Tuesday, 29 November 2011

Feeling good today.

After a string of bad days - including neck pressure forcing me to sit up all nights, a fight with the shrink about how to address my abandonment issues, very high morphine levels, hysterical tears over nothing, and a return to bed-all-day because of uncontrollable pain - it feels about time.

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Tuesday, 22 November 2011

Sat up in the lounge till 10pm today - the first time in 9 months.

That's obviously a good thing and a pretty big deal, but it does suggest a somewhat better day than it's actually felt.

Yesterday was appalling - the neck pressure was hideous, and nothing was working. It had been building to that for days.

Today I decided not to use the sling because I've been using it every day, but the past few days, the neck pressure has got very bad later in the day, and I wondered if it was because of the sling.

It looks like I was right, because the NP hasn't got as bad today, though it's been - and remains - very volatile. I can't sit face on or twisted to the left, I can only sit twisted to the right. Lying down isn't great either - I can't get the pillows right, which leaves my head feeling ready to explode, and the shoulder pain taking my breath away.

I did manage to get the chins out this evening, which was good because I'd been really missing it, and they were so cuddly last time. It was well worth it, I got lots of furry cuddles, plus some nibbled fingers.

I did a lot of stuff on the laptop this afternoon too, which gave a very welcome sense of achievement, and I both arm- and leg-pedalled to try and loosen things up. The doc says the more I can move through the pain, the better, but that doesn't help how much it hurts and how scared I am of what it'll do.

PS. It looks like I'm going to have to spend the night sitting up, because the NP is impossible lying down. Which means no sleep, because I just can't sleep like that. I'm dreading it.

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Sunday, 20 November 2011

Pain keeps on exploding, it takes my breath away every few minutes.

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Saturday, 19 November 2011

Raging tinnitus

I was woken up at about 3am this morning by the most bizarre thing - appalling tinnitus.

I'm serious - it sounded like a badly tuned radio in the next room. There was an undertone of sound that resembled voices, talking and laughing, too low to make out any words, coupled with a low rumbling/murmuring/buzzing.

For ages I thought I was just hearing someone's radio. I still can't be certain that wasn't the case, except for the fact that wherever I went in the flat it was exactly the same, and blocking my ears made absolutely no difference. So it had to be coming from inside my own head.

The only reason I could think of for it was that I'd taken Etoricoxib that night (the anti-inflammatory, recommended by the doctor to help the extra pain from moving more), coupled with the fact that my 'ear eczema' has been bad for days, and I forgot to ask the doctor for some ear drops to treat it. I haven't looked at the SEs to check if it's a known problem, but I was terrified that, on top of everything else, I was now going to be stuck with tinnitus for the rest of my life. I've heard of people who have it for 25 years; I just couldn't bear that.

Fortunately, it was gone this morning and it hasn't come back, despite taking the Etoricoxib this morning. I hope to god it doesn't.

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I was doing OK this morning. I desperately had to get my prescriptions from yesterday round to the pharmacy - I'm nearly out of morphine! - and I also went to Tesco for my lunchtime bagels.

The trip seems to have been my undoing though; the neck pressure got steadily worse, till I had no choice but to go to bed and put my arm into extreme traction.

Luckily that helped, and on top of that, the morphine today is knocking me flat. So I've spent the afternoon off my face, on not-that-many-pills. I daren't move though, having found the right position, so I've been lying like a statute for the past two hours.

If I wasn't so stoned, I be going stir crazy from it, but actually, I couldn't care less!

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Friday, 18 November 2011

I asked the doc whether, given the current experiment and improvements, it would be helpful to go back on the anti-inflammatory Etoricoxib.

I don't know what made me think it would help - I don't know that much about the stuff, it just seemed that it might. And he said it would, if I'm going to be trying to move it more or do any exercises.

So I'm trying it, even though in the past it's caused me stomach problems and weight gain. That's particularly worrisome, because my stomach has actually improved lately, despite the morphine, and I don't want to ruin that.

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Thumbs up from Doc

The doctor surprised me today, by being very impressed with the new sling.

I'd expected him to do his usual 'I don't like seeing you with that', like he did with my stick and the ordinary sling. But instead, he was really pleased with it, and with the experiments I've been doing trying to move my arm more, using the arm pedaller, and getting out and about more. He was really pleased to hear about me sitting up more, staying over at a friend's for the first time in nine months, and all the rest.

He said he had no doubt it was the arm pedalling that had kicked off the pain and neck pressure, but told me to keep trying. He said the more I can move through the pain, the better. He agreed I can try swimming again, and gave me some ideas for very gentle exercises.

He wasn't worried that morphine levels remain high, and he said he's still optimistic, because I'm always trying to find new avenues to get better, I'm always willing to experiment, and I just really want to get better and to work.

He's going to talk to the shrink to try and get her to give me the help I need, but in the meantime, the message is to just keep doing what I'm doing.

Of course it's not all good news - I'm still getting hideous pain and neck pressure, plus very little sleep, and I'm still very restricted. There are still lots of days where I'm stuck in bed, I'm still drugged to the eyeballs most of the time. But the sling is allowing me to sit up some of the time, and giving me some good days. Which is better than nothing.

Unfortunately, however, the doc didn't seem to think the improvements mean there's anything they can do to help me. Some of us had been thinking that if a 'mechanical' fix helps, surely that means something could be done surgically. He said the improvement is just because my arm is being held in a more natural position now, and that's allowing me to move it a bit more.

I'm disappointed, but not entirely surprised. And at least it means I don't have to go through endless tests and examinations, just to be told yet another branch of the NHS won't help me.

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Thursday, 17 November 2011

It's 2.30am. I've been taking 3 Oxynorm every 3-4 hours, and still I can't sleep; I'm cycling through pain followed by neck pressure followed by pain.

I'm in a strange bed, in a strange house, so it's not like I can even go watch TV or talk to the chins.

I just want to go to sleep, pain-free.

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Drove to my friend's house for my first visit anywhere in 9 months and already it's a disaster.

The roads were really busy, full of idiot Yummy Mummies who don't have the skill or the brains to drive the cars they're in. Trundling along, stopping for no reason, letting everyone into traffic.

I got to my friend's furious and tearful. Now I just want to shout and scream. I don't know why I'm so upset, but I could kill someone. It was the same when I got so angry with my sister on Saturday.

Everything is so hard, and stupid people and stupid things just make it harder. I don't know what to do. I just want to go home. I don't want to talk to anyone, or make jokes and it hurts! The neck pressure's so bad and all those people, they just get in the way and they think it's only that, but it's that on top of everything else. It only takes one thing to push me over the edge.

It's not fair. I knew all the driving stuff was triggering the 'not fair' reflex, but this is worse. Because nothing in my life is fair and then people do stupid stuff on top and I just can't cope. They have no idea what I'm already going through, the effort it's taken to get into that situation. And none of them has to go through what I do. I hate everyone else for not being in this situation.

The minute I walked in here I felt angry at them for their nice house and the work they're doing and all they have that I don't. And I know how stupid it is to hate people for not having my problems and I hate myself for being jealous of them. But it's not fair!

Looking at my notes on how to deal with my relationships, the point that's resonating is to recognise that this situation is 'me+whoever now', not 'mum & dad' then. I've got to take off the 'mum & dad' masks, stop projecting them onto this situation.

I guess it's because whatever I'd been through with them, it was never enough, and they'd always throw something else at me, and just expect me to cope. They'd never see that enough was enough, and stop.

But that was them, this is now.

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Tuesday, 15 November 2011

I liked this:


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Sunday, 13 November 2011

The fallout from my sister's visit yesterday has continued today.

Although I woke up with minimal neck pressure, I only managed to sit up for a couple of hours. I put the sling on, as usual, but the 'dislocate' pain quickly became too much. I took it off, but the pain didn't noticeably ease, my back was still very sore and I felt generally wiped out and exhausted. I was forced to lie down, and I've been in bed ever since. I've taken extra pills and I still can't get up; my back, in particular, is still very sore, and my shoulder is regularly stabbing at me.

It seems odd, given that I did less yesterday than on previous days, and it started off as a good day.

I think the thing is, though, that having people here, especially small ones, meant I wasn't just sitting up. I was moving around, twisting, turning, reaching, and getting up and down. Interacting with people is simply more active than just sitting up in the chair on my own. And working would be too.

So I won't be able to get back to work till I can manage that kind of activity. It also means that the visit I have planned to a friend's later this week - the first in 9 months - will take more out of me than I'd thought.

I had planned to drive home at the end of the evening, but clearly that won't be possible; I need to arrange to stay over on these sorts of trips, until I've built up some real stamina.

It's disappointing, but very useful information.

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I don't really know what to make of the past couple of days.

Yesterday wasn't good. All morning I was struggling to find a sitting position, with or without the sling, that eased the neck pressure. The only option that even partially worked was a very extreme one: turning the slung through 90 degrees and having my shoulder so 'abducted' that I was almost giving an inadvertent 'zeig heil' salute.

It was a bad day all over, and I was trying to rest and 'save myself' for today, because my sister was coming over with her kids. But when the neck pressure did finally go down a bit later in the afternoon, I couldn't resist using my arm more, as per the other day, and even did a few shoulder rolls in the shower. I was afraid I'd regret it today - last time I tried this, the next day was evil, but I just couldn't help myself.

But today's been good. I got up with it feeling pretty good - very little neck pressure, no noticeable pain. I couldn't decide whether to use the sling or not; last time I thought I didn't need it and so didn't put it on, I was in bed in agony by lunchtime. So I strapped it on, then used it or didn't, as the neck pressure seemed to require. It worked well, the neck pressure never did flare.

The big problem today has been my back -it's been pretty bad all day, possibly because of the lower-than-lately morphine levels yesterday. It got really bad after a short trip to the shops, so I've actually been in bed since about 2.30, and have needed quite a lot of pills. There's been some shoulder pain - not too much - but the neck pressure has never flared.

So I'm confused. Last time NP was OK and I did a lot, moved around a lot and used my arm a lot, the next day was terrible. Yet today was fine, despite yesterday's activity. When it took such extreme traction yesterday to get NP to go down, I thought that meant that the amount of traction required to get results would steadily increase, to the point that it was impossible to achieve, and so I'd be back at square one. But that's clearly not the case, because today I've needed little or no traction.

All of which currently suggests that my fear that my brain will find a way round my mechanical fix, so that it can continue to restrict the bloodflow and cause the pain, won't come true. I hope.

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Thursday, 10 November 2011

Last night was one of the worst I've ever had. I was forced to sit upright all night in the mother ship, because wherever and however I lay down, it immediately felt like my head was going to explode.

I tried every different configuration of pillows and ever arm traction setup that I could think of, and the neck pressure just got worse and worse.

Yet sitting up, with the sling on, was fine. So I ended up sat there, thinking about how shit I felt, all night long. I was desperate to sleep, but couldn't in that position.

I tried going back to bed about 5am and had the same problem, but eventually did manage to find a position where it eased slightly and I could drip off. Then I woke up feeling just as bad.

Bizarrely though, when I sat up with the sling, I felt fine - no pressure. I sat there all morning, feeling OK. I did various jobs and still felt OK.

It was only about 1pm that I had to stop, when the 'dislocate' pain exploded and I had to take a load of pulls and go to bed. I'm still there, and can't keep my eyes open.

The morphine is hitting me very hard today. Three hours after taking it, it's still strong enough that I'm shaking and I can't breathe or open my eyes. Yet it's wearing off enough to let the shoulder pain spike through like a sword.

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Wednesday, 9 November 2011

It's been a shit day and I feel like crap.

I got no sleep - bloody cherries were a waste of time - the neck pressure's been awful and the pain is back.

I don't know if it's a relapse. I spent hours this morning trying to find a position with the sling that would ease the neck pressure. I finally settled on the least-bad one and fastened myself into it.

An hour later I undid it, to make some lunch, and the pressure went down. But in less than an hour I was feeling so rough all over, but mostly my back, that I had to lie down for the rest of the afternoon. I felt absolutely exhausted and couldn't keep my eyes open - a sign of bad neck pressure. I got up, but an hour later everything was flaring, including the shoulder pain that's been down for days.

So now I'm back in bed. My arm is in extreme traction because it's the only thing that will reduce the pressure, but it's making my shoulder much worse. And I feel so shit mentally.

I'm scared of everything going back the way it was. My head's been full of thoughts of getting my life back, all the things I'll do. I haven't been able to stop thinking about all the things I'm going to do, all the stuff I'll start up again, all the new things I'll take up.

And now I just feel it slipping away. This is why I always try to avoid getting my hopes up. It hurts too much, and I don't think I can stand to watch it all slip away again.

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Tuesday, 8 November 2011

My friend pointed out something interesting just now. I was saying how great it is that the sling is helping, but I really hope it doesn't all just relapse.

She said yes, but even if it does, the fact that something mechanical has had such an impact suggests that there is a physical problem that can be fixed mechanically. If it does relapse, they need to start doing x-rays, MRIs and ultrasounds in order to find out what's constricting the blood, and then do something to release it.

Of course, that goes against the theory of the pain being a manifestation of emotional trauma (as per that book). If that's the case, any intervention still won't prevent a relapse, because the mind finds ways to restrict bloodflow in order to create the physical pain it needs in order to express the emotional pain. So I'd go through the intervention for nothing.

All of which means that if it does relapse, I'm still facing a conflict; I'd have to start the emotional work, whilst pushing for all the tears and inteventions. Terrific.

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I shall be trying extract of sour-cherry tonight - apparently it's a cure for insomnia. Nothing else I've ever tried has worked, from herbal remedies, to foods, to heavy-duty pharmacologies, but I'll give it a try.

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Very pleased with myself

Big news today - I managed to go into the local town for an hour and a half, and I didn't then have to go and lie down for the rest of the day!

The last time I tried going out, I only made it through 45 minutes, and afterwards I was in agony and confined to bed. Today, I probably could have lasted longer, except the things I bought were very heavy (for me), and I couldn't carry them any more.

The pain did start to flare on the way back to the car, and I did take top up pills a couple of hours after getting back, but all-in-all, it was a roaring success.

It was all using the sling, of course, and the dislocating pain hasn't flared today. I did find, though, that the neck pressure got bad this afternoon with the sling on, so I took it off and was able to sit and move normally. Normally!

I even did some 'arm pedalling' to help free up my shoulder, as well as using my left arm as the primary one while it was not in the sling, for the same reason.

And finally...
I've just made arrangements to visit a friend - the first time I've been able to go to someone else's house in eight months.

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Monday, 7 November 2011

Just walked to pharmacy - my first trip out with the new sling fully operational.

It went well - I was able to walk at a reasonable speed, no pain kick offs and no need for bed when I got back.

I'm feeling good, and increasingly positive. I'm still on a lot of morphine, but I feel like I could work like this, albeit part-time. Getting the morphine down can come later.

I've got to be careful though. I don't want to go back to work then be off sick again because it re-flared. And I don't just want to be back at work, I want my life back, my whole life. So it's going to have to be 'slowly slowly', to make sure it sticks. Build up activity levels, and make sure the pain doesn't re-flare, before I go back. Especially given that this morning was bad - I stayed in bed, on the laptop, using pillows instead of the sling. After a couple of hours I was in bad pain and terrible neck pressure. So it's not straight-forward.

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Saturday, 5 November 2011

Managed to sit up from 10 till 4.30 today - thats nearly a full working day! And before that I went out to the bank.

Sadly, at 4.30, the dislocating pain suddenly became unbearable, and I had to rip the sling off and rush to bed with morphine.

That pain had got bad a couple of hours earlier, but it went down again. I'd also started the day feeling pretty sore. It's a good performance for today though, on top of somehow managing to go to the loo like a normal person this morning, despite heavy-duty morphine lately.

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Friday, 4 November 2011


The book linking chronic pain to childhood trauma also talked a lot about bloodflow.

It said that one of the ways the body manifests the emotional trauma as physical is by reducing blood flow, so you get physical symptoms, like pain or neck pressure.

I'm wondering if:
a) the reason the pain is so different with the sling on and my arm in traction is that bloodflow to the joint is improved? If that's the case - and I suspect it is - then maybe extended use will have the cumulative effect I was thinking about the other day.
b) the reason for all the heat and redness in my arm tonight (and I have seen it before in recent days) is because there's suddenly lots more blood floating around?

This could also be contributing to the reduction in neck pressure - maybe it's not just about the trapped nerves.

It all suggests that continuing to try it is even more important.

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If I say it loud enough and often enough, maybe that'll make it true.

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I wore the sling all afternoon and early evening. I kept getting droopy eyes until I got the positioning right.

The 'dislocated' feeling became too painful around 8 and I went to lie down. I took a couple of top ups at 9.30 because it felt like it was building up.

I notice now though that, although my left hand I'd unnaturally cold - which began with the sling on and has stayed - my upper arm is bright red and very hot to the touch. What's that all about?

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Terrible night of awful pain and no sleep.

I'm scared to sit up today. If I use the sling it might trigger pain like last night, if I don't, it might trigger the neck pressure like yesterday. I might just stay in bed.

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I'm in horrible pain and I can't sleep.

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Thursday, 3 November 2011

The 'dislocated' feeling has become agonising in the past half hour.

I took the sling off to let the chins out - one nip from them would render it useless - then put it back on half hour later. But an hour on I've had to take it off because of the excruciating stabbing pains.

Maybe once it's on, you can't take it off and put it back without lying down???

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Sling questions to consider / now answered

*is it possible that the altered angle of the shoulder joint could interrupt the pain signals sufficient to ease or even stop the pain?

*is there a cumulative effect on the neck pressure - i.e. if I wear it constantly for a period, will things adjust so I can then stop without any recurrence of symptoms?

*is the reduction in pain I've seen so far permanent and cumulative, as per the neck pressure question above?

*having taken the sling off for a while, can you then not wear it again without a rest period (lying down)?

*the eye droopiness and sleepiness I get every day isn't down to the meds, it's the neck pressure - it stops with the sling on. So if the eyes start drooping, don't go to bed, adjust for neck pressure.

*whatever nerve it is that gets trapped at some point links to the trigeminal nerve (causing the screwdriver)

*abducting the arm somehow links down to nerves in my right thigh and my left hand

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Sling part 3

Interesting day, though unexpected.

I got up feeling fairly OK, after quite a difficult night. I'd had to take top up pills in the early hours, because the pain was keeping me awake. They worked though, and I got a few good hours, then woke up with minimal pain or neck pressure.

Because of that, I didn't bother putting the new sling on, or even using cushions to support my arm: it didn't seem necessary. After a couple of hours, though, I was having real trouble keeping my eyes open and I'd been fighting off screwdriver-in-the-eye for over an hour. It wasn't exactly the same as usual, but it was bad.

I ended up having to go back to bed, but the usual arm traction didn't help, and it took a long time to find a comfortable position. Then I fell asleep for a couple of hours. When I woke up, I once again didn't feel the sling was necessary, but I'd learnt my lesson, and put it on.

It was much harder this time to get the traction right - I suspect because I had left it too long before - but finally I did and over the course of the afternoon, the screwdriver has eased. As usual in the sling, my arm feels like it's partially pulled out of it's socket, but that's bearable. I find that the numbness in my right thigh is also a lot worse in the sling, and I've also been getting new numbness in my hand today. Both of these are acceptable trade-offs for the positives I'm seeing.

The last couple of days do raise a couple of questions, which I'll be addressing over the next few days:
*is it possible that the altered angle of the shoulder joint could interrupt the pain signals sufficient to ease or even stop the pain?
*is there a cumulative effect on the neck pressure - i.e. if I wear it constantly for a period, will things adjust so I can then stop without any recurrence of symptoms?
*is the reduction in pain I've seen so far permanent and cumulative, as per the neck pressure question above?

It also answers some:
*the eye droopiness and sleepiness I get every day isn't down to the meds, it's the neck pressure - it stops with the sling on.
*whatever nerve it is that gets trapped at some point links to the trigeminal nerve (causing the screwdriver)
*abducting the arm somehow links down to nerves in my right thigh and my left hand

All of this might raise the possibility of getting back to work. I know it's a long shot, but maybe. I can pray.

I feel that to maximise my chances, I should wear this new sling all the time. But I feel bad about that, guilty. I feel like it's overkill and people will view it as me going for ever-more visible and outrageous aids in order to garner sympathy.

It's stupid to feel that way when I'm home alone, and if it helps, surely that's all that matters. But I can't help feeling, for example, that the doctor will disapprove, like he did with the stick. Then again, he hasn't found anything to help, so who else can I rely on?

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Wednesday, 2 November 2011

Sling part 2

The abduction sling arrives yesterday. Initially it was a massive disappointment; int turned out to be extremely complicated to put together, a problem exacerbated by the fact that the shoulder strap is not as pictured.

There's Velcro everywhere; this makes it infinitely adjustable, which is obviously a very good thing, but it does make working with it a nightmare, because bits are constantly sticking to each other and are then hard to get off.

I spent ages trying to work out how to fit the sling, but I just couldn't. The company's website helpfully just said to fit it as per the picture (difficult, when it's not the same as the picture!). I rang them to request instructions, and was told 'it's too complicated to write instructions for'!

I was gutted. I'd spent a lot of money on this thing, and all the faffing had triggered bad neck pressure when I had been feeling OK before. I had to give up and go to bed with my arm under extreme traction.

Later, when the neck pressure had eased a bit, I tried again. I did finally manage to get the waist strap working; I wore the sling all afternoon and evening and it really helped. It did exactly what I wanted it to - it put my arm in traction much better than the cushions ever have, and it allowed me to sit up for hours longer than normal. It also changed the shoulder pain, making it more bearable. My back and neck also improved.

The ditzy receptionist at the manufacturers had promised someone would call me back yesterday morning - no-one ever did, but I was woken by the phone first thing this morning.

The woman on the other end was extremely helpful and went to great lengths to try and sort the sling out got me. Obviously it was difficult that we couldn't see what each other was doing (she was working through it as we spoke), and it was difficult and painful for me, doing it all one-handed.

In the end, it seemed that the shoulder strap simply wouldn't fit me, but impressively she immediately offered me a 50% refund, since I could only partially use the sling.

I was very happy with that, but when I tried using the sling for a quick trip to Tesco, I began questioning my decision. It was clear the shoulder strap is necessary - the damned thing kept shifting downwards, and didn't provide as much support as it did when I was sitting down.

After a couple of hours' rest and ruminating, a solution suddenly occured to me, and this time I managed to get the shoulder strap fitted. I don't know if I've done it 'right', but it works, and the whole contraption is much more stable.

Again, the neck pressure and pain have all been better, and I've managed to sit up for hours, so all in all I'm pretty pleased.

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