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)
Sometimes you start with the best of intentions, and then it all goes to hell.
 
So I saw my GP yesterday and it was the young, with-it one, rather than the elderly, baffled by her computer one. And everything went great, I got the referral for my shoulder issues that I wanted, I got the agreement we needed to try again with the wheelchair assessment, she checked my blood pressure which was okay (which considering stress etc is really good), and then said, 'Oh, and you've not had a blood test in a while, so here's the form, and it's a fasting test, so nothing after 7PM'. Oh, great.

So I got home, by which point it was gone 5PM, and, not actually having had anything to eat yet at that point - bad night, 4 hours sleep from 8AM til Midday, decided that if I wanted to do the blood test on Tuesday I'd better have something to eat right then. So I threw a pizza and some garlic bread in the oven,  and they were yummy, but given time to get organised, heat the oven etc I was pushing that 7PM deadline, and had to rush the meal, which shortly after manifested itself as indigestion.

And then I fell asleep, and slept until midnight. Now I'm not about to turn my nose up at 4 or 5 hours of clearly needed sleep, but sleeping on top of indigestion meant I woke up with not just indigestion, but indigestion and backache. This is a bad combination for me and rarely ends well. So I found my heat pad and a book, a couple of ibuprofen and half a bottle of wine and settled down to try and wait it out.

About 3AM it was clear the backache was gaining on me, so I abandoned the heat pad for a hot bath, and when the bath wasn't enough a pounding shower directed right at the knot of pain growing at the back of my ribs. And then the inevitable happened and I finished the night by vomiting everything up into the toilet.

That broke the back (ha!) of the pain, but it was pretty much 8AM before I got to sleep again, and I slept through until 2PM. So now it's 4PM Tuesday, I've had bugger all to eat since whenever I last ate on Sunday and I've got an 'I need to be fed, but gently' stomach ache (fortunately no back-ache) and I'd guess it's going to take a couple of meals before I'm back to normal. So I guess chances of the fasting blood test happening Wednesday are pretty slight.

Why is it never simple?

And I've still got the blood test and the competitive sport of 'find the vein' (I've literally had nurses queueing up for a try in the past) to look forward to.
davidgillon: Text: I really don't think you should put your hand inside the manticore, you don't know where it's been. (Don't put your hand inside the manticore)

So I finally (Friday) sent off the short story I've been working on all month to the Accessing the Future anthology of disability-focused SF. That makes it my first submission in about five years (and ironically that one was an earlier, and very different, version of the same story). While I've written far more this year than in previous years, it's clear that I'm probably writing enough that I should be able to produce as a minimum a couple of stories most years (the ideas are there, the execution, not so much). I'm not quite sure why my submission rate is so low; or perhaps that should be I have suspicions why my submission rate is so low. Avoidance behavior. There has been a lot of avoidance behavior, an awful lot of avoidance behaviour; I have several gaming/military/alternate history projects that will happily swallow as much time as I can throw at them for the rest of my life. And I do know that I have definitely been using them that way until I was ready to write. But it took me a fortnight to polish layout on that story and get it sent, when realistically it was a couple of hours work. Okay putting the submission letter aside for a couple of days did result in an insight that completely changed the way I  view the entire story - and that handily provided a handle on which to sell its virtues to the anthology, but still.... Am I so scared of rejection letters it cripples my ability to write?

Not helping on the writing front was this week's sleeping pattern which went something like:
Monday - 4 hours?
Tuesday - Um, nope
Wednesday - 4 hours?
Thursday - 6 hours?
Friday - Um, nope
Saturday - 16 hours (yes, 16)
Clearly stress over family stuff has a part to play in that, I'm not sure if submission stress played a part, but in some ways that's not too atypical apart from only managing 4 hours so often. Mostly if I can get to sleep I can sleep for longer than that. 16 hours as a catchup was a little excessive, but clearly what I needed (especially given my left foot had decided to randomly start aching and my left knee came out in sympathy - both fine this morning).

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 pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
 So my day seems to have been defined by sleep, interrupted by stressful phonecalls from my sister on the situation with my father (or more precisely with the rehab unit being arseholes). I've almost entirely missed daylight today, having slept from roughly 5AM to 4:30PM with about an hour awake when she rang 10:30ish. I'm furious with the unit for the distressing way they spoke to my mother this morning, a blunt 'so have you decided if he's going home or into care?' almost the instant she arrived, when they've only just dropped the bombshell that they don't think there's any point in him being there and no one has had a chance to process that yet, but I armed my sister with a few necessary facts and pointed her at them (this is roughly equivalent to 'Unleash the Kraken!' but scarier).

Meanwhile my dad, unaware of this, has spent the day hitting all the targets that they said he wasn't able to meet, to the point that the doctor causing the issues has had to back down, and, combined with my sister insisting on speaking to people they've agreed he'll have at least 2-3 more weeks on the unit.

To some extent it's only crisis deferred, but maybe I'll be able to relax enough to sleep tonight.
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
Got myself upstairs by 2AM, which is better. Though on reflection it probably wasn't a good idea to go and check if the job I'd left running on the computer had finished, and then let myself be lured into fixing the issues that had thrown up. So in bed by 4AM-ish, read the first four chapters of Sophia MacDougall's 'Mars Evacuees' and probably asleep 5AM-ish. Slept through until 2:30PM, which clearly my body needed, but which probably isn't going to make getting to sleep any easier tonight.

Not having much time before dark, I go myself organised for the daily waddle much more quickly than yesterday, though it ended up being the same 3:30-4PMish given the late start. Quite a pleasant day really, though given the chilliness yesterday I made the sensible call to wear jeans rather than joggers. I think I'm back into the normal swing of things of doing this daily, though there's still a deterioration in my walking in the second 400m - that's been fairly consistent even when I was doing this daily during the summer so probably isn't going to go away.

Now to see if I can bribe myself into doing the daily exercises, which given a couple of them involve supporting myself with my arms, could be interesting for my shoulders (yes, I'm doing that when I use my crutches, but they seem to be happy enough with a straight up and down vertical load, it's any other position they're objecting too).

And then later we start on the whole getting to sleep thing all over again. Oh, joy!
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
Two days running, for first time in a couple of months. This is progress, though I still need to restart daily exercises, and sort out my sleeping. After failing at sleeping at the appropriate time (or at all) last night I decided about 8AM I would try and stay awake through until this evening, at which point, having been awake 36 hours, I would hopefully fall asleep at the right time.

And promptly fell asleep until midday. Buggrit! 

No, body, 4 hours isn't enough....
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
I've been having trouble sleeping this week. When I'm awake I can control my shoulder to stop it sliding into the areas where it's currently generating drop you to the floor cursing levels of pain, but when I'm asleep it's more difficult, particularly as I normally sleep on my side and that tends to result in the shoulder slipping forwards or backwards, neither is which is great. Waking up has gotten to be a whole lot of no fun. If something causes you pain there's a subconscious tendency to avoid it, so I've been staying awake reading until late into the night (and through into the morning on occasion), waiting for that moment I'm so tired I can slip straight into sleep.

Of course that presumes the rest of the universe is willing to let me. I'd been asleep for barely a couple of hours on Thursday morning when the physiotherapy department rang to arrange the physio I'm scheduled for on my shoulder. That was good news, I suppose, I've been waiting a month and a half for the appointment, but couldn't they have rung in the afternoon? (I'd been reduced to strapping my arm up and putting a collar on to get any sleep at all, so the picture of my trying to answer the phone one handed in the dark -- blackout curtains -- while half-awake was probably pretty amusing, for values of amusing that include not being me).

Last night was much the same, I finally drifted off to sleep at about 6AM, secure in the knowledge that I would be safe from interruptions on a Sunday.

Was I hell! 11AM the phone rings, it sounds like a teenager working a weekend job, but I can't ignore her because she says she is from ATOS, ringing to arrange my new WCA assessment for ESA (Employment Support Allowance is the replacement for Incapacity Benefit, the UK's disability benefit, the Work Capability Assessment is the test of whether you qualify and ATOS are the company of ill-repute to whom the testing has been outsourced. My last encounter with them went less than well).

At that point I might just have managed 5 hours sleep, so I was less than appreciative, but I have to go to the interview. After the disaster of my last WCA I made sure to point out that I absolutely needed them to have an adjustable chair available for me. I now don't just suspect that their seating might be capable of throwing me into a major flare-up, I know it for a fact. The girl on the other end told me to hold on while she went and informed their medical side about that. She was back a couple of minutes later sounding awfully like she hadn't found anyone else in the office on a Sunday (surprise, that!) and telling me "I don't know much about that area, but I'm sure they'll contact you about it".

Colour me less than convinced.

And now, if you'll excuse me, I'm going to go and try and have a nap....
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
I just slept from 8 'til 8, unfortunately that's 8AM through 8PM rather than vice-versa, and I still feel half awake. It looks like it was a gorgeous day, but I've basically turned nocturnal. That's largely down to increasing my butrans (painkiller) dosage from 5 µg/h to 10 µg/h, it's letting me sleep normally (or, given I just slept 12 hours, abnormally), but it robs me of the flexibility I need to shift my sleeping patterns back to normal once pain disrupts them -- which it does regularly. Now that negative comes tempered with a very large positive, increasing my dosage has taken my pain levels back to what I would describe as normal, but it's still a problem in its own right. 



The change in dosage has also shown me something I'd been only semi-aware of, which was that I was becoming less and less able to tolerate sitting at my PC (as opposed to lying down using my laptop). It wasn't that I'd temporarily lost interest in the computer graphics I use the PC for, which was what I'd assumed, just that I couldn't actually sit there for long enough to do anything. That seems to have been gradually building since Christmas, so if you assume that's symptomatic of my pain in general then maybe the roots of the early May flare-up go back further than I thought. Up the dosage and suddenly I can sit at the PC and do stuff again. Not sit at it freely, I still get the building levels of pain that caused me problems while I was working, but at least it's not a case of reaching intolerable levels of pain within the first five minutes any more. And what applies there probably applies to everything I do -- pain can creep up on you and 'normal' can change without you really being aware of it.



So I'm back to what theoretically passes for normal in terms of me and pain, having the choice to be pain free by lying down, or in increasing pain by doing stuff that involves sitting or standing. That's limiting, disabling even ;) , but it is normal for me and something I can live with. OTOH I'm not so sure that I can tolerate the sleepiness indefinitely. It feels like there is a wave of primal sleep perched at the front of my brain and ready to wash down over me at the faintest opportunity, I've had at least a couple of instances of dropping straight into vivid dreams in the middle of doing stuff and thank god I turned off the bath taps before falling asleep for two hours yesterday ! Cognitively I'm definitely off, I had two people take offence at postings on other boards yesterday where I really didn't mean to be offensive. Things are just slipping my mind and I'm really not eager to try driving just yet, nor dealing with authority. I have a hospital appointment to sort out, my disabled parking badge to renew and an assessment for ESA to reschedule and I really don't feel up to any of it.



Sleepiness is a recognised side-effect of Butrans, I don't get it on 5 µg/h, or at least not noticeably so, but obviously I do get it on 10ug/h (which makes me feel a complete wimp when other people I know are functional on 52.5 or 70 µg/h). I spent six months last year trying to build a tolerance to it on 10 µg/h without noticeable success and, even though I really wanted to try increasing it to 20 µg/h, ultimately I chose to drop back to 5 µg/h even if that means dealing with more pain. That experience was why I was still reluctant to have to increase it even after a week of agonising muscle spasms. Ultimately I recognised that I needed to give my body a break to try and allow things to settle, even at the cost of several weeks of sleep-walking zombieness, but if I'm still in a flare-up when I try to drop back down to 5 µg/h I'm going to be facing a very difficult choice.



For all that I've just pointed out the problems I'm having with Butrans, I still think it's the most beneficial painkiller I've been on. It's the only thing I've tried with a reliable 24/7 effect, I'm just not able to tolerate as high a dose as would be necessary to eliminate all of my pain. What it has done is knock out maybe the bottom 20% of pain, the comparatively minor stuff that wears you down by being there all of the time. I don't wake up in pain anymore and it really does give me the chance to decide whether I want to be in pain or not, and even if the choice, lie flat in comfort or do stuff in pain, is physically limiting, there's still a lot to be said for having the opportunity to make it. 



And now, if you'll excuse me, I think I need to go and take a nap ;)

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

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