Taking the Stairs: June 2011

Wednesday 29 June 2011

I do worry that I'm letting the chinchillas down.

The past few days I've been forced to spend about 22 hours a day in bed. I manage to feed and water them, but I just can't sit in with them and let them out.

There's debate as to whether chins actually need time outside their cage (a no-brainer, if you ask me - how would you like to be penned in 24/7?) but the point is, mine are used to coming out. It feels cruel to deny them that, and they sit there, begging to be allowed out.

I've spent years socialising them, getting them used to people, and now it's all going down the tube. They're stuck like prisoners in their cage and I hate it and I feel really really guilty.

But if I can't even sit in a comfy armchair, how can I sit on the floor? But they'll go backwards, want nothing to do with me, if the social behaviour isn't reinforced. I don't know what to do.

First time in about 48hrs that the pain has dropped to manageable levels.

All day the pain has been sky high and has been constantly triggering the neck pressure, which in turn has been re-hiking the pain.

Right now, both the pain and the neck pressure are bubbling away, but they're not spiking and they're not setting each other off.

It's taken a lot of morphine to get here.

Tuesday 28 June 2011

Pain marathon

I've been lying in bed, rigid with pain, for the past three hours.

The pain started to kick off at 7.30 and so I went to lie down. I'd taken two top up pills at 5.30, so had to wait till 8.30 before I could take more. At 9, I took the scheduled triple slow release dose (as per the past four days).

Only now, at 10.30, is all that finally kicking in enough that I can get up and draw the curtains, go to the loo, etc.

I'm still going to have to give it another half hour before I feel confident enough to go into the other room and feed the chins. They'll have to wait till tomorrow for a dustbath and some fresh water, but at least they won't starve.

In total, I've now taken 100mg of morphine today. That's the norm at the moment. I just hope I can fall asleep quickly, or I
fear I'll wind up having to top up again.

The reason I introduced the evening triple slow release dose was to avoid late night too ups, and so far it's worked, but today I don't know.

12.30. As I feared, the pain flared up again and I had to take another two top up pills an hour ago. So far, they're doing little except make me paranoid; I'm lying here, fighting the pain and telling myself over and over that it's OK, I'm safe, when I don't actually believe a word of it.

I think it's going to be a very long night.

1.30am. Aaaaaarrrggghhhhhh

Monday 27 June 2011

Aircon

My entire day has been governed by temperature.

I spent the day in bed (or rather *on* bed) because it's been so hot, I had to have the aircon on in the lounge for the chins. But that's just too cold for me, and tends to make the pain worse. I came out and turned it off at 5, and started doing a few jobs in the lounge.

I'd taken a lot of morphine, because the pain remains bad (when I say 'a lot', I mean the current norm of double Oxycontin at one point during the day, as well as at night, plus a top up dose. [Today, the double dose was lunchtime, as it seems to have more effect then than first thing in the morning]). This meant that I'd also spent all afternoon dozing.

For some reason, doing those couple of little jobs seemed to trigger all the morphine in my system, and I suddenly came over really sick; the only thing that eased it was lots of cold air.

So for the past two hours I've been trapped in the lounge because i desperately need the aircon to ease the nausea. Thank god I've got it there, but Christ, everything's so fucking complicated!

7.45pm Of course the next problem is that I'm now due another top up pill. I need it - the pain is kicking off - but it's only going to make me more sick.

Pain or nausea, nausea or pain ...

Sunday 26 June 2011

Unbelievable

I got a letter from the shrink yesterday. It was a copy of an update letter she'd sent to my GP, and copied me in on.

It took me till today to be able to read it, because I suspected it was going to be upsetting; it was. I was in tears reading it, as expected, but not for the reasons I'd anticipated.

I'd expected to be upset about her passing judgement on me, the usual feelings that I'm 'failing' somehow in the way I'm dealing with all this.

What actually had me in floods, though, was the enormity of the situation, and how anyone could be expected - and could actually manage - to keep going through it all.

I was reading her description of what's been going on, all the things that have made it even more difficult, and all the people that have fallen by the wayside to leave me with much less support than in the past, and all I could think was 'Jesus, how the hell have I made it this far?'.

On the one hand, I was really proud of myself for keeping going, and on the other, I just couldn't believe that I hadn't given up and ended it all months ago. I don't know where I've found the strength to keep fighting through it all.

It's like a comedy of errors, every time you think things can't possibly get any worse, they do. And yet still, like some kind of Duracell Bunny, I refuse to give up. I wish I could give up, but that gene seemed to get missed out when they were putting me together, along with the maternal instinct gene and the one that makes everyone else love the Lord of the Rings movies. . .

The extra morphine has stopped most of the pain, but I can't sleep.

I tried going back to a bit of the stuff from the new pain book, but my subconscious seems to have decided that since it was so upsetting last time, it doesn't want to know now. It's completely locked down, and all I feel is a deep, abiding misery.

I'm also now terrified of my own flat. I'm scared to step out of my bedroom in the dark, for fear of what might be lurking there. Just like when I was a small child and I had to take my doll with me when I went to the toilet, to protect me.

Saturday 25 June 2011

Night-time pain

The pain at night has been very bad lately, and has necessitated extra pills, but so far I haven't been able to take enough morphine to actually make it stop. So, another approach today.

For two days, I took two Oxynorm pills at around 10pm and the pain stayed so bad that I had to take another two an hour later (this was on top of the normal double dose of Oxycontin).

To try and prevent that, last night I took 3 Oxynorm at 10; I managed not to take any more, but I was still in pain.

Tonight, I've taken three Oxycontin instead of two, in the hope that I won't need any Oxynorm after the mid-evening dose.

The totals work out of the same either way, so it's just a question of which approach best manages the pain.

Confused

God, I'm so confused. The extra morphine over the last few days because of the neck pressure problems is scrambling my brains even more than usual.

Whenever the extra meds start to kick in, I wind up flaked out in bed. I'm constantly confused about what I've taken and what I'm due to take. I keep a daily note of what meds I've taken, and I have it diarised what I'm due to take, so I can answer both questions, and I know I'm not going to make any potentially dangerous mistakes, but the feeling of confusion freaks me out.

More fallout

By the way...

I had hoped that the next time I had to use the TENS machine, the numbness in my right leg would ease.

It started during the last major neck pressure episode; I don't know if it was the TENS machine or the trapped nerve I used it to treat that caused it, but I hoped the TENS would help.

The numbness has got worse with the current neck pressure problems, and sadly the TENS hasn't helped at all.

This episode is having another knock on effect on my body too - my joints are incredibly painful, especially my knees and hips.

It's not really surprising, given that I'm having to lie down for about 22 hours a day, but it's yet another bit of unpleasantness to fill up my life.

Middle of the afternoon, and it's the first time I've been able to stand up to move out of bed without excruciating neck pressure and headache. So I'm pushing the boat out and sitting in the lounge. No idea how long I'll last - I've been here ten minutes and already my shoulder is really hurting.

As you may have gathered, it was a bloody awful night. Finally feel asleep around 5, woke up at 8. Neck pressure is lot worse today; doubled first morphine dose but it's only relaxed me - screwdriver in the eye is still going strong. Feel like shit.

I knew sleeping this afternoon would mean lying awake half the night, and it is.

I'm terrified though. I keep dozing off then waking up and finding the light on and it scares me to death because I thunk it means there's someone here (rather than that I've left the light on so I won't be scared).

There's someone upstairs with serial sneezes that keeps scaring me and they're walking round in laminated floors in clicky heels at 3am.

I know it's the morphine making me paranoid, but it's horrible. And I keep getting scared that I'll do something and not realise it's all a dream till it's too late. And there's the itching all over too - I keep finding blood everywhere because ice scratched myself raw with the itching.

I know none if this is making sense - I'm not reading the blogs before I post them, so they're almost 'stream of consciousness' , which is bad enough when you're not drugged, way worse when you are.

And of course the meds will be wearing off now, so pretty soon I'll be in big pain again, on top of everything else.

So much for the lovely floaty afternoon.

4am. It's no better with the light on. And now Sneezey upstairs has put weird music on.

All over

I feel like I spend my whole life just filling time.

Watch some TV, read a book, do a crossword. But what am I filling time for? Just waiting for the pain to start.

I've got a wardrobe full of fabulous clothes, and I never get to wear any of them. What's the point of them being here?

I used to look quite good - I had good hair, good clothes. I looked nice. Now I just wear pjs and trackie bottoms. I slob round endlessly.

I do nothing, I go nowhere. What's the point of any of it? God I feel so flat. One day just merges into the next; the only defining feature is the pain - how much, how many pills.

I had a life once. A real live life. I had a job, a career, prospects. I had dreams and ambitions. Ideas, ideals, thoughts, plans, a future. I used to feel joy and excitement and fun. I used to look forward to things, make plans, set goals.

Now I have nothing, just some useless facsimile of a life. Like a hologram, or a projection. You can swipe your hand through it, but there's nothing to grab hold of. There's no beginning and no end, no prospects or possibilities. I feel like I'm living in a perpetual temp assignment, where nothing's really real, nothing's in context and none of it matters anyway. It's all just a swirling mass of endlessness; it's all over, dead and gone.

Please just kill me now. I want to be dead. It's a dead life, so why be alive in it? My whole world is just a shadow of my real world. A shade of it, existing only to torment me.

Friday 24 June 2011

Today has proved that when the pain gets bad, there's nothing for it but to hammer it with morphine. And it does work if you throw enough at it (and you're free to spend the day in bed). So I just have to get over my worries, and do it.

I've let the colour grow out of my hair a lot at the moment - not much point paying to colour it when I rarely ever step outside the house.

It means there's a reasonably long section now of non-coloured hair, and it's very noticeably that these past few months of such terrible pain and depression have taken their toll.

The density of grey hairs has skyrocketed; I reckon there's possibly twice as much grey now as the last time the colour grew out this much. On top, it's pretty much solid grey now.

After seeing my friend last night all excited about her new job and looking great, despite two kids and being four years older than me, it hasn't helped my depression to sit here thinking about
a) my now non-existent career
b) my lovely chestnut hair ruined and grey and looking like a mop

I feel like a broken down waste of space.

Spent the afternoon surfing a wave of morphine following the double dose slow release pill at lunchtime.

It stopped both the pain and the neck pressure, and allowed me to comfortably doze for several hours. I know it'll probably mean I can't sleep tonight, but was lovely to get some rest, and for once to get only pleasant side effects.

Pain and neck pressure so bad today, on top of the lousy past few days, that decided to double the slow release morphine dose at lunchtime.

Definitely a good idea - feeling better, now sitting up (albeit with TENS up very high), and no need yet for more top ups. Will be going to lie down again soon, but at least I'm getting a little bit of relief.

Another night of extreme pain, requiring four pills in an hour. And that was after another entire day stuck in bed.

A friend came round to visit in the evening; I'd been hoping to manage to get up for that, but by the time I'd showered and dressed, I was in too much pain and had to go straight back to bed.

So much pain, so much morphine, so fed up.

Thursday 23 June 2011

Once again, the pain is way too much for the last morphine dose of the day to cope with.

This time, though, the techniques in the book aren't helping. Have just had to take extra dose. Please please please let it work, because if not, it's going to have to be a handful of them, just to get some sleep.

1.30am. Fuck it. Can't bear this pain any more. Four morphine pills in 45 mins. Don't care any more.

3am. Four pills gave an hour's relief but no sleep. Now pain us cranking up again. I want to peel my skin off with a potato peeler, i'm so miserable. Please just let me die.

Tidal wave

The 'magic' pain book may be proving extremely interesting, and I may be learning a huge amount from reading it, but it's also incredibly hard work and very, very distressing.

Every night I feel like I'm just going to drown in the emotional tidal wave it's generating. I cry and cry and cry. Not the kind of crying you do as an adult, the kind of bottomless tears that come only from a child who feels that the sky is caving in.

I can't begin to describe the depth of hopelessness and loneliness in those tears. And it's every night. I just want someone to hold me and tell me it's all going to be OK, but there's noone.

Maybe the book can help with the pain, but I don't know if I have the strength to go through the emotional turmoil that's required. During the day I feel less depressed than I have for a while, but at night I feel like someone is ripping out my soul with a toothpick.

I've tried spreading it out through the day, but I just can't seem to get at those feelings any time but late at night. And then they come at me all at once, like a raging avalanche that sweeps me up, tumbles me around, then spits me out.

I honestly don't know which is worse - the pain, or the trauma of the feelings.

Wednesday 22 June 2011

Small victory

There has been one improvement over the last couple of weeks, and I've been derelict in my duty by failing to put it up here.

I'm reading again. For months, I haven't been able to concentrate enough to be able to read. I've been stuck speed-reading things I've read hundreds of times before and which I hence know inside out and backwards. So all I've had to do is speed read the prose, then read the dialogue.

I'm now finding that I can concentrate better, and I'm steaming through books (which is a good job, because there's a huge backlog). I'm also back to having several on the go at once, currently:
One Day by David Nicholls
Heartstone by CJ Sansom
Sea of Lost Love by Santa Montefiore
and, of course, the magic pain book.

You'll notice that none of these is particularly high brow. They're better than the sword-and-sorcery fiction I was relegated to speed reading before though, and the trashy magazines that marked the absolute bottom of my concentration capabilities.

Whole day in bed with raging neck pressure - lying down was the only way to control the huge headache that was brewing. Lots of DVD-watching and plenty of reading time on the new book. (I know I haven't given any info on the title or author yet, but I don't want to jinx it, as I feel I've done with other things, like the meditation).

Experimenting again

I'm experimenting again with the schedule of Oxycontin-to-Lofepramine-to-food, now that the Etoricoxib is out of the picture.

I've noticed there's been generally less nausea since coming off the Etoricoxib, so it follows that I may now be able to be less rigid in my overall meds schedule.

Results to follow...

Tuesday 21 June 2011

It was a pretty OK pain day till mid afternoon - no top-up pills, managed to do a few chores. Then about 3 it kicked off and I had to take pills, have a hot bath etc. It stayed at that level till about 7 and it's been getting steadily worse ever since. I've been stuck in bed for the past two hours and the pain is now unbearable. I've just taken the evening double dose of slow release morphine but I'm also desperately waiting for 9.30, when I can take another two quick release. I hope to god they work better than the last two.

10.45. Pain still so bad, I was actually considering another two quick release pills, just to get some rest. I tried all the usual 'morphine-boosting' tricks, but nothing worked. Then I tried the techniques from the new book, and it seems to be back under control. Just hope it stays that way long enough to get some sleep.

Mind blowing

Emotionally-speaking, this has been an extremely intense few days.

My best friend sent me a book that she thought might be helpful. She will have no idea how profound it's effect has been, because I can't even put it into words to myself. But it's been even bigger than the meditation course last year.

Never mind the objective of 'curing' the pain (the author's inverted commas, not mine), it's been mind-blowing at an emotional level.

The book arrived with no note, and it totally freaked me out at first (till I started reading, and immediately got sucked in). She later apologised for not including a note, but said that for some reason, she couldn't find the words.

Having already read the book once since it arrived on Saturday and now being on my second read, I totally get what she means. I can't put into words the impact it's had/having on me either. But it's opened my eyes to a number of crucial things that have left me completely and utterly mind-blown.

Monday 20 June 2011

God, such a lot of back pain. Stuck in bed, i suspect a big morphine day in the offing.

Sunday 19 June 2011

Anti-inflammatory

I never did get around to putting this on the blog, but I stopped the Etoricoxib a week ago.

It's a very strong anti-inflammatory that the pain clinic suggested a couple of years ago, but I never actually got around to trying because I then took the decision to come off all the meds.

The doc put me on it after the orthopod appointment, because the injection he gave me helped for a very sort time; the doc thought maybe an anti-inflammatory pill would help longer term.

Like the injection, it seemed to help by eliminating the electric shock pains that had been coming out of nowhere, and were completely debilitating.

It was very hard on my tummy though (as anti-inflammatories always are), so when I got to the point where I wasn't sure if it was doing anything any more, I stopped it, to see. I was right, it was no longer helping - there's been no increase in pain since coming off it. My tummy has been better though (and that's even with the very bad tummy pains yesterday - I know from experience, they'd've been a lot worse if I'd still be taking the Etoricoxib).

I'm not certain, but I felt at the time I came off it - and I still think now - that maybe I've got a bit of movement back in that arm. I had started to notice the dislocating feeling again (though not so much now) and I think - I think - I can raise my arm and move it a bit more than I could.

The orthopod said I'd get the use back in that frozen shoulder - it would be nice to think this were the start of that, but to be honest, I'm really not sure if I'm just imagining it.

Friday 17 June 2011

Another morphine nightmare

Wierd afternoon. I saw the shrink at lunchtime, and I got the meds wrong coming home.

I took the 12.30 slow release morphine at the right time (in the middle of the shrink session). 1pm was three hours from my last quick release. I was about to drive home at the time, the pain wasn't too bad, so I thought I'd wait before taking the next one (ideally, they should be every four hours).

Unfortunately, by the time I got home, the pain had flared in my back and was starting in my shoulder.

I took the quick release and went straight to bed. I spent the next four hours feeling totally drugged out, as though I'd taken a lot more morphine than I actually had. I was getting all the horrid guilt/panic feelings that I often get at night when I've taken the double slow release dose.

It was a really nasty experience, made even worse by the fact that through all that, the pain was still present (though not as bad). It's finally gone down and the drugged-outness has eased, but I'm going to make damn sure I take the next dose at three hours, regardless of pain levels.

That's what's so bloody impossible about this situation - the unpredictability. I never know what the pain's going to do. Long term, the more morphine I take, the more I'll need, so it makes sense to be careful about dosage; if I don't *need* it at three hours, better to wait till four. But then it can explode, like today, and suddenly it's too late. I can't win.

A fitting end?

I spend a lot of time thinking about dying. Contemplating the different methods of suicide.

My greatest fear is getting it wrong; thinking I've achieved it, then waking up days later in the hospital, thanks to my own ineptitude, or some loving friend's misplaced desire to help.

My ideal scenario would be this: Travel to South America so that I can visit Tierra del Fuego and look out at the end of the world. Go across the water and stand on Antarctica. Then walk away and let the cold claim me.

It probably wouldn't take all that long, but the problem would be getting those around me, including those in officialdom, to let me go. And of course the 20-hour flight to the tip of South America, and the notoriously bumpy plane ride over that final stretch of water. It would take so much morphine to get me through it, that I wouldn't even know where I was. And I certainly wouldn't be capable of walking off any where by myself.

Maybe the compromise would be cruise around that part of the world, and a midnight jump off the back of the boat. The cold would kick in even quicker than on land. And those cruiseliners are a pig to turn around - hopefully by the time it got back to me, it would be too late.

If I'm honest, this has been my preferred option for a while now, basically because it seems vaguely do-able, whereas the other way simply doesn't.

But I worry I'd bottle it at the last minute. And I'd want at least some of the people I love around me during the first part of the trip. How could I ever ask them to do that, knowing what was coming next? And how to make absolutely certain they were never ever blamed for my actions?

Thursday 16 June 2011

I've just found out a very good friend of mine has been offered a fabulous new job.

I'm delighted for her - it's the perfect job for her and I know she'll be brilliant at it.

But the news just makes me cry, because my career is over. I can't see me ever being able to get back to work. Even if the depression can be brought under control, I still couldn't work with these pain levels. And the more morphine you throw at it, the more out of it I feel. How am I supposed to work, when I can't keep dream and reality straight, and when I get overwhelmed by guilt - and start reacting to it - over things that have never happened.

I was ambitious once. I wanted to move up the ladder, gain new skills, take on new responsibility. Now I can't even manage my own job.

I feel so left behind and useless. All those years I felt inadequate because I was the only one of my friends without a degree. Now I have one (two, actually) and still I'm not as good as them. Because I can't get promoted. My 'victories' are stupid pathetic things like making it to Tesco and back, getting through the whole day without having to go back to bed.

I feel like my heart is breaking.

Wednesday 15 June 2011

Assissted suicide

I watched a programme about assisted suicide today. It was hard to watch, but it did clarify for me that I want to set my own 'point of no return' - the situation beyond which I don't want to live any more.

It was interesting watching the programme, that both of the people who died, decided to take their lives quite a bit earlier than seemed necessary. The thing was though, that they were both suffering from degenerative conditions. They were aware that if they waited till they were really ill enough to want to die, they'd be past the point where they could actually do anything about it. So they had to take pre-emptive action.

I'm not in that position, but still I feel that setting some parameters in advance would be helpful. It would also stop me worrying that I was doing it just as a knee jerk reaction to a bad episode; when I do this, I want me and everyone else to be sure that it was considered and planned.

I used to say that my point-of-no-return was when I couldn't work any more. But I haven't been able to work for months now, and it's surprised me that I haven't felt it time to give in to the ever-present desire to end it all.

The key seems to be my mental state. I've felt so low and unable to cope with even the simplest of things over the past few months, that I'm actually happy not to be working. I don't feel able to work, so the doing-nothing that I always thought would be untenable, in fact is the best thing for me.

So maybe my point of no return is more about when I can't work physically, but mentally I can. The frustration of being useless and unproductive, when my brain is buzzing and active, would be the key. But what else?

I think that if I reach the point where I can no longer work and, crucially, I can no longer afford to live in a nice place - because my savings have run out and the idiot government won't support me - that will be it. The thought of living in some hovel, with the noise and nastiness that often goes with it, whilst also trying to live with the pain, depression and insomnia would be unbearable.

Also, if the morphine stops working no matter how much I take, or for some reason the doctors take it away from me, that will be it too.

There may well be more, I need to give it more thought, but that's a start.

Horrible episode

Horrible experience this morning. I don't quite know how to describe it, because the only word I can come up with - collapse - sounds melodramatic.

'Collapse' always suggests to me a loss of consciousness; I didn't pass out, but I did fall down, and I couldn't get up for around 30 minutes. I was lying there, trying to decide how bad things have to be for it to be time to call an ambulance. And I was wondering what the hell they'd be able to do anyway (once they'd kicked down my door, since it was locked and I couldn't get to it).

I had my phone in my pocket - I've learnt from previous experiences like this - but I didn't know what to do with it.

What happened was that I'd been fine, moving around at times, sitting watching TV, then I stood up to go and take the Lofepramine. I had a really strong headrush - came over all dizzy -then it was just like all the strength drained out of my body from one second to the next. I managed to aim my fall so I landed back in the chair, instead of on the floor, and I couldn't get up again.

I was lying there dizzy, hot, I couldn't breathe and I didn't have the strength even to move into a comfortable position - I was half sitting half lying, with face pressed against the back of the chair.

I couldn't reach my pills - not that I was trying to, they wouldn't have helped - and I couldn't reach the controller for the chair, to ease my position. All I could get to was the phone, and like I say, I didn't know whether I should call.

After about half an hour it eased enough for me to roll over and lie properly, then to get up and take the medication I'd been going for in the first place (not without heavy reliance on my stick, and it took two or three tries to get out of the chair). Unfortunately, I was still confused, and so I then took Oxynorm too close to the Lofepramine, completely negating the pain killing effect. But the pain had been building and building while I lay there, and I wasn't thinking straight, I was just looking for some relief.

Now, I'm stuck still in pain because the morphine couldn't work; i waiting as long as I can to take more, just in case. I managed to get some food a couple of hours after the attack, but could only move round the house shuffling along with my stick, like an old lady.

I was going to go to bed, but I feel very light headed and weak - I think the same thing will happen if I tried to stand up, and I'm scared.

Tuesday 14 June 2011

Six years. For six of the 41 years I've been alive, I've felt that I was living the right life. For all the rest of the time - through parental abuse, a dysfunctional relationship and chronic illness & disability - I've always felt I was stuck in someone else's life.

It doesn't seem fair, that having finally taken hold and got my own life, at the age of 31, it should be ripped away just six years later.

What did I ever do to deserve that? I can't see how anything's going to change, medically, and this life of a cripple is never going to feel like mine. Having known the joy of living my own life, what makes anyone think I would be willing to carry on living someone else's?

Very upset following phone appointment with doc.

The first thing to upset me was having to talk about my Temazapam experience: that left me in floods of tears.

Then I told him about my current morphine regime - a slow release pill every 4-5 hours throughout the day to build up enough in my system to get through the night, and to limit the amount of quick release I take (thus leaving me with something to resort to when things get especially bad).

He said it was fine, but it's not great because, as I have always feared, I'll just have to keep increasing it as my body gets used to each dose. There'll be no end to it; it would be much better to find a way to actually stop the pain.

Obviously, I know this, and I also know that if there was such a solution, we'd already be doing it. He said to talk to the Pain Clinic, but I know he'll say there isn't anything; let's face it, I've been asking him for a solution for years. If he had one, I'm pretty sure he would've mentioned it by now.

The whole conversation left me feeling alone and utterly hopeless.

Monday 13 June 2011

I'm getting a lot of pain in my back tonight. It's low down and at the sides - not the usual spots where I get back pain.

I'm also getting quite a lot of shoulder pain tonight. It's been a bit better today than recently, but it's kicking off tonight. Unfortunately, I forgot the Lofepramine at 7.30, and fitting it in with all the others, at intervals to avoid sickness, is meaning I can't take the final, double Oxycontin dose till 10.30, instead of 9.

That's going to mean that the 8pm quick release pills will be wearing off by the time I take the slow release. Which is going to mean an additional double dose of Oxynorm. I was hoping to avoid that? Like I did yesterday.

Phantom guilt

I hate that one of the side effects of taking this much morphine is guilt.

At any time, all of a sudden I feel overwhelmed by guilt, but I have no idea why or for what. I'll be sitting or lying there OK, then I'll suddenly feel like I've done something absolutely awful, something that everyone will hate me for and that I'll get in terrible trouble for. I'll feel guilty and panicked and fearful of the repercussions. The feelings will last for ages, then will disappear as fast as they came.

All I can do when it happens is ignore the feelings. I have to remind myself that if I can't remember what it is I'm feeling so guilty over, that probably means there actually isn't anything. And so I have to push the feelings away and pretend they're not there.

It happens over and over each day and it's very wearing, but there's nothing else I can do.

Sunday 12 June 2011

Slept. Had to dose myself with 50mg of morphine in two hours to do it - that's how much it took to get the pain down - but I slept.

Saturday 11 June 2011

Pain is so bad I can't breathe. It's the screwdriver digging around in my shoulder.

The pain got really bad last night, to the extent that I had to take 3 - yes 3 - additional pills after the final, double dose of Oxycontin.

Even with all that on board, I still lay there for quite a while with what felt like a screwdriver digging around in my shoulder. Eventually the meds knocked me out.

Good news: I then slept till 9am
Bad news: I slept through the first Oxycontin of the day. I couldn't take it without then having to skip a Lofepramine dose (or be sick all day). Being a dose of Oxy-c down means I'm spending the whole day with the digging screwdriver. Fuck.

Friday 10 June 2011

Sigh of relief

So this is what the afternoon looks like!

It's been days, if not weeks, since I've been able to be out of bed in the afternoon (having already been up all morning, mind you).

The last couple of days have been hideous, so it's such a relief to get a somewhat better day.

The pain is manageable - one top up pill so far, instead of four yesterday and the day before - I've managed to sit up for several hours, and I've even had a shower and washed my hair!

I have had neck pressure bubbling away, causing a bit of a screwdriver headache, pain in my face and a numb arm, but it's nothing compared to yesterday.

I wonder if this is all because I finally got some sleep (after lying there for hours in bad pain, and taking extra pills), or if I got the sleep because things were calming down? I guess I'll never know. Think I might treat myself, though, and watch a movie sitting up in the lounge!!

5pm Disappointingly, things didn't stay good. The shoulder pain and neck pressure has been spiking all afternoon; it's particularly bad now. I've caught up to the usual morphine amounts and I'm trying to avoid taking a migraine pill.

Thursday 9 June 2011

I'm scared to eat anything. The neck pressure and shoulder pain together have made me very sick today. I've already had to skip the Lofepramine, partly because I couldn't get up to take if and partly because I knew it would make me sick.

I'm now hungry, but eating will probably make me nauseous, and then there's the actual getting of the sandwich. I'm scared.

Shit shit shit shit shit shit

Sat twisted in armchair using laptop and now the neck pressure is hideous. Migraine is awful, shoulder pain is awful. Feel sick from all of it going at once.

Shut.

I really hope today is better than yesterday, because yesterday really sucked.

The only good thing was that I had to talk to Personnel. I spent the entire conversation in tears (obviously that wasn't the good part) but she was lovely. It was a very supportive conversation that allayed some of my worries re work. I hadn't expected that and it was a great relief.

Wednesday 8 June 2011

Pain levels have been dreadful today. Lot of morphine required, and I've had to spend virtually all day in bed.

The neck pressure had also been bad. The only time it's eased has been when my body is straight - either standing up or lying flat.

The pain in my back and shoulder has meant that standing up hasn't been an option, so it's been a bed-ridden day.

Having got up at 5pm, the neck pressure was still bad, so I gave the pedaller thing a go, to try and stave off further problems. We'll see if it works, but so far I don't feel any worse.

Monday 6 June 2011

Oxycontin vs Oxynorm?

I'm really struggling with what morphine to take when.

The last few days, I've been trying more Oxycontin and less Oxynorm. I thought it might mean a lower overall intake because there would be a steady release of morphine. I was having to take the Oxynorm more and more, and that's what I was trying to correct.

It would also mean fewer peaks and troughs. The doc had said it would be better this way. I'm spreading them out though, rather than taking them in two bouts, because I do find I get more effect from Oxycontin when I first take it. If I took the day's dose at 12 hour intervals, like you're meant to, the second half of the 12 hours would be more painful than the first.

So I'm taking then like this:
5am - 10mg
1pm - 10mg
5pm - 10mg
9pm - 20mg

The problem, though, is that the Oxycontin makes me a lot more nauseous (it's to do with the hydrochloride that makes it slow release), which makes it hard to eat, which in turn means I feel more stoned.

I don't know what to do for the best, and I don't know if it really matters anyway.

It's not working out that I take less morphine overall, but then again this is a particularly bad episode. The sickness makes life even more unbearable, so does the stoned feeling. I wouldn't be able to drive with this level of stonedness, whereas I usually can on the Oxynorm.

The pain is more level though - the peaks and troughs are evened out, as the doc said. But on the Oxynorm, I'm going to wind up taking three at a time, or taking two every two hours. Whereas on the Oxycontin, I'm having to top up less often.

This is how today worked for example:
5am - 10mg Oxyc
9am - 10 Oxyn
1pm - 10mg Oxyn
1.30pm - 10mg Oxyc
5pm - 10mg Oxyc
7pm - 10mg Oxyn
9pm - 20mg Oxyc

This is a typical day doing it the other way:
5am - 10mg Oxyc
10.30am - 10mg Oxyn
1.30pm - 10mg Oxyn
4.30pm - 5mg Oxyc
5pm - 10mg Oxyc
7.30pm - 5mg Oxyn
9pm - 20mg Oxy
9.30pm - 10mg Oxyn

This is where I think I'll be fairly soon:
5am - 10mg Oxyc
10.30am - 10mg Oxyn
12.30pm - 10mg Oxyn
2.30pm - 10mg Oxyn
4.30pm - 5mg Oxyc
5pm - 10mg Oxyc
7.30pm - 10mg Oxyn
9pm - 20mg Oxy
9.30pm - 10mg Oxyn

Which is better?

Pedaller

I've taken delivery of a Pedal Exerciser that I'm hoping will help my back, reduce the instances of neck pressure and ease the numbness in my leg.

I was on the net last week looking for something to help me open the safety cap on the Lofepramine, since pharmacies seem incapable of following a simple request to use an ordinary bottle.

It proved a very difficult thing to find, and I ended up having to go for something that should help, but isn't perfect. The same site had a cup designed for use lying down without spillage (which I've been looking for for a while, and this pedaller thingy).

It's basically a pedal set that you use sitting in your armchair. It's meant for keeping a bit fitter despite mobility problems.

I'm not so bothered about that, but the swimming experiment last year proved that moving helps my back. I'm still too scared to try getting back in the pool because I'd have to go alone and I can't be sure the pain wouldn't leave me stranded, or unable to get dressed.

So I thought the pedaller would help because it would get my legs moving like swimming, whilst safe at home.

The numbness in my leg is worse the less I move and I think (hope?) that moving a bit more will help stave off a neck pressure attack. Hopefully, being able to use it in the Mother Ship will prevent any shoulder flare-ups.

The only problem so far is that putting the thing together has upset my back so much, it looks like it'll be days before I can use it...

A bit of sleep, still tired

I did manage to get some sleep last night, though it was very broken sleep, and I still feel very tired. I also managed not to take any extra morphine over night.

I kept waking up every couple of hours and I had very vivid dreams. The pain got quite bad at one point, but I managed to relax enough to avoid any extra pills.

The pain is very bad today, so I had to take the first quick release pill earlier than usual, and even then, it didn't help a great deal. I feel very stoned as well; I suspect that's because I've been feeling so sick the last week that I haven't been able to eat much at all.

The last actual meal I ate was what my friend cooked for me when she visited last week. So I'm trying to eat something a bit more substantial, in the hope it will ease the horrible spaced out, stoned feeling.

I know I'm going to have to take more morphine soon though, because the pain still hasn't gone down. I also want to go back to bed, but I'm concerned that if I sleep this afternoon, I'll be awake all night.

Sunday 5 June 2011

Morphine total

I've just totted up today's morphine (ie from midnight to now). Given that I was awake all night in agony, and given how bad it's been all day, I suppose it's not surprising that I've taken more morphine today than ever before - 100mg.

I feel really tearful about that - it's an enormous amount - except for the fact that I know it's the absolute minimum I could have taken to get through the last 21 hours. It would have required quite a bit more to actually be pain-free.

The pain has finally gone down, but it's taken so much morphine to get there that I feel totally out of it.

I'm so stoned I can't see straight and I feel really sick. I've felt this way all day, but this is the first time it's been without the actual pain as well (though it doesn't feel far away).

The scary thing is that to keep the pain down, I'll have to take even more morphine, and hence feel even more out of it. Hateful.

7pm The pain is back again, but I still feel far too out of it to be able to take any more morphine. So now I have to just sit here and put up with it.

My hair is so filthy, it's taken to wandering off on it's own recognizance. I can't remember when I was last able to get in the shower, it just takes way more energy than I have right now.

I'm tempted to take two or three extra pills going to bed tonight. The pain has been off the chart for the last 24 hours, nothing is helping and I haven't slept properly in weeks. I know it's playing with fire, but I'm past caring. I just need some rest.

Temazapam

You're probably wondering what actually happened with the Temazapam. I'll try to explain, but I'm finding it hard to explain to myself, so I wouldn't get your hopes up.

I took the pill at 11 and the pharmacist had said it works within 30-60 minutes. So I was lying there waiting for this famous drowsiness that would make me fall over if I weren't already in bed.

Nothing happened. Gradually, over the next couple of hours, I felt more and more relaxed, till my entire body felt like lead. I could feel the pain coming on, then getting immediately wiped out by the drugs; I thought it was all going well, though I really did want to actually fall asleep.

And that's how it stayed all night. I was awake but relaxed, I didn't exactly feel drugged but I had no pain. I sat bolt upright at 4am and couldn't figure out why I wasn't fast asleep.

I think I might have dozed a bit between 5-7 (so, the same as any other day, only without the pain). I got up about 8, and that's when all hell broke loose.

I can't put into words how I felt, except that it was so awful I just desperately wanted to die. My face was puffed up like I'd been stung by a bee, with huge bags. I felt sick, angry, exhausted and very very depressed.

I know it doesn't sound like much - it doesn't sound like much when I read it back. All I can say is that it was the worse I've ever felt - worse than the anniversary, worse than any of the appointments, worse than any of the dark moments I've had these past four years - and I still want to burst into tears just thinking about it.

It wasn't till late last night that it started to ease, but then going to bed and finding myself wide awake and in agony, things got very bad again.

I would rather dose myself stupid on morphine than ever risk fallout like that again. Because I really can't be sure that I'd get through it a second time.

Yes, I'm still here. Why though?

Finally dropped off for an hour or two, just been woken by the pain. More pills. They're just Smarties now.

It's half past I'm-never-going-to-be-able-to-sleep-again-and-the-pain-is-never-going-to-stop-no-matter-how-much-morphine-I-take.

Saturday 4 June 2011

I've just been googling Dignity in Dying.

Even if the law changed, it still wouldn't help. People think it's only the terminally ill whose medical condition is so dire they might not want to carry on. At least they will soon die anyway. What about those of us whose condition isn't life threatening, only life destroying? Are we supposed to be happy to continue just for the fun of it?

I'm sorry, but I'd welcome a terminal illness at this point; at least there would be an end in sight. I know that's disrespectful to those actually in that position, but I can't help it.

For all the hideousness of the Temazapan, it did give me a pain-free night. Obviously, I haven't taken it tonight, just the morphine, and I'm in horrible pain again.

I didn't know how much morphine to tonight take because my levels are all over the place from all the pills. Clearly I got it wrong, and now I have to suffer till what I've just taken kicks in.

I can't live like this.

Pills of the devil

It's taken me the whole day to recover from the Temazapan tablet I took last night.

I still feel too traumatized to actually talk about the effects of the pill itself, but at least I'm starting to feel vaguely human again.

And for the record, I'd rather dose myself stupid on morphine than take another one of those pills.

Some people take this stuff for fun; I would rather die of sleep deprivation than ever take it again.

Friday 3 June 2011

Interesting development

This is interesting.

I went to a different chemist's to get the new prescription filled today. When the pharmacist came over to give me the pills, she took one look at me and said 'oh, you're in agony, aren't you'. I actually wasn't feeling as bad as I often am (as bad as right now, for example), but I obviously looked rough.

What was interesting, though, was the fact that I didn't find her comment intrusive or inappropriate. Yet it infuriates me when people ask what's wrong or what I've 'done to myself'.

What's the difference? Maybe it's the line between sympathy and pity, I don't know. The pharmacist today sounded genuinely sympathetic, with no strings attached. She wasn't asking what had happened, she wasn't passing judgement, she just cared.

I think all those other people who ask supposedly because they care, are actually being nosy and are subconsciously relieved that its not them. They see me as some pitiful victim.

The pharmacist wasn't interested in how or why, and she looked past the sling and the stick. She just saw someone in pain and wanted them to feel better. And it did make me feel a bit better, just receiving that unconditional concern.

It was the same as the friends that make me feel better because of the way they respond. I don't really understand it, but there it is.

I can't force myself to eat. I'm sorry, I just can't do it.

Maybe it's wrong, but I'm quite looking forward to these new pills. For months I've been longing for something to knock me out and make everything go away. That seems to be pretty much what they're all about, and I can't help looking forward to it. I just hope it works out OK.

Hitting the hard stuff

As expected, it was a dreadful night, and I've spent the morning driving all over the county trying to fix it.

I was awake for three hours before finally dropping off, only to be woken less than an hour later by the pain, which of course then meant taking more morphine.

I talked to the doc as planned this morning and he decided to switch me on to Temazapam. This one I've heard of, unsurprisingly, as it's a 'street drug'.

Because of the time it would take to get the script here by post, he said he'd fax it to the pharmacy, but when I called for a fax number, I discovered that because of it's 'street' pedigree, pharmacies will only accept an actual prescription. So I had to drive all the way to the surgery to get it, then find a pharmacy to fill it.

Luckily the pain responded to the two morphine pills I took before setting off, and I was OK till I was nearly home.

The chemist warned me that Temazapam is strong stuff and I'll start to feel drowsy between 30-60 minutes after taking it. So I should 'be sure to be lying down, so I don't fall and hurt myself even more'. It sounds pretty scary, buy I'm hoping this will mean it actually works. I'm so tired now, I'll try pretty much anything.

I probably shouldn't be surprised the original pills (Zopiclone) were so hopeless; years ago I tried one of the over-the-counter sleeping 'aids', (Nytol I think it was) and it was worse than useless. It relaxed my body but left my mind racing, and I woke up with enormous bags under my eyes, like I hadn't slept for a month. (No exaggeration, I looked like Thora Hird!). The Zopiclone didn't do that, but it didn't help me sleep either.

Let's hope this new 'hard stuff' does.

Thursday 2 June 2011

Given the amount of pain I'm still in after taking supposedly all the day's pills (and how much pain I've had all day), and given the two hours it took to fall asleep yesterday despite the sleeping pills, I don't much like my chances of a restful night tonight.

I feel stoned, sick, in pain and knackered.

Today

This is all I've managed to eat today:
bowl of cereal
2 bagels
cereal bar (about to eat now)

And I've had to force myself to eat that.

1.30am - extra bowl of cereal to try to distract myself from not being able to sleep - again. So much for the poxy sleeping pills.

Pills taken today:
Oxycontin x 2 (+ 2 more to go)
Oxynorm x 8 ( hopefully that's it ... Or not - another 2 at 2.45am)
Etoricoxib x 2
Cyclizine x 2
Lofepramine x 2 (+ 1 more to go)
Paracetemol x 7 (+ 1 more to go)
+ 2 Zopiclone to take last thing tonight (raging waste of time)

That's a fairly typical day, pills-wise.

The morphine isn't holding back the pain today. I've taken it on the same schedule as yesterday, but whereas then it muted the pain (though I was still debilitated, by neck pressure), today it's barely touching the pain.

So when the neck pressure is down, the pain is unbearable, and when the pain drops, I'm still fucked by the neck pressure.

Someone give me a reason to bother.

I think it's a good job I'm on medicine that makes me want to throw up unless I take it at the right interval after eating.

Because without that, I think I just wouldn't bother eating. I've got no appetite and no incentive to keep going.

I'm eating only because I don't want to feel constantly sick.

Well, I lay awake for over two hours, but eventually I fell asleep, and I slept well through till 7am.

To my mind, that's still not good enough. During those two hours the pain got sufficiently worse that I had to take an extra morphine pill.

I still feel really really tired though

Wednesday 1 June 2011

Try again

I talked to the doc today, because I had such an awful day yesterday and because I got no sleep last night despite taking two sleeping pills.

He agreed it shouldn't be happening but told me to try for another couple of nights. He did say though that getting the evening morphine levels right is crucial.

Tonight, I'm going to take the sleeping pull absolutely last-thing - ie at lights out, instead of when I go to bed and start reading. Maybe that will make the difference. I've got the morphine right, so we'll see, but I really hope it works, because i'm sure exhaustion is partly why I've felt so shit this afternoon.

I wish I could go back in time. I'd go back to when I started my University course.

I gave up a well-paid job, company car and all the trappings, to move to a pokey little flat up north, and live off a tiny student loan and part-time waitressing.

It was really hard work and I loved every minute of it. Of all the times in my life, that's the one I'd go back to. I loved the freedom to learn, the endless books and the enormous challenges.

I was fit and healthy then. I used to lug half the library round in my backpack, run for buses and charge round the restaurant. I juggled plates and drinks, essays and exams and I've never been happier.

I'd give anything to go back to then, to not be living this hollowed out existence of pain and pills. At least then I had a future. At least then it was worth the effort. At least then there was a point to being alive.

This is a living hell and I don't want to be in it any more

Two and a half hours since taking two two sleeping pills and nothing. Zero. Zip. Nada. Except a revolting taste in my mind.

That first day was clearly some kind of wierd coincidence, and the reality is they're going to do fuck all. And now the pain meds are wearing off too. Terriffic.