davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
Or day and a bit.

I've really not been out of the house much this year, one bug after another and winter weather, etc, so yesterday afternoon I decided I really needed to pop out, at least to the supermarket. So I got myself ready, got the chair into the car, buckled up, turned the ignition, and the car went "wwwrrrrr".

Flat battery, enough power to work the dashboard, not enough to work the starter. I guess I really haven't been using it. It was getting dark at that point, so I left it for today.

Just to add to the fun, I woke up this morning with neckache. My neck is a lot better than it used to be*, but  I'm having a day where I can't decide whether I'm happier with a collar on, or off, which is a real pain in the neck. The pain levels aren't actually that high, but come with associated nausea and a slight light-headed feeling, which isn't my favourite thing.

I missed my chance to snag my neighbour and ask for a jump start, so I had to go for my battery charger, which has a solid record of charging my battery - it's never worked yet. I don't think it has the oomph to charge an actually discharged battery. So picture me fiddling about under the bonnet, while wearing a collar and unable to look down properly. Also picture me confirming 4 hours later the battery charger has kept up its record. I'll see if I can catch my neighbor tomorrow, if not I'll have to dig around and find the contact details for whoever my homestart is with this year.

And to add to the fun I remembered to go out and check whether there was any damage from this week's storms - something was making a disturbingly metallic screeching noise while the wind was blowing. So picture me trying to look at the roof of the house while wearing a hard collar - just as well I have a long garden. The roof of the house is, thankfully, fine. Then I looked down.

The roof of the shed, not so much. Fortunately it's just the tarpaper that's ripped and flapping loose, the wooden roof is intact, but it will still need replacing properly at some point. For now, picture me wearing a hard collar, tacking down a rip that's a foot above my head and as far away as I can reach.

I have a bottle of wine, and I think I'm fully entitled to use it.

* I wore a hard collar 23/7 for pretty much a decade. The root problem was probably a C5/6 disc prolapse, but it just wouldnt get better, As far as I can tell the problem was the way I limped putting lateral stresses on my neck, it finally went away spontaneously when I started using crutches and my limp smoothed out.


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)

Grrr! Paresis - pins and needles, loss of fine motor control -- in my left forearm and hand is pushing up towards 50% of the time at the moment.

It's happened before, repeatedly so I'm fairly certain the cause is my ongoing C5/6 disc bulge, which was judged not worth doing anything about a few years ago. when the symptoms were if anything worse.

It's pins and needles, it's not even screaming pins and needles, I can live with it.

But it's bloody annoying!

That is all

davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
So I settled down for a mammoth #Pitchwars editing session yesterday, and procrastinated.

For six hours.

It's just possible that I'm feeling some anxiety over this.

Not only did I make a meal, play two games, read a book, and spend a good chunk of time on the net, but I also completely changed my writing environment, so that rather than use the couch to lie on I'm using the spare bedroom in a sort of day bed arrangement (I can't sit comfortably enough to write, so do it lying on my back with laptop on chest).

Anyway I did eventually manage about four and a half hours worth of editing and made some solid progress, cutting about 600 words from Chapter 1 (i.e. a couple of pages worth), though that doesn't reflect the amount of change, which I'd say is probably about triple that - there's the text you cut, the text you rewrite, and the text you cut, and then replace with completely new text saying different things.

In embarrassing observations, I realised that I had never introduced my protagonist by rank and surname before people start using them, whoops. (Well, originally I did, but that chunk of text got cut about a year ago), so immediate scrabble to find a place I could put that in, and it actually let me say other stuff I probably should have said about what was going on.

And then I saved the file, and promptly fell asleep, with the laptop on my chest (it actually went, I think, save file, put laptop on floor, half nod off, think of further changes, pick laptop up, implement them, fall asleep).

Fortunately the laptop was still there when I woke up, unfortunately I'd also done what seems to be an increasingly common problem with my sleeping and drawn my legs up so I'm lying in this splayed, inverted frogs' legs sort of position, and moving my hips out of that damned well hurts. I'm trying to think of a solution that doesn't involve tying my legs together and not getting very far.

And now, back to the editing, Chapter 2 awaits.

Well, once I'm done procrastinating.
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
 Grrr.

There's an inevitable progression when I'm in pain to disrupted sleep, and it isn't as if my sleeping makes a great deal of sense at the best of times.

Saturday's trip into town threw things into high gear, and I hadn't the sense to go find the painkillers when I got home (which worked very nicely when I was suffering the aftermath of the Athenian cobbles last week), which meant very disrupted sleep on Saturday night. Sunday wasn't  much better, and I spent so much time trying to arrange things so that I wasn't actually in pain (to a certain degree of success), that I ended up not actually getting to sleep at all.

Which meant come some indeterminate time yesterday afternoon I had about five minutes warning I was going to crash come what may. I got myself arranged on the couch, and woke up around 4AM. If I'd known it was going to be so long (possibly as much as 12 hours, I'm not sure), I'd have headed for bed and not couch. I thought that was going to mean another disrupted day today given how early I'd woken, but fortunately I dozed off again about 7AM and slept through until almost 11AM, which hopefully is enough to set me back onto the theoretically normal schedule of sleeping during the night, not the afternoon and evening.

Ideally I'd not stir myself today (and for most of the week for that matter), in the hope of persuading pain levels to remain low - they're almost non-existent as long as I don't move around - but I absolutely need to arrange a repeat prescription today, and the cupboards are looking extremely bare, also theres no beer or wine in the house and that helps with pain control, so I'll have to nip out later.

Here's hoping that doesn't trigger another inevitable progression....

(Fortunately there are no cobbles where I'm going).
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
Bugger, Athenian cobbles seem to have sensitized my back to Rochester cobbles. Just my normal Saturday trip into town for lunch (unfortunately I was the only one out today) had me gasping in pain. I'm actually at pre-Butrans levels of pain - even though I've have the new Butrans patch on for the last 24 hours - for the first time in ages and I'm not enjoying the reminder. I rolled down into town from where I parked, but that was probably a bad idea as I then had to sit through my meal feeling distinctly off - it's a bad sign when you're gasping sitting still. Coming back I just couldn't face pushing uphill on the cobbles*, so got out and waddled with the chair as a walker, the only bit I pushed for was the roughly level/marginally downhill tarmac path through the Vines (small park).

I had a look at Google Earth last night and my two trips into Athens city centre were both roughly 2.5 miles or so (I was going to say 2 miles, then realised I was still working in Nautical Miles!), that makes them comfortably the longest distance I've ever pushed in one go. I might have expected a little reaction to that anyway, but the fact it's lumbar spine and hips rather than shoulders and arms says it's the surface was the problem, not the distance.

I was planning a trip up to Durham, with the end of this coming week as a possible travel date, but I think I need to avoid pushing things so I'll push that off until later in the month, there's no sense going up to see Dad if I'm not physically well enough to get to the nursing home from the house. (I had assumed there was a fair likelihood this would be the situation, so there shouldn't be any issues with the rest of the family expecting me to hold to a specific date - in fact they were likely convinced there was no hope I would make the earlier date).

I had an interesting observation in an email from one of the friends I was on holiday with, saying he felt I was noticably more awkward in moving about than in previous years. He hasn't seen me in a couple of years, so it might just be lack of a recent reminder, or it might be a consequence of using the sticks and AFOs versus crutches, or he might be seeing something I'm missing through familiarity and not seeing gradual change. I've prodded for a more detailed explanation.

* Actually the bits I was going over are primarily bricked road and paving, rather than true cobbles, so nowhere near as bad as the sharpened cobbles of Ermou.
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
Think I had a pancreatitis flare-up last night, two hours of shivering in pain etc, which was really no fun at god-awful O'Clock. 

On the positive side, 2 hours is a hell of a lot better than 9 days.

On the productive side, was actually thinking 'I should turn this into a story' and plotting while curled up in a blob of pain.

Delenda est my gall bladder!
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)
Or why IV morphine is now my second favourite thing in the universe....

I said last Tuesday the plan was to head North in the morning, that plan didn't survive contact with reality, in particularly the reality that had me dialling 999 at 6PM that night because the backpain and vomiting had reached the point I was yelling in agony and couldn't catch my breath. The paramedics rolled in almost before we were done with the basics of the call, scooped me off the bathroom floor and whistled me off to Medway-Maritime Hospital.

(Note 1: damn, ambulances are uncomfortable!)
(Note 2: IV paracetomol, surprisingingly effective).

I appear to have set some kind of record getting through A&E - the patient in the next bed overnight has a ward named after him, has won multiple awards for his work in the hospital, including a BEM (British Empire Medal) last year, his granddaughter personally upbraided the Director of Nursing in the middle of A&E over the care he was receiving and he still took about eight hours just to get a bed in an A&E cubicle. For me, they whistled me in, slung me on a trolley, grabbed some blood, moved me a bit further into the unit and then slammed me full of IV morphine (see opening comment on just how much I now love IV morphine). At which point one of the doctors seemed to make me his personal project and basically drove me through the system - A&E cubicle, X-ray,  back to the cubicle, short wait for the bloods, and then he came back with the announcement I had pancreatitis, and within a couple of hours of dialling for help I was on a bed in the Surgical Assessment Unit.

I got a fairly quick explanation that the treatment was run by surgeons, but basically involved keeping me hydrated and my pain under control, and then spent most of Wednesday through Saturday being pumped full of: IV morphine, IV antibiotics, IV anti-nausea, IV anti-emetics, and with a constantly running side order of IV fluids - basically I sloshed. So I was also catheterised. Which isn't one of my new favourite things in the universe.
 
By Sunday the pancreatitis was just about sorted, bar bloods settling to normal. So I promptly got a chest infection (despite the IV antibiotics - so likely a virus) and I've spent the last few days with a hacking cough. My back isn't great to start with, the pancreatitis mostly manifested as racking back pain and nausea, and then I get something that constantly irritates my back. Sod's Law.

I nearly got out on Tuesday, but they decided to hold me another night just to be extra sure, told me I could go at 8AM this morning, and finally got the paperwork sorted at 2:30 this afternoon. So I'm now home, sore, tired, but mostly okay. And I still have to head North at some point.

Unfortunately one of the things they figured out was the reason I got the pancreatitis - gall stones, so I'm back in about six weeks to have my gall bladder removed. My comment on being presented with this option was 'Please, take it out and terminate it with extreme prejudice' (I decided 'Please, take it out and inhume it with an axe' was probably too fannish).

Other observations: 
Do these people have a crusade against letting you sleep?

4 bed bays, not actually that bad (once we got rid of Mr 'Nurse! Nurse!' - I never once heard a 'please' or 'thank you' out of him in four days and he'd be demanding the nurses find the bed remote while they were in the middle of installing canulas or the like on the other patients), bar people like that it's nice to have a little bit of company in a similar state to you.

OTOH 4 bed bays at visiting time when you're neurodiverse and everyone else has multiple visitors you don't know holding multiple conversations that you can't escape from are pretty much hell on Earth

Some people really shouldn't marry each other,  they just emphasise their bad traits. Perfectly nice elderly guy in the next bed, but whenever his wife turned up their conversation turned into Mr & Mrs Disgruntled of Tunbridge Wells/a UKIP parody. I think I even heard her criticising the Irish Navvies at one point - Good God, Woman, that was Victorian era!?!

My God was my treatment multinational, I had nurses from Spain, Ireland (Aine, looked about 12, brilliant nurse, ironically the one everyone had most difficulty understanding), Poland, Lithuania, and I'd guess from names/accents/ethnicities multiple parts of Africa, Malaysia and the Phillipines, plus of course Brits of multiple ethnicities. Just a great example of why immigration is so good for us.

I now have to re-evaluate a decade plus of back ache issues, because it appears all the really, really bad ones were actually prior pancreatitis attacks that didn't get bad enough to hospitalise me. And the best advice on avoiding any more before the op was 'Zero or low fat diet, but we've had people have them while on a diet of salad' - at least that's only six weeks or so, but Christmas Dinner looks like being slightly constrained this year.

IV Morphine dreams: weird. IV morphine fever dreams: weirder still. IV Morphine fever dreams as directed by HR Giger whilst experiencing abdominal pain: could really have done without those two.
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: 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)
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 ;)
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
The past couple of weeks have been fairly unpleasant (I'm British, I do understatement).  A combination of diffferent factors, particularly the ESA assessment I talked about before, threw me into a fairly major flare-up in my pain levels and I basically spent the first week alternately curled up in a hot bath or curled up on the bathroom floor with spasms in my core muscles seemingly trying to rip my back apart. That really wasn't fun and my sleep was so disrupted I actually lost track of what day it was. Last week was slightly better, no muscle spasms, it just felt like I've been dragged down a back alley for a good seeing-to by a couple of gorillas with baseball bats. I eventually got myself over to my GP late in the week and asked her if she was okay with me boosting my dose of Butrans (aka Buprenorphine) to 10 µg/h from 5. I could have done that without going to see her by stacking two 5 µg patches, but then I'd have needed a repeat prescription anyway. She okayed that without hesitation, no matter it's a controlled drug (she's been treating me for as long as I've had this and knows me well), but absolutely wouldn't prescribe anything beyond ibuprofen for breakthrough pain. If the pain is blowing through opiates on the CD list I'm not personally convinced that ibuprofen is going to make a measurable difference, but what do I know, I'm only the patient.



I woke up this morning thinking I felt pretty good for the first time in over a fortnight, then I looked outside and realised that it wasn't morning any more. When I checked a clock it turned out I'd slept about 11 hours and given I hadn't gotten to sleep until late it was mid-afternoon -- looks like the increased dosage has really kicked in. This is actually why I gave up on the 10 µg/h patches last year. Not because I don't need them, there were times the pain blew through them so clearly I need at least 10 if not 20, but because I was so constantly sleepy. Now the pleasantly half-awake feeling is nice first thing in the morning, but 24/7 it gets a bit wearing. I've got to say that it's a distinct improvement on the past couple of weeks, but I'm not planning to stay on the increased dosage for any length of time. I may stretch it through my holiday in about six weeks, but no further if I can help it. I like being awake enough to think, thank you!



PS: Memo to the muppet who parked in the disabled bay next to mine at the doctor's, the hatched area between bays is so that I can get my door fully open, not so you can snuggle your car up close to mine! I wouldn't care so much if you needed the space to get out, but there was 30 feet of unobstructed pavement on your driver's side....

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

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