Sunday, 31 July 2011

I don't like Sundays

I used to dislike Sunday evenings because i knew it was work tomorrow, just like everyone else. Now I hate them because everyone else gets to go to work and I have to lie around in pain and on drugs.

I know it's right that I'm in no fit state to work, and I know it would be stupid and counter-productive to try, but I really really wish I was.

I want to wear nice clothes and sit through endless meetings and have pointless arguments over things that don't really matter. All so I can settle down in the evening and think about what I've achieved that day.

I don't want the sum total of my achievements to be 'took out the bin', 'did the washing up', and for managing those things to be a really big deal. I want to go back to when I could take that stuff for granted. Fat fucking chance.

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One of those days where basic levels of morphine knock me completely flat. I've spent the whole day unable to keep my eyes open. Weird dreams, feeling totally stoned.

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Awake. In pain. Pissed off.

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I'm scared to talk to my doctor or the shrink about my pain being rooted in psychology, because I think that'll just make them discount it as being 'all in my head', not real. When it clearly is real. But if they haven't read the literature, they might not get that.

And once something's said, you can't unsay it. This is hard enough without them being even less believing of me.

But if I can't say it out loud, with conviction, I'm afraid all of this work will be for nothing. Because if my brain doesn't see that I've truly rejected the 'distraction' pain and addressed the underlying issues, it'll just keep doing the same thing. Or it'll shift to a different manifestation of the same thing. And I'll be no better off.

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Saturday, 30 July 2011

The depression's been really bad today, I suppose following on from yesterday's doctor's appointment.

I had thought I was doing ok, till I got in there and started talking to him, and realised how not-ok I felt. And it's got worse and worse ever since.

It got really bad late last night because my neighbours were being really noisy and that lack of consideration made me feel very ignored and uncared for. I felt the same getting up this morning, things improved when my friends cane round but then have got worse all evening as the noise levels have risen. And my pain levels are rising accordingly.

It's just too hard doing all this on my own. Not the noise stuff, just coping with all this pain, and now the psychological stuff that trying to resolve the pain keeps on raising. It makes me realise that I've spent the majority of my life feeling incredibly lonely and unprotected.

It goes right back to my mum not giving a shit about what happened to me. She always says it was a time when new mums were encouraged not to 'coddle' their babies, so she just left me to cry. My ex-boyfriend always took perverse pleasure in me being upset, and would not only leave me to cry, but actively cause the upset first. I left him 12 years ago, and since then, I've been alone. I've had friends, some of whom have been great, some who've turned out only to be interested in their own needs. But essentially I've been alone. And for the past four years, I haven't even had the option of going out and changing that.

And now I'm here recognising that the pain is rooted in psychological issues and trying to unlock them. BUT IT'S TOO HARD. Every time I delve into the psych problems I just get completely battered. I KNIW THAT'S WHY THE PAIN'S THERE, BUT TRYING TO FIX IT HURTS SO MUCH! I can't do it by myself. I hate the physical pain, but the emotional pain is just as bad. And nothing eases it.

I CAN'T DO THIS ALL BY MYSELF. It hurts too much. Please, please, somebody come and help me. I don't understand why she's never cared enough to help me. What did I do wrong? She'll risk her life for my sister, but she won't even sit here with me. I just want my mum to care - is that too much to ask?

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I really want to go shopping and buy loads of funky cool clothes and shoes.

But it's completely bloody pointless. I can't go out and wear them, and there never seems any point dressing up just to lie in bed.

I'm so bloody fucked off with all this. I want my life back, I want to go back to work. I DON'T WANT THIS.

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Brief respite

God, I'm sure starved of companionship.

Some friends just popped round for an hour with their kids and it was so nice to have some company.

I'm really fond of all of them, but I just haven't felt up to seeing them for months. The pain is quite bad again today, so I'd spent the morning in bed, in the hope that I'd be able to sit up for the duration of their visit. It worked, and I was.

We sat and chatted, played with the chins (including a demo of crazy-Ricochet-and-her-dustpan-and-brush) and it was lovely.

I'm now knackered and back in bed, but it was fun while it lasted.

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Friday, 29 July 2011


Pain levels have stayed very low today, following the unexpected rage-release last night.

I took one 10mg slow release pill at 7am. Because I knew I needed to drive to the doctors, I was planning to take another at midday, instead of one at 10 and one at 12.30. But I wasn't feeling the need, and I knew driving would be better with none, so I didn't bother.

In fact, I didn't take any more morphine till 5pm, when I got back, and only then because I was getting bad back pain that I know is a withdrawal symptom. Not surprising, since yesterday I was on 105mg and today just 10. I was amazed I hadn't had withdrawal pains before that, to be honest.

So, 30mg so far, and I'll take another 20 at bedtime, instead of the usual 30, and again its to prevent withdrawal pains, since at the moment, I'm still not getting anything more than the niggly shoulder pain. I am still getting some neck pressure problems though, and the withdrawal pains in my back are bad. And I've been having trouble to a couple of days with almost passing out whenever I start moving around. It's happening a lot at home and did it again when I got out of the car at the doc's.

All of that is all very well, mind you, when on top, the depression is going crazy and I just want to crawl into bed and cry.

I'd rather have the pain than the depression, so we'll just have to see what happens over the next few days.

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Doc today signed me off for another two months.

I'm gutted. I was really hoping things would pick up over the next few weeks, so I could get back to work in September.

But he obviously thinks I've got no hope of feeling any better, which leaves me feeling even more shit. And then there's the fact that it's becoming increasingly obvious I'm going to have to delve right back in to my abusive past, if I'm to have any hope of getting through this. And I so fucking do not want to do that.

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The magic book is all about how chronic pain is a function of repressed rage due to (often childhood) trauma. It talks about how you need to recognise that this anger is there and work out what you're actually angry at.

I've found that element of it very hard; focusing on some esoteric rage hasn't helped, but seeing the pain as directly linked to psychological issues definitely has. And I've got plenty of trauma to draw on. So I've been using the book, but altering it to fit my own circumstances.

Last night, I was following the instructions in the book, where you write down all the things you're worried about and that the pain might be distracting you from.

It was all going fine. As usual, it was fear rather anger that kept coming up. Then, all of a sudden, I was completely awash with rage. Jeez, you wouldn't believe how much rage! And it was mostly directed at my mum, not my dad. The thing that makes me mad is the neglect and the emotional abandonment, not the sexual abuse.

So I wrote and wrote and wrote until the rage dissipated and I found myself able to sleep - properly sleep. The pain has been very minimal so far today and I've taken just one morphine pill.

I don't know if that means it's not coming back. I'm seeing the doc today but I daren't tell him about all this - partly because I don't know how long it will last and partly because I just don't feel I can trust him, after that last meeting. I guess I'll just have to wait and see what happens.

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Wednesday, 27 July 2011

Sucked in

I let myself get hopeful. The book, the 'fuck the pain' thing; I let myself hope it could all get better.

I was imagining going back to work, thinking about shopping, hanging out with friends, playing with my neice. I was even fantasising about wearing heels and all the other clothes I can't physically get on and off.

And then it all gets taken away again. I should never have let myself get sucked in.

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I woke up with terrible back pain and an evil screwdriver in the eye headache.

I don't have the strength for this. I don't have the strength to go back down the rabbit hole of abuse and deal with all that emotional baggage. Which just leaves the pain. And I don't have the strength for that either.

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This is the point where I gave up on the approach laid out in the new book before.

With the emotional pain now easily as bad as the physical pain, there seemed little point in continuing; if I was going to be in pain either way, why not just stick with what I knew?

It's so unfair. Either I have to be in such hideous physical pain that I just want to die. Or I can work really hard, just to have it morph into emotional pain so bad that all I want is to die.

There's no guarantee the hard work will pay off, no certainty of any reprieve. Just pain, pain and more pain

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Where did everybody go? I'm scared I've driven everyone away.

In the minutes after the accident, after they cleared the waiting traffic but before the helicopter landed, there was a moment when I looked out down a gapingly empty road, all grey tarmac and nothingness.

That's how the world seems now. Everyone's turned and left. It's just me. There's not even anyone to hold my hand. Where did everybody go?

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Tuesday, 26 July 2011


Another childhood related breakdown this afternoon that reduced me to a sobbing mess cuddling my dolly.

I've begun working through the new book my friend gave me (or re-begun, given that I started once before and had to stop). I'm doing it in conjunction with the 'Fuck the pain' attitude I've mentioned before.

As last time, it's having immediate effects on my emotional state. In both cases, it's leaving me in a state of complete terror. Last time I was terrified to step outside my bedroom at night, for fear of what might be waiting there. Then there was the dream/flashback of someone looming over me. And today I was suddenly transported back to being a tiny baby, lying in a pram, terrified and wailing for someone to protect me, to keep me safe. But no-one came. (Yes, I know they say we don't remember that far back, but I do believe such intense emotions can stay in memory.)

I dread to think what happens next, but I was too emotionally exhausted to be able to reject the pain when it flared around 6, so I had to take top-up pills instead. Now I feel totally stoned, the pain is fighting back and God knows what my psyche will come up with next.

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Monday, 25 July 2011


There was something on TV this evening about self-harm (cutting), and it reminded me.

All the times I've lain here thinking about suicide. The most common scenario I come to always involves a big knife and arterial bloodflow. You know this - I've mentioned it plenty of times before.

But what I haven't mentioned is the fact that every time, as I decide against the wrist slitting, I move on to fantasies of practising. Carving into my arms, just to see how tough the skin would be, how difficult it would be to hit the artery, how it would look and feel as the blood started to flow.

The urge to do it is as strong as the one to end it all. What stops me is partly the fear that I would enjoy it too much, and become addicted. Even more, though, is the suspicion that that first cut would be so simple, so easy, so lacking in fuss or consequence, that I would see no reason not to just keep on going. And suddenly, that would be that.

2.30am. Three hours of crazy hallucinations. That was a lot of morphine; it did knock the pain down but it left me floating around in a sea of bizarro-weirdness. It's wearing off now, but hope that doesn't mean the pain will be back - really don't want to take any more mind-spinners.
Pain is flaring badly. It kicked off about half eight so I took 10mg of top-up morphine. That sorted it, till just now - it's gone crazy. I can't breathe. Just taken 15mg top-up, and the 30mg slow release should start to work within the next half hour. Please let that all work.

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Just nearly passed out on the way to the loo.

It was kind of a headrush gone wrong - I got up from watching TV all OK, got almost to the bathroom door and was suddenly so lightheaded I had to drop to the floor before I fell. And then I was too dizzy to get up.

Not sure what that was all about. It was too long after standing up to just be a normal headrush, so I'm assuming it was from the morphine I took an hour earlier, so it was just kicking in (slow release, 10mg). Not nice though.

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Sunday, 24 July 2011


I miss work.

I don't feel anywhere near well enough to go back, especially after what happened this morning when I overdid it, but I do miss work.

I miss doing something productive, having a purpose. I miss dressing up nicely, getting out of the house. I miss seeing people. I miss being able to stay up all day without needing several hours of rest.

I miss being a normal person. I want my life back.

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So so incredibly tired. I feel like I could just die from tiredness.

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Shit shit shit shit shit.

I'm a fucking idiot.

I was feeling OK, the 'fuck the pain' approach had worked well yesterday and so today, I decided to do a few jobs that had been backing up for a while.

Because several of those jobs required a short drive, and the morphine has been making me too stoned for that, I pushed back the second dose of the day, so I could drive safely.

I'd done the other jobs first, was feeling OK and so I set off. Stupid stupid stupid. I should have rested a bit to see what the pain levels actually were. Instead, I let the adrenalin of success carry me along.

I got through the drive and the jobs OK, but was in quite a bit of pain by the time I got home. And it's got worse and worse, despite taking the missing slow release pill and a top-up dose. I'm now stuck in bed, in agony.

It turns out the 'fuck the pain' approach is no use whatsoever once the pain has flared.

I'm a fucking idiot.

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Did I mention I'm not sleeping again? I'm not sleeping again. Sigh.

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Saturday, 23 July 2011

Fuck the pain!

I'm trialling a new approach to pain management that I stumbled across yesterday.

I was so sick of the endless pain and huge morphine quantities that I just started swearing at the pain. Telling it exactly what I thought of it and how vanishingly unimportant I thought it was.

The unexpected result was the pain went down. So after that, every time the pain spiked, I told it to 'fuck off!'. I was on double slow release pills all day because it had been so bad the last few days, but I managed to avoid any top ups (until midnight, when I found I couldn't go to sleep and control the pain all at the same time).

Today I've been on single doses without top ups, but lots of swearing, expletives and having a proper go at the pain.

I've been figuring out why it might be working, and I have some conclusions. I don't want to put them up here yet, I want to roadtest it properly first, but I think it's linked to the theories in the book my friend gave me, about chronic pain being based in childhood trauma.

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Friday, 22 July 2011

I want my life back.

But I don't know how to get it. I think it's gone for good.

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Thursday, 21 July 2011

A whole day spent considering one suicide plan after another. I decided to wait till tomorrow, to see if things are as bad as they've been today. The pain has been so awful, and it's taken so much morphine to get it under control, that the thought of carrying on beyond that has been unbearable.

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Extra bad pain today. I'm doubled up on all meds and I can just about breathe lying down. But that's all.

I want to die so badly.

4.30. The pain is breaking through no matter what I take. I have had enough.

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Wednesday, 20 July 2011

Doctor fallout

So, the depression is a lot worse since that visit to the doctor last week.

His constant pointing out that the morphine can't go on forever but failure to offer any alternative has left me feeling far more hopeless than I did before. I keep just dissolving into heartbroken tears over my situation. What had seemed semi-manageable before, now seems completely insurmountable.

The stuff about my dad was faded a little into the background behind that, but still jumps out at me and reduces me to tears. My doll hasn't been able to go back away yet.

The pain is worse, mostly because of the fear of using the medication the doctor has left me with, plus the knock-on effect from all the upset and crying.

I'm taking more slow release pills, spread out through the day, to try and limit total morphine intake. The only way this will hold back the pain without top-ups though, is if I stay in bed. Since I'm scared to top-up, I'm now not just house-bound, but often bed-bound.

If I want to actually 'do' anything - using the laptop, or cleaning out the chins for example - that invariably leads to having no choice but to take top-up pills.

If the pain is already breaking through when I'm due to take a slow release pill, I generally double up, to try and keep it to just 10mg extra (one slow release pill), instead of maybe 10mg top-ups every three or four hours.

I got through the day today doing that, till a difficult phone call this evening. By the end of it, I felt so bullied and got at that I wanted to cry. The pain immediately flared and I had to double up and top-up, and even so, I'm still trapped in my chair, unable to move.

I hope the doctor is really proud of himself.

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Sunday, 17 July 2011

It's difficult to describe the wierdness of today.

After such a traumatic night, the depression has been so bad that I haven't even been able to drag myself out of bed.

I've spent the entire day hiding under the covers, cradling my childhood doll, crying. All I've managed to eat is a couple of bowls of cereal. I've looked in at the chins once or twice, but haven't said a word to them. I just couldn't raise the energy or the interest; they're probably pretty confused.

The thought of sitting up, doing anything or in any way engaging with the world has just been abhorrent to me. I've taken the necessary medication (no top ups, unlike yesterday, where I ended up needing several in the evening). The pain's been coming and going all day, but I haven't even been able to care about that.

My doll last night was just a comfort and something good from my childhood. Today he became kind of a representation of the child-me and I held him the way noone ever held me. I couldn't put him down even for a second, because I'd be washed over with feelings of abandonment and loss just at the thought of it.

I feel slightly better now, though I still can't be bothered to do anything about the growling stomach, and I'm going to have to force myself to get up and feed the chins (it's not their fault, after all).

God knows what tonight will bring, or how tomorrow will be. I feel like I can't cry anymore, and I wish I could. If there was a 'disappear' button, I'd press it.

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Saturday, 16 July 2011

[Warning - graphic, sickening content]

So lonely. So sad.

Why is it that other people get to have husbands and partners and families. What did I do wrong?

I don't want to be by myself anymore.

And I'm too scared to turn out the light and try and sleep. What if what happened last night happens again?

This is all too much. I can't do it. Please please please make it stop. Make it all go away.

My dad raped me, my mum abandoned me and my shoulder hurts. I can't live with this.


It's like I'm knowing this for the first time and I can't stop crying and it really hurts my shoulder. What am I going to do?

Why? Why did he do this to me? Why? I didn't deserve that? I was a child!

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The pain's been OK so far today- no top-ups yet - but I still feel like shit, from last night and from this past week.

I feel miserable and alone. I don't know what to say or do. I can't even cry.

I can't even enjoy a good day anymore, because I know it means nothing - things will be shit again tomorrow.

I hate the inbetweenness of my condition. It's not 'serious' as in life threatening, but it ruins life nontheless. It's not fair.

I feel like all this is somehow all my fault. Because I didn't try hard enough at the beginning or something. Because the pain in some way filled some previously unrecognized psychological need. So I didn't fight it as hard as I should have. And it just got worse and worse, compounded and compounded until there's just no coming back.

I never wanted any of this, I swear. Please take it back. Please.

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After the really difficult conversation on Thursday, my sister and I chatted about nicer stuff.

One of the topics was her daughter's school report. It was glowing, showing how bright she is, how hard she works and how much she likes to learn.

My sis was naturally very proud, but she said, as she has before 'she doesn't get it from me [or her dad] - that comes from her aunty'.

It's true she's always been very book-y, she loves learning, wants to know other languages and asks endless questions. Very like me.

I remember sitting in the garden with them a couple of years ago. We were chatting, she was asking questions and I was telling her all sorts of things I thought she would find interesting. She suddenly turned round and said 'Aunty, do you know everything?'. We collapsed in fits of laughter and my sister said 'she's's never asked me that!'. I felt so pleased.

Talking about how clever she is on Thursday though, hearing about all the things she's going to be doing in the future, made me realise just how much I want to be around to see her fulfill all that potential. It made me cry yet again at the thought of what's to come, the unfairness of it all, and the depressing lack of options available to me.

If the events of this morning mean there is some possibility of an alternative, if it means even the vaguest chance of something more than a pathetic six years of enjoyable life. Well, that would be incredible.

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[Warning - this post contains graphic content]

At 4am I screamed myself awake in full-on terror. It was nothing like any of the times I've woken up screaming before, and I sense it was hugely significant.

The first difference from those other times is that I was fast asleep and had been for hours. I was dreaming, nothing scary, though I can't remember what. Then suddenly I sensed somebody lunging at me, full of the most mind-blowing hatred. They wanted to kill me because they hated me more than I can imagine anyone hating anything. My eyes jerked open, expecting to see a face leaning over me, and instead there was a descending square of blackness with light around the edges, like a pillow was being brought down on my face, like the way the blackness exploded when the other car hit me. All I could think of was images of my father abusing me, coupled with awareness of all the years of pain since the accident, the horror of the past few days' betrayal by my doctor and abandonment by my consultant - the only two male authority figures I actually trusted - and their use of morphine as a weapon against me, plus imminent suffocation.

It was two or three years ago that I started remembering my father trying to suffocate me with a cushion as a baby, but that was just intellectual memory - this time I was actually reliving it.

I drew parellels then between the cushion pressing down on my face and the impact of the airbag during the accident and my father pushing down on my chest to hold me down as a child.

I lay there too terrified to move for 15 minutes, sweating like a pig. The pain exploded, subsided and rose again like a wave. I could feel my father's presence in the room, and I could taste him. I could feel him in my mouth (and sorry, but yes, that does mean what it sounds like - my father forcing me to have oral sex at five years old).

I have a horrible, horrible feeling all this is an indication that that new book I couldn't cope with was right, that all the pain stems from my abuse, and the only way to stop it is to deal with that. But last time I tried, it left me sobbing every night and terrified of my own flat.

But all the memories and sensations are swirling around with the pain and with the messages from that book, plus the awful out-of-control feeling the morphine gives, which has always felt so reminiscent of the powerlessness I felt as an abused child. And of course there's the way the morphine has always opened doorways into my subconsious.

It's like my mind has shoved all the relevant factors into a pot, jumbled it all together and then taken the lid off so I can see the connections. As though all the stuff this week happened just to paint me a picture.

I'm afraid I do believe in that kind of hippy shit. Several key moments in my life have followed highly symbolic dreams, and those dreams have a very particular feel to them: just like this.

But if the answer is that I have to come off the morphine in order to deal with the suppressed emotions about the abuse ... I don't think I have the strength.

Or maybe the message is to let the dice fall where they may over morphine availability - stop stressing about it and trying to control it. And if the doctors do stop it, or limit it to the point that it becomes ineffectual, then rather than going straight to suicide, take one final shot at resolving the pain by dealing with the emotions.

It's the kind of solution that fits with how these symbolic dreams have worked in the past, it ties in with everything that came out of the hypnotherapy several years ago. And it fits with what I realised talking to my sister the other day, that I don't want to die - I just want to be pain-free.

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Friday, 15 July 2011


I managed to sleep last night, for the first time in weeks.

I'd spent the whole day in bed because the pain was so bad. The new drug regime knocked me flat for the whole afternoon. I ended up having to take another top-up dose late last night, but that still meant it was a lower-morphine-intake day than the previous one.

I think the other reason I managed to sleep was that I had a very frank conversation with my sister.

She has always steered clear of wanting to know how I see this all panning out, but this past week had made me feel very strongly that there was stuff she should know. I felt it would be much harder for her when it came to it, if she didn't. So I really wanted to talk to her.

It was difficult though - I didn't want to foist information on her that she wasn't ready for, but I felt like I was lying to one of the people I love the most, simply by not telling her.

So I worked out a gentle way to ask just how out of the loop she really wanted to be. It turned out she'd been thinking about this too, she had questions but wasn't sure she wanted to talk to me about it; she had bee thinking of talking to my best friend about it.

Once I'd started asking, though, she said she had to know now, so we talked. It was a very honest conversation - I told her all that's happened this week and the time frame I feel it leaves me with.

My sister was lovely about it. She hated what I was saying, she said she wanted to shout and scream at me, but couldn't because she understood. I desperately wanted to be able to say 'don't worry, it's fine, it won't really happen', but I couldn't do that, because it wasn't true.

We talked through all the recent medical appointments, the things I've been trying, the medication, what's worked and what hasn't. I told her very frankly about how much I've lost since the accident and what I wanted to have been doing at this point in my life.

We talked for a good hour, then managed to move on to lighter topics. It ended with quite a cheery chat and actually a bit of laughter.

I felt so much lighter after talking to my sister. It was like the weight of keeping a huge part of my reality from her had finally been lifted. I was worried this morning that all that was at the expense of her having a shit time, but she says she's OK. I hope she is.

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Thursday, 14 July 2011

I only managed to stay sitting up for another hour before the pain got too bad; I tried lying down in the mother ship, but it wasn't flat enough, so I had to go to bed.

I was due to take a double slow release dose at 2.30 - that knocked me over completely (to the extent that I've only just got up).

I've adjusted to single doses throughout the day tomorrow, in the hope that it'll control the pain without flattening me.

The reality today, though, is that even knocked out as I was, I could still feel the pain after about 90mins. But because I could go to sleep, it didn't matter too much. If I'd needed to sit up though, I'd have been screwed.

Anyway, so far I've only taken two quick release pills (shortly after my last post), which - if it stays that way - means my total intake will be 40mg less than yesterday's.

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I started the new pill regime this morning.

The pain kicked off at 8.30 - very early and suggesting a really bad pain day to come. I'd woken and taken the first pill at 5am, so it was breaking through very early.

As it happened, I was still feeling so shit and depressed about yesterday that I couldn't even bear to get out of bed. So I stayed there till 10, when I took the second slow release pill of the day, then I got up.

The bad pain has currently eased and I'm sitting up. I just want to cry though. I think the last few days have really set me back. I can't bear the thought of doing anything or seeing anyone. I just want to disappear.

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My Father. Part one

Some memories of him:

Punching you in the thigh whilst he was driving (you were in the passenger seat) to give you a 'dead leg'.

Being forced to watch his clothes catch fire whilst welding, without flinching and moving the welding plate you were holding. Being screamed at if you did flinch.

Having to make his lunch, and risking it being thrown at you if it was wrong.

Being constantly 'whipped' with a tea towel while he screamed with laughter and you screamed with pain and fear.

Being tickled till you though you would suffocate from screaming for him to stop.

Being told you were too stupid to be his daughter, for asking a simple question.

Being told 'but it's not an A', no matter how hard you worked at school.

Being pinned into a robot costume where you couldn't breathe, move or walk, so he could win the fancy dress prize.

Lying in bed, hearing the backdoor, then their voices; straining to hear your name, dreading the lounge door opening.

Hearing his footsteps climbing the stairs to come in and hit you for whatever you'd done wrong that day.

Eating Sunday tea, watching him scoff all the nice stuff while you got the dregs (proper Malt Loaf vs Mum's hideous facsimile of it, Jaffa Cakes vs plain Digestives).

Getting the blame from her when he lost his temper, just for being in the room.

Waiting 2 hours for him to remember to pick you up from horse riding.

Wishing he'd go to a parent's evening or a school play, like some dads did.

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Maybe I should just take all the pills they gave me today. It seems a bit too imprecise, though - knowing my luck, I'd just wind up getting a really good week's sleep.

And anyway, I think I prefer the finality of the cut wrist; it's not like you can shove all that blood back in there, after all.

I remember a line in one of those dreadful American teenaged-angst movies (which I saw long after leaving my teens behind), that if you're really serious about slitting your wrists, you do it along the artery, not across it. That always struck me as pretty impossible - how do you trace something so narrow, and cut into it? Up until recently, I didn't even know which blood vessel in my wrist was the artery, never mind being able to trace it anywhere.

I worked out which was which a few months ago, and last night I realised that if you get the light right, you can actually trace it quite easily.

I still think several arteries might be a better bet, unless you actually have a scalpel to work with. And since I'm thinking more in terms of a bread knife, there's bound to be a certain lack of precision.

Christ, I sound like some angst-ridden teenager's diary. I must be a slow starter; my diary was all 'Watched Miami Vice, in love with Don Johnson' and 'Went shopping, bought a top from C&A'. I never really did the 'angst' thing (though I had the sullen, I-hate-the-world thing down OK).

My sister threatened suicide on several occasions, and even tried it once. I told my parents she was in trouble, but they just sent me away. I think they thought she was too much of a mouse to ever try anything like that. Yet another indication of the fucked up nature of my family.

At least for me, today, writing that all out is enough. So no, I'm not going from here to the cutlery drawer. Not right now anyway.

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I'm not good with let-downs and betrayal.

It comes from suffering the ultimate let-down/betrayal scenario - a father who rapes you and a mother who lets him.

I trusted my doctor, I thought he was on my side. Now I feel completely betrayed by him.

He knows me, he's supposed to stand up for me, but he quite clearly simply caved to the idea that I must be a junkie abusing my meds, just because I got upset at the prospect of being without them. He, of all people, should have understood it was fear of the pain driving my reaction, not fear of losing some high.

But he just went along with it. I've never done anything to deserve that and he was the one a couple of months ago telling me off for not taking pills when I needed them.

Now I feel even more alone than I did before. I can't bear the uncertainty of three weeks till I next see him, wondering if he'll be like that again or go back to normal. Will he just decide to cut me off? How will I ever trust him again after this?

I had two medical people I trusted. Now one's betrayed me and one's leaving.

And I can't sleep because I can't stop crying. Every time you think you couldn't be any more alone, it turns out you can. Never mind how to get through the night, how do I get through the next ten minutes?

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Wednesday, 13 July 2011

I may not be feeling panicked, but I am sitting here enduring pain because I'm too scared to take any more pain medication.

Is this the way it's going to be? Am I going to spend more and more time in pain because I'm too scared to take the pills, even though I've got them? If so, it's not really worth it is it.

So, extended period in a lot of pain or shorter period in less pain (or so out of it that I don't care) and then that's it.

It seems that's what it comes down to now.

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Knowing I've got several weeks' of medication, that there's no worry of trying to get over to the doctor's or the chemist, I feel so much better. The underlying sense of panic has gone. I know that if the pain kicks off, I have medication here to deal with it. I wish it would last forever, so I never have to go through that again.

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Pill schedule

This will be the new schedule of medication to try and reduce the amount of quick release pills by bringing the slow release ones closer together to reduce break-through pain:

6am OxyContin 20mg

9am breakfast

10am OxyContin 10mg

11.30am Lofepramine

1pm lunch

2.30pm OxyContin 10mg

4pm Lofepramine

5.30pm dinner

7pm OxyContin 10mg

8.30pm Lofepramine

10.30pm OxyContin 20mg


Clearly, the medical profession has now given up on me:

* the doctor is no longer supportive of the meds I need
* the consultant is leaving the Pain Clinic and long-term patients like me are being downgraded to only being allowed to see a nurse
* the psychologist wants me off her books.

There's clearly no hope left, or they wouldn't be giving up. So all that crap about keeping going till something comes up is just that - crap. I have already said I will not do this without pain medication. So I guess that's the time frame.

When the amount of morphine they will allow me becomes not enough to hold back the pain, then I'm out of here. If he will continue to give me what he gave me today, that probably gives me a few months. If I get to the next appointment and he says no, well, I won't need to worry about that medical report for the insurance claim.


Unbelievable day, I'm still in shock, and it raises a number of questions.

Unsurprisingly, the replacement prescription hadn't arrived, and the Tesco pharmacist could not have given less of a shit. I was feeling able to drive this morning, so I called the doc and asked if he would give me a new prescription, even though there was one outstanding somewhere in the post. He said yes, and seemed completely unmoved by my pointing out how much upset this had caused over the past three days, the terror of facing this pain with no pills. He claimed the pharmacist shouldn't have rejected the original script.

So they're blaming each other, and I'm stuck in the middle. I tend to think the doc was at fault; there's a dispensary at the surgery and I think he's so used to being able to put any old shit on the orders because they're going direct to a pharmacist, that he's out of touch with what's required externally. That's the first bit of disappointing news about him today, and by far the most minor.

I drove straight over there to get the script, well, once I'd stopped crying, which meant I got there after surgery had finished and he was off duty. Initially the script looked fine, but as I was driving away, I realised I hadn't checked the quantities, and then discovered that he'd halved the OxyNorm (quick release), so I only had two weeks' worth. Since they now won't post a script, that was no good, so I went back, relieved I'd spotted the error before I got too far away.

He agreed to see me, then stunned me by telling me it was too much morphine, and I couldn't keep on just increasing it all the time. I couldn't believe it. That's exactly the opposite of what he said last time.

I pointed that out, and said that I'd happily not take it, if someone could come up with a viable alternative. He just kept repeating 'it's an awful lot of morphine', 'we can't keep on increasing and increasing it'. He told me that keeping on increasing it wouldn't necessarily help; that the pain wouldn't be any better with increased levels.

I was speechless. I said 'that's complete rubbish, of course it's better, that's why I take it. Days like yesterday, where two pills were no good and I had to take three and that stopped it for a couple of hours; it made it better.'

Over and over, we went round in circles. Him saying it's too much, me demanding an alternative, him just sitting there and staring at me. I was in floods of tears and yelling at him, but still he had no alternative to offer. I said 'What do you expect me to do when the pain gets bad, just sit there and scream?'. He had no answer.

I told him that everyone's so focused on keeping the wrong people from taking morphine, or taking it for the wrong reasons, that they forget there's a patient behind there, someone who actually needs the medication. I said I didn't understand how he could have been so understanding last time and now just refuse to understand. I said 'I can't believe I'm having to have this conversation with you of all people' and 'I spend half my life in agony and the other half having to prove I'm in pain'.

I couldn't understand why the sudden u-turn, why he's suddenly so unwilling to understand something that a week ago he seemed to get. Why he seems to have completely misread my freak out over the prescription cock-up. He kept talking about yes. it would be horrid if I was left with no pills because of the withdrawal. I kept saying never mind the withdrawal, it's the pain I'm terrified off. But he just wouldn't get that - he was fixated on withdrawal.

I think they misread my freak out as being a junkie wanting their pills. All I want is to be pain-free. All I'm scared of is what the pain will be like without the pills, given what it's like with them. I also think that the cock-up brought me to the wider attention of the surgery, and this is 'medicine by committee'.

He was completely fucking useless. He's now no better than me, chasing my tail for answers and coming up blank. But when he does it, it affects my life.

Eventually I managed to convince him to give me a post dated script for the other half of the pills. I also said I'd be happy to take more slow release to reduce the quick release, if he thought that was better, but I pointed out that the reality is that these '12-hour' pills last at most 5 hours; after that you have to do something or the pain becomes unbearable.

He agreed to that, and next time I'll suggest a higher denomination of pill, so I'm not taking physically as many pills. But he's left me terrified that each time I see him, I'm going to have to fight him for the meds I need. I told him that. Surprise, surprise, he made no response.

Tuesday, 12 July 2011

I have enough morphine to last till Sunday.

The truth is, though, that right now I don't know how I'll feel if the prescription does come through and get filled tomorrow. Will I look at it and think 'OK, there's another month sorted'? Or will there be a sense of disappointment? Maybe that's the acid test.

You see, I think I'm nearly there. If the script comes through and I feel relief - as I would've expected before all this happened yesterday - then I'll know I'm not. But if it comes through and I feel let down, disappointed, robbed of an escape route, well maybe that means something different. If all I can feel is the weight of another month, then maybe it's time.

All I know is that all day I've been feeling more and more at ease with the idea of an endpoint.

10.30 Maybe I'm feeling this way to protect myself from the terror of facing the pain without meds. I can feel the fear crowding in right now; if I really was ready to go, surely I wouldn't feel that way?

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On this particular day and at this particular time, three OxyNorm pills equals absolute heaven.

It'll change, I know that, but right now it's heaven. And I'll take what I can get.

6.30 Well, it didn't just 'change', it exploded. I managed 30 minutes out of bed. 30 minutes. And now I'm back in bed, paralysed by pain.

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Monday, 11 July 2011

The terror I feel at having so liitle morphine left and no access to more is exactly what it would be like on that new drug and proves once and for all I'm right not to try it.

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Don't I matter?

So much focus on stopping people abusing the morphine. Making sure they don't take too much. Stopping them taking it for fun. Making sure they don't kill themselves.

But what about the people who genuinely need the stuff? Not taking it for fun, not trying to top themselves. Just trying to get through the day. You're so busy stopping everyone else getting it, you stop me. And if I have to face that pain with no hope of relief, that WILL lead to suicide.

You do know there are other ways to kill yourself? You do know that some of us are actually in pain? I don't take this shit for fun you know. It's not a laugh to me, it's not some big joke. It's my fucking life.

You have NO FUCKING IDEA what it's like to live with this pain. You think it's no big deal to 'pop' back to the surgery and get a new prescription. Do you know what it took to get the few-hundred-yards to the pharmacy? Do you have any idea of the effort it takes just to get down the stairs? Just to get out of bed?

I can see the knife when I close my eyes. I can feel the serrations. I can imagine the feel of it slicing through my skin. The sight of the blood pooling around me. The pain would stop. All of it would stop. I wouldn't have to be afraid of the pain any more.

The only reason I didn't do it this morning?I couldn't face writing the note. What a fucking joke. The suicide - no problem. But writing the note - that's what I couldn't do.

I want the people I love to know why, I don't want them left racked with questions. And without a note, they would be. I want them to know that the final straw was all those people so desperate to protect the masses from abusing morphine, that they were willing to abandon me to the pain. Just like how I get no help, no support, barely any compensation just because other people put pain on to get something for nothing.

I'm an honest hard-working person who gets consistently screwed over because of other people's dishonesty and lack of morals. Not only do I live in the hell of constant pain, but I have to keep proving it over and over, just to get the tiniest, most begrudging bit of help.

I hope when I'm gone someone publishes this blog, so the world can get a look at how totally fucked up it really is.

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On top of screwing up the medical report, the doctor has now fucked up my prescription so I will have no pain relief.


I've come within a hairsbreadth of slitting my wrists over this today. Trust me, if I am left with pain relief - THAT'S IT. I'M NOT FUCKING DOING THIS WITHOUT PAIN RELIEF AND I DON'T GIVE A FLYING FUCK WHAT ANYONE ELSE THINKS. YOU'RE NOT LIVING IT.

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Sunday, 10 July 2011

The key point to make about today is the fact that a day stuck in bed unable to sit up now falls into the category of 'reasonable' if the meds allow me to lie there in relative comfort.

Not so long ago, a day in bed due to pain would've been considered a particularly bad one; now, as long as I can lie there, speak, breathe etc without needing extra pain relief, it's a reasonable day.

Do you have any idea how scary that truth is?

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Lovely visit from my sister and her kids today.

It started out as a fairly reasonable pain day - I couldn't sit up, but lying down, doped up on morphine I was able to chat and watch the kids OK. Around mid-afternoon, though, the pain started to flare and I had a terrible couple of hours waiting for it to be time to take more morphine, then waiting for it to take effect.

My sis had taken the kids to the park at that point, to give me a chance to rest, so most of this awful period was spent by myself, desperately wishing they'd hurry up and get back , so they could take my mind off it.

Earlier, though L had gone to get a couple of bits from Tesco; she took my nephew with her, but left my six-year-old neice with me. We had a lovely time lying side-by-side doing puzzles and colouring-in, chatting. We talked about the vagaries of being a big sister, her new house, her visits to daddy and all sorts of other stuff. It was lovely - I felt really connected, and it was exactly the sort of thing I was longing for yesterday.

The kids were fine with me being stuck in bed all day, and I did manage to briefly take them in to see the chinchillas, before it all went tits up.

When they got back from the park though. I was curled up in agony waiting for the triple dose of morphine to kick in so that I could speak again. They went off to watch a DVD, which gave L and I a chance to talk. Except I kept getting maudlin and going on about how bad things are, how screwed I am, and how hopeless the outlook is. L didn't really know what to say, so she unsubtly - but effectively - kept steering me back on to more cheery topics.

It worked, and by the time they left, I was even able to get up and give them all a hug. I just wish we could do it all again, very soon.

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Saturday, 9 July 2011

Kooky aunty?

I always wanted to be the kind of kooky, eccentric aunty that my neices and nephews could come to about things they couldn't discuss with their parents. The aunty who just 'gets' things in a way that parents never do.

It's one of the reasons I decided to settle in the UK when I finished my studies, instead of returning to South America or Spain. So I could be nearby.

But how am I going to do that now? I can't get to them. I might as well be in another country for how accessible I am to them.

I can't babysit, I can't take them places. I wanted to be able to take them swimming, have them stay over for the weekend, do all those cool fun things that aunties do. Instead, I barely get to see them, and when I do, they spend their whole time being told to be careful, get off, mind aunty's poorly shoulder, and be quiet because aunty's sleeping. I'm like a piece of glass - look but don't touch.

That's not what I wanted. That was never what I wanted.

My sister says I have to hang around because the kids will need me, but what bloody good am I to them like this?

Apparently my neice has been asking to see me for ages, so they're coming over tomorrow. I'm really excited, but i've been stuck in bed for days, so it'll be a bloody boring visit for them. I don't understand why she even wants to come - I'm no bloody fun.

I remember the last time I saw her before the accident. She was three and we played in the bouncy castle. She'd try to escape and I would catch her and 'throw' her against the bouncy walls. She loved it and so did I. I want to go back to that.

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Eye watering agony down the left-hand-side of my back - can't breathe, and it's spreading. Shit. I'm scared.

3am. Excruciating pain. More pills. There are no words.

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Friday, 8 July 2011

Actually managed to sit up for most of the day today. Still taken a lot of morphine, but it hasn't flattened me as much as the last two days. And the neck pressure has eased a bit. I even managed to do a couple of jobs - wash up, go to the post box.

But still, as I lie here ready to try sleeping, I feel miserable. And guilty. And angry. Guilty over the nurse visit that hasn't happened yet and the doctor's fucked up medical report. Angry that my efforts to find a replacement for the shrink failed because nobody bloody listens (and why am I having to do the investigating anyway?). Miserable over everything, the unending-ness. I keep thinking 'I'll just wait till after my sister's been on Sunday'. But I know I'll get to Sunday night and not do it.

I'll just keep trudging along because I'm genetically incapable of quitting. The stubborn determination and persistance that got me through an abusive, neglectful childhood now deny me the relief I deserve. What once was an asset of personality has become a liability, forcing me to stay here, living an existence that I wouldn't foist on my worst enemy.

It's like when I wanted to leave my phd programme; I knew that was what I wanted, I knew it was best for me, but still my drive for approval was so strong that I couldn't give up. Finally, I managed to convince myself that me wanting something was justification enough - that I had the right to give myself what I wanted. I just need to realise that again, so I can finally, gratefully go.

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Fobbed off

Four years. Apparently that's how long you're allowed to be sick in this country before the medical profession consigns you to the trash heap.

The pyschologist has spent the past few appointments basically trying to get me off her service. It's disguised under 'there's nothing more I can do for you', but the net result is to do everything possible to get rid of me, And that's egardless of whether the suggested alternative is appropriate - for example, trying to force me into four-hour-long group therapy sessions, when I struggle to sit for an hour and have clearly shown that a group setting is useless.

And now I discover the Pain Clinic are trying to fob me off with nurse-led appoinments, because apparently I'm too much of a lost cause to merit an actual consultant with my specialist.

They're closed today, so I can't talk to anyone, but if they think for a second that in going to stand for that, they can bloody well think again.

Just because an illness is chronic doesn't make it any less important. It doesn't make me any less worthy of help, advice or treatment.

I am sick to death of bring treated like a second class fucking citizen, just because my illness isn't sexy or exciting or life-threatening. It's life-destroying, and I have a bloody right to treatment.

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Thursday, 7 July 2011

Tried some nice chicken for tea, with a spicy dipping sauce and some nice bread. It should've been lovely, but I could barely manage a few mouthfuls.

I've got no appetite, and I feel sick whenever I eat anything. I can only imagine it's because of the amount of morphine I'm taking at the moment, and the fact that it's having such a devastating effect in me.

Every pill I take at the moment completely flattens me. I can't stay awake. But even with the pills, the pain is so bad I can't sit up. Without it, I don't know what I'd be like.

I'm so out of it that I can't walk in a straight line. I can't drive, but I can't walk either. I can't get to the post box, I can't get to the chemist. I'm completely trapped. My whole world now comes down to a bedroom. 22 hours a day that's all I see. Everyone else has people and lives and choices. I'm all own my own. Forever.

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I'm supposed to be eating now - based on the strict food-Lofepramine-Oxycontin schedule I have to follow, day in, day out.

But the lunchtime slow release pills and the subsequent quick release ones are just kicking in, and I feel relaxed for the first time todau.

I'm not at all hungry and I have no incentive to ruin the pleasant relaxed feeling: food can wait.

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Another phone meeting with Personnel where I revealed myself to be a complete fucking headcase.

It was a simple catchup meeting but still I wound up in floods of tears. It started with discussion of the nurse meeting to come, then a general chat about how I'm coping.

It was all just too much, going over how tough even the simplest of things is. And how terribly terribly alone I feel in all this.

Can't write any more, it's making me cry all over again.

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I'm so sick of writing the same thing on here over and over again. And you must be so sick of reading it.

I wish i coukd write something positive. Ot just something other than 'i want to die'. Its such a cliche, it all sounds so teenage (not that i went through all that as a teenager). It's just that the news is always bad. And it does make me hate living.

But I keep saying it over and over; just get on with it, for crying out loud. Either do something about it it quit whingeing. It's the same when people complain about their relationships or their jobs. Though I guess suicide is a bit more permanent than leaving a bad marriage or getting a new job.

But seriously, what am I going to do? What's keeping me here? Why can't I just get on and do it? I want to. But apparently not enough, or I would've done it already. It's just that I don't want to live like this.

Somebody please help me. I can't do this all by myself.

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No surprise, I guess, after the day I've had, that I'm lying here, unable to sleep.

No surprise, but no less annoying for it.

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Wednesday, 6 July 2011


I'm scared and I want to cry.

Apparently I have to talk to some nurse from the insurance company. I'm sure it's just standard operating procedure, but it makes me feel got at and guilty, like they think I'm putting it all on. Which of course I'm not.

I know it's probably all part of those guilt feelings I keep getting from the morphine. It's flattened me today; I had to take three quick release pills mid-morning and a double slow release at lunchtime. Both of them sent me to sleep and I still feel really drugged now. I've taken more than that in the past, and it hasn't reacted that way. It just seems to be about body chemistry on the day.

Logically, i'm sure there's nothing to worry about with this nurse, but it still scares me. The idea of having to talk through the horrors of the past few months with some stranger. Having to feel all of that all over again. And it'll be so embarrasing; I'll be in floods of tears, I know I will, If it's a phone meeting, it'll be awful, they won't be able to make out a word I'm saying, and they don't know me, why should they sympathise?

And if it's a home visit, there's the same embarrassment, in person, added to the likelihood of being confined to bed at the time. What if it's a male nurse? There's no way I could let him in to my bedroom.

I'm terrified, I don't think I can do it.

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No brainer

I woke up at 5am with raging neck pressure and associated headache. I managed to find a position that eased it eventually, and had to just lie there for hours waiting for it to ease.

It finally did, but moving wrong while having breakfast set it off again. I've been stuck in bed ever since, out of my head on morphine.

It proves i'm right about not trying the new drug - my only option in these situations is to drug myself till I don't care about the pain. The new drug has too little opiate content to work that way, so I'd be completely fucked.

There's just no way I could make it through a day like that, and they tend to come in clumps of three or four days. QED, the new drug is a no brainer.

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Tuesday, 5 July 2011

Struggling eith no appetite today. I've been having to force myself to eat all day; not much fun.

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The Abyss

I saw the doctor today. I was OK after the appointment, but now my mood has plummeted.

Depending on how you read it, you could say the appointment went very well or very badly.

* He signed me off for another month
* he told me he's not allowed to post prescriptions for controlled drugs any more, and so gave me a month's worth today
* he was fine about any repercussions from my letters re him stuffing up the medical report
* he had never heard of the new drug the Pain Clinic mentioned, but understood my reluctance to try it
* he agreed there's no point seeing a psychiatrist since they'll only prescribe more pills, and that's the last thing I want and any way 'I don't think you have a psychiatric illness, do you?'
* he gave me a big hug as I left.

The positive side of me wants to think that he understands I can't work, so doesn't put me through having to defend being signed off every time. That he trusts that I'll handle the vast amount of morphine responsibly (which he actually said, and I almost completely agree with). That he's genuinely happy to help with the insurance claim. That he understands how hard it is to try new drugs and respects my decision not to. That he understands how draining it is to keep going over everything with new people, and he knows it's just depression. That he genuinely cares, and thought a hug might help me feel better.

But the negative (and currently winning) side says there's so little chance of me ever getting back to work that he doesn't even bother to ask any more. That there's nothing he can offer for the pain but masses of drugs, so he just hands them out. That he knows my career is over and I'm going to need that insurance money. That he knows nothing will work, so agrees there's no point trying any new drugs. And that I'm in such a shit state and I look so bloody awful that I need hugging.

I know I should go with the positive version, and I know that objectively it is more likely to be the truth. But I feel so utterly crap and dejected and hopeless.

I really did need that hug; though I'd managed for once not to burst into tears, I'd spent the whole appointment on the verge of it. Talking about the new drug, and my major concern, that there's a ceiling on the daily dosage, I said that at least at the moment if things get really really bad, I know I can always take a big dose of morphine, wake up a few hours later and think 'well, at least I didn't have to experience those hours'. It sounds so melodramatic and over the top, but it's true, and the knowledge of that is all that gets me through sometimes. Every time I say it out loud, though, it makes me cry, simply out of relief. Even if I'm not conscious of them at the time, knowing that those few pain-free hours have been there is a huge relief.

I was relieved, too, that he didn't try to push me into trying the new drug. Every drug trial is such hard work, and you always know it's potentially all for naught. But he feels a responsibility to encourage me to explore all avenues, and that can be very pressurizing. I felt the same way over the psychiatrist idea - the last thing I need is to have to go over and over the horrors of my life with someone who thinks the answer to everything is to throw more drugs at it. As if I wasn't out of my face enough! It was nice to hear he doesn't think I have a psychiatric illness, though slightly galling, since I wasn't aware there was even a hint of that.

And then there's that massive prescription. He said there was always the worry of an overdose, when giving out that much, and he asked if I was worried about that. I said 'no, I'm really careful to avoid accidental OD' and that I wasn't thinking of doing it intentionally.

I knew that last bit wasn't really true, I think about it all the time. But I said it because I don't think it'll be yet, and when it does come to it, OD wouldn't be my primary tool. So for now, I guess it's OK. But it felt weird saying it, knowing how much I think about it, and how desperately I want this all to be over.

I'm rambling now. I'm tired and drugged and I want to cry but I can't raise the energy (and anyway it would hurt too much).

It's just this enormous, never-ending, mind-blowing abyss. After four years, I still don't know how to do this. Or why.

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Sunday, 3 July 2011

Very bad night; no sleep, lot of pain, four extra immed-release morphine pills.

The pain has been bad from the get-go today. Managed to hold off till 10 for the first top-up pills, but had to go to bed to let it work. (I do find the morphine works better when I can just relax and doze if necessary.). I'm going to need more pills pretty soon.

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wide awake, in pain, fed up

Had enough

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So much for my good day. It kicked off at 9: took two immediate release pills and it calmed down. Until 12.30am. Took two more but they're not helping.

I'm lying here, in agony, thinking of ways to make it all disappear. Top of my list - an unexpected swan dive halfway through a helicopter sightseeing trip.

One of these days, I'll stop talking and start doing.

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Saturday, 2 July 2011


So far today, I haven't taken any top-up morphine.

I've doubled two of the three slow release doses and it's worked well. I didn't double the lunchtime dose, so that I could still triple the evening one (as per the past week), to try and get me through the night.

I've slept quite a bit today and haven't actually tried to do anything. There have been a few worrying warning twinges of pain, but I've managed to ignore them.

I also did more research into the new drug the pain doc mentioned, and am less certain that the right answer is to stay as I am. I need to mull it over, but when I managed to get on the website and look at the actual trial results, I realised the allowable daily dose is a lot more than I thought, and I'm clearer now on how it actually works.

I found reports of it on a couple of pain forums, and everyone agreed it's no better than what I'm on. But 'everyone' is a bit misleading - the drug is so new, very few people have tried it. All the more because many people - actually, the majority expressing interest in it - are being denied it by their health trust, due to cost.

I think I would need to see some people on my levels of morphine saying it's better, to make me change over. And at the moment, those people are the ones saying it's not worth changing.

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Since pain levels were so bad yesterday and the day before, and I had to take so many pills, I decided to just go ahead and take double slow release morphine at 6am.

As usually happens the first time I double a dose, it knocked me out. I woke up at 10.30am feeling like I'd had a really good sleep.

The pain is already starting to bubble up badly after just half an hour sitting up, and it's going to be a nightmare trying to work the Lofepramine and the rest of the pills in without feeling sick.

But soooo nice to get some sleep.

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Friday, 1 July 2011


I feel overwhelmed by pain and pointlessness today.

I've spent hours trying to sort out the mess that my doctor has made of my insurance claim. The pain is unbearable, I'm taking morphine like Smarties and still I can't move. And I'm still shellshocked from yesterday's Pain Clinic appointment. It just feels like it's all going wrong, all going against me and there's not a damned thing I can do about it.

The doctor messed up the medical report that my insurance claim will depend on, and I've had to spend all afternoon writing letters to fix it. I feel like not only will it mean my insurance is denied, but it will sour my relationship with the doc, and I badly need his support. He'll have to find out what I've said, and it's all true, but what if he takes a dislike to me and gets difficult over prescriptions and sick notes! That terrifies me.

The fact that the pain is so awful right now only adds to that, as does the conversation with the consultant yesterday. He told me that I can keep hiking and hiking the morphine ad infinitum. Or I can try this new drug that offers the same kind of pain relief but with fewer opiates. So, fewer side effects.

Sounds perfect? Except for the fact that you can only take so much a day, and after that, if it's still bad, you have to 'find another option'. Which basically means you're fucked.

Take today for example. The pain went beyond 'normal' before 8am. My only option all day has been to throw morphine at it (which has only been partially effective, because I've had to force myself to stay awake and alert to sort out the doctor's mess). On this new drug, there'd be nothing you could throw at it. Which would mean a day in unbelievable agony, the like of which I can't even contemplate.

I'd never be able to tolerate it; I'd wind up slitting my wrists just to make it stop.

The info on this drug talks about it being tested against less than half the morphine I'm on per day. Which means the chances of it being in any way adequate are almost zero. Which in turn means I have no option other than constantly rising morphine levels.

It all seems so suffocating and deathly. I don't know how to navigate it. How do I keep surviving through all this. I can't. I don't want to. I just want to die.

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Twice today I've tried sitting in a chair and twice I've been overcome by enormous pain.

The first time it took about an hour, the second about 20 minutes. The first time I took three Oxynorm and went to bed, adding an extra Oxycontin an hour later.

I've already taken double Oxycontin and double Oxynorm, so basically I'm fucked for at least another hour. The pain is hideous and unending, I don't know what I'm going to do. I feel like absolute shit and I'm clearly going to be confined for bed. Again.

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