Thursday, 31 March 2011

Despite feeling so much better earlier, trying to go to sleep leaves me feeling worse again.

Like last night, I'm feeling shakey, panicky, breathless, headachey, paranoid and the pain is increasing.

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I can't begin to tell you how much lighter the world feels right now than it's felt for weeks. Not only in colour, but in weight and density too.

It's like I've come up from the depths, and all that crushing pressure has eased. Even the thought of the pain seems bearable all of a sudden. I just hope it stays this way.

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It's supposed to take weeks for Lofepramine to start working, so how come my mood feels so much better tonight?

I always found I noticed a change in the dose of Fluoxetine quite quickly, but this is even faster. Is it just placebo effect, or is it actually helping?

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Still feeling fairly OK. Have got some pain, but am feeling drugged enough not to be that bothered by it. I'm headachey and my stomach's very crampy. I'm quite dizzy and feel pretty out of it. I'm very tired (unsurprisingly, since I got no sleep last night), but all in all, not too bad.

Oh, and I actually feel quite cheerful.

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Brief respite

Right now:
pain is OK
side effects are bearable
I don't feel like crying
just had a lovely tea that a friend put in the freezer for me.

It might only last a few minutes, but a break is a break.

An hour and a half later and I still feel OK!

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Morphine and food

It appears the non-absorption of the morphine is down not only to what the pain consultant calls an 'undercoat' of paracetemol, but to consistent blood sugar levels.

I took a quick release pill today at 11.45am and it had no effect on pain or SEs. To see if it made a difference, I had some lunch at 12.15 and by 1pm, the morphine was working. It has to be because of the food - the morphine never kicks in that way that late.

So now I need to work out whether it's better to eat before or after the pill, and what the time limits are, or whether it makes no difference.

Addendum: Apparently, morphine slows the release of glucose into the blood. Presumably, then, if I eat, then take the morphine straight after (as I've done in the past), my body won't get the glucose from the meal quickly enough, so my blood sugar won't go up. And that will mean I won't get the best benefit from the morphine.

Therefore, the best thing will be not to take them close together. I think if I do it like I did today, the morphine is in my system and then increasing my blood sugar gives it a power boost.

To see if it also works the other way, this evening I had my tea an hour before taking a quick release pill. It's difficult to tell if it's worked though, because the slow release one is at work.

Even if I can't find out, it doesn't necessarily matter because it's much more doable taking a pill and waiting an hour to eat, then eating then waiting for a pill, given that often I can't get to the kitchen without having taken a pill.

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Horrible, horrible night.

Got no sleep, I was dizzy and panicky the whole time, felt sick, itchy, upset stomach, paranoid and just generally really ill.

I hope it was just an initial reaction, otherwise it's going to be no better than the Fluoxetine.

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Wednesday, 30 March 2011

First night on new meds

Feeling very odd.

Lot of adrenalin; panicky, but in a different way to before; shakey; hard to breathe.

I'm scared in a very specific way, like I'm scared I'm going to stop breathing. I'm not having the same terror of some amorphous 'thing' that I did before, but I am really frightened.

I feel very lonely and tearful. The pain is bad, I very feel out of it and out of control. I really wish there was someone here with me, just to convince me I'm not going to disappear in a puff of smoke.

Half an hour later - the panic attacks are back properly. The adrenalin feels very much like 'fight or flight' - I'm ready to run for my life. I also feel a bit sick but I'm also hungry. And I seem to be coming out in a rash.

Don't like this at all.

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I was feeling relatively OK, then I got an email from the Personnel Manager at work, wanting a catch-up.

I know it'll be fine - she's very supportive and sympathetic, and I haven't done anything wrong, but it immediately made me feel really panicked.

I'm scared of her thinking I should be back at work, thinking that I'm not really that sick. But I guess the very fact that I feel so panicked indicates how not-ready I am to go back yet. And the doc seemed to be no doubt. I suppose it's just another symptom.

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Well, I've felt stoned, cross-eyed and shakey all afternoon. It's hard to breathe at the moment. The pain's been bad all day too. The side effects I'm having could be the new meds or the interaction between that and the morphine - have had to take several since lunchtime.

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So far so good. Feel pleasantly stoned, though whether that's the Lofepramine or the morphine, who knows.

Two hours later - bad headache, very tired, spaced out - not so good.

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Took the first Lofepramine at lunchtime. Please God it works, and fast.

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Potential problem

Irritatingly, when I looked at the new anti-depressant, I discovered it contains lactose.

Ever since taking all these meds, lactose makes me nauseous. I guess I'm just going to have to see if I can get away with these pills or not. I think it's worth the risk, because they might work, I'm already take anti-nausea pills for the morphine and being off the Fluoxetine is definitely better, because the awful itching and the hideous panic attacks have all stopped, but I do wish the doc had checked before prescribing it - I've told him repeatedly about the lactose problem.
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Think, people, think!

After standing in line for hours behind an old lady arguing about £2.50 on her till receipt, I was finally able to hand in my prescriptions.

I was desperate to sit down, but as soon as I did, the pharmacist came rushing over, demanding I go to a secret door, because she wanted to see me in private. Of course, I immediately start thinking she's going to say I've had too much morphine, and refuse to fill the prescription, even though it was legit. So, I went and knocked on the secret door - no answer. I waited, tried again, still nothing and I just couldn't stand up any more. So I went back to the counter and pointed out that she couldn't keep me hanging about like that when I clearly have trouble standing (let's face it, the stick gives it away).

Anyway, finally she lets me in, and it turns out our beloved Government now requires pharmacies to do a yearly interview with patients on more than three meds, to check everything's OK.

I understand that with repeat prescriptions, it's easy to just keep taking stuff when you don't necessarily need it, but even when I pointed out that I'd seen my doctor two days ago, she persisted.

She did have a couple of useful bits of advice, so it wasn't entirely wasted time (and she had a very interesting Eastern European accent), but the whole thing did make me feel a bit like a criminal, dragged off to an interview room to prove I really need all that medication.

At the end of it, she gave me my meds (all in stock, for once!) and a 'goodie bag'. Most people would've chucked the lot, but I was quite pleased - it was samples of lactose-free milks (which I buy anyway) and money-off vouchers, plus some Omega 3 tablets that I've been thinking of trying, and a couple of other bits and bobs.

It made up a bit for all the hassle, but I do wish people would think a bit more: here's a woman collecting prescriptions for five different meds, walking with a stick, looking, let's be honest, as rough as a badger's arse - maybe we shouldn't ask her to stand around for ages at a hidden door, while we piss about doing who-knows-what!

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Tuesday, 29 March 2011

Slept most of the morning. Pain is still bad and still feel very very low. Want to cry.

I'm really really scared that I'm never going to get back to work. How can I, when I can't even face getting up? It just feels all over.

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Unsurprisingly, I feel like shit after the night from hell.

And what continues to astonish me, is that people actually do this stuff for fun. How fucking stupid do you have to be?

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Jesus I feel weird.

I had something to eat and took another pill after the last post. For the past half hour, I've been lying here feeling totally bizarre.

It's hard to describe, but i've felt it before, when I was on morphine in 2009. I'm even having the same creepy hallucination.

It must be down to no Fluoxetine, but I don't understand why or how, because I didn't stop taking it back then. I'd have to look at my notes, but they're in the other room, and I don't trust myself standing up right now.

My eyes feel like they're popping out the back of my head; I'm hallucinating about some creepy office scenario; I'm sweating like mad; I'm spaced and dizzy. It's difficult to describe, but the spaceyness is totally different to 'normal'. The all-over itching is missing too. And so far, the fear I'm feeling is completely different to the panic attacks.

All my sensations feel hyperexaggerated. My breathing is really wierd. The world is spinning in a very 3D way. My skin is tingling. I feel like I'm in triple gravity. It's like my perceptions have gone from a standard 'Hollywood' California accent, to broad Mafia New York.

I feel like major revelations are coming any second, like when I tried hypnotherapy whilst on morphine. Ironically, the only thing anchoring me to reality is the pain, which stabs when I move. I'm starting to get some really bad back pain too, which is perversely welcome, just because I know it's real.

It's like my brain is trying to throw up all kinds of shit that's been stuck in my craw for years, about my ex, my dad, the accident. When I comes, it's going to be like vomiting acid.

I think the slow release pill is releasing and that's mixing with the quick release one, without the Flou there to interfere. Why it feels like '09 I don't yet know, unless I took a break to try to figure out the interactions. I really really don't like it tho.

3.15 am. My brain is now mixing together random images - the toys from the TV show Play School (esp Little Ted and Hanbal) being forcibly dragged out of the castle at the end of Romancint The Stone. For which, read innocence stolen by abuse

[not editing this because feel too weird]

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No Fluoxetine

Very bad pain tonight, and can't sleep.

It's my first night without Fluoxetine, so obviously the chemicals in my body are all out of whack.

I've taken three Oxynorm this evening, plus the 20mg slow release Oxycontin, but it's not helping. I don't really want to take any more, but I might have to, to have any chance of sleeping.

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Monday, 28 March 2011


Another awful trip to the doctor.

I'd been doing OK, mood-wise, all day, but as the appointment got closer, I got more and more anxious and tearful. I soo didn't want to go, simply because it meant talking about how things are, facing up to it. I was also worried he'd be difficult about signing me off, mostly because I couldn't think of specific things to say, to show it was necessary.

Fortunately, that wasn't an issue - he signed me off straight away for two more weeks. Apparently, staring at your shoes and being unable to string a sentence together is proof enough.

Bizarrely, the shrink called to talk to him while I was in there, and he said afterwards that she's definitely not just looking for an excuse to discharge me. He agrees that I still really need to be seeing her.

I have to start the new antidepressants tomorrow, but because I haven't had a break between the two, I have to be on the lookout for a serotonin overload. (Both types release serotonin, but in different ways, and apparently, too much is bad - not just feeling uber-happy, as I'd hoped.)

We also decided I'd carry on taking 20mg of the slow release morphine at night, instead of 10, because of the bad pain overnight.

I emailed work when I got home, to let them know the situation, and got a very perfunctory reply back from my boss. I felt quite hurt, because it felt like they didn't need me, yet I know damn well I couldn't work at the moment.

This evening, I'm miserable and tearful and just want to hide under the covers. I have no idea if or when I'll ever get back to work. I'm so fucking messed up at the moment, I bloody hate it!

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Sunday, 27 March 2011

OK day

After a hideous night of very high pain levels, today hasn't been too bad.

I didn't need a top-up pill till 3.30 this afternoon, and I've managed to spend almost all day out of bed, both of which are great news.

The pain is kicking off quite a lot this evening, and looks likely to get worse, but at least I've had a bit of a rest from it. I'm due to see the doc tomorrow, so I really need that rest to carry on, at least till I get back.

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Just taken the last Fluoxetine. Let's hope the new stuff works fast.

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3am pain

I woke up after yet another weird and creepy dream, thinking there was someone in the room.

I watched a bit of TV to take my mind off it, but of course the pills I took before bed have worn off. So it's 3am and I'm lying here in a lot of pain. The slow release pill is making me feel zonked, so presumably it's helping the pain, but even so.

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Saturday, 26 March 2011

Feeling very low, angry and tearful again.

I feel like I've been a lazy cow all day, complaining about pain and using it as an excuse to do nothing. Like I'm skivving, using any excuse to slack off.

I know the truth is very different; despite debilitating pain, I've made it round Tesco, put washing away, done a ton of washing up, done an online grocery shop, taken part in a 'virtual' protest and fixed the shredder. So why do a feel such a raging failure this evening?

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Great. Now I can't even go to Tesco by myself.

I went today, taking my granny trolley so I could get a few things. I used to be able to get away with that - the trolley provided enough support to get away without my stick (because I can't manage both at once).

But today, it was a compete disaster. The pain was so bad, I desperately needed my stick and the trolley was no help.

In fact, I think that trying to use it for support has upset my back again. I then sat with the heatpad to try and stave off any problems, using the laptop for an hour. It looks like that exacerbated things.

So I now can't go to the supermarket on my own, and I can't use my new laptop for more than a few minutes. Just how much worse is this going to get??

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Friday, 25 March 2011

Feeling a bit less lonely and tearful, thank god, but I itch all over - side effect of the morphine. And that was before I had to take another two Oxynorm about 15 minutes ago. Mercifully, they are kicking in quickly; if I sit still, the pain's fine and I feel pleasantly stoned. If I move, the pain's there, but I'm stoned enough not to care.

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I feel very low, tearful and angry. I guess it's because of the shrink appointment this morning.

The pain is still bad and I'm needing lots of morphine, which is clouding my thinking so that I can't really work out why I'm feeling this way.

I wish there was someone here. Everyone else gets to hang out with friends or boyfriends or husbands, and I'm stuck here with nothing but the pain.

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Appointment with shrink

Made it to the shrink apt (in itself a victory) but had a major pain episode when I got there. Had to lie down during the appointment and take a second pill an hour after the first, then a third another hour later in order to get home.

The shrink said it looks from the outside like the pain or 'my experience of the pain' has got a lot worse since the orthopaedic surgeon's appointment.

I said I hadn't noticed that, but her saying it felt like an accusation, like I'm not fighting the pain hard enough, not dealing with it well enough. Like I'm giving up because I somehow enjoy this.

She also said she needs to talk to my GP, to work out what to do if I have an episode so bad that I can't leave. She was talking about them 'not being set up to deal with that', and whether there was a 'safer' place to see me. If she means home visits, then that's fine, but it felt very much like she was looking for an excuse to discharge me even though I still need her help.

I did have that kind of pain episode there several weeks ago, but suddenly she's worrying about it, like it's new. It made me feel like she's only now seeing the pain as being something serious, and till now she's just been humouring me, or she thought I was faking it.

I know none of this is true, but I can't help feeling that way. The other thing all of this does is make me feel like I've passed some mythical point-of-no-return. Like I've reached the point where I'm never going to be able to work again, go out on my own, do any of the normal stuff. She was talking about 'what's changed to affect the pain' as though if there isn't anything, then there's simply nothing that can be done about it.

A small part of me was terrified by the finality of all that, but a much larger part of me was even more scared by how little I felt about it. As though it was inevitable, and there was nothing left to fight for.

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Thursday, 24 March 2011

Paracetemol and morphine

I'm wondering if the non-absorption of the morphine could be down to something as simple as having enough Paracetemol in my system.

I know from my earlier experiments that Para makes the Tramadol more effective, and the pain consultant confirmed that it does help the body absorb Tramadol, though they don't know why.

Since Oxycodone is in the same family as Tramadol (they're both opiates) it could work in the same way.

I've been a bit lax over the Para lately, because it didn't seem to be doing anything, and I know I missed one on Tuesday, when I had major absorption problems. The last two days I've made sure I've taken the Para properly, and the morphine has been absorbing OK.

The two might not be connected, but then again they might. And if it is just that, at least there's something I can do to help myself.

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I have just gone down to get the post and then hung a quilt cover, 2 pillow cases and a fleece out on the clothes horse to dry. I'm now as knackered as if I'd walked 5miles, and have no choice but to return to bed.

Tomorrow, I'm meant to drive ten miles each way and sit through an hour's psych appointment. Har bloody har.

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I have just had to use a granny-style shopping trolley (as opposed to one I nicked from Tesco, obviously) just to move my new laptop from the lounge to the bedroom.

The pain in my back and shoulder is still so bad, there was no way I could pick the laptop up. This is what it therefore took to move it:
•sit on the floor beside the coffee table with my knees up to my chin
•slide the laptop across the table, to balance on my knees
•flatten my legs, so the laptop is near the floor
•slide the laptop across into the trolley which is lying facedown on the floor
•roll the trolley back upright and drag it into the bedroom
•lift the trolley onto the bed using one hand and one foot (same as getting it into the car)
•slide the laptop out

This is how ridiculously difficult and complicated it is for me to complete the simplest of tasks these days. And after all that, it's still made my back worse. It was raising the trolley that did it, even with the foot lift; I should have used the knee method instead.

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Still can't sit up - another day stuck in bed. Deep joy.

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Wednesday, 23 March 2011


I know this falls under the heading of Too Much Info, but still...

I'm finding it very strange - I suddenly have boobs! I've gained some weight in the last few weeks, and suddenly my boobs have reappeared.

I'd look great dressed up for a night out. All I need now is the pain to go down enough to be able to go on a night out...

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I haven't even been able to sit up for most of today. I'm so bored of lying in bed. There's only so much DVD-watching you can do before your brain goes numb. Not that it's been exactly functioning today anyway; the whole world has looked odd today, like I'm viewing it through some kind of messed-up lense.

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I'm paying a high price for yesterday's laptop success. I'm stuck in bed, in a lot of pain. It's particularly bad in my back.

I think it's because yesterday, I was moving about, leaning down, picking up and moving the laptop. I did it all as carefully as possible, one-handed obviously, and I chose as light a laptop as I could, but even so, it was clearly too much. I can't even lift the laptop to bring it into the bedroom to use.

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Tuesday, 22 March 2011

Why is the morphine so variable?

I wish I knew why sometimes my body absorbs the morphine, allowing it to help the pain, and other times it just doesn't.

Like today - I had to take two pills in the space of 2.5 hours this morning, but they worked, and the pain eventually did ease.

It kicked off again around 7pm, and I took three pills over and hour and a half and still nothing. Not only no pain relief, but not even any side effects - no floaty feeling or anything.

But I don't know why. What was different this evening to this morning? I really need to figure this out, because if I can make the pills more effective, I'll be able to take fewer of them.

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I'm feeling quite pleased with myself.

I managed to set up my new laptop all by myself. I had to do it in shifts, because I couldn't sit up for long, but I managed it, and I'm chuffed.

I'd had a horrid night last night, with bad panic attacks and no sleep, so I wasn't feeling too great today, but at least I feel like I achieved something.

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Monday, 21 March 2011

I feel like shit. I feel restless and tearful and like I could panic at any minute. I don't know why and I don't know what to do about it. How do I make it go away?

I feel like I want to huddle under the table and just rock. I'm scared.

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Mixed day today.

On the good side, I had a lovely visit from a friend. We didn't really do anything, just chatted, took trip to Tesco and then she did lots of jobs while I was stuck in bed. She's one of my three closest friends, and they all instinctively know how to help; I can ask them to do anything, without feeling guilty.

Everywhere I go in the house now, I find little things that she's noticed needed doing, and just done. Like, she left me some bread rolls, but she'd cut them in half ready for me. I found chopped-up veg in the fridge, the washing's been done and the kitchen sparkles.

These three friends are amazing for the way they recognize what I'm going to need, and doing it, without ever making me feel useless or beholden. Other people, like my mother, try to help, but it feels awkward and forced. It's like they're embarrassed that I need help, and that makes me feel guilty for needing it.

On the negative side today, I've been feeling very stressed and panicked at the thought of work. I know I don't have to go back yet, so I shouldn't really even be thinking about it, but I can't seem to help it. And then I get in a panic in case the doctor won't sign me off again. It's horrible and it's scary.

I know that the very fact I'm feeling this way demonstrates how not-ready I am for going back to work. I've got another week on 20mg Fluoxetine and then the building up of the Lofepramine, so it's going to be a while yet. I really really hope it works.

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Saturday, 19 March 2011

Panics unpicked

The shrink's comments may have been bloody useless, but the booklets she sent me on anxiety and panic were gold.

The key is indeed breathing, but the missing, vital, piece of information is it's about my breathing BEFORE the panic attack, not during.

I haven't read it all yet, but it looks like this is what happens in my case:
•the pain kicks off
•it's agony drawing breath, so I breathe fast and shallow to minimise the pain
•this equals hyperventilation
•the oxygen levels in my blood fall too low
•I take morphine to help the pain
•the side effects of the morphine, coupled with low oxygen levels make me feel floaty and out of control
•I start to panic as a result
•I feel terrified, I tense up, the pain gets worse, my breathing gets worse, I panic more
•and so on.

So the solution seems to be:
•when the pain kicks off, concentrate on breathing as slow and as deep as possible
•when the floatiness from the morphine starts, imagine my feet firmly rooted in the ground, so I feel safe
•keep repeating

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Letter from the shrink

I got a copy of a letter today from the shrink to the GP. In it, she said she thought I was at 'low risk' of suicide.

I know this is based on her training and experience, I know she's looking at more than the tears and the talking, and i know it's meant to be a good thing. But all I actually felt was offended. Offended that yet again, no-one is taking me seriously.

I may be at low risk, but I feel at high risk. Most of the time, I wish I was dead. A lot if the time, I think about ways to make that happen. All of the time, my soul hurts easily as much as my shoulder.

How's her 'low risk' going to look when I do finally decide enough is enough?

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My idiot mother has just accidentally sent me email address to my rapist father. Just when you think people can't get any fucking stupider

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Friday, 18 March 2011

First time in a couple of months that I've actually managed to get through a whole day without having to go back to bed.

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Thoughts for the day

*I'm about to take only the second morphine pill of the day - this is very good.

*Artificially-induced diahorrea to treat chemical constipation is bloody horrible.

*Mental health provision in this country sucks. Telling a suicidal patient 'there's no magic pill' and you just have to live with it is fucking unaccceptable.

*Why is it that Mothers, who presumably knew how to care for you as a baby, become utterly inept, insensitive and incapable of caring for their children once they're grown up?

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Thursday, 17 March 2011

Hysterical... again

Second episode of hysterics in 24 hours.

It's very scary, this business of your emotions going completely haywire. You just never know what's going to happen next. And there's the fact that half the time you're not actually reacting to what you think you're reacting to. Instead, the present has triggered some memory of the past, and THAT'S what you're really upset about.

Tonight's meltdown felt like it would go on forever, till I realised what was really hurting. Now I feel a lot better for having got all that out, but I know it'll happen all over again tomorrow, or the next day.

The loneliness and lack of control I constantly feel over the pain takes me right back to being a scared little girl who can't get anyone to help her. And suddenly, I'm dealing with all of that all over again.

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Feel like shit.

Don't know how it's possible to feel so empty, numb, lonely, overwhelmed, paralysed, got at, restless and guilty, all at the same time, but I do and I hate it.

I feel like everyone is judging me, that I'm a failure and a screwup, but at the same time i feel totally isolated and abandoned, like no-one's there to even notice what I do.

Even writing this I feel a failure because I can't put into words how bad I feel. Everything I try just sounds trite and inadequate compared to how I feel inside. It's like the words are all running on 10watt bulbs, instead of the usual 50watt. And I don't know how to turn them up.

In fact all of me feels turned down, faded out, like I'm somehow out of phase with the rest of the world. I keep reaching out to try to connect, but it's like my hand brushes against the world then passes through it. And any minute, I'm just going to disappear altogether.

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After three days of trying, I finally made it to Tesco to get something nice for lunch.

Of course, it was a roaring mistake. The pain ramped up while I was there, I had to take a pill to get home and then a second when I got here. And now I'm in the middle of horrid panic attacks. Again.

I don't usually get them in the daytime, it's normally only when I'm trying to get to sleep that they happen. Maybe it's because I only got a couple of hours sleep last night, and had to take so much morphine. I'm completely exhausted and there's so much crap floating around in my blood, it's no wonder I'm panicking. Doesn't make it any nicer though.

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It's torture. I'm so tired and have taken so much morphine that I can't keep my eyes open, but every time I close them, the panic comes swooping out if nowhere and it's terrifying. So I have to stay awake, whatever happens.
I can totally see why sleep deprivation is used as a form of torture.

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Wednesday, 16 March 2011


I was going to have nice fresh chicken with salad for my tea, but as I got up to go to Tesco, the pain exploded.

That was an hour and a half, and 25mg of morphine ago. I haven't been able to move in that time. I'm really thirsty, but can't even get to the kitchen to get a drink. My shoulder's killing me and I've got terrible screwdriver-on-the-eye.

My aspirations for tea now have been reduced to spaghetti hoops on toast. But if or when I'll be able to get it, I have no idea. And it'll take at least one more pill to do it.

I just wish there was someone here to help me.

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Useful website

especially the bit about not being able to feel the relief if you're dead.

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This waiting to change meds is like being abandoned to the depression.

How can it be medical care to say to someone 'you're so depressed you want to die, and the best we can do is tell you to live with it for six weeks'? Christ.

Why hasn't someone come up with something to help the transition, make it bearable?

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I have just managed to clean out the chins. And yes, given the current situation, that IS worthy of a blog post.

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Tuesday, 15 March 2011

It looks like my fears over tonight were justified.

I've been in bed for half an hour; the panic attacks are already horrible and the pain has ramped up, so I've just had to take another pill.

I'm terrified.

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I don't know how I'm going to get thru tonite.

Just me and the pain, alone, for ten hours in the dark.

How do I do that?

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Pain episode at surgery

So, about that doctor's appointment yesterday...

He'd asked me to go back in to see how things were. The pain hadn't been too bad so far - I didn't have to take a top up pill till lunchtime (as opposed to 9am the day before), and I wasn't feeling too low. Then shortly before leaving, a friend suggested chatting and I got panicky and tearful at the thought of having to talk about things. It took me totally by surprise. Round about the same time, the pain ramped up again, so I had to take a second pill only two hours after the first one. I didn't want to, but I couldn't drive otherwise.

I got to the surgery OK, but the pain was still rising. About ten minutes into my appointment, it really started to ramp up. The doctor had to go and fetch something and when he got back I was in agony, hunched up in the chair, unable to speak. He suggested I take something (you know it's bad when your doctor tells you to take more morphine) but I couldn't even reach for my bag.

There was nothing more he could do, and there were other patients waiting, but I couldn't even stand up, never mind make it back to the waiting room. He had to help me up and into the next room and get me up onto the bed; it was three quarters of an hour before I could go home.

To be honest, I got off pretty lightly - usually when that happens, it takes twice as long to be able to move.

I think the most disconcerting thing, though, was the look on his face when I was leaving. He seemed so relieved that it made me realise how bad I must have looked before.

Because looking in the mirror isn't exactly a priority during a pain episode, I tend to forget that it's not just me telling people it's bad; my whole body is affected, and it's very visible. And from the one time I did catch a glimpse in the mirror, I know I look like death warmed over.

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Three hours after the double dose and the pain's coming up again. To try and avoid taking loads of them today, I've doubled the morning slow release dose. I did this twice on the evening dose last week, and it was the only way of getting any relief, but the panic attacks were awful.

They're already bad, but taking eight or ten quick release over the course of the day won't be much better. I hope I haven't made a horrid mistake.

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Keep trying to tell myself I'm safe, to stave off the panic attacks from that double dose of pills, but it's not really working.

Also cross-eyed and can't breathe.

Oh, and been awake for hours. So much for the apparent narcolepsy of the past few days.

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To the architect of my misery...

Dear Mrs X

It's 2.45am on a Tuesday, nearly four years since your reckless disregard for speed limits destroyed my life.

I'm lying here in agony, having just taken the 55th and 60th miligrams of morphine in 24 hours. Earlier on I collapsed in pain in the doctor's surgery.

If I could get to my car right now, I would drive it straight into the nearest bridge abutment. Luckily for you, I can't even get to the kitchen to get a drink. (Which also knocks out overdosing, putting my head in the oven and slicing my wrists.)

There was a letter waiting for me when I finally got home from the doctor's today. Ironically, it was from the surgery, inviting me to book a smear test. I threw it away - why would I put myself through the indignity and discomfort of a smear test, when I'd have absolutely no intention of accepting treatment if it came back positive? These days, a diagnosis of cancer would be a blessed relief, because it would mean this would all end soon, without me having to hurt the people I love by taking matters into my own hands.

I hope you're proud of what you and your snazzy car have achieved. I hope whatever you were in such a hurry for was worth it. Not only have you made my life not worth living, you've put my friends and family through hell worrying about me.

Way to go you miserable, selfish cunting bitch. I hope it was fucking worth it.

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Monday, 14 March 2011

This staying awake business - lot harder than it looks.

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Friday, 11 March 2011

Good and bad

I was on my way to bed when I realised there was an enormous panic attack brewing, and now I'm terrified.

I saw the shrink today; we talked a lot about the panics. I'd somehow thought they weren't 'real' panic attacks, because they're chemically induced, but it turns out they're pretty textbook. She told me to keep checking my breathing, because it's easy to get caught in a cycle of panic and hyperventilating.

We also talked about me being off sick. I'd been thinking earlier on that at the moment, just managing the pain and the depression is stretching me to my limit - that's why trying to work was too much, and why being off sick has been such a relief. At the moment, the most pressure I can deal with is deciding whether the pain would be better lying down or sitting up, scheduling pills to make it through the day, and forcing myself to eat, that sort of thing. Even the most untaxing bit of work on top of that, like reading emails or writing a blog pushes me over the edge.

Just the pressure of waking up each day thinking 'can I work or can't I' had become dangerous, and she clearly agreed that it's much better to have simply taken the possibility away for a while.

It helped a lot having her say that, because it gave some weight to my feeling that work at the moment is too much; no matter how bad it gets, deep down I still always gave the niggling feeling that I'm skivving off.

She also reminded me that it's not always about whether doing something will make me feel better, it's just as much whether NOT doing it will make me feel worse. Like eating - I don't feel better for eating, but if I don't, it messes with the pills. So I have to remember to look at things from that angle too.

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So much pain, I can't breathe.

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... the panic attacks are fucking awful though. Not worth it.

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Thursday, 10 March 2011

Three hours of bearable pain levels. YES!

I can't see straight, can't string a sentence together and the TV is making no sense to me whatsoever, but I couldn't care less. BEARABLE pain levels.

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27 hours later and I'm finally getting a break from the pain that flared yesterday at 3pm when I stood up to go and collect my prescriptions. 27 hours.

Since then, I've take ten quick release morphine pills and three slow release ones (including upping it to a 20mg one this evening). I've also taken two Etoricoxib pills (strong anti-inflammatories), three Cyclizine (anti-nausea), eight Paracetemol, and two Fluoxetine.

I've spent 23 hours in bed, watched endless DVDs and done numerous codeword puzzles.

And there's absolutely no reason to assume tommorrow will be any better.

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I'm really scared. The pain kicked off at 3pm and it hasn't let up since, despite endless pills. I can't take any more meds, because the panic attacks are already terrifying, but still the electric shocks are firing through my shoulder, and I don't know what to do.

I don't know how to get through the night. If I get up, if I call someone, the morphine will wear off and then I've got to try and sleep despite the pain. But if I just lie here, I'll go crazy, from the pain and the panic. And now the depression is hiking up too.

When I saw the doctor the other day, we worked out that, because of how slowly you have to change over the pills, it will be a minimum of four weeks before I can hope to see any easing of the depression. But if I don't respond well to the new antidepressant, it could be as much as seven weeks. I've got three more weeks on the Fluoxetine, then it takes a week to ten days for the Lofepramine to start working. If I need a higher dose though, it can be increased twice more, on a weekly basis, each time taking over a week to kick in. So it would be seven weeks before I was on the maximum dose and getting the benefit.

What he'd failed to mention before, probably intentionally, was that you're supposed to leave two to three weeks between stopping the old and starting the new. I freaked out at that - it's bad enough thinking of another four-seven weeks of this, but another two-three on top - no way.

Right now, though, it's not about getting through the next two, three, four or even seven weeks. It's about how it get through the next hour, and then the one after that.

I really really don't want to do this any more.

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Wednesday, 9 March 2011

More of my mum

Well, my mum is trying to redeem herself. I didn't hear from her the next day, which was also quite hurtful, but when she did text me on Monday, I didn't know what to say.

She only asked how I was - part of me wanted to tell her to leave me alone and part knew that she was trying. I was on the phone to my sister at the time, and she reminded me that whatever mum had done, it was through stupidity not malice.

I replied later, very curtly, and she was very sympathetic, then yesterday she sent me a load of email funnies to try and cheer me up. It doesn't sound much, but for her, that was a pretty big thing.

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Monday, 7 March 2011

It takes a village to raise a child

It never ceases to amaze me, the different ways people respond to my situation. People you thought would have no trouble with it can get incredibly embarrassed and just absent themselves, whilst some you expected to be completely hopeless, really come through.

Age and experience has a lot to do with it. Friends who've never had to deal with dependence or disability can really struggle; they want to help, but just don't know what to say.

Then you've got your Fixer, whose approach is to blind the situation with science, often very successfully;
the Sympathiser, who holds you up emotionally and makes sure you know you're not alone;
the Back Office, who concentrates on the mundane practicalities of life;
the Comic, who tries to take your mind off it, and usually does;
and the Joker, who comes at it with an irony that might strike others as insensitive, but is actually just irreverent enough.

Each of them feels they're not doing enough, that they're not really helping, but actually they are. And of course, in reality, most people offer a mix of the above. But they all have their own particular bent, their own way of dealing with the problem that reflects core elements of their personality.

What you really need is the combination of all of those different people and approaches, to make up one truly effective support system. Thank God, despite all the crap, I do have that, and I'm grateful to every one of them.

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Sunday, 6 March 2011

Just like when I was a kid, I was the buffer zone, the sacrificial lamb to keep her safe from him...

•Anyone taking his tea out to the garage at 8pm was liable to catch the brunt of his temper tantrum over the work going wrong - send me instead
•Anyone answering his jangling on the phone would get sucked into hours as a skivvie in the garage, bleeding brakes or holding welding panels - send me instead
•Whoever answered the door when she knew it was Ivor would wind up having to talk to him till dad arrived - send me instead
•Making him keep his promise to come to Parents' Evenings or tge School Play would lead to tantrums - disappoint me instead
•Admitting she drove my friend home from the party would end in a huge row - make me lie to him instead

•Being late back from visiting me would lead to him yelling that his tea was late - abandon me to the pain instead.

I should be used to it. I thought I was. But somewhere, deep inside, I guess I always thought there was a line; a limit, beyond which even she wouldn't pass. A point where she would finally think, 'OK, I can't palm this off on my daughter; I married him, it's my responsibility to deal with him'.

Apparently not.

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Saturday, 5 March 2011


My mum's incredibly selfish, tactless and hurtful response to today's frightening pain episode has left me feeling shocked, abandoned and unbearably vulnerable.

After all this time, all she now knows that I went through, right under her nose, as a child, still her first instinct is to view my suffering primarily as some kind of accusation of her failure. And to reject it as such.

I know she feels guilty about what she let my dad do to me as a child; I know that probably means she does view any suffering I experience as being her fault. But I don't suffer pain - physical or emotional - just to make her feel bad for not protecting me

You'd think the guilt would make her more determined to support me now, but when I needed her to sit with me today, and just be there so I didn't feel so alone with the pain, she walked away, physically and emotionally. She said it was too hard to watch me like that, and 'there was nothing she could do anyway'.

So, once again I receive the message that whatever happens, how ever little control I have over it and how ever much it isn't my fault, I still can't be trusted with my mother's absolute, unconditional love - there always has to be a barrier, just to keep her safe.

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Disastrous visit from my Mum, in agony, taken more pills than I should.

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Friday, 4 March 2011

I've managed to do some work today, but I feel really weird about everything.

I'm so scared of triggering the pain that I just want to lie in bed, just in case. And I have absolutely no motivation for anything.

I feel guilty for not doing enough, but scared to do more. I'm scared if I put myself in line for even the tiniest bit of pressure, I'll fall apart. So I want to hide. But I feel like such a failure for giving in to it, I'm disgusted with myself.

And what about the next few weeks? I have to see the Personnel manager on Monday, but I don't know what to say to her. I know I've got another 3.5 weeks on 20mg fluoxetine, and then I have to build up the new stuff. So the depression will be bad for weeks more. How am I supposed to cope with work during that time? I don't feel able to work at the moment, but if I don't, what will I do all day long? I don't think the doc will sign me off for that long anyway. And what if the pain stays ad bad as it's been this week?

I'm so confused.

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Thursday, 3 March 2011

Freaking out

God I feel awful. I'm having hideous panic attacks because of all the morphine I've had to take today, and it's freaking me out.

Went on a day at the beach today; it was great, all that fresh air, watching the sea roll in, it was lovely. The pain flared early afternoon and so I had to take extra meds then wait for ages till I could get to the car. When I finally did, I had to take even more pills (obviously, I wasn't the one who was driving!).

All the way back it felt like we were doing about 100mph, i was so high. I went straight to bed when we got back, where I've now been for two hours. I had to take the evening's slow release pill because the pain was getting bad, so now I feel even more stoned, am having raging panic attacks and to cap it all, the pain is still bad and I really need another quick release pill but I'm way too scared. What am I supposed to do?

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Well, no panic attacks last night, but the awful dreams continue.

Can't remember when they started, but it's been a good couple of weeks. Yesterday it was nuclear apocalypse in a beachhouse and this morning it was a hostage situation.

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Wednesday, 2 March 2011

Possible success

So, the reduction in meds seemed to work OK today.

The pain is worse this evening, but so far I've only taken 2 quick release pills. I'm due one more at 7pm, so if I can keep it just to that, I'll be happy. I did have to take the slow release one early, though, which isn't a good sign.

The next step will be to try working tomorrow. That does depend on the panic attacks tonight though - I had to stay awake for so long last night waiting for the panic to stop, that I then slept half the morning. Exhaustion only makes the pain harder to manage, so I'm not going to force myself to work on no sleep; if the panic is bad again, it'll mean another sick day. I've been getting mild panic on and off this evening, so I'm not holding my breath.

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Brief respite

For the first time in a week, I feel vaguely human.

The pain is bearable, the side effects are pleasant instead of scary, and I've just had a nice lunch that I didn't have to go out and get.

What a blessed relief.

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Lightbulb moment

I think I've just realised why last night was so bad.

I reduced the Fluoxetine to 20mg on Monday, per Doctor's instructions. I know from a couple of years ago on the morphine that Fluoxetine inhibits its release and usefulness, so it follows that if you reduce it, the morphine's going to hit me even harder than before.

Christ, does that mean tonight will be as bad?

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Tuesday, 1 March 2011

...and I'm terrified to go to sleep, because I can already feel the panic attacks hovering at the edges.


I keep telling myself that i'm safe, but it's difficult to believe when all I can see is that car careering towards me, out of control. It's worse seeing it now though, because I know what comes after. It's not just the fear of the car hitting me, it's the fear of the four years of endless pain that follows.

I'm so terrified, I just want to sob. But there's nothing I can do, nowhere to turn.

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Having bad reaction - can't breathe, very dizzy, hard to stay awake, all the muscles locking up, especially in my back.

Must be that the evening slow release pill is chucking a load out and it's combining with the short release one I took 90 mins ago. Doesn't usually happen this badly. Wouldn't be so bad if the pain weren't still bad.

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Doubling up Part 2

So, today I managed to only double up the morning morphine (though the day's not over yet!); took a single one in the afternoon.

I also tried going to get some lunch, just to see how things felt. I managed it, but felt far too dizzy and shakey to really be safe going out, and trying to only made the pain worse and brought on the morphine-side-effect-headache that I'd managed to avoid till then by staying still.

This confirms I'm right in thinking that there's no point even trying to work whilst the meds are doubled up.

I'm hoping tomorrow to avoid the doubling up all together. Based on pain levels this afternoon, on a single dose, I still won't be able to work, but at least it'll mean fewer chemicals.

If tomorrow goes OK, I'll try single dose and some work in Thursday. I'm not sure the work part will be possible, but since part of the problem at the moment is the depression, and that's made worse by the pills, even if I can't work either way, I'd sooner take the fewer pills.

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Doubling up

Every time I think the pain can't get any worse, it proves me wrong.

The last four days have seen much higher pain levels - on top of the 20mg/day of slow release morphine, I've been having to take a quick release one every couple of hours or less. But even that hasn't eased the pain, not until enough has built up in my system to knock me out altogether. It's meant I took 55mg in total on Saturday. That's getting perilously close to the maximum 80mg a day I've ever been on.

On Sunday, in desperation, I tried taking the quick release in pairs, to see if that would help. It did, but not in a very practical way; it doesn't stop the pain, but it does quickly knock me over so I don't care how much pain I'm in.

The good thing is that it means I can leave it much longer before taking any more pills - 5 or 6 hours - but the bad thing is that I'm still completely incapacitated. I can at least rest and sleep and it means I've managed to bring the total day's dosage down to 50mg on Sunday and 45 yesterday. But I still can't work or even sit in the lounge for more than a few minutes (the chinchillas think I've left home!). I'm forced to spend my time in a drugged out haze, aware of the pain in a weird, disconnected, academic way. It's better, but it's far from a solution.

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