Autumn

You may note I’ve not been posting much this year. That’s because my usual reprieve between dips of seasonal badness didn’t happen. And now it seems to be getting worse again.

 

I’ve not had this kind of seriously long-term acute-low since my teens and early twenties (where admittedly I was stuck in an acute low from 1993-2007) and the worst long crash since then was 2009-2010, where I was off on the sick for months on end for depression alone. But this one has been getting slowly worse since about Oct 2014, and this is the first year with no energy boost in Spring-Summer at all in that period.

 

I am not looking forward to this winter.

 

I am also not looking forward to going to Stanmore on the 3rd of November at 2pm for physio, since I don’t have the money to do it comfortably, so I’m going to be likely to be doing a round-trip to London in a single day, on an ailing 125. I don’t even feel like I have any hope to gain from being treated, since so far nothing has worked much at all other than giving me morphine and hard exercise, and I don’t feel like I have the strength to phone Stanmore and tell them that I can’t make it – I can’t even afford it – and that I’m very sorry for having wasted their time. I’d not even been expecting the Stanmore invitation – I thought I was going to have services provided at home. But this will be the best physios in the country. And thus I’m conflicted.

 

We should all wear fantastic red trousers and never be sad again.

This has been one of those downright fabulous week-and-a-bits. My pain levels have been high, I’ve been scraping a knee around the twisty corner of a serious anxiety problem, and I’ve been sleeping like a rat on a tilt-table, but it’s been a fantastic week.

 

I swam at my local baths, again, for the first time since November, and turned out two kilometres without really noticing it.

I went to the City bath, clocked in three 400m stretches at about five minutes each, in a 2.5-kilo total session, and spent so long in the sauna and steam rooms that I felt completely new when I came out.

I went to two sessions of the naturist swim, and was just completely relaxed and sociable.

I’ve been out for a  lazy run on the bike – Not going far, not getting far above 50mph, but doing it on the best of the twisties that my county has to offer, on a gorgeous spring-becoming-summer evening, with every hedgerow in blossom and bursting with fresh greenery. The hawthorn, particularly, is splendid this year, and after this morning’s rain (though the roads have dried nicely) its smell is hanging in the air as thick as steam. I absolutely love this kind of weather – Not too hot, not too dry, and the whole landscape feeling alive. I actually stopped to look at some extremely jolly sheep, and a lovely old piebald cob who was grazing in the wildflower-strewn field next to them. It’s been that kind of day.

My attempts at domesticating the local feral pigeons has resulted in a Flock – Chequer (A massive dark blue chequer who comes to the window five times a day), Blue Bar (A slightly smaller but not by far pale blue bar, who follows Chequer), Red (A small barless ash-red who avoids the other two), Big Red (A bigger, patchy, barred red who might be Red’s mate) and Big Blanc (A very dilute white-headed, crested red bar who only arrived this morning but Chequer keeps trying to chase away). I’ve also got an accidental twenty-kilo bag of racing pigeon feed for them, so that seems to be going down a treat.

And there’s been good news – my letter from Stanmore detailing Dr H’s assessment of me has arrived, and stuff to look forward to – My first ride on the Suzuki 650 is tomorrow.

My dissertation, which has basically been hanging over me like the sword of Damocles, is now just the toothpick of Damocles, since it’s nearly finished and just needs some gentle tidying-up in the form of a justification and some proofreading to be submitted.

Things are all looking up.

 

Find attached: Stanmore’s letter to me, and some cager’s attempt at “wit” that I found stuck under the pillion strap of my saddle today. Still not enough to make this week anything other than beautiful.

 

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Operation Infinite Dugong

So, Wednesday was London. Stanmore. The thing I was terrified of and didn’t want to go to.

 

And it was all really good.

 

Other than the first passenger assistance at the local station, who basically treated me like a sack of turnips and resolutely ignored things like “Stop here” or “I want to go there”, to the point of pushing me high-speed the full length of the station in the wrong direction as I protested loudly, nearly missing my train, everyone was really nice and helpful. Upon arriving in London I was greeted by another passenger assistance bod, who wheeled me down to the Metropolitan line gates, where I was helped down the steps to the platform by a Tube employee (Including the secret knowledge that you can just pay for tickets at the ticket gates, with a contactless card, as if it was a Suica), and then at the other end, in Stanmore itself, I was met by patient transport and ran up to the hospital in a taxi. And everyone was really nice.

 

The Tube journey itself I really enjoyed – The first train was one of the new S-stock (Very like a Tokyo Metro train, a single tube running from end-to-end) and the others were 1996 stock (Tiny, round trains) and it was a pleasant tour of London’s leafy suburbs. Finchley Road station, where I changed, isn’t quite as lovely as Baker Street, but it’s close.

 

Anyway, upon arriving at Stanmore I was nervous again, but it turned out to be really useful. Dr DH was much like Dr A (Of UCLH) in that he was non-judgmental, understood that I would be basically an expert in my own condition by now, and reconfirmed that what I was doing now was probably all the right stuff.

New things which he pointed out;

  • The muscle insertions in my shoulders were probably quite unusual (he didn’t say “deformed”, but…) from years of swimming, and that probably had some kind of effect on my shoulders’ luxations, though whether good or bad, he didn’t know.
  • The stabbing chest pains were probably from when the muscles supporting my shoulders got exhausted, and thus tried to co-opt my chest muscles into holding their, not-inconsiderable, dead weight. So, not dangerous, but unpleasant, and my approach to them (“Lie down, arms and neck symmetrical, rest, sleep.”) was exactly right, and powering through them would just hurt more.
  • Swimming was still doing me a lot of good. Incomparable good. Even if I needed to build up my tensor fasciae latae and my adductors separately, because the motion of swimming wasn’t building quite the right muscles for good work on-land, it was a good starting point and meant that there’d need to be less remedial work.
  • He also suggested that the reason I wasn’t great at weightbearing might have something to do with shallow acetabula, as well as unbalanced muscle development in the legs.
  • Decided that what I needed wasn’t the standard Stanmore inpatient course, since a lot of that was to do with psychological management of EDS and basic how-to-get-by-day-to-day workarounds, which I had already worked out, and he admitted that group therapies would probably bore me to tears and that I would probably just “tune out” many of the sessions, because they were either therapy for a problem I didn’t have, or would be teaching something that I already knew.
  • So, he’s proposed some hard-core, full-time, intensive-course physio, hydrotherapy, exercise, and biomechanics. He agrees that what I need is probably closer to a personal trainer, someone who will just walk beside me on the poolside and correct my form, then set me appropriate exercise in the gym, and generally both encourage me to stay fit but prevent me from overtraining and knackering myself. This will either be in London, or will be provided by the local services (Knowing our local services, I’d much rather that it was in London). As much as I know that asking for this was asking for the moon in a bucket, he looked really really enthusiastic about it as well, and is going to get Prof HC to discuss it and sign off on it once she gets back from the EDNF conference.

I came out of the appointment not just a bit cheered up, but downright excited. This is the fruition of what Dr A said at UCLH; Stay fit, and we can make you even fitter. Even if I never get to the point where I can casually walk to the shops or type as much as I really need to, I can get to the point where sudden bursts of hard exercise aren’t beyond me. It was only last year that the first half of my hundred-metre split got close to 25 seconds again. I can do this. Maybe think about getting involved in the naturist swimming galas, for something external to aim for.

After the appointment, I went for a quick tea with an internet friend, and was probably completely incomprehensible since my head was absolutely spinning from the appointment and the long journey; I really enjoyed it though, it’s nice to finally put a third dimension on someone I’ve known for years.

And then, well, back home. The east-coast mainline at night is a frankly meditative thing, whooshing through darkened fields, lit only with the odd glow of a level crossing (Often a level crossing with a pub, or a house, in the old signalman’s cottage), with only the sound of the locomotive up ahead and the odd announcement that was basically lost on the empty train. Eventually, the fields gave way to hills, the hills to sodium-lit goods yards, then finally to the glow of the city. Our railway station always smells so strongly of lilac and greenery in spring, especially at night, and once again the empty architecture was just fabulously calming.

 

And then there was my medication review on Friday, which I went into much less calm. This was with Dr P, whom I’d last spoken to on the phone a month or so ago, and who in retrospect I’d also been given more capsaicin by during my last migraine (Unrelated events).

And, somehow, that went well as well. Staying on everything that I’m on, adding an extra 100ml per month of morphine, and coming back in a couple of months to talk about Stanmore, once the letter is in. He also said that I was probably “More of an expert on EDS now than most doctors” so just deferred to me on… Basically everything. So, I have a plan – When I go in next, I want to ask about getting my NHS personal health budget, and using it to fund private physiotherapy or hydrotherapy, or both.

 

Things are looking like they’re going to go well, for once.

 

Also – On the personal-stuff-level front; I’m now starting my dissertation in-earnest (Due on the 2nd of June), my Mod 1 training (Starts on the 25th of May, exam on the 31st) and obviously I’m still writing the EDS Alphabet for EDS Awareness Month. So, yeah, I’ve got a few plates spinning at the moment, but hopefully it’ll all be fine.