davidgillon: A foot, mine, in a camwalker brace (Boot)
[personal profile] shehasathree posting about that tape/brace thingummy reminded me I'd been meaning to mention my new boots as there are one or two people here who may find something like them applicable.

Ever since I trashed my ankle again last year (see boot icon!) I've been meaning to get myself a pair of boots with some serious ankle support. Even at the best of times my left ankle flops sideways when I walk, while after two serious sprains in the past decade my right ankle aches pretty much constantly and minor sprains and subluxes are a weekly occurrence - welcome to life as a bendie! (OTOH I don't even get a full sublux, never mind a dislocation, so I'm comparatively lucky) I've been wearing hiking shoes/cross trainers for years, which suits my need for a supportive shoe, but they are very much a shoe, rather than anything that supports my ankles. I've used AFOs when I know I'm going to be on my feet a lot, but that's overkill most of the time and I wanted something between the two extremes. I hadn't come across anything to suit, but after a fortuitous websearch over Black Friday ('I wonder if anyone has any good offers?') I've ended up owning a pair of Kunzli Black Pro Plus boots (actually the older model shown slightly greyed out on that page).

They're actually designed for people with acute ankle injuries as an alternative to a cast or a walker boot, but the company website claims they're also suitable for chronic injuries, and I seem to have ended up with exactly what I've been looking for. The pair I've got are a little bit 'orthopaedic' looking from some angles - it varies between models, some are more obvious than others, but it's not as if I'm going to be out without either chair or crutches, so who am I fooling? The lateral support they give is precisely what I need - the heavily padded ankle has two built-in plastic support bars in an A-shape on either side. The A-bars make it almost impossible to roll your ankle sideways, while they're so heavily padded you can't actually feel the bars directly, it just feels like the entire shoe is supporting your ankle. Pointing your toe isn't as restricted, but the sole is near rigid, with a rocker shape to compensate.

The major caveat here is price, they're a handmade Swiss design that retails for around  £230 normally (eep!), and I was lucky enough to find a pair on ebay for £60 (£75 when I first looked, which I ummed over, but the price had dropped when I checked back). I certainly wouldn't have risked buying them at full-price without trying them, and I'm not sure I could have persuaded myself to spend that much, but for the price I paid I definitely ended up with a bargain. There's a minor caveat on fit, the pair on ebay were a UK 9, my feet are 8 and 8.5, so I was pretty confident I'd be able to fit in them, but there's not a lot to spare on the left foot. I think that's mostly down to me, my feet are very high-arched and my big toes tend to push up as I walk (I must be one of the few people who regularly wears out the top of shoes not the bottom!) which likely means I'm a bit more sensitive to how much space there is at the toe than most people are, but there's a chance their sizing may be slightly on the small side.

(And a very minor caveat that they're quite a narrow sole, almost a centimetre narrower than my normal shoes and I half feel like I would be falling off them sideways but for the A-bars - but then my normal shoe is a hiking shoe and almost anything is going to be narrower by comparison! I think this is probably just a case of getting used to them)

Realistically that ebay find was a fluke and you're not going to find something like this in a high street shoe shop, but if your ankles have reached the point where you need some serious support and you don't want to progress to AFOs, then something like this may well be worth looking into - the applicable term seems to be 'stability boot', though using it as a search term seems to pick up the walker-boots as well.

davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
 I woke up this morning with my left hip screaming in pain. I'm not sure whether it's a consequence of sailing or Athenian pavements, but left hip is genuinely not happy and my right hip isn't a ball of fun either. It took butrans, 2x400mg Ibuprofen, and 2x 500mg paracetamol to get me standing with weight on my left leg (to put it in perspective, the ibuprofen and paracetamol are the prescriptions I didn't use post gall-bladder surgery as I didn't need them). I decided my body was clearly calling for an easy day and settled for a couple of hours people-watching with a beer in hand at a pavement cafe about 50m from the hotel (even that needed me to climb out of the chair to get it across the road as the island the cafe is on on doesn't have kerb-cuts).

I'm back at the hotel now avoiding the heat and even on the fifth or sixth floor above a six-lane road I can still hear the cicadas singing. The plan is to head out in a little while to find something to eat, but even that's going to be limited to the local area. Hopefully I'll be up to more tomorrow.
davidgillon: A foot, mine, in a camwalker brace (Boot)
With the weather so hot today I inevitably opted for shorts when I went out into town, but that meant showing off my latest disability-related accessorizing.

I think I've mentioned that the ankle I trashed this time last year has been aching for the last few weeks, well this week it's really been throbbing constantly, the ankle joint in particular and all up and down the outside of my shin, as though the muscles there are out of balance (and bear in mind I'm already on opiates, so if I can feel it all of the time then it's really not happy). I don't remember doing anything to it, so last year's incident is the obvious smoking gun, and it isn't the first time I've trashed that ankle, which is part and parcel of being hypermobile. The only thing that seems to work for keeping the pain down is keeping it fixed at 90 degrees, which means splinting it. I really don't want to go back to wearing the boot (see icon) - the leg-length issue from it's three inch thick rocker sole is a literal pain in the backside, I do have a night splint, but that's not meant for walking in, which leaves me with my AFO (ankle foot orthosis). That's a plastic brace with a footplate that fits in your shoe, and which then runs up the back of your leg to a cuff just below your knee, there's a lighter strap at the ankle to hold that in. Wearing it really needs a long sock on, so I'm having to wear knee socks for the first time since I was six. And if I'm wearing one AFO then I may as well wear the other, because if I do end up spending a few days in Athens then using the AFOs is probably my best bet if I end up needing to walk any distance without my crutches and I might as well get used to it and identify any problems now (while hopefully avoiding making myself dependent on them - being bendy is a balancing act between too little bracing and too much). I got them to use on days when I was on my feet for a long time, as I tend to get an increasing amount of footdrop as time goes on, but it's one of those issues that's impossible to demonstrate to a GP, and rare enough it's simpler just to sort out your own solution. Only now wearing shorts means all the hardware is on display - I've worn the AFOs before, but always with long trousers covering them.  It's hardly the first time I've worn a visible brace - I wore a hard collar 24/7 for about a decade in the late 80s and 90s, but I guess even when you visibly use mobility aids all of the time you still need to adjust to changes in your bodily image.

Tomorrow should be interesting for imposter syndrome, one of the friends I have lunch with wears a full-length calliper due to polio. She'll probably be fine with it, it's me I'm not so sure of....
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
Today is not a good hips day, in fact today is an I wouldn't be voluntarily upright if I could avoid it day.  I'm not quite sure why, but sleeping 14 hours on the couch may have something to do with it -- oh, hang on, I know exactlty why, it was the hour's delay in my appointment at  the hospital yesterday, the one where my hip got gradually worse the longer I sat in their waiting area.... (which would be the reason I conked out on the couch last night)

(And all for a sub-five minute appointment that said 'you're shoulder's fine now, ask for another referral when it gets bad again' - I do like a doctor with a realistic view of hypermobility).

So of course I had errands that needed to be run, one of which could only be run today and another of which I've been forgetting to do for the last fortnight. Thank god for the wheelchair.

So I've driven up to the hospital and had the pre-op blood test, that one was the had to be done today job - they actually said 3 to 5 days pre-op, but I'm not sure the walk-in blood tests are open at weekends. And really, was moving them out of the main building into one where they're up quite a steep path, with a heavy door at the top a good idea ? Ironically there were two members of staff standing outside, and as best I could make out one was being 'counselled' on improving his attitude to patients, guess which one stepped over to help.

And then we played hunt the vein. I used to be terrible at blood tests, possibly because I'd had so many, I gave up being a blood donor the day all five nurses in the trailer queued up for a try at my veins because I was so challenging, but they assured me when I was an inpatient over Christmas that I was back to being no worse than normal. Apparently I'm back to being a trial. The nurse had multiple tries in both arms, and said she'd never had anything quite like it, she could feel she was on the vein, but it slid aside every time she tried to get in. I wonder if it's a bendy thing.

And seeing as I was up there anyway I checked out where I need to go on Wednesday, so at least I'll be less stressed about that aspect of things.

Then I drove over to Rochester, diverting bsck home to pick up the prescription I'd completely forgotten to take with me, even though that was the one I keep forgetting... And as I was in the chemists anyway I took the opportunity to pick up something else:

"Oh, and I need some of whatever's the strongest OTC painkiller"

Strange look from the assistant: "So what kind of pain is it for?"

"I don't know yet, I'm having surgery on Wednesday and they told me to make sure I had some of the strongest OTC painkiller in the house."

"Ah, okay, we have this one, which is paracetamol and dihydrocodeine."

"Ah, no, I have a strange relationship with dihydrocodeine"

"There's this one with codeine?"

"And codeine too"

"You're allergic?"

"No, they just don't work"

"Oh!"


We settled on Ibuprofen ;)
 


davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)

Just back from my outpatients appointment and apparently I have Impingement Syndrome to add to my list, or in other words the rotator cuff in my right shoulder is being irritated when I move my arm. So all the bendies who said 'it's your rotator cuff' were right, but I haven't actually torn it so much as rubbed it the wrong way. Apparently it's very common in hypermobile types.

The good news is I finally found an orthopod at Medway who accepts I'm hypermobile (and I didn't even have to do the foot on forehead party trick to convince him). And because he accepted that, he treated me as knowing what I was talking about when I said the shoulder had subluxed several times. He offered to do a cortisone injection on the spot, but given that it's not as severe as it was several months ago we decided to try physio first and revisit it in 3 months.

The appointment was for 11AM, so I was turning into the hospital car park at 10:50, at which point my phone pinged it had a new text. I left that to check until I had sat down in the very full ortho outpatients area, and when I looked it was a confirmation for my 11:50AM appointment. *Headdesk*.  Fortunately it was the text that was wrong, not my appointment time, and I was seen and on my way home by 10 past.

Glad I concluded it was different to the frozen shoulder I had on the other side three or four years back and not to risk trying the physio I got for that. We'll see what physio have to say when I see them, but I don't know what the physio waiting list is like, or even where I'll get it - the hospital booking system was down so everything was being done by hand and 'you'll get the appointment in the post'.
 



davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
The situation with my father seems to have calmed down somewhat, with the rehab unit admitting he's gone far beyond where they were predicting - the latest I heard was he's progressed to walking up and down the corridor, with one physio helping his leg along and another following with wheelchair. But there's still the problem that they may push him out of the unit at some point in the near future, which is putting my sister under a lot of stress in trying to identify a suitable nursing home that we could access quickly, and not helped by individual members of the unit staff being complete arseholes to her. (Difficult to think of another term for someone who says 'there are people waiting for his bed you know', or 'my staff are scared to talk to you' when she's never said anything to the junior staff). Plus there's the finance side of things, complicated by it not being clear whether he's sufficiently well enough we can get away with a power of attorney, or whether we need to go through the Court of Protection. I had a very useful chat with a fellow bendy friend whose family has been through similar and, even though we could probably do the Lasting Power of Attorney stuff ourselves, that confirmed for me that we really should go through a solicitor because of the potential Court of Protection angle - doing CofP ourselves would cost a minimum of £500 just to submit the paperwork, and possibly well over £1000 if they decide a hearing is required, so it's worth getting the professional input/advice to get it right first time

I had to talk myself out of jumping on a train north on Tuesday, and went and booked myself a doctor's appointment instead. I'm going to be no help if I'm out of play from my own health issues. I've pretty much concluded the ongoing shoulder issues are a torn rotator cuff, which my bendy friend tells me is a bendy rite of passage - yeah, right, one I could do without, thank you very much! But she's right in saying I need to see about getting it treated, and to arrange things so that it isn't under the stress of me using crutches all the time - which is why I booked a double appointment with the GP so I can say 'shoulder's buggered, 1) I need it fixed, 2) I need a wheelchair so I have options, so 3) we need another try at a wheelchair assessment'.

And just to make everything even more perfect, I triggered a major backache while talking to my bendy friend on the phone - sat for too long, so, while the pain is now gone, I've had about 5 hours of sleep since Tuesday, and my body is at the 'why is the world spinning, make it stop!' stage of exhaustion. So I think I'm going to go and send off the short story I've been working on, and then I'm going to try and have a snooze.

And the way life's going at the minute. I'll no sooner get to sleep then the phone will go with {heavy foreign accent}'Hello, this is help department of Microsoft, there is problem with your computer and we need you to....'{/heavy foreign accent}
davidgillon: A foot, mine, in a camwalker brace (Boot)

My right shoulder has been getting steadily worse for the past few months (I've mentioned occasional subluxes, though that seems to have settled down), and I'm now having occasional days when it's becoming uncomfortable to use crutches (also days when left shoulder isn't happy either). Yesterday I lunged for a sliding plate (I missed it but it stopped just short of the edge anyway) and I pretty much screamed and collapsed, the pain in my shoulder was like being stabbed. (Oddly that pain's consistently about an inch below the shoulder proper and centred on the bone, so maybe attachment related, though other bits are manifesting around the joint and as high as the base of my neck). Slow motions are okay and range of movement is normal for me (or 'extreme' as my physio described it in terms of what's normal for others), but anything rapid, especially anything with a sudden stop, that's yell out loud painful.

So anyway I decided I had to make an appointment with my GP (I've been meaning to make one for weeks, but the whole sleep during the day thing hasn't been cooperating, fortunately I fixed that by not sleeping at all between Monday AM and 2AM Wednesday...), because not being able to use my crutches could get a wee bit limiting. Which of course ties back into really needing a wheelchair referral, which means I really need a double appointment because there's no sense talking about one without the other and it may well mean two separate referrals from one appointment, so probably fair to warn them in advance and negotiate the best arrangement with the secretary - which I do better face to face. So I got myself organised to get over to the GP's, putting off something else I was meant to be doing, only to find out when I got there that they were shut. I'd completely forgotten they've got new hours and now aren't open Friday afternoons (I'm not at all clear as to whether they still have a Friday PM surgery). Grrr....

So that was a wasted journey, but I took the opportunity to swing by the supermarket, so at least I'm not eating solely out of tins, and then I popped into PC World to look at laptops. Which of course meant that by the time I got home not only wasn't my shoulder entirely happy, but my ankle was aching.

Which raises an interesting possibility. I've been trying to figure out what started my shoulder having issues. I've been aware of it to some degree since certainly early August (before Worldcon, so it wasn't the chair hire there), possibly July. If I push it that far back, then that's practically back
to when I fell off the bin and sprained my ankle (don't ask why I was on the bin <g> ). I didn't think I'd hurt my shoulder, but it is the arm I landed on, and I made such a spectacular mess of my ankle I wouldn't necessarily have noticed, especially if it was only showing when I was putting a load on it and I was avoiding walking for obvious reasons.
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
Fun day yesterday being fed and entertained with fannish conversation chez [personal profile] kaberett, first time I've been introduced to anyone as 'And this is @WTBDavidG' :) Good to put face to screen-name for a bunch of dreamwidthy folks.

Spent all 5 and a half hours sitting in [personal profile] kaberett's wheelchair, long enough to be able to say 'no, this isn't quite set up right for me' - I suspect I'm maybe an couple of centimetres longer in the leg, so the footplate is slightly too high - 'but it's still the closest seat to comfortable I've found in 20 years'. Chances of me holding an upright posture in any other chair for that length of time are just about zero. So definitely worth pursuing.

Continued experimenting with wearing AFOs (ankle braces) if I'm going to be on my feet a long time (or even just potentially), bendy ankles definitely appreciate the extra support, though it slows me down enough that getting onto escalators in the Tube is now somewhat marginal. Of course the idea is to switch to a 'chair for that kind of thing anyway, so lifts will become mostly mandatory.

Four words to strike fear into the heart of any rail traveller: 'Rail replacement bus service' - fortunately only between Chatham and Rochester, which is just about 5 minutes, and not a problem on the way to London, but coming back, when I was backache-y and really not wanting to be on my feet, let's just say it's a good thing they aren't trying to run in a brewery. Unfortunately didn't manage to get any reading done on the train because, running late to get out the house, I picked up the uncharged Kindle rather than the Kindle Fire I'd purposefully charged overnight *headdesk*

Because I wasn't watching my posture when I got home, I managed to turn a niggly backache I picked up on the train into one that's lasted nearly 24 hours now, which should hopefully drive home the posture message, fortunately I managed to find my electric heat pad (best Christmas present ever!) before it got out of control.

Backache plus that pleasantly stuffed feeling that comes from having been very well fed mean it's been a sluggish sort of day, mostly spent flat on my back in bed, but a pleasant one nonetheless.
davidgillon: Text: You can take a heroic last stand against the forces of darkness. Or you can not die. It's entirely up to you" (Heroic Last Stand)
... not.

Discussion of messy minutiae of one of my pain patterns below the cut. Not one to read while eating.... Mostly documenting it in the hope of fixing it in my brain.

The messy details... )
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
DiversifYA's interview with me on living with Hypermobility Syndrome, being disabled, and writing disabled characters is now up here.
davidgillon: A foot, mine, in a camwalker brace (Boot)
I had lunch with a friend who had seen my mention on FB of doing the Living with HMS/EDS thing for DiversifYA, and in the course of chatting about it mentioned the fellow bendies I'd met at Worldcon. That got us talking about the fact all of us weren't just bendy, but neurodiverse* even though there's no documented link and she made an interesting point (well I thought it was interesting anyway).
 
She'd asked me how common HMS/EDS is, I'm not sure what the figure for HMS, but I've seen 1 in 2500 to one in 5000 suggested as the incidence for EDS, which on a UK population of 60 million suggests around 12-24,000 UK bendies. My friend has Post Polio, and commented the UK Post Polio population is about 120,000, so 5 to 10 times the size of the EDS population (this surprised me, I'd have guessed the two populations at about the same), and just as with EDS, the Post Polio peeps suspect there are a bunch of co-morbid conditions, but even with the much larger patient population no one has actually sat down to confirm the links. So if it hasn't happened with PPS, maybe it's no surprise it hasn't happened with EDS.

* And those are by no means all the neurodiverse bendies I know, I'm actually struggling to think of any bendies I know who aren't neurodiverse, and most of those are queer too...

In other bendy news, wearing an AFO seems to work just as well as the Camwalker in managing my ankle, which is randomly unhappy again, and with the bonus of not inducing a two or three inch leg-length discrepancy, which makes my pelvis happy...

Bendy Me

Sep. 3rd, 2014 08:30 pm
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
So, I spent a couple of hours this afternoon doing an interview (via email) for DiversifYA (a website that advocates for more diversity in YA fiction, one of the precursors to #WeNeedDiverseBooks) on living with HMS/EDS. It was intriguingly difficult to answer the 'What was it like growing up with HMS/EDS?' question as no one I knew had even heard of it at that point, and my bendiness didn't become noticeably disabling until 24/25-ish - I knew there was something going on, but never realised there was a disability (or three) lurking. I'm not sure it's actually possible to discuss the growing up experience without bringing in the dyspraxia and neurodiversity, as the bullying certainly didn't draw a distinction between them! But again, no one had heard of them at that point (late 60s to early 80s).

I'll post a link when it goes live.

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davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
David Gillon

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