Taking the Stairs: September 2011

Friday 30 September 2011

I'm trying really hard not to but I don't know if I cam

I feel too awful to write on here, but the shrink says I should put something up to explain why I can't see, speak or even write to anyone at the moment. So this is it.

Doing the DLA forms has me in pieces - focussing on all the problems, making things worse by doing it and knowing it's pointless because they'll say no. Sorry.

Wednesday 28 September 2011

All Day Suicidal

Tuesday 27 September 2011

Dislocation

I got the table set up, and managed about half an hour of doing the forms. By that time the pain in my back was getting too much, so I had to stop.

Unfortunately, that was probably too much - it had triggered the neck pressure, and I'm now fighting a losing battle with it. There is a 'right' position, but it requires my arm to be stretched forward and out, to the point that it feels semi-dislocated.

I don't think it actually is dislocating, I think it's just muscles being pulled taut, but the problem is that they're not snapping back. So when I do get up, eg to take the Lofepramine, I'm moving around with my arm feeling like it's falling off. It's also extremely painful, even lying still, but that pain is preferrable to the neck pressure, so I have no choice but to put up with it.

Feeling better today. Finally went to sleep, after awful panic attacks, but then did sleep through.

Back feels reasonably OK, shoulder pain is building but currently bearable. At this point, no neck pressure, though we all know that could change in seconds.

I'm going to make the most of this window, by putting into practice a brainwave I had last night (and it drove me crazy not getting straight on with it!).

I'm going to put the over-chair table by the bed, with the laptop ready on it. This will mean I can still use it on days when I can't actually lift it. I'll also put things on it like my reading specs (how old does that make me feel!), the remote controls and my pen - all the things that I usually have to twist to pick up.

It's a great idea, because it'll put everything in easy reach, I put an end to all the times I'm lying there wanting something, but knowing that moving to get it will kick off the pain. And the table has been out of use for a while - I stopped using it because it doesn't fit under the mothership, which meant I always had to move to the sofa to eat, and if I wanted to watch TV while eating, I had to twist.

Once I've done all that, I'll hopefully be able to get on with those bloody forms...

Again, the terror. I can't sleep from it, it makes me nauseous, I'm shaking, I want to cry. My dad is haunting me. I'm so tense, the pain is rising again, despite all the meds. I can't breathe.

God please let me out of my own head.

Monday 26 September 2011

Managed to keep the morphine under my limit today - first time in 5 days. All of the previous days I've kept it to within the emergency limit - ie an extra 20mg on top of the 30mg contingency - but it's still higher than I'd like.

Today, I've managed to use just 25mg of the contingency. Sadly, it's not a sign of a good day - I didn't even try taking more because the nature of the pain, and the way it's responded for the past few days, made me pretty sure it wouldn't do much good.

So I've had no choice but to just lie here in pain. I took a double slow release dose at 7pm, plus three quick release just now at the same time as the usual bedtime double dose. I'm hoping this will at least allow me to get some sleep.

I did manage to get the chins out, but it made the back pain a lot worse. That was what I was afraid of, but I needed the cuddles, so I tried it anyway. And then wound up back in bed, where I've been for most of the day.

Just about managing to sit up (for the first time today) but neck pressure, shoulder and back pain so volatile it's all very tentative.

I can't lift the laptop, so I still can't get anything done, but the sitting up is a victory, so I suppose I have to be happy with that.

Thank god the postman brought my CD from Amazon, so I at least have something exciting to occupy me.

The bloody forms are still niggling at me though...

I fucking hate my life.

Still in pain. Shoulder is bad, neck pressure is bad. Still having panics. Feeling sick from pain and pills. No sleep. Feel like fucking shit, want to go home.

Terrific. Now, on top of everything else today, I get overwhelmed by panic attacks.

I'm lying here terrified that my dad is going to come through the door at any second. I'm so scared, I feel physically sick. Every time I close my eyes, I can see his face. It looms out of the darkness at me. His hair is so perfect and coifed, with that damn widow's peak.

I can feel his presence. I can sense him siddling up to me, see his eyes, the way he'd stare at me, his piercing gaze slicing through me, like some kind of accusation.

My throat closes up and I'm scared I'll choke on my own vomit, just at the thought of seeing him.

Sunday 25 September 2011

Shit day

It's been a truly fucking hideous day.

Pain levels have been extremely high, and morphine has been virtually useless.

I've been stuck in bed all day, unable to get anything done, feeling too miserable to see anyone.

I still feel like shit and there's no indication of any likely improvement overnight.

And then I get to do the whole fucking thing again tomorrow.

I like to get things done; it stresses me out when things are hanging around half finished.

So it's torture to me, to be in this situation where there's something that needs doing - the DLA forms -, I'm ready to do it and am stressed because it's not finished, but I physically can't do it because of the pain.

It's like grinding my nose in the fact that it's not done. And of course the stress I feel at it not being done causes the pain to get even worse. I hate it, I fucking hate it.

At 5pm I was finally able to sit up. After all day I bed, followed by a hot bath.

I'm still sitting; that's OK, but standing or walking is excruciating. I don't know why, but i've got hideous back pain, especially down the right side. I need the sling to manage the shoulder pain and neck pressure and I've just take two top-ups.

I'm pretty sure I'll be back in bed within the hour.

Facial swelling

OK, interesting discovery: the swelling in my face, which I always thought was some kind of food allergy, is entirely muscular. It's holding the plate/bowl that does it.

I've just eaten exactly the same cereal as this morning, and which always makes the left-hand side of my face swell up. But this time I ate it off the table - no swelling!

I guess the only reason this doesn't happen every meal is that for lunch - toast or bagel - I put the plate on the arm of the chair, and for tea, I have it either on a cushion (if I'm in my armchair) or on a legged-tray if I'm in bed. So there's no weight in my left arm.

The swelling ranges from uncomfortable (most days) to very painful (today). It can last anything from five minutes to several days.

I need to prevent it, because it's obviously not good for me, so, since I don't have a dining table, I'm going to have to use the tray every time I have cereal. To avoid having to hoik my existing one from room to room, I'll need to buy a second one to keep in the lounge.

Feel like death. Pain so bad it's making me sick

Overdid it yesterday, even tho was mostly in bed. Kept getting up and having frenzy of activity. Paying for it today - in agony.

I knew things were bad when I woke up and my arm felt like it was hanging out of my shoulder. It took me ages to even move. It's still killing me, and my back's really bad too.

I've just taken a double dose of Oxycontin, because there's no way the equivalent dose of Oxynorm would come anywhere near it.

12.30. The Oxycontin has done very little - still in pain and nothing I can do. I've also got bad neck pressure going on, SINCE the pills. Which means they're fucking useless.

To cap it all, the left side of my face is badly swollen. I can't close my mouth properly and I can't chew. The swelling happens every time I eat cereal. I don't know if it's an allergy, if it's to do with the way I hold the bowl in my left hand or what. Normally, it goes down within minutes, but today it's just stayed like it.

It's happened before, but I've never managed to get to the doctor in time for him to see it. There's no way I'll even try driving there tomorrow either, so I'm just stuck. Again.

12.48. Heaven. I found a position that eases everything. The neck pressure's gone down, the back pain's eases, the shoulder pain is down and I can close my mouth. It's the most uncomfortable-looking position - on my side, legs propped up sideways, pillows everywhere - but it's working. It's working!

1.40. Shame it didn't last. As soon as I moved, it all started again.

Saturday 24 September 2011

Chins are starving but I can't get up. Part of the reason is I managed to clean them out earlier. So, they smell and look nice, but have no food. I'm also desperate for a cuddle with them - they're so cute and friendly - but here I am, stuck in bed, in pain, pills not working.

FUCK

I desperately want to die. I just want it to stop.

I'm thinking seriously about taking a handful of 20mg pills. Three or four wouldn't kill me, but it would make it all go away for a while. That's why I'm writing this, in hopes that it'll get it out of my system.

My mum emailed me the other day and she was talking about having to rethink her retirement because my dad's home all the time now. He's off sick with neuralgia.

That's basically the same as what I've got. She was going on about how maybe they'd find a cure and then she wouldn't have to be home with him. Not that it would put an end to my pain. Once again, it was all about her, never about me. It's never about me. I keep thinking it would be nice to be back in touch with her, let her visit me. Then she does something like this, and I remember why I had to cut her off in the first place.

The only reason I don't take the handful of pills, is the shame I'd feel in the morning, at giving up. Being weak. But I can't be strong for this any more. There's just no end to this.

I'm never getting back to work. My life is over. It's been over since the minute that little blue car fishtailed in front and then spun towards me. I should never have woken up afterwards. They should have been cutting a body out my car. It should have been a DOA ambulance trip, not a rescue chopper ride.

I wish more than anything else that I'd died in that car. That I'd never had to know that pain like this could exist. I've done nothing in the succeeding four years to make survival worthwhile. And there's nothing left to survive for. If I'd died that day, I'd have achieved no less than if I die tonight. These past four years have added nothing to my life. Nothing but pain and misery.

Maybe two Oxycodone and two Temazapam.

Friday 23 September 2011

I'm so pissed off of this constant pain. I'm sick of the sight of this fucking bedroom. I've had enough of this whole pissing existence. It's not bloody worth it. None of it.

So lonely. So empty. So utterly, gut-wrenchingly hopeless.

I just want to go home.

So much pain. The meds wore off after less than two hours, which leaves me fucked. I can't do this any more. It hurts too much. I want it to stop.

Made it to pharmacy to get the rest of my prescription then to Tesco to pick up a few things.

I'm finding at the moment that the only things I can bring myself to eat are cereal and bagels. The only reason I'm not losing loads of weight is I'm snacking on sweets and crisps (though I do think I'm losing some).

I've ordered a bagel slicer, because I do struggle to cut them with a knife. It seemed daft for that to be delivered when there were no bagels in the house, so I had to get some.

So, I'm stocked up, but the trip has really kicked off the pain again. It felt bad even as I was setting off, and I was scared to go in case I had another major flare-up requiring first aiders and wheelchairs, but I decided to go anyway.

The only problem now is I was planning to work on the DLA forms today - I've even charged the laptop and got everything out ready - and now it doesn't look like I'm going to be able to. Sigh.

Thursday 22 September 2011

I'd been doing ok today, mentally, up until the last half hour. Then my mood suddenly plummeted, and now I feel like shit.

The pain's been bad ever since doing the DLA stuff, but the top-ups worked ok. They made me very dopey, but it wasn't entirely unpleasant. The SEs from the last dose have been a lot worse though, making me feel quite spacey and unstable.

And then I just started to feel lower and lower and now I feel really tearful and hopeless. I feel so miserable and empty and lonely. Everything feels hopeless, and I feel really angry too. It's all just piling on top of me suddenly.

Misc

Had a reply today to my letter of complaint about the changes to the running of the Pain Clinic.

I haven't dared read it yet, not that it matters. The NHS doesn't give a shit what unimportant people like patients think, so it'll just be full of platitudes and bullshit. I can't be arsed with it.

In other news...
Called the insurance people yesterday to point out that the report they're expecting from the doc will be a long time coming since he never received the request. Given that this is the second missing letter in as many weeks (the alleged one to me about rehab never showed up) I personally question whether they're actually being sent.

Bad news for me is it'll slow down my claim (even more...).

30 minutes working on the DLA forms and I'm now in agony. I was feeling pretty OK before I started.

At this rate it's going to take me months to finish these bloody forms.

Wednesday 21 September 2011

Panic - again

What is it about Tuesday nights?

This time last week, I was having hysterical panic attacks about the rehab testing. Tonight I'm fighting descent into the same state over how much I've upset my best friend.

Nothing's changed - I emailed and texted her on Sunday, explaining and apologising. I haven't heard back from her yet, and I was fine about that until about 20 minutes ago, when I suddenly started worrying. And now I'm desperately trying not to go into a full-on panic that she'll never talk to me again.

It's ridiculous, there's no reason to suddenly start freaking out, yet here I am, feeling tearful and shakey and terrified.

I'm such a fucking headcase and it's my headcase-ness that led to me upsetting her in the first place. I fucking hate being like this. I know it's probably the pills, but I fucking hate it.

It's just another way that the pain has destroyed my life - I never used to be like this. I don't want to spend another night crying and shaking and feeling like the workd's coming to an end. It's even worse when there's a logical part of your brain still functioning, that's pointing out to you how ridiculous it all is.

Even as I was writing the hysterical emails to Personnel last week, I knew I was panicking and being stupid. Bit I was just so scared, I couldn't stop myself.

The shrink gave me a handout about managing panic - maybe that'll help.

1.30. Half an hour of doing crosswords to distract myself, and I feel no better. I'm OK while I'm doing them, then the panic returns as soon as I stop. And sitting up to do them is making my shoulder hurt.

I don't know why I keep going to be honest. I want to stop

Tuesday 20 September 2011

Doctor

So, the doctor's appointment.

I told him what a horrible time I've been having lately: the episode in Tesco, yesterday's neck pressure, the upset over the rehab testing.

I also told him about the new morphine regime: I now take 70mg as the standard dose with a top-up contingency of 30mg and a further 20mg on a particularly bad day *but only if the original top-ups have worked*.

He was very pleased with this, which is good, because I need to keep him on-side so he'll keep prescribing such strong meds.

He was also happy to write to the insurance company about the rehab testing. He hoped that would be enough to get them to drop the whole idea, but I said I doubted that.

I asked for a new sick note and he signed me off till the end of year. It didn't take me by surprise this time, but still I couldn't help crying. He said that he's optimistic that I will eventually get better, because I want to - there are lots of people in my position, he said, who don't. I asked if he realistically thought I could get back to work some day and he said he really did. I don't see how - and he had no suggestion - but I just have to hope he's right.

The doc told me he still hasn't had a reply from the Pain Clinic regarding my questions about swapping over to Tapentadol, and top-ups whilst on it. I said it was moot now anyway: if there are no top-ups allowed - as the consultant originally told me - then it's no good at all. And anyway, I need to be able to take pain relief gradually throughout the day: a slow release pill every 4-6 hours. The Tapentadol is one pill twice a day, and I know that just means the effect will wear off, leaving me in agony.

We also talked about the problems I'm having completing the DLA forms myself, how hard it is to motivate myself to eat, the impact of all the problems on my relationships and how isolated I now am.

I felt so low after all this, I just sat there and cried. He was very sweet and he gave me a big hug at the end; I really needed it.

Went to the doctor's this morning (of which more later). Pain was OK before I left - hence going - but it flared while I was there, and in agony ever since. Had to take top-up pills when I got back, which worked fine, but knocked me out. They're now wearing off, so the pain is worse, but on top of that my mood has plummeted. I feel shit and miserable and very very lonely.

5pm. I feel so lonely because the doc signed me off till the end of the year. And that means at least another three months of the hell I'm living in.

I cried when he gave me the sick note and he asked if I could really see myself able to go back to work before then. I said no, I really really want to, but I don't see how it can be possible.

I know he's right, and I know that even my work-in-bed plan has been proved impossible by the problems I'm having just doing the DLA forms, but even so. I want to work, I want to do more than lie in bed all day long, I want to have a life.

8pm. Pain getting worse as the evening goes on. Managed to sit up for two hours, and even managed a bit in with the chins, but only a few minutes. Also had to faff about wrapping a parcel, and that's probably why things are going downhill. The two top-ups at 7pm have done nothing, whereas the earlier ones helped. Will have to decide if it's worth breaking my limit later on. Those two have left me feeling very stoned, though not pleasantly so. I feel pissed and out of it and quite freaked - it's not nice.

Monday 19 September 2011

Feel like shit this evening, because the neck pressure has been getting worse and worse all day. It's particularly worse since an hour stuck on the loo with a bad stomach; that sitting up position made it worse because I really needed to be lying down, as I have the rest of the day. It hasn't taken the neck pressure away, but it's been the best I could manage. I also haven't taken any extra pills because it's always hit and miss whether it will help with this, but I'm going to have to now.

9pm. The only position that eases it is so ridiculously uncomfortable, I wind up with numb legs and arms and the feeling that ny hips are dislocating. And I look like I've been dropped from a great height and landed in a heap.

9.30. Neck pressure still very bad, pills have done absolutely nothing and now the shoulder pain is rising and rising. I have no idea how I'm going to sleep tonight.

Oh, and the chins need feeding and once again I don't get to play with them. I'm fed up of it.

And still there's the DLA forms I haven't been able to touch today because of the neck pressure and the need to stay absolutely still, and the doctor's visit I need to make ASAP about the rehab testing.

11pm. Last-ditch attempt to get some relief - took four top-ups at the same time as the evening slow release pill and it seems to have started working straight away. Thank god!

And the chins are now fed and watered, though sulking that they didn't get to come out and they only had a short bathtime!

Midnight. Shame the pills only lasted an hour...

2am. Can't sleep. I'm hot and sweaty, I itch all over and I can't sleep. The pain is breaking through all over the place. I'm tired and I want to sleep but I can't. I keep getting tangled in the bedsheets. I can't lie on my bad arm, but my right hip keeps going numb by me lying on it. Oh, I just want to go to sleep.

Neck pressure is very bad today. I can't find a position that works - ether it's giving me a headache, or making my eyes so heavy they won't stay open, or my back hurts or my shoulder.

I've got things I need to do, but I can't because of this.

Weird night of strange dreams that have left me feeling very unsettled and creeped out, even though they weren't actually scary.

Back pain is extreme this morning; haven't tried moving enough yet to know what the shoulder pain is like, but woke up with bad neck pressure headache at 6.30.

Sunday 18 September 2011

Feel like shit.

The pain is really bad and for the third day running I can't get the chins out for playtime. I'm worried about the situation with my friend. I had a pretty unsatisfying call with my sister, partly because of my mood and partly because of crappy technology going wrong all the time. I have to go see the doc about writing to the insurance people about the rehab testing but I'm scared to try driving that far and anyway I don't want to talk about it.

Everything's shit and I'm scared of tonight - the dark, the pain, the endlessness.

I made it to Tesco to finish the shopping from the abortive trip the other day. It went OK, but then I stupidly forgot to take my afternoon morphine. As a consequence, I'm now in a lot of pain.

I also tried to change the privileges on the blog, because I've discovered it's really hurting my best friend. I thought if it wasn't accessible, maybe she would feel better. Unfortunately, that meant I couldn't post to it from my phone, which I really need to be able to do. So the privileges will have to stay the same. I've suggested she not read it any more, because the last thing I want to do is hurt her in any way. I only hope she forgives me.

Cruel memories

Ten years ago, I'd completed my first day at Uni. I was in love with studying, in love with Liverpool. I felt as free as a bird.

I had four years of hard work ahead of me, I had no money, I'd given up my job and my wage and my home. I had no partner, no property, nothing but the prospect of doing what I'd dreamed for years of doing: being a student, graduating. I was scared shitless and deliriously happy.

I was surrounded by books and reading lists and syllabuses. I didn't know where the petrol station was, the supermarket or even a decent pub. I had no friends, no contacts, and an address I couldn't pronounce.

Today, I have a job I love but can't do. I have friends I can't get to and an address I never get to leave. My world has shrunk from infinite to miniscule. I'm trapped inside a broken body that no-one knows how to fix, and that I can never escape.

Back then I was looking forward to going alone to a foreign country with a foreign language and building a life for myself. Now, I can't even go to the supermarket by myself. I can't cook or clean for myself, I can't wash my hair change my clothes. I can't study or write essays, because I can't sit up for long enough. I can't even get to a lecture, never mind sit through it.

Ten years ago, it felt like my life was just beginning. Now it's over. Worse than that, it's mocking me, tauting me with all the things I used to do, used to be.

I wish I could just do it tonight, right now. Get the knife, two quick slashes and be done. Pills for good measure. I don't want to live like this shadow of who I was. It took me 30 years to be who I wanted to be. I won't live another 30 looking back on who I was. It's the ultimate cruelty to show someone what they could be, then steal it away, to let them watch everyone else grow into themselves.

My heart hurts and my soul hurts and I want to die. Tonight. I just want to be dead.

Saturday 17 September 2011

I can't make it thru another nite in this pain. I just can't.

I just almost threw up half way through eating lunch.

I managed to sit up earlier on and start the DLA forms. But within half and hour I just felt so stressed and overwhelmed and tearful with it all that I had to stop and go back to bed.

The pain was starting to build again and it's been getting worse ever since. I took three top-ups, but they've done nothing.

I didn't want any lunch but I know I'm supposed to eat. When I got up to get it I felt sick and dizzy, like a migraine, but I thought the neck pressure was under control; I'd been able to find a position where it seemed OK.

Then halfway through eating I nearly threw up, and now I can't eat any more. The migraine is still building, so I'm about to take a migraine pill.

The shoulder pain is still crap, my back hurts, the nerves are trapped and causing the migraine.

I don't feel suicidal, but I will kill myself if this carries on.

Friday 16 September 2011

I feel really, really low.

The fact that my life is now so lonely and so empty that I had no-one to help me with the shopping this morning.

That there was no-one I could call to come and help me when I was feeling so awful, no-one to come and take me home.

The fact that I've talked about what happened everywhere - on Facebook, in texts and emails, and no-one talks back. No-one rings to make sure I'm OK. I just lie here in endless pain, all by myself. I get one little text from my sister, then nothing.

It's bad enough to have to go through all that - the pain itself; the humiliation of bring stuck there, propped up by shelves, waiting for a wheelchair; the frustration and fear and powerlessness of being trapped somewhere, unable to leave when you want to. But to have to come back to an empty house - to nothing and no-one - and then to lie here all afternoon, alone and in pain, knowing that no-one's coming.

It could be weeks till I see a friendly face and the pain just keeps on and on and on.

Collapse in Tesco's

I'm back in bed after a traumatic morning.

I've been trying to get out to Tesco's for three days; I finally felt well enough to go.

Twenty minutes in to the trip, the pain exploded. I was on the snacks isle looking at fruit bars. The shoulder pain had been spiking badly most of the way round, but suddenly it went through the roof. At the same time, the back pain screamed in out of nowhere. I was shaking, I couldn't breathe, there was no strength in any of my limbs and I thought I was going to fall. I couldn't move, I couldn't do anything.

I grabbed the first staff member who came past and asked for a chair. I thought I was going to have to sit on the floor right there while he went to get it.

The staff were very good - someone stayed with me while I waited, two different manager-y types came to check on me and offer to call an ambulance, before the first aider arrived.

They got me a chair and I took two top-ups. I still couldn't move or breathe and I could tell from the tingly feeling in my lips and the way my face felt all wierd, that I'd gone really pale.

They offered to get me a wheelchair to take me to the cafe where it would be quieter, but they couldn't find one, so instead they brought one of the motorised scooter-trollies. I had to operate it, though, and it was agonising; it was really jerky and people kept walking in front of it, making me stop suddenly, and jerking me even more.

I sat in the cafe for over an hour, taking another two top-ups, till I felt I could get home. I couldn't finish my shopping, and getting to the check out, loading it all on and off the conveyor, and getting it to the car caused all the pain to kick off again. I was in agony.

I managed to get home and get the stuff inside and fell into bed.

All this after two days trying to convince the insurance people that going out and doing things makes the pain worse. Maybe their 'testing' should just be a trip to the supermarket...

Thursday 15 September 2011

Fairly good day, at least in comparison to the last few.

I did get some sleep last night, so got up feeling somewhat better than yesterday. The pain has been manageable, though requiring maximum top-ups. There was a brief period when I was trying to go out and it flared so badly I thought I wouldn't be able to drive, but it eased. And it was very bad after driving, but it responded well to three top-up pills (and the same again just now).

The neck pressure is bad if I get the position of my arm wrong, but there is a right position. The biggest problem is my back, all as a result of the 30-minute drive to the psychologist.

The appointment went well. She's been much more useful since my tantrum, and I've been more honest, letting her in on issues I've previously kept to myself.

The bad thing was that the insurance company rang about the rehab testing that so freaked me out on Tuesday. The call went to voicemail, but I guessed who it would be and got really upset again, at the idea of the testing. I was crying and shaking at the fear of the pain it will cause, and the feeling of powerlessness at being forced to go.

The shrink was very helpful and suggested she talk to them to make sure they understand the impact this is having on my mental health. She also suggested I get the GP to talk to them about the physical issues.

It helped, but I was still in a state about it. I decided to talk to Personnel before the insurance people, to find out what she'd heard in her conversations following my panicked emails. She didn't have much to add, but we did have a goof chat, and it was nice to get through a conversation without crying.

I didn't call the insurance people in the end because I was in so much pain, I couldn't face it. I'd also calmed down about the whole thing and didn't fancy getting upset all over again. I'll have to do it tomorrow though, and am already dreading it, because I fear they won't listen to me.

I also need to get started on the new DLA forms, but that needs me to be able to sit up, and I haven't felt up to that all week. It's worrying me, the thought of how much time the form takes, and actually finding that much time when I feel well enough to sit up

Wednesday 14 September 2011

This evening's final double dose is the first one in 36hours that's felt like it's doing anything.

I never did take any more top-ups, so today I've still been under my limit. It's just I've been in mind-blowing agony the whole time because none of the standard doses have helped and because of that, there's seemed no point in taking anything else.

All day I've been in agony from my shoulder, back, neck and head, including hideous screwdriver-in-the-eye and neck pressure. My hips are also killing me because I'm having to lie on my right hand side for hours at a time. Still my shoulder joint feels like its full of grit and as it grinds with any tiny movement, the neck pressure builds and builds.

Since that last dose, if I lie completely still, in the right position, the pains all go down and the neck pressure eases. But as soon as I move, it all kicks off again. But it's the first time in two days that I've got even that much relief. I just want some sleep now.

Psycopathic

I was just watching a programme that described a couple of characteristics of a psychopath. I've always said my father was a psycho, but the description they gave fit him so perfectly, I looked up others.

The article I found said:

'Psychopaths tend to be articulate, amusing and witty. Although they may tell stories that should be unbelievable, they have a knack for doing so in a way that causes intelligent people to believe them.

'The shallow emotions of the psychopath are evident in the fact that many claim to love the people they have abused or even murdered. Most abandon their spouses and children, or mistreat them if they stick around.'

This could be talking about my dad specifically. All the rest of the stuff was similarly accurate.

It makes me realise that it hasn't just been me being judgemental: my father really is a psycopath. Thank god I'm out of it.

A VERY hot bath and then on to the heatpad on full power and finally the headache is easing and my right eye feels less like it's coming out of the back of my head. The sling is also helping that and is easing the shoulder pain.

I'm still struggling to eat because I feel so sick and I'm drinking loads of Coke to ease that and slake the terrible thirst that seems to go with it.

Sitting up isn't helping though, I don't think, and I reckon I'll be back in bed within the hour.

Hideous day after hideous night

I feel like death. My head is thumping, I have a raging screwdriver in the eye, my shoulder is still killing, I feel sick and stoned and hung over.

I feel like I took shedloads of morphine, but I didn't; after the four in the early hours had so little effect, there seemed no point taking any more, so I didn't bother. All I've taken is the standard basic dose, so I'm still under my limit.

Which is why it makes no sense that I feel so shit. I can only imagine it's tiredness from a night of acute agony.

It's all meant I've had to cancel my chat with Personnel this morning, but my panicked 3am email to her about the rehab tests seems to have shown her what a headcase I truly am and she's trying to sort it out for me.

Crosswords, reading, TV, DVDs. I've tried all of them. They've passed the time, but the pain hasn't got any less. I'm in hell.

I finally get some relief from the pain and now I can't stop hysterically crying over these 'functional rehab' tests they now say I have to do for the insurance.

They woke me up yesterday morning phoning to make the appointment. I'm supposed to have had a letter about it, but I haven't.

I have to go to London or Reading - too far for me to drive alone, so I'll need someone to take me. And it's all 'push this' and 'sit here' to find out what I can and can't do.

Except for it to be a day I can even get there means it's a better day than most, so it's completely unrepresentative. They said it's all designed not to make my symptoms worse, but just going will make them worse. And I'm so scared. I don't want to go. They'll poke and prod me, make it all kick off for the next day, then tell me I'm not really sick.

I'm in so much fucking pain I want to die and I have to be dragged out like a faulty stereo to prove there's anything wrong.

Please just let me die now. Please. You can have anything you want, just let me go.

Tuesday 13 September 2011

I need the pain to stop and I really really don't want to be on my own with it tonight. It's too much, I can't do it.

12.30. I can't do this. The pain is unbearable. I can't do the forms and the appointments and all the shit they want me to do to prove I'm in pain. And I can't get through this pain this night. What am I going to do? It won't stop. Please somebody help me.

1.45. The pain went down for 10 minutes so I got up to go to the toilet and turn out the light: that's made it explode. I can't breathe. I've just taken four top-ups. I know I'm not supposed to, but until you've been through the torture I have over the last few hours, you are in no position to judge. There's no possible way you could understand; I know this because I know there's no way I could ever have understood it. You just don't know.

I'm going to have to keep telling myself this to fight off the guilt at breaking my own limit. I already feel weak and a failure for taking extra pills. The fact that the pain is so bad I was seriously considering swallowing the bottle of Temazapam keeps getting lost under '100mg per day'.

It's disapponting to recognise that although i managed to talk to my friend from work today, when the subject of work itself came up, I couldn't face it.

She asked if I'd spoken to our boss; I've been thinking that talking to her would be a good test of whether I'm mentally ready to work. I guess it was a good test, but unfortunately, I failed.

The thought of talking to her, hearing about work, what's been going on etc, was too difficult. I immediately felt very stressed and pressured and wanting to run away.

So I suppose the bed-working plan is still some distance away, though what I can do to hurry it up, I don't know.

I'm disappointed, but having felt that fear, I at least feel that off-sick is the right place for me right now.

Over the limit

The pain is still extremely bad. I've taken further top-ups and that does mean I've gone 10mg over my limit. That's bad, but I can live with it.

The point is, though, that I'm still in terrible pain after a dose of 15mg, plus a 20mg slow release dose. If that hasn't worked, we're into the territory of having to knock myself flat to get any relief. I don't want to do that, so although I have broken the limit, I'm still doing much better and being more in control than I used to be because I'm recognising that the pain is breaking through and will continue to do so whatever I take, so it's better to stop.

How I get through the night, though, I don't know.

More big stuff

There's an element of 'abandonment expectation' to all this too.

I've noticed since the big realisations that certain elements of compulsive, destructive behaviour have stopped, specifically me picking at my face and hunting for skin blemishes that I can dig at and make worse.

I wasn't sure if it was down to the realisations, but I thought it was. It was surprising though; I've spent hours - days even - trying to work out why I do that, and I've gone through endless attempts to stop doing it, but like an addict, I've never been able to. I've even tried following programmes for beating addiction, to no avail. In my most honest moments, I've recognised that I didn't really want to stop, because doing it met some deepdown need that I didn't understand. I knew that I'd never be able to stop till I worked it out though, because like any addict, I wouldn't be able to stop till I really wanted to.

Then came the big realisations about abandonment, schemers and activators, and suddenly not only was I not doing it any more, it wasn't even crossing my mind. The urge had totally gone.

Then my friend came round today. All afternoon and evening after her visit, I felt very odd, and I knew I needed to sit and examine what I was feeling. But I suspected that would be difficult and possibly painful, so I put it off. Then suddenly, I'm back into those old patterns of behaviour.

I stopped myself before it got too bad and I did the necessry thinking and analysing. It seems that some of what was said earlier with my friend had left me subconsciously expecting to be abandoned. I feared things I'd said would be inadvertently passed on to someone else in such a way that this other person would then turn their back on me, thus abandoning me.

There was also an element of not being needed by my friend and so being 'abandoned' in that way too, but it was the former that was the big thing.

Since working that out, the urge to destructive behaviour seems to have disappeared again. I need to discuss all this with the shrink on Thursday, but I guess it makes sense, me being me, that not only would I react to something happening, but I'd react to the possibility of it too. Especially as having to 'second guess' how others might react to situations was central to the uncertainty and instability of my childhood existence.

And after all that, the visit was lovely.

I was in a lot of pain and couldn't speak for most of it, but she chatted away and I got a brief respite from the pain towards the end that allowed me to talk.

Really nice to be back in touch, and to find that you really can pick up where you left off. It feels like a big achievement - like I've made a step back out into the world. Even though I never even got up off the bed.

My friend also told me about another friend who is similarly housebound and has apparently asked if I might be interested in chatting, because she finds it difficult not knowing anyone else in the same position. I feel the same way, so I suggested she get in touch.

As much as I love my friends and appreciate all they do, it would be nice to talk to someone else in the same predicament, because as hard as anyone else tries, they can never truly understand unless they've been there.

I'm still in an awful lot of pain today and I may be faced with the first situation where I have to consider going over my morphine limit (two at midday did very little, just taken three more but that only leaves one), but I feel pleased with my day.

So, I finally reach out to my friend, and she bails on me. Her car has broken down, which is not the first time, and not the first time it's let me down.

It's obviously not her fault and she didn't do it on purpose. In terms of 'schemer activation', this should put me into a complete tailspin. I should be furious and crying and feeling like I've been abandoned in the desert or something. That's what's happened before in this sort of situation, it's what happened last time her car breaking down left me stranded.

Given my reaction to the malfunctioning DVD player yesterday, that's what I would have expected. I don't though. I'm mildly annoyed, but I don't feel that overwhelming sense of 'let down' that I normally get.

If the DVD thing hadn't happened yesterday, I would have thought it was because I wasn't really invested in the visit, that I didn't really think it would happen or something - anything that undermined the importance of the ocassion. But if I can flip out over something as stupid and minor as an electronic failure, clearly the importance of the situation is irrelevant.

All of which means that my reaction - or lack thereof - to this 'activator' is a good sign.

Scared shitless

I'm lying here terrified that I'm going to be attacked and it's making the pain explode. I'm hoping if I write it, it might make it go away.

I was asleep. But I was dreaming that I was in a big, strange house somewhere dangerously remote, unable to sleep because I was afraid someone was going to attack me.

I wasn't alone in this dream; I was in bed with someone, but they were sleeping soundly. I think it was my sister (the bad one). In the dream, I woke up to hear someone rummaging through the room next door, lights ablaze, with the radio blaring about a lone house in an even more remote place, where an attack was known to be taking place. And I knew the person in that house was my mother.

When I woke up from this nightmare (in real life), I was filled with terror of someone in the next room. I still am. It didn't help that my upstairs neighbour then decided to get up and start doing whatever the fuck it is she does at this time of night. Loudly.

I'm still too scared to step outside my bedroom door. I've got all the lights blazing, but I still can't close my eyes, because if I do, immediately I feel that imminent threat. And my eyes are so heavy. And it's all kicking off really bad shoulder pain. I want to cry, but if I do that, I won't bs able to hear someone coming, so I can't.

The fact that my mum and my sister were so prominent in the dream suggests that the 'threat' is my father; I'm back to that again. It was the same fear last night, I just never managed to name it.

I'm so fucking scared. And so fucking tired. I want to sleep, but what's going to cone at me if I do?

2.15am. I think I've just worked it out. If I'm in a room with R, hearing him in another room, terrified that he'll come for me - that must be because he was in there with L. Which means I'm remembering back to when he'd stopped with me (he stopped before she was born), but I was still terrified he'd start again. And I'm remembering what she's never been sure actually happened.

The fact that, having realised that, i'm no longer so scared, tells me I'm right. It's not the first time I've remembered stuff happening to L, but it's a long long time since i did, and I wish I hadn't, because it's not like she wants to know. Which means I have nowhere to go with the memory but here.

[I'm not reading this back, it's too fucking scary, so you'll just have to read around the mistakes.]

Monday 12 September 2011

Two hours out of bed. That's all I've managed today, two hours. And they weren't even consecutive hours.

I've had to take top-up doses twice and I'm still in pain. I can't keep my eyes open. I managed a proper dinner for once, but now I feel sick.

Terrific.

This is disappointing.

Ever since the big realisations a couple of weeks ago, I've felt better mentally. No suicidal-ness, feeling more positive, gagging to get back to work, etc.

I decided it would be wise to test the improvement, to make sure I'm really ready for work. Before I talk to Personnel and put the wheels in motion. So I was thinking about spending time on the company website, or talking to work colleagues - something to immerse me in the work environment and see if I stayed OK. Make sure I didn't have a meltdown at the reality of work.

I've been wanting to see my friend that I haven't been able to speak to for months, and as she's also from work, this seemed like the right time.

So I arranged to see her, and I'm genuinely looking forward to it. But I then found myself getting upset and feeling abandoned when my DVD player freaked out. It was one of the ridiculously small 'schemer activation' moments that the psych talked about. But I haven't had one since that appointment, and I was really hoping I was one of the cases where identifying it is enough to turn it off.

I'm gutted. And I'm worried this means I won't be able to cope with my friend's visit, or even go through with it. And I'm worried it means work is still impossible.

The technical term for how I feel today - rough as a badger's arse.

No sleep, back pain, shoulder pain, neck pressure.

It's not fair. One poxy good day, ONE POXY GOOD DAY and I have to pay for it with a shiity shitty night.

I feel stoned out of my face, I can't sleep, I'm bordering on panic and my shoulder hurts. What am I supposed to do? Huh? What do I do?

Sunday 11 September 2011

Terrible terrible back pain. Such a shame after what was essentially a pretty good day.

More later.

12.30. Top-up pills are kicking in. They're only masking the pain, not killing it, but it's helping. I can't reach my specs though, so you'll have to excuse any typos I can't see.

The back pain I think is a result of managing to colour my hair this morning. I was very chuffed with myself, as it's the first time in months I've felt able to do that as well as feeling there was any point to it.

I also managed to stay sitting up the rest of the day and I felt OK. But when the back pain started, so did the shoulder pain and the neck pressure.

I've been aware all day that I was probably overdoing it, but it felt so nice to be able to do stuff at the same time as having the motivation to. Actually *wanting* to do things - seeing a future that made it feel worthwhile doing them. But I think I'm going to suffer for it tomorrow, possibly badly.

Idea

Here's a thought.

I'm stuck in bed most days, unable physically to do anything more than that, but I'm mentally alert at least half the time because of the lower levels of morphine.

So, if the right equipmemt were in place, why couldn't I work from bed? It would require a very lightweight laptop fitted with Dragon, and I would have to learn to use the voice activation for absolutely everything. But since most of the time I can't sit up, the temptation won't be there to even try doing things by hand.

I reckon three-quarters of my job could be satisfactorily done that way. Meetings could be by phone, as before. The main thing I couldn't do would be testing of new electronic products. The company would have to pay for Dragon-coding of certain programmes (particularly our own ones) and for complicated spreadsheet-related projects, but surely that would be better than me being off sick forever?

I wouldn't be able to be in the office, so I'd still be feeling isolated, but at least I'd be doing something useful and feeling a bit productive.

Is it do-able, or am I being daft??

Saturday 10 September 2011

Failed

I spent under two hours on the laptop this morning, listing stuff on eBay. And it's nearly killed me.

By the time I finished, I was in agony. My back felt ready to explode with pain. I took two top-up pills and lay down. They've kicked in, but still the pain is so bad the furthest I can walk is the kitchen, and I can't sit up for more than a couple of minutes at a time.

I was using the laptop in bed, so my legs were outstretched, but even so, I don't imagine things would've been much better if I'd been at a desk.

This was on top of the painful day I had yesterday, and the activity of the previous day, which had already caused a lot of back pain.

It all represents just a fraction of the movement and activity that would be required if I was working, even if it was only part-time. I imagine the minimum amount if hours you can do part-time is 10 per week, or 2 per day.

Over the past three days respectively, I've done 1 hour, half an hour, and 2 hours. The rest of the time I've been confined to bed and taking top-up pills, because of the pain caused by those attempts at 'work'.

All of this proves that, as I feared, work - even at very low part-time levels - remains impossible. Yet the lower morphine levels mean I'm awake more, and much more concious of the shitty hopelessness of my situation. So I'm even worse off than before.

Friday 9 September 2011

Bad day

Pain has stayed bad all day.

All I've managed to do today is make a couple of phone calls and clear a space on my desk for my laptop. That was so I can practice sitting at my desk, and was something my friend suggested at the weekend. I said no at the time, because I felt it would be impossible to use. I think that may still be the case, but it's worth a shot.

However those couple of jobs - early this morning - aggravated the pain I was already in and I've spent the whole day, bar one hour, in bed. I've just got up (half hour after finally taking top-up pills, which have proved pointless) and I know I'll be back there again soon.

So much for getting back to work!

The pain is bad today, especially my shoulder.

I think it's going to be a shitty day.

The ignorant bastard who answers the phone at the Complex Needs Service is enough to make me never want to go there.

I only called to accept my appointment and still he managed to be the most obnoxious little shit I've ever come across.

Read this BBC article, published today:

http://www.bbc.co.uk/news/health-14837879

Thursday 8 September 2011

Work

I want to find out from Personnel what the minimum number of hours is that I could work part-time.

I'm thinking it's probably about 10; at the moment, the most activity I can manage on a day is an hour - like today - after which I'm generally in bed for the rest of the day. That means I'd only be managing 5 hours.

I'll also have to look at it over the course of a week too, because if I am then useless for several days, it's no good.

I think, though, that basically I need to be able to manage 2 hours a day, consistent and reliably. At the moment, that seems a distant dream, but it's what I want.

Though I suppose the upcoming therapy could shit all over those plans...

Another possibility I guess would be trying to do several hours on a Team Meeting day, then nothing for a few days (because i'd be flat on my back), but that's probably too much.

And would I get paid sick leave if I was then off? I've used up this year's allowance, but it's a big question.

Lots done

Successful morning - got a lot done - but my back's now very sore, even though all I've been doing is a bit of shopping, and fixing the chin cage.

It might be the latter that's the problem, because it meant some twisting and straining. The girls have chewed through the corner of their shelf so the screw was exposed. It could damage their teeth, or the shelf could come lose - given how they slam about in there, that could be very dangerous. So I needed to reattach it, further in.

One of the things I was shopping for was a hand drill, to make the hole in the shelf. Apparently, you can't get them any more, except online. Luckily, it turned out I didn't need the drill; the wood was soft enough to give way just to the screw. So, shelf fixed.

I also got the scart lead I need to hook up the bedroom video to the new freeview box. I think that'll have to wait though, because it requires bending and stretching, and right now I'm struggling even to stand up.

My little trip also yielded some very useful items from the 'hardware discount bucket': a magnifying glass (even with my reading specs, I can't read the back of one of my birthday CDs, though I feel ancient admitting it!), a boa constrictor jar opener and a clip-on reading light (so if things are bad again like Saturday, I can read without having to worry about getting up to turn out the light). All of these were a quid each - extremely good value.

And because I apparently haven't treated myself enough for my birthday, with all the Doritos and marshmallows(!), I also bought a Toffee Apple Crumble and soya yoghurt that I plan to stuff my face with later. Aside from my Mum's treacle tart, it's my favouritest dessert in all the world, and I'm totally looking forward to it!

Wednesday 7 September 2011

Fell up the stairs

I've just fallen up the stairs and landed on my bad shoulder.

As I came to the last couple of stairs (going up) after checking my mailbox, my toe caught in the opposite trouser leg and sent me flying. It all seemed to happen in slow motion though. I was falling forwards slightly to the left and I knew that normally one would put the left hand down to break the fall. But I also knew I couldn't do that, because it would be agony for my shoulder, so instead I had to roll further to the left and do a sort of stuntman-roll landing onto my left shoulder. There was no way I could change direction to fall to the right, so this was the least dangerous option.

Luckily, because I was at the top of the stairs, it was the landing I was falling onto, not the hard edge of a stair, and because my feet were several stairs down, the height I had to fall was a lot less than it normally would be. All of which meant it didn't hurt nearly as much as it could have done. Still, having been fighting terrible pain all day, it was the last thing I needed.

I'd given in and taken a10mg top-up at 1.30 and it did help - mostly because I then felt sufficiently stoned not to be too bothered by the continuing pain. But that fall has kicked it off again. I could really, really have done without it.

In agony. Not back as expected, but shoulder. Pain is coming in waves; when it hits, I can't breathe. Then it eases for a bit. Each time I think it's time to take a top-up, it drops down and I think maybe I shouldn't. But really I know I should. It's just in terrified - if I take it now and things get worse, I'll already have used up part of my daily allowance, so I'll be screwed.

Tuesday 6 September 2011

I've managed to sit up all day today, though only really because I was waiting all afternoon for the TV man to arrive.

He was making the bedroom TV digital-ready, and it didn't feel safe having a strange man come into my bedroom and it be obvious I'd just got out of bed. I know that sounds daft, but it's bad enough having to let a stranger into your bedroom - that would just have been a step too far.

Typically, he arrived five minutes before the end of the four-hour window they'd given me. All for a ten-minute appointment.

Anyway, during the afternoon, I got loads done, like putting my new CDs onto my mp3 player, searching for scart leads, and so on. I suspect I'll pay for it tomorrow. In fact, I wouldn't be surprised if I'm stuck in bed - my back feels very tender from hoiking the heavy old laptop about, and the shoulder pain was building all afternoon till I finally took something at 5pm.

But it feels good to have got those things done, and if I am stuck in bed tomorrow, at least I now have lots of TV channels to choose from! It's taken months of faffing and phone calls to get this sorted. I hope it's all worth it.

A good night's sleep - the first in days. Lovely.

Monday 5 September 2011

Update

The terrible pain episodes of this weekend were depressingly instructive.

The way the pain went bad after the shrink appointment, then crazy on Saturday night, and tried to last night but I headed it off by lying down before it got started, all proved that having the facility to top-up the pain relief is crucial. I know the top-ups didn't work on Saturday, but they did on Thursday, and in the end they did yesterday, though it took two doses (a total of 30mg).

Without those top-up pills, each of those pain episodes could have been as bad as Saturday. I'm strong, I think I've proved that with the way I've made it through four years of this hell. But I'm not that strong. I couldn't tolerate repeated episodes like Saturday.

The whole idea of reducing (and coming off) the morphine, was to see if there was any situation that was better, before I decided to finish it all. The key thing was to find a way to be able to go back to work. Being forced to cope without top-ups would be worse. Not only would work be even less feasible, I'd be even more likely to kill myself.

This answers a number of questions. It means that zero morphine is unfeasible. It also means that trying the Tapentadol is contingent on being able to supplement it with morphine. I've asked the GP to find out for me if that's possible (in an email at 3am on Sunday, since the pain was keeping me awake!). Right now, I'm hoping he says no, because then I can just discount that possibility, and move on. I'm expecting the answer to be no anyway, since I did ask the pain consultant, and he said no top-ups, But he also talked about augmenting it with Oxynorm till you get down to the lower level of opiate in the Tapentadol. If you can do it for a few days, maybe you can for longer. We'll see.

The other big thing is that, at the moment, I'm taking slow release morphine every four hours. Although it's supposed to be a 12-hourly dose , I find it wears off much sooner than that. But I couldn't do that on the Tapentadol, because it's a strict twice-a-day thing. I started the four-hourly approach to manage the breakthrough pain without topping-up; a twice daily dose would just lead to more breakthroughs. Even if a bit of topping-up was allowed, based on my past experience, it wouldn't be enough.

So, I need regular drip feeds of pain relief, to keep a constant level in my blood. The pain will still break through, but generally only up to a point - the point that I've been mostly managing to tolerate using mental techniques over the past week (though still only when doing virtually nothing). When it breaks through badly, I need the opportunity to top-up. But if that doesn't work, there's limited point in taking more, because a) it'll only make me sick, b) the pain will still break through to the 'normal' amount and c) it raises my body's expectation for morphine next time, and hence lessens its potential efficacy (because it's all going to make my body feel OK, not to ease the pain). Working would undoubtedly lead to more and more top-ups (as it did last time I was in this position, a year ago), simply because I'd be moving around more, sitting in different chairs, leaning, twisting and so on.

So. It seems to me that the net result of all that is that I need to keep taking the morphine - stopping it isn't an option. But reducing it was a good idea. I've got it to 70mg/day, with a top-up budget of 30mg. I think I can reduce the daily dose to 50mg (five doses of 10mg/ day, instead of the current three of 10 and two of 20). The top-up budget will remain 30mg, but in cases of emergency (eg, Saturday, but not Thursday or last night [because I'd headed it off]) that can go to 50. So I'd still be taking a maximum of 100 in any one day, but usually between 50 and 80.

That's half what I was taking on those really bad days the other week, and on non-top-up days it would be a third of what I was regularly taking before that. That would be really good on all counts. It would keep the GP happy because the levels wereb't rising; it would keep me within what the Pain Clinic has me on record as taking; it would be easier on my body in terms of side effects; it would give me the mental boost of feeling I was fighting back by doing some of the pain management mentally.

I think it's do-able, and the other thing to consider here, is that dealing with painful psychological issues always increases pain, if only because of the tension in your body and the effects of crying. If I'm going to be dealing with more of the fallout from my abusive past, I can expect the pain to be bad. So I need to know I have access to sufficient relief.

Sunday 4 September 2011

Mood

Oh, and I haven't mentioned how low my mood got at times yesterday.

It started off very low - it was nearly lunchtime before I could bring myself to even get out of bed.

Things improved when my friend arrived, but crashed again when she was telling me all about her latest job. It was really hard because I felt so resentful and jealous that she gets to work and I don't. She's been having an awful time, yet still I felt that I would swap places in a heartbeat.

Unfortunately, I didn't realise how much it was getting to me, and I didn't ask her to stop till it was too late; I wound up in floods of tears and had to hide away for a couple of hours. Even when I came back out, it took another hour for me to feel like myself again.

I got quite upset about work again today. There will be a later post on what triggered it, but the impossibility - as I see it - of me getting back to work, how desperate I am to do that, and how it just seems that the difference between where I am now, and where I was a year ago must be due to something I did, that I must have messed everything up somehow - it can't just have been an accident.

Yet I can't come up with anything, and my friend pointed out that I'll drive myself crazy thinking that way. I know she's probably right, but it's incredibly hard not to.

Last night carried on being awful.

I was in agony, having panic attacks and flashbacks all through till 5am, when I finally managed to go to sleep. I woke up at 9.30, still feeling like shit.

The day did improve, though I've been in bed the whole time. But at least my friend was still here to keep me company.

She left about 5.30pm. I was bored stiff of lying down, so I tried sitting up for a bit: I lasted less than an hour. By that time, the pain was already kicking off just like yesterday - I had to go back to bed while I could still move.

It's still that bad. I'm desperately trying not to take any pills, but I'm far from certain that the achievement is worth it.

On too of that, I've got terrible tummy pains (self-inflicted, from all the junk food this weekend, so no sympathy needed).

Tonight

You know,
it was supposed to be tonight.
That date.
THE date.
It was tonight.
I liked the symmetry of it:
Coming and Going.
Then all those revelations,
realisations,
and it was the desire that died.
The Final Days
transformed
into just more days.
Mere days.
But now the night,
The Night.
Not just empty, but gaping,
straining,
bloated
with everything.
All of it.
All at once.
Trade Nothing for Something,
for Too Much.
Far too much.

Oh god, why are the panic attacks worse on less morphine? And why do they suddenly have to stop being about some nameless, faceless terror, and start being about my dad?

I can hear him coming in the back door, talking to my mum, opening the lounge door. I can feel him coming up the stairs to my room, opening the door, walking in. I can feel him touching me, forcing me to do things. My mouth. My throat is closing up and I want to hurl. I can't breathe. I'm shaking.

Christ, has this night not been bad enough? How much is one person supposed to bear?

Unbearable

It's been a god-awful night, pain-wise, and it's only 2am.

The shoulder pain had been spiking all afternoon, but I'd managed to live with it and not take extra pills. Around 9pm, though, it got really bad; I stood it for an hour, then had to take something - 15mg top-up. At 10.30 I took the scheduled 20mg slow release pill. The pain was still rising.

At 11, I took another 15mg top-up because it was even worse; no effect. I took Paracetemol and ate something, all tricks that help activate the morphine; nothing. The pain stayed exactly the same - stabbing prongs of agony into the back of my shoulder, plus bands of pain across my back and lines of pain up and down my left arm.

There seemed no point taking anything else - not only had the 50mg I'd taken in the space of two hours done nothing for the pain, there had also been no side effects. It has having zero effect on me. Maybe it's because I had spent the evening gorging on Doritos and popcorn - my blood sugar was probably high, maybe that works against morphine. I don't know.

Luckily, I wasn't alone - a friend is staying this weekend. Any other time, I would have just been trapped in my chair till morning. Unable to move, sleep, even get to the loo.

Finally, at 1am, we tried moving. She had to gently pull me up out of the chair, then I used my stick to walk. I nearly pulled the sink off the wall, pulling myself up from the loo, but I really really didn't want to have to ask my friend to watch me pee. But she did end up having to dress me: I could get my trousers off, but not my PJs on.

Then she spent ages rigging lights I could reach, so I could read for a bit, without having to then get out of bed to turn out the light.

I'm about to try and go to sleep, but that will mean taking off the sling and trying to position my arm; any error will result in not just excruciating pain, but the addition of neck pressure as well. Lying perfectly still, I can still feel the pain in my shoulder, so I know this is going to hurt. And I'm scared.

And all the while, I'm wondering what this means for the medication experiment. If I change to Tapentadol, and top-ups are not allowed, every pain flare up will be like this. The same if I come off morphine entirely. How do I survive that?

Nan

My late grandmother came to visit today, something that hasn't happened in a really long time.

She died in 1998, but for years after that, she was a regular visitor, particularly to me. She liked to play with electronics - making things turn themselves on and off, work when they shouldn't be able to, that kind of thing. She even managed a visit while I was in Colombia, and she was the one who got me through my motorbike test, holding me upright on the u-turn manoeuvre when I kept on dropping the bike. She kept me safe and made sure I knew she hadn't left me.

She hasn't been around for a long time though, till today.

I'd been looking for some Post-its that had magically run off, but couldn't find them anywhere. Later, I heard an alarm, or a mobile phone ringtone, coming from the bookcase behind the mothership. It was my old Palm Handheld, that I no longer use.

I picked it up, wondering why it was suddenly sounding an alarm, when it hasn't done that for the past two years. The Calendar events come up, but silently, because I turned off the sound when I took it out of commission.

I went into Preferences, and found the sound still deactivated, despite it having just gone off. Then I noticed - the Post-its were sitting under the Palm. It was clearly my Nan, letting me know she's still around, watching over me, taking care of me, just like she always did.

She was the only one who supported and encouraged me as a child. The only one who made me feel loved and safe. It's good to know she's still there. I really hope she can give me some sign as to what I should do next.

Friday 2 September 2011

I did end up having to take top-up pills when I got back this afternoon, and it does still worry me how I would cope with that situation if I was on the Tapentadol, or indeed off the drugs altogether.

I was in a lot of pain, I didn't take them lightly, especially with the reaction I had the other day. And they did help.

The question is, could I get through it without them. I don't know, I really don't.

What I do know, though, is that the pain has been getting bad for the past half hour. I took the bedtime pills 45mins ago, so I really, really need them to kick in now.

Huge breakthrough

Unexpectedly useful appointment with the psychologist today. I came away with kind of a diagnosis - a clearer idea of exactly what kind of screw-up I am.

Apparently, what I need is Psychodynamic Therapy. My 'schemer' - the main, underlying issue that pretty much everything else springs from - is abandonment. A 'schemer activation' is anything that triggers that issue. So anything that makes me feel abandoned will trigger ALL of those feelings. That explains why I over-react so badly whenever I feel let down or uncared-for; each time, I'm reacting to ALL of the abandonment I felt as a child.

These 'activators' can be nothing like what you might imagine. Apparently, something as minor as someone forgetting that you don't like a particular flavour of cake can set you off. Suddenly, you're feeling that friend has abandoned you and doesn't give a damn about you - how else could they forget something so basic? As a result, you react as if they had just walked out on you in your hour of greatest need, even though you know logically that it's nothing of the sort. You can feel yourself doing it, yet are powerless to stop it.

So all the times that I've felt terminally let down by someone forgetting something I told them, turning up late, not calling, not understanding, not bringing something they promised, missing my birthday, or by businesses not having something in stock, missing a delivery date, being understaffed - they're all explained.

All those things and a million others: to me - unconsciously, unintentionally and entirely wrongly - each and every one of them is synonymous with my mother abandoning me to the clutches of my rapist father.

I've known for a long time that abandonment was a big issue for me. I knew it was causing me to over-react to things. But I had no idea of the depth of the problem.

Apparently, the realisations I had earlier in the week about being inside my ultimate childhood terror, where no-one is ever going to come and save me, were a huge step. Even more so with the realisation this morning that being in my ultimate childhood terror actually represents the ultimate abandonment. Think about it: when you're in a terrifying situation, part of the fear is how much worse things could get, the worry of what comes next. But there IS nothing worse; I'm already in the worst possible place and no-one's coming. There's nowhere left to fall.

It all explains why the realisations had such a drastic effect on me, stopping the suicidal merry-go-round that had been going on in my head for days. The shrink said that when you have a eureka moment like that, it can 'clear out' the blockage; the schemer activations can just stop. But not always.

I still feel there may be more to discover from those realisations and their impact on me, or maybe it really is just that, and the fact that I have survived what seemed so unsurviveable.

Apparently though, my exhaustion today - by the time I got to the shrink I was so tired I could barely speak - is due to the enormity of these realisations.

Anyway, I guess I just have to see what happens next time someone does something that I would normally perceive as letting me down.

In the meantime, all I can do is explain all this to my friends and family, and hope they continue to understand my over-reactions, see them for what they are - a symptom of a psychological condition - and forgive me.

Not so easy with my mother herself, though, who would understand all this about as much as she'd understand Swahili!

Pain is worse today, and it's a lot harder to find a position for my arm that eased the neck pressure and the shoulder pain. I'm feeling exhausted too. I'm dreading driving to the shrink - it's only half an hour, but it just feels such a long way.

Going to the shrink today seems sheer folly, given how OK I'm feeling, and how likely she is to screw that up...

Thursday 1 September 2011

Possible

The last two days I've felt the faintest, vaguest possibility that I might one day actually get back to work.

Don't get me wrong, I've been in pain, I've spent hours in bed, I've felt very low. But there's been the slight sense in the background that this position might not be unrecoverable.

I hope I don't regret writing this out loud.

Two days of not feeling suicidal - that's a record.

Seeing the shrink tomorrow though - sure that'll fuck things up nicely.

I've just taken all the recurring work-related entries out of my electronic diary. I'm hoping it'll have a 'reverse-psychology' type effect, and mean I wind up going back to work and so having to put them all back in again...

My current refusal to take any top-ups means I'm sitting on the basic morphine level - 70mg/day.

It's this time of day that tends to be hardest - from now till the 7.30 dose kicks in properly, which could be not till 9. I ache all over, especially my back, I have shoulder pain and neck pressure.

I could take a top-up - 10mg would ease the aching, but there's every chance it won't help the actual pain, and it might make me feel really stoned, like last night. I'd really rather avoid that.

I already feel weak and very tired. I've been trying to gather the energy for a shower for the past two hours, but I still don't feel able to get undressed. But I have to go see the shrink tomorrow, and we already know that showering and driving on the same day is too much.

Maybe if I can get in there, the heat will help, who knows.

4.45. I think the best idea will be to bring the 7.30 pill forward. That gap is longer than all the others anyway, so it'll even things out.

Neck pressure is quite bad today and getting some severe shoulder pain. Seems no point taking any top-ups though - it'll just make me feel stoned as well as in pain. Keeping my arm propped up slightly out to my left seems to be helping the neck pressure a bit; nothing helps the shoulder pain though - just gave to wait it out.

Tapentadol

I've just spoken to the doctor about the new drug (Tapentadol).

I know I said I wasn't going to try it, but it seems to me that if I'm reducing the morphine anyway, I might as well. Last night's experience, being so stoned I couldn't sit up, yet still in really bad pain, makes me think it may be the right choice.

Initially, I thought maybe I would stop the morphine, then try the Tapentadol later if necessary. But that could potentially mean two more experiences of withdrawal - coming of Oxycodone, then later coming off Tapentadol if it didn't work and I decided I was better off with nothing. To be honest, that's just not acceptable.

It was bad enough coming off morphine the first time - actually, it was sheer hell - I always said it wasn't something I'd ever do twice. Yet here I am, feeling it might be the right option, despite feeling utterly fucking terrified. But I'm not going to punish myself by doing it three times, if I can help it.

It makes much more sense to come down enough to change and try the Tapentadol. If that doesn't work, then I can carry on to nothing, knowing that at least I gave it a shot. And then I can turn my back on opiates for good. Whether that means living with the pain, or ending it all will be the next question.