Sunday, 30 October 2011

Abduction sling

It suddenly occured to me this afternoon that the last time I was looking at slings online, I saw one with a pad under it that pushes your arm outwards.

At the time I scrolled on by, as it was of no use whatsoever, but now that's exactly what I'm having to do all the time with cushions and pillows.

Cue another marathon internet session; I discovered that it's called an 'abduction sling', which doesn't mean someone's trying to make off with my shoulder - though trust me, they're welcome to it! - but that it puts the shoulder into a 'neutral' position, necessary after surgery or dislocation.

Most also push your arm out to the side, which is no good for me, but I did find a few that were suitable.

They're not cheap, but it'll mean I can get up and move about without losing the correct arm position, as I do at the moment. I also won't have to keep leaning or stretching out for my pillows.

It'll be much better for doctor or psych appointments - at the moment I have to use the ordinary sling and suffer through the poor arm positioning. If I can get to visit anyone, it'll save lugging several cushions with me, and if I could get into town or anything, it would make walking easier. It'll make chin playtime less painful and I think it'll even be better for driving (though it won't be done up).

So, potentially well worth the £70!

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I feel like shit today.

I did get some sleep, though very broken, but I woke up with the neck pressure still awful.

Then I watched a TV programme about a lame horse. There was nothing the vet could do and the owner decided it wasn't fair to make him suffer a life in pain, so she had him put down. And all I could think was 'why won't someone do that for me?'.

If it's not OK to make a horse suffer, why is it OK to force me to suffer? Am I so much less important than a horse, that society is happy to just leave me to a life in agony? How can that possibly be right? Moral? Civilised?

I want to die, there's nothing anyone can do to help me, so why won't they just let me? Why?

I decided to try and sublimate my pain with food. I ordered two delicious pizzas (buy one get one free). But I could only manage two slices. I wish I could lace it with arsenic.

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Saturday, 29 October 2011

Throw up

The neck pressure is appallingly bad today. Terrible nausea hits the minute I get out of position.

Usually it takes time to build up: I feel the pressure, the headache grows and I gradually start to feel sick - all in all, a good 15 minutes. Today, as soon as I stand up, sit in a chair or put too many pillows on, my head feels ready to explode and I'm about to throw up.

It's never been this bad before. I've been taking 30mg morphine every four hours and still it's the most volatile episode I've had. And on top of that, the shoulder pain is ever-present and regularly spikes enough to take my breath away.

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Friday, 28 October 2011

I'm just glad today is over. I've been dreading it for weeks, and now it's over. Thank god.

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Rehab guy

As horrid as the rehab testing was, the guy who did it was very nice.

He was very considerate and respectful. I knew I in theory had the choice to decline any test, but I wasn't really sure they meant it. He was constantly saying I could stop whenever I wanted to though, and if there was anything I didn't feel able to do, I only had to say.

He seemed to listen carefully to everything I said, and he picked up on when I was trying to keep going but really didn't feel I could - he'd ask several times if I was sure I wanted to go on. Of course I didn't really *want* to do any of it, but I knew if I didn't cooperate, they'd just say they didn't have enough information to approve my claim. So I had to do as much as I reasonably could, whilst trying to avoid making things worse (which if course it did anyway, as I always knew it would).

Given that I was having to lie in bed with a strange man beside me though, he made me feel as secure as was possible in that situation. And of course there was the female chaperone he brought with him, but she was in the next room. I had feared that might happen, and was worried about it - anything can happen with someone in the next room, let's face it, it's happened to me before, repeatedly - but I actually felt OK about it.

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Finally, some relief.

I've taken 130mg of morphine since midday, but this is the first time the pain's actually gone down. And it took 40mg all at once to do it.

I wish I'd known - I took 35 at lunchtime, then another 15 two hours later when it had very limited effect. But still that didn't do the job. Now, at last, it has.

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I was right, but that doesn't make me feel any less shit.

Yesterday's low-pain was an anomaly, and I'm now back in agony. I'd managed to see it as anomalous all the way through till this morning. When I woke up still in virtually no pain, I really did start to think (hope) maybe something had changed.

It was still bad timing, with the assessment today, but I started thinking 'never mind, if it's stopped, I can go back to work, the insurance won't matter'. I started thinking of all the things I could go back to doing.

Then the assessment started and the pain began to build. It got so bad they actually had to stop before the end because I couldn't do any more. And I've spent the rest of the day in agony, feeling even more shit than usual.

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Thursday, 27 October 2011

I'm annoyed that my shoulder chose now to do the once-in-a-blue-moon OK day.

Normally, I'd just try to enjoy it, knowing it won't last, but with the rehab testing tomorrow, I'm just worried that they'll get an unrepresentative, disproportionately positive impression of the situation.

Then they'll refuse my claim and I'll be back to the usual mind-numbing pain.

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Wednesday, 26 October 2011

Last night was even worse than the night before; I got no sleep at all. It was the pain keeping me awake this time - I didn't take as much morphine, to not have to cope with the panic attacks, but that meant the pain was awful.

I was due to talk to Personnel first thing this morning. At 4am I wrote her an email saying I needed to cancel, because I was expecting to be asleep at that time, since these nights usually result in me dropping off around 5am till 10 (as on the night before last). But then I decided not to send it, because I wasn't convinced I'd even manage to fall asleep then. And I was right - I never did drop off.

It went OK, though it was quite upsetting talking about the doc saying he still thinks I'll get better, because I simply can't see how. She wanted reassurance that I still have the desire to get back to work, so at least the getting upset served a useful purpose.

The rest of the day has been a lot of pain but less neck pressure, which is good. I managed to get round to the pharmacy to collect the rest of my prescription, which I'd hoped to do yesterday but couldn't.

It was touch and go today - the pain was very bad and I struggled with every element of the task - walking, driving, standing. But I did it.

The pain has got a lot worse this evening and now I'm just desperately hoping I can get some sleep tonight. But I'm not holding my breath.

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Tuesday, 25 October 2011


I've taken 80mg of morphine in the past 6 hours - that's what it's required to get the pain under control, and even then it's just bearable, not gone. Unfortunately, though, it's causing really bad panic attacks.

I'm stuck in a catch-22: less morphine and I won't be able to sleep for the pain, but enough morphine to ease the pain and I can't sleep for the panic attacks. Terrific.

2am. And the pain-killing effect is wearing off faster than the panic attacks. So I get to be in pain and terrified, all at the same time. Christ, how much fucking worse can this get?

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Monday, 24 October 2011

Complex Needs

So, that appointment with the Complex Needs service.

I didn't want to be there, and I went in with a very negative attitude. I've never spoken to a male therapist, and I had no desire to start, but even as I was talking to him, I was telling myself that he couldn't help me if I wasn't up-front with him.

He was very ggod at asking searching questions, and he immediately homed in on my feelings about the many relationships that I feel have been damaged, as a result of the pain, over this last year.

It was a very traumatic appointment, with a lot of hysterical crying. But even as soon as I left, it started to help.

It made me look at my social interactions through a new lens, and as a result, allowed me to understand what's been going on, how I've been feeling, and why.

I realised how angry and jealous and resentful I feel at my friends for having the life I want, the freedom to do things, the sense of a future. And I realised how passive-aggressive I've been towards them as a result (and how like my Other Sister that has made me!).

I realised that being forced to 'receive guests' from my bed makes me feel incredibly unsafe and vulnerable to attack, even with close friends who I know without doubt would never hurt me. And I realised that my fear of being abandoned has become so great that I've been pushing people to do just that, either to get it out of the way, or to prove myself right.

I also now feel so unequal in these relationships that I'm subconsciously certain people will eventually walk away, and I expect, or even push it to happen. And there's the fact that I used to be an equal player in these friendships; I brought as much to them as anyone else - past experienced, current life events, support, need etc. Now my life is so empty, I have nothing to offer.

All of this has caused me to increasingly isolate myself, driving people away and making little effort to contact them, all because it's too hard. Each interaction raises all these issues, makes me feel like crap and makes me even less likely to get in touch in future, through fear of feeling that bad again.

Since the appointment I've been doing a lot of work on each of these issues. I've been trying to come up with techniques to address each of them, and I've been quite successful. There's plenty more to be done, but it's a good start.

It's just a shame that shrink told me there's nothing they can do to help me. They believe that 'reciprocity is the key to healing', and so ONLY offer group therapy. I don't feel able to do that - I can't even cope with friends talking about their lives - and he said until fixing these relationships is my top priority, group work won't help me. I pointed out that my priority is just getting through the pain each day.

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Pain is now so bad, I can't put my arm in traction, which means agonising shoulder pain plus raging neck pressure causing blinding headache. I want to die.

7.40 I've just crunched up 2 slow release pills, having already taken 2 half an hour ago. I couldn't take slow release ones because I'll run out - I got the doc to give me a post-dated prescription for the Oxynorm, but that means I absolutely can't get any more till 7th Nov. Which means that what I've got HAS to last till then. But I had to take extra because I'm in agony. So to conserve the Oxynorm, I decided to take the extra Oxycontin, but I had to crunch it up to make it immediately absorbable. Let's hope there's no backfire (though accidental OD wouldn't be unwelcome).

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I've had my arm under traction all day, as every day for the past week. It's the only thing that will ease the neck pressure at the moment, though even then it's really hard to find the right position to lie in.

But the pain started to kick off an hour ago (around 3pm) and it's been getting progressively worse. I took 3 top up pills at 3.30, but it's still getting worse and I now can't breathe. I feel stoned but in agony; all the morphine is doing is making me feel out of it, it's not touching the pain. I

s this because of too much traction or because I did the washing up? I don't know. I was going to go and collect my prescription, but I felt the rising pain wasn't going to stop - and I was right. Thank god - I could easily have got halfway there and been stranded alone at the side of the road.

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Sunday, 23 October 2011

Every now and again I suddenly remember the rehab testing next week, and I panic. I panic that they'll get it wrong, and say I can do stuff I know I can't. It terrifies me. Having someone judge you like that, it's horrible.

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Saturday, 22 October 2011

Really really bad neck pressure day. Was doing ok mentally, but this is grinding me down and I don't know how much more i'm willing to take.

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Friday, 21 October 2011

The pain's been very bad all day, as a result of driving to the doctor's. Despite it being such a bad day, I can still feel proud of managing to get up and ready and then driving all the way there and back. Apart from the pain flare-up, it all went very well -it was actually quite a nice driven because there was virtually nothing on the road.

It's just that I've spent the rest of the day stuck in bed, out of my face on morphine.

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Clever idea

Over the past few weeks, I've missed an awful lot of Lofepramine, because I was in too much pain to be able to get to the kitchen to take it.

The stuff is so gluggy and sticky, it has to be poured over the sink, and the spoon washed immediately, all of which means I've never been able to take it in bed.

It ocurred to me the other day though, that I could use one of the little travel bottles I take it in when I'm going to be out. I just swallow a mouthful - it's not exact, but it's better than nothing.

I've just used it for the first time, and it's proved an excellent idea. The pain's very bad today after driving to the doctor's (it kicked off after 25 mins driving, each way, which means my 'driving range' has reduced again - it was 40 mins). I've popped loads of pills, but still didn't feel able to get up to take my Lofepramine (mostly because I've found a comfy position, and don't want to lose it), so without my little bedside-bottle, I'd've had to miss yet another dose; this way, I didn't.

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Thursday, 20 October 2011

Big improvement

I just had a friend round, and it was the best social encounter I've had in months.

Following everything the guy at Complex Needs gave me to think about on Tuesday (which I haven't yet managed to bring myself put up here), it was the first visit in months that's really felt comfortable and guilt-free.

For once, the encounter wasn't tinged with anger or resentment. I didn't feel jealous of my friend's life, or annoyed that she was complaining when she had no reason to (and believe me, she has plenty of reason to complain).

I was able to sit and listen to her talking about her problems, to sympathise and offer suggestions. I felt engaged and included, instead of all the other times when I've felt separate and excluded by virtue of my pain-induced isolation.

I wasn't thinking about the pain, or how crap my life is. Even when I was talking about my recent troubles (the Complex Needs visit and the DLA), I felt relaxed and safe. I didn't need to take my fear or anger out on my friend. I felt like we were equals again.

We talked about the kinds of things I used to talk to friends about, like funny past experiences - the strange characters at my old Writers' Circle, the wierdo sci-fi creep with the wardrobe full of identical shirts and slacks, etc - and our favourite trashy TV - Strictly, obviously.

I didn't feel the need to apologise the whole time, because I know I didn't do anything wrong. Tuesday's appointment was a nightmare, but it was worth it.

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Wednesday, 19 October 2011

My landlord came round this evening to fix a tap. Unfortunately, I was feeling so shit and in so much pain that I couldn't get up. I had to lie down and shout through to him in the kitchen the whole time.

Do you know how humiliating it is, to have to lie there like that? And how vulnerable it makes you feel, even when the male visitor is a good friend that you completely trust, and with whom you know you're completely safe? It's fucking horrible.

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Tuesday, 18 October 2011

I want to go to sleep.

I have to get up and go to the poxy Complex Needs place, and all I want is to go to sleep, but I can't. One minute there's the pain, then the neck pressure, then the pain again.

I want to stop popping pills and go to sleep.

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Monday, 17 October 2011

God I feel completely stoned and I don't know why - haven't taken anything extra, so shouldn't feel this bad!

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My friends' visit has completely wiped me out. I'm utterly shattered, can't keep my eyes open, it's horrible.

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The insurance people just called to set up the functional rehab testing - at home!

Yes, it seems someone finally listened, and they decided not to make things tens times worse just for their own entertainment!

The conversation didn't start well when she asked why I hadn't got the doc to write to them about it, and denied having got my message about the missing request for an update from the doc. When she said she had a date for me, I thought she was about to try and force me into another trip to London, but no. She said it would be at home.

I'm still dreading it because it's 3.5 hours and I can't sit up that long, but at least it's not involving travel. Thank god.

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Just had some friends round who I haven't seen for ages.

It was really nice, though I did get upset early on. My friend J was concerned about me living off cereal and bagels; she was trying to come up with alternatives, but I just felt got at and that I was being told off for not eating properly.

I know she meant it with love, but it was too much for me and I started crying. Luckily she took the hint and changed the subject. The rest of the visit was lovely, including the very simple but tasty chicken sandwiches.

Interestingly, though, the chins turned their noses up at snacks from B. Maybe it was because they've not met her before, or maybe they didn't like her perfume. Anyway, they were quite happy having snacks from me or from J.

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Sunday, 16 October 2011

I did manage only one double dose of slow release morphine today, but the actual total consumption was the same, because yesterday I missed the 6am slow release pills and so the later double doses cancelled that out.

Both days I've taken 30-35mg of quick release on top; it would be better to take more SR and less QR, just to control the peaks and troughs and enable me to stay awake more.

So the aim for the next few days will be to keep it to doubles with no QR on top. Then it'll be down to singles in a few days. I hope.

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I never should have given up my Phd. If I'd carried on, I wouldn't even have been in the country when the accident happened.

Maybe I'd have had an accident in Ecuador. But there ate no air ambulances there, so maybe I could just have died in the crash. Every day, I wish I had.

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Very low. I miss going to work. Dressing up nice, talking to people, being in meetings.

I want to go back to work. I want to be a person again.

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Friday, 14 October 2011

Got shedloads done today, though had to put my arm into traction (lying down) between each task. Still in traction and no idea how tomorrow will pan out, but pleases with today, especially given that have only taken 30 extra morphine (compared to 70-90 extra last week).

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Thursday, 13 October 2011

Arm traction appears to have worked, fingers crossed - neck pressure eased after found exact right position for arm, legs, head and trunk.

Have just accidentally thrown my morphine away though - numpty!

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Need traction

I've had the TENS machine on my back all day and it was helping, along with being propped up high.

Increasingly, though, the neck pressure was getting worse and I could tell it was coming from my shoulder. I needed traction on my arm - it needs to be pulled slightly out of it's socket, I think because that's what's pressing on the nerve.

Unfortunately there's no-one here to provide the traction but I did find the pressure eased a bit when I got the right position and angle and pulled on it myself.

So I'm now lying on my back with my arm hanging off the bed. This is releasing the nerve, tho the blinding headache and nausea from it - let's face it, it's a migraine - is still bad and the TENS is still going. I can't get up to get my migraine pills, because I'll lose this angle.

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It's already a terrible day. Neck pressure is awful and it's making me feel sick most of the time. Shoulder pain is also really bad and so is my back.

Trying to get the morphine back down again, but everything's so awful, how can I?

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So much morphine I can't see straight, yet still in agony.

Help me.

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Wednesday, 12 October 2011

Bad day, though getting the DLA package in the post was fairly joyous. Now though :

shoulder pain - bad
neck pressure - very bad
back - terrible

It took hours to find a position that eases the neck pressure and I look like I'm in spasm because I'm so contorted. But anything else is just awful. If I lie any other way, the neck pressure is terrible; if I sit up, within minutes, the shoulder pain becomes unbearable. But I can only maintain the 'right' position for so long, before my hips start to throb and I have no choice but to move.

There is an OK position lying more propped up (at the moment) but I know that though it's OK at the time, when I get up, I'll have excruciating pain in my lower back and will be unable to stand up straight or walk even to the toilet

Morphine levels are two thirds what they've been the last few days, which is bloody brilliant. Except for the reason it's so low is that it's not helping the neck pressure, so there's no point taking any more. But at least I'm no longer trying to get through the forms and hence having to take extra in the hope it might work. Now, I might just as well put up with it. Especially as I've also had a bad tummy today, as a direct result of all that morphine.

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Tuesday, 11 October 2011

Proud of me

It's taken a helluva lot of morphine, and I'll probably come to regret it tomorrow, but I've got shedloads done today and I'm extremely proud of myself.

Here's what I've achieved:
Balanced my bank statement
Got morphine prescription (vital!)
Posted sick note
Dug out paperwork for DLA
Did a load of filing whilst putting the paperwork away
Put out yesterday's washing
Put more washing on
and, of course, finished the DLA forms!

Half of what I've got done wasn't even planned for today. It just wound up getting done as a means of procrastinating against doing the forms. Or it was a natural progression from doing something else.

Of course I'm in horrible pain and have just had to take yet more morphine, but with all those jobs done, I can now rest and recover and hope the pain finally goes down. I'm looking forward to enjoying a rest without the pressure of looming jobs.

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Done it! The DLA forms are finished, thank god.

I feel like all the revision is over and the exams have finished; like the essays that make up a whole term's work is finally handed in.

I can't believe that I can go to bed tonight and not have to experience the kind of panic and terror I had last night. That I can get up tomorrow and not have to emerse myself in all the worst parts of my life, until it's all so bad that I can't even move.

I could cry with relief. Now all I need is the terrible pain to die down.

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Monday, 10 October 2011

I've treated myself to a couple of presents - i reckon I deserve something to make up for the hideousness of the DLA stuff.

I ordered from Amazon today, so the forms should be done and in the post by the time it arrives. It's a DVD, book and DVD pub quiz - anything to keep me entertained.

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Managed the driving today - to the doc's to pick up a morphine prescription then back to the shrink.

I was pleased afterwards that I'd managed it - it's a big achievement after the past week. Needing to drive meant taking less morphine from the outset, so I was already onto a loser: the pain was bound to be especially bad, and it didn't disappont.

The shoulder pain was bad by the time I got to the doc's, but what I wasn't expecting was how bad the back pain was at that point - bloody agony. The poor seating at the shrink's didn't help.

I've been struggling to catch up with the pain all day. And now on top of all that, I suddenly feel like shit mentally. It's the thought of having to go back to the DLA tomorrow - it terrifies me.

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Sunday, 9 October 2011

Oh god. Terrible neck pressure, coming from my shoulder. The only slight relief is lying on my side but with me face pressed into the mattress (no pillow) allowed, with my arm bent and stretched sideways so my it's half pulled out of it's socket.

On top of all that, the panic attacks are really bad tonight. And they're going to get worse since I've just had to take another three Oxynorm. So on top of this ridiculous twisted position, I have to play Solitaire on my phone because it's the only thing that distracts me enough and that I can reach.

I fucking hate my life.

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Saturday, 8 October 2011

Today was the first day in two weeks that I've been able to sit up in the mother ship to work on the DLA forms.

I needed to do the handwriting bit and I knew that doing it sitting up in bed would destroy my back, so I needed to do it in the chair.

I did 20 minute sessions of writing, stopping to rest for 15 minutes in between. I got two thirds done this morning, then had to stop when the back pain got too bad.

I spent the rest of the day in bed, dosing up on morphine, then managed to do the rest of the writing early this evening.

It was good, because I have to drive to the shrink and the doctor's surgery on Monday, which means I have to take it very easy tomorrow, ie do nothing.

I really wanted to get the handwriting done before the enforced break because it feels more satisfying, and means I only have one day's work to do (ie about an hour) and it can all be done lying down.

The only problem is that I'm now so close to it all being finished that having to stop for two days really wrankles.

I so want to just get the bloody thing out the way. It would take so little time, relatively-speaking, to finish it. But I know how bad things will be trying to drive an hour each way and sit in an unsuitable chair for an hour, if I've done anything other than just lie here tomorrow.

But argh!

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Friday, 7 October 2011

Had a bath today, but it made the pain worse not better.

I'd pushed through again on the forms (I'm nearly there, thank god!) and then decided to try a bath. It was a bad idea - first off it made the shoulder pain worse, then it triggered the eye-wateringly bad back pain.

That was four hours ago, and it's no better.

I need to drive on Monday, so I'm going to have to ve really careful what I do over the weekend. I can't afford to make things any worse, but I also need to get the Oxycontin levels down so I can drive on Monday.

As well as finishing this freakin forms...

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Thursday, 6 October 2011

Having got the laptop into place, and given the fact that my recent flare-up means I know I'll have to stay away from doing the forms for the weekend if I'm to have any hope of driving on Monday, I decided my only option was to take extra morphine and push through and get done what I could today.

I took 3 top-ups mid-morning and they helped, but it was clear I'd have to take a ridiculous amount of them to keep the pain at bay, so I changed onto increased doses of slow release. That was much better, and more 'morphine economical' - ratio of pain killing effect to number of pills taken - though it did mean a triple dose at lunchtime.

Net result - lot done, feel sick and high, god knows what the pain will be like tomorrow.

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Yesterday was a bit better - the pain was manageable if I stayed totally still, but I still couldn't do anything.

When i woke up today it seemed worse again. I'm so worried about how late these DLA forms are that I decided the very first thing to do - before getting breakfast ot anything - would be to move the laptop from the overbed table to the bed. It's a distance of about 15cms and even that triggered terrible pain.

Now it's in place, and I can't do anything. These forms are never getting done, and I'm starting to worry about driving on Monday.

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Wednesday, 5 October 2011

I'm fucking furious that I can't get the chins out yet again. And I'm heartbroken about it too. Chiwi is looking at me like I've stolen her chocolate bar and it breaks my heart.

It's cruel, keeping my pets from me. I love them and I want to spend time with them and I can't. It's not fucking fair.

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Tuesday, 4 October 2011

I really miss playing with the chins. It's about 4 days since I managed it, and even then I had to give up after 10 mins.

I've so had enough of this.

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Unbelievable pain

My only achievement today is not calling an ambulance, and not killing myself.

I suppose I should be proud - given the extraordinary pain levels, it's pretty bloody astonishing that I haven't done one or the other. And there's every possibility I still might.

The morphine limit has gone out the window. I should be upset about that, but the only alternative *would* have been suicide. Even with the hiked-up morphine, it still only meant I could breathe without extra pain; I still couldn't move or sit up or do anything.

And there's no sign of any improvement. I don't know if I can make it through a night of this as well.

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I'm worried I'm going to run out of Oxynorm, so I've just crunched up a 10mg Oxycontin.

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Fucking agony, can't breathe, can't move.

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Please. Make it stop. I can't do this any more.

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Monday, 3 October 2011

Decided not to use the suicide note.

Pain was looking bad this morning, so I went straight for double Oxycontin, and that seems to've been the right thing.

I've managed to get a lot done on the DLA forms. I should feel pleased, and I partly do, but partly I just feel how much more there is to do. My worry now is how bad everything's going to be tomorrow, having probably pushed things way too far today. But I just had to.

I worked out what's been freaking me out so much about them though, and that's good.

It's because getting the DLA award all hinges on me saying the right thing. If I say the wrong thing, I ruin it for myself and get nothing. But I have no way of knowing what's the right thing and what's wrong.

It's just like when I was a child - my whole existence felt incredibly unsafe and like I was living on quicksand - the whole world could drop away at any moment, just because I said the wrong thing.

There'll be no-one to blame but myself if it goes wrong, but I have no way of knowing how to do it right, and the stress of that is killing me.

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Sunday, 2 October 2011

So so much pain today I have just written a suicide note. I don't know if I'll use it, but it says what I want to say

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Hellish day. Pain is appalling. Meds are fucking useless. All I can do is lie here and think about how much it hurts.

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Excruciating agony all night and now today i can't even sit up in bed. And I didn't even do any of the things I was tempted to try yesterday, in case it made things worse. Imagine if I had...

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