Saturday, 25 July 2009

Morphine - day ??: can't remember, and that's the problem

I've been on the morphine for nearly 2 weeks now. I decided not to follow the doctor's advice and 'double the dose after 2-3 days', since I was having so much trouble coming off the Tramadol and getting used to this new stuff. I increased to 25mg after a week and yesterday went up to 30mg. And I had a horrible night.

When I went up to 25mg I had several nights where I slept pretty well (first time in six months that I haven't woken up several hours before the alarm went off!), and a couple of mornings where the increased dose was making me feel pleasantly relaxed (like my body had dropped off to sleep and my mind was about to follow, but it never did). Last night, though, I had that same feeling, coupled with the sensation of falling forever, horrid panics, jerking awake then it all starting over again. It was awful. I tried to distract myself by make up stories in my head, but I couldn't make it past the first thought - I'd just keep thinking the same 'first line' over and over. It was really scary. Then I got really hungry. So I tried having a snack and watching a bit of TV, then trying to sleep to the sound of the TV, but that was actually worse somehow so I turned it off. And it all started again.

I'm guessing (hoping) this is just a temporary side effect, as it did wear off earlier in the week, but what doesn't seem to be wearing off is the 'brain shutdowns' I keep getting.

I've had something similar before, where the meds just make me pretty stupid, but this is different. Before, it's been like I'm aware that I'm constantly functioning on half a brain - everything seems a bit fuzzy and I can tell I'm not thinking straight. This time, though, it's really disconcerting, because I feel like I'm fine, and then my brain either just freezes, or I do something utterly ridiculous but without any awareness of it. I think it's probably down to the combination of the new pills and the anti-depressants, rather than just being about the new stuff, because I was having 'shut-down' moments before I started the morphine, but this is a lot scarier. Then, I wouldn't see it coming, but I would realise immediately afterwards that I'd just done something daft and be a bit shocked at myself. Now, I don't even seem to realise that I've done it - never mind that it was stupid - until much later. I know the drugs are affecting my concentration and memory and I think it's a spin off from that - I can't concentrate to the extent that I don't even realise I'm doing things. At times I feel zonked and spaced, but at others I feel OK, yet I'm clearly not.

So far, this has only resulted in unimportant mistakes, like forgetting I was in the middle of doing something and just going off and leaving it half done, then being really surprised to come back and find it there. But I'm a bit worried that I'm going to do that with the gas hob lit or something. Or in the car. It's a bit like when my Grandmother was in the early stages of Alzheimer's and we just couldn't tell what she might do next. I almost got on a dual carriageway going the wrong way the day before I started the morphine (one of those instances where I realise immediately afterwards and can't quite believe what I've just [nearly] done), so what might I do now?

When I'm feeling zonked on pills I don't get behind the wheel because it's just too dangerous. It was bad enough to find I'd done something stupid without having even realised I was zonked, but this is much worse. At least if I realise I've been doing daft things I know not to drive, but if I don't realise I've done them, I won't know to stay home. And if I just decide not to drive in case, then my prison goes up to maximum security overnight. I want to be sensible, particularly with something as potentially dangerous as a car, but I also don't want to limit myself any further than I have to.

I guess I just have to hope this side effect turns out to be temporary too. Because I have to increase the morphine again in a few days and if this carries on, I'll have to stay at home, just so I can remember where I live!

Friday, 17 July 2009


You know that movie with Sandra Bullock, 'The Net', where she plays a computer geek whose identity is erased as part of some corporate espionage plot? I feel like her. She's a freelance IT specialist, so she works from home. Her clients are all over the place, so her only contact with them is online or by phone. Her only 'friends' are people in online chat rooms that she's never actually met and who don't even know her real name. The very fact that she has no human contact (bar the dodgy boyfriend who shows up halfway through) is the whole crux of the story - her identity can be easily erased because it's not like she really exists; she's a shadow person created by the electronic age.

For me, the saddest - and possibly the scariest - part of the whole movie, though, is right at the very start, when she orders a pizza by phone, calls up a 'friend' in a chat room and sets one of the computer screensavers to show a roaring fire. That's her idea of a night in with friends. It seems the loneliest and most empty existence imaginable.

But that's how I feel too - a shadow person, created not by technology, but by this disability.

I know I'm not as bad as her - I have real friends, I get to see people and they know my real name - I'm lucky, by comparison. But the majority of my time is spent on my own because it's so hard to go anywhere, and the majority of my communicatioin is electronic. Technology really is a lifeline for me. My contact with friends and family is by phone and email, plus the occasional visit. I work almost exclusively from home, and it's almost all done by internet / email; it means I can stay in contact and I can do my job. But it also means that I can go for days on end without seeing or even speaking to a single person. Talking on the phone is good, but it's still not the same as real human contact - you can't see the other person's facial expressions, you can't judge their responses or adapt your own appropriately. Half of the whole experience is missing.

And it's going to get worse. At the moment I'm so much at home because the pain and the meds have been so bad I either can't get to the office, or I need to rest so often it just isn't worth it, but I keep hoping things might improve. Now, though, my employers want to move my team upstairs, where I won't be able to go, so I'll either be working at home all the time - alone - or in a separate office downstairs - alone. Either way, I'll be on my own.

I didn't ask to be living and working alone. In fact years ago, when that seemed to be where my life was headed, I made changes specifically to prevent it; I gave up freelancing and went back to work with a team because I was suddenly (intentionally) single and I didn't think it was healthy to be by myself 24/7. Some years later, I quit postgrad study in part because it was just getting too solitary. And yet here I am, precisely where I didn't want to be.

Friends do still invite me to stuff of course, and I try to go. They're very thoughtful and they try to make it as easy for me as possible, saying things like 'you don't have to come for the whole thing', or 'you can go off and lie down anytime you like, it's no problem'. I love them for being so considerate, and for still wanting me there even though it inevitably complicates things. But the very fact that it's necessary to think that way makes me feel like I'm only half a member of the group. A Shadow person.

It's the same at work. My bosses are so worried to make sure I can cope, that I'm not overloaded (especially as that's exactly what happened last year) that all I seem to do now is training and vague-non urgent stuff that has no deadline so it doesn't matter if it takes me forever to finish it. Oh, and hour upon hour of trying to make the stupid voice activation software work. It's not my bosses' fault that the one active project I was working on got pulled, and I'm grateful they're so considerate of my situation and are doing everything they can to make sure I don't have lots of work pressure to deal with on top of everything else. But it still makes me feel like I'm half an employee. My initials never turn up in the action points of meeting minutes. I rarely get an email where I'm the main recipient, not just a cc.

The whole thing about me being so desperate to stay in work is not just that I have something to do every day - let's face it, I could fill my days writing this crap - it's so I feel useful, productive, like I'm contributing something. Like there's some point to all the rest of it; a reason to lie awake all night racked with pain, a reason to have to stop every 3 steps when I walk anywhere, a reason for having to make two trips from the kitchen just to carry my dinner and a drink through.

I don't just want to be 'employed' in the sense that my time is occupied. I'm not looking just to fill the hours between getting up and going to bed. And I don't want to be half an employee or a Shadow person. I want to be useful; I've got a lot of skills and experience and I want it to be utilised. I want to be bringing something to a job that nobody else can, I want to be going out there and leaving a mark, socially and professionally. I want to be 'employed', as a real person, not a Shadow.

Tuesday, 14 July 2009

Morphine - day 2: The plot thickens

Things are a lot worse today - I was awake from 5am but the back pains were so bad I had to get up at 6. I took the first morphine at 7 but my back didn't really start to ease till after the second at midday, and even then not by much. I know the back pains come from the Tramadol, so I figured it was just that it's leaving my system and the low-dose immediate release morphine just isn't enough to make up the shortfall. I was back in bed by 7.30am, feeling absolutely exhausted, aching all over and having a really upset stomach. I couldn't even lift my head off the pillow for several hours.

I didn't find this last time, but the Tramadol back-pains didn't really start till after I went back on it after trying the morphine, so that didn't seem all that surprising. I've been saying to the doctors for ages, though, that I was worried that these back pains might be indicative of dependence on the drug, because they only happened if I missed or was late with a dose, but they kept telling me not to worry. After I tried coming off it altogether late last year (to see if it was actually doing anything for the shoulder pain - it was, so I had to restart it) the problem got worse, and it seemed to go critical when I tried reducing the dose by just one pill per day a few months ago, so I had a bit of spare capacity for the bad days. I told both the GP and the pain specialist about all this, and said I was worried my body was becoming dependant on the Tramadol, but they just made non-commital noises (presumably because they had nothing else to offer).

But I've now realised that in actual fact I AM dependant on Tramadol; I've just been doing some research and discovered that most of things I had taken as side effects of the morphine yesterday, are actually Tramadol withdrawal symptoms! It didn't happen last time because I wasn't dependant at that point.

So everything that I'm going through at the moment - the overheating then feeling freezing, not being able to sleep, the back pains, the upset stomach, feeling so weak and tired I can barely move - that's all down to the Tramadol. Most of it I've had on and off for a while, but never all at once. Fortunately, it never in all these months occurred to me that increasing the dose might ease those symptoms, (I guess I'm a bit thick, but under the circumstances, I'm quite glad). The only time I considered upping it was recently, when the actual shoulder pain was getting so much worse and I just wanted to test if the reason was that the Tramadol was failing.

What's really scary about all this, though, is that I'm what you might call a 'diligent patient' - I'd read all the literature, I knew there was a 'small risk of physical dependence' and I brought it up with my doctors as soon as I became concerned. But all they did was prescribe another drug to combat the effects (which, by the way, caused serious depression)! They didn't say 'yes that's what it is' and give me the choice to do something about it, they just stepped round the issue. If I'd realised, I would have insisted on coming off it long ago!

Healthcare needs to be a partnership between practitioner and patient, but how can that be the case if there isn't honesty? I feel really betrayed by the people I trusted with my health, and health is too precious a thing to gamble with. I wouldn't do that knowingly, so why should I be put in the position where I'm doing it inadvertently? Just because I believed what my doctors told me? Morphine's no safer, either, so the same thing could happen again. At least this time I'll know not to rely on the doctors, but to trust my own instincts.

When I started writing this, I was feeling really embarrassed to have found myself in this position; I always thought (unfairly, I now realise) that these sorts of things happened to people who were weak or lazy, people who weren't really in pain or simply didn't try to stop. Now, I just feel upset and angry that it can happen to you even when you're on the look-out for it, and your doctors, far from helping prevent it, actually let it happen.

Monday, 13 July 2009

Morphine - day 1

I started the morphine last night. Side effects so far have been:
  • feeling very spaced out and floaty
  • body temperature out of whack (mostly much too hot, but occasionally freezing cold)
  • bad nausea
  • bit dizzy (different to spaced out - actually feeing like you're going to fall over)
  • itching all over
  • talking too loud and saying things I probably shouldn't
  • feeling a bit hyper
It hasn't had any effect on the pain yet, and the evil screwdriver-in-the-eye headache that started yesterday afternoon is still going strong. I didn't get any sleep last night because of that and the overheating thing. I've had to have the TENS machine on the 'burn-your-skin-off' setting all day, just to reduce the screwdriver-in-the-eye enough to be able to work. It feels like my back is being flayed alive by it. The burns are always so bad that I then can't use the TENS for a week afterwards, to give them time to heal, so I was hoping it'd knock the nerves back to sense today and then I'd be OK, but that doesn't seem to happening. Doesn't bode well for tomorrow. Also not helped by the fact that one of the wires has malfunctioned, so I can't make the TENS stay running properly - it keeps shorting out. New leads on order, just hope they get here before it goes completely.

The spaced out thing tends to come on within half an hour of taking a pill and last for several hours afterwards; these are immediate release pills, not slow release like last time, so I get an attack of some side effects straight after each pill, and the rest just seem to be constant. At the moment I daren't drive because when the floatiness happens I just have the feeling that I wouldn't react quickly enough on the road. I got a lift to the office today and I guess I'll just have to see tomorrow.

I think at the moment the morphine is also acting a bit like anti-depressants; I feel a bit removed from my fears about it - if I don't think about it, I'm OK, but if someone starts talking to me about it, I can feel the panic surging up and it's a real struggle to push it down. This anti-dep effect isn't necessarily as encouraging as you might think - the same thing happened last time on morphine and with a couple of other things since, but then it all went to pot.

Friday, 10 July 2009


I'm scared.

The Tramadol's not working anymore. The pain doctor said the only option was morphine, so I went to my GP today. I was in so much pain I could hardly walk or talk -I don't think he was expecting that. We talked about it and he gave me the prescription. For some reason, though, my brain just kept shutting down, and the minute he stopped speaking, I couldn't remember a word he'd said. Usually I'm very good at memorizing instructions etc - dose to start on, how much to increase it by and when, that sort of thing - but today I had to ask him three times, and in the end get him to write it down. I couldn't even remember the name of the stuff and kept wondering why he was talking about some medication I've never taken!

I thought I was just having a brainless moment because of the pain, though I was a bit surprised, because it wasn't as bad as it can be, and I can usually still think better than that. Now I think it was more than that though - now I think my brain was shutting down out of fear.

I'd planned to go and get my prescriptions filled tomorrow; with the Tramadol failing, the pain is unbearable, so I wanted to start any new meds as soon as possible. But then a few minutes ago it hit me - tomorrow I'm going to be taking morphine again. And I freaked out.

I was put on morphine last year, but within a couple of weeks I went into a terrible terrible depression and was seriously suicidal. I can still remember the unbearable blackness that seemed to come down around me. Sitting there, late at night, desperately trying to get someone - anyone - to answer the phone . It wasn't just that I wanted to kill myself, it was that I knew that the next step would be realising I'd already gone too far to turn back. Like the way you keep telling yourself you're not going to complain to the people upstairs about the noise - right up until the point that you put a hole in the ceiling with the broom handle you don't even remember picking up.

It's the thought of facing that horrible blackness again that has me so freaked out now. The blackness that weighs more than the sun and pins you down and obliterates you. The blackness that drives out all the oxygen, snuffs out the light and dampens down all sound, so there's suddenly nothing there but you. So all you can see, hear or feel is It, pressing down on you. It's the way you try to make yourself so small that it can't find you, but somehow it always does. The way talking to someone can make you think it's gone, but really it's just hiding. Waiting.

That's what scares me about going back on morphine. Because even though I'll be watching out for warning signs , even though my friends are going to be looking out for me, even though I'm already taking antidepressants and that might help stave it off, I know how fast it can strike. Last time, 12 hours before I found myself drowning in blackness and contemplating the knives in the kitchen, I was feeling fine. Better than fine; I'd gone into work, had lots of compliments on how I was dressed, my hair, my nails. The pain had been bearable; things had seemed pretty OK, all things considered.

Then out of nowhere this thing swept in and took over. It tooks weeks to get the morphine out of my system and months to get over those feelings (or not, apparently). And here I am, about to start down the same road again. I'm only doing it because I truly believe there's no other way; I can't live with the pain at this level any more, and I think there's just as good a chance that if I try, it'll push me over the edge anyway. So trying a different morphine, one that's meant to have fewer side effects, makes sense I guess. I just don't want to go back to that place again, that's all.

Wednesday, 8 July 2009

Glossary of pain

So, here's the vocabularly that's built up among me and my little coterie of supporters over the past couple of years - I hope they won't mind my including their creations here along with my own! - plus useful terms I never wanted to have to know.

Anti-convulsants - epilepsy drugs they use to try to interrupt pain signals.

Anti-Tramadol day - day where not only is the Tramadol not providing any pain relief, it's actually making things worse by causing muscles spasms of its own

Baddy elbow - my injured shoulder; the idea of elbows seems easier for kids to grasp than shoulders, for some reason!

Bad pain day - can't move much, need stick to go out anywhere, need multiple rest periods lying down

Bag of shite - Dragon voice recognition software (don't get me started!)

Bionic woman - me, at my desk, using mobile arm supports, wearing multiple headsets and talking to the computer

Bob - Blue Badge

Chronic pain - pain that lasts more than 3 months

Common-sense bypass - affliction suffered by companies and organisations that implement strategies they say are designed to help people with disabilities, but actually just overcomplicate things past the point of reason

Complex Regional Pain Syndrome - pain that nerves are reporting when they shouldn't

Cyril - blue walking stick, blinged up (he has a bit of a sexual identity crisis!)

Dependence - needing a particular medication just to feel 'normal' (not necessarily to ease the pain). Can be precursor to addiction, but is not the same thing

Doris - sling

Droopy eye - when neck pressure affects nerves in face so one eye won't open properly

Evil pain day - you figure it out! Need stick even in the house, can't work, can't do anything, need to rest most of the time, pain so bad I can't breathe, talk or move

Flapjack alert - when stocks of flapjacks (about the only cake I can eat these days) are running dangerously low

Flapjack-deficit - no flapjacks left, run for your lives

Fluffy day- when brain goes on hols because of so much medication, and I end up talking complete crap

Foot-up - using foot to lift trolley with few bits of shopping in it into passenger side footwell of car

George - green walking stick, covered in ladybugs

Good pain day - when I can move around without my stick, only have to lie down for an hour or so during the day, can sit at my desk and work without excessive pain

Grabby-thing - pole with pincer on the end for picking things up. Actually called a Happy Hand, but that's just too stupid...

Mother Ship - electric reclining chair - even more high tech than the Star Trek chair

Neck pressure - from trapped nerves - the feeling that my head is being blown up from the inside out, like when you were a kid and you used to hang off railings and things like that, and all the blood would rush to your head

Neuropathic pain - pain that's coming from problems with the nerves themselves

Opiates - strong pain meds like Tramadol, morphine. Used to get high by people without pain - if you have pain, however, you don't get high on them, all they can do (maybe) is ease the pain

Pity fest - people going overboard feeling sorry for you, e.g. welling up or repeatedly saying 'but you're so young'

Prozac moment - when brain completely shuts down and I can't even remember my own name!

Referred pain - pain that's caused by a problem in one part of the body, but actually manifests in another

Relays - trips up and down the stairs taking the bits of shopping in one at a time

Screwdriver headache - caused by neck pressure. Feeling like a screwdriver is being pushed through one or both eyes

SEs - side effects

Selfish tit - someone who uses a disabled space when they don't need to, just because they're in a hurry (if you want the space, you can have it, as long as you take the pain too)

Shoot me - use PainGone Pen on me to try and interrupt pain signals (bit like TENS machine)

Spinny-thing - steering wheel ball

Star Trek chair - orthopaedic office chair that looks like you could control the Starship Enterprise from it

Structural engineering - the endlessly changing combination of pillows and back supports to try and enable me to sleep

Tactical sleep - rest period timed to enable me to get through e.g. a meeting or friend's visit

Tolerance - when your body has got so used to a medication that it no longer works without increasing the dose

Wired for sound - TENS machine on and ready to go

Zonked - having trouble thinking or processing information, because of medication

Thursday, 2 July 2009

Just Me

You wouldn't necessarily think that having someone agree with you would be a bad thing, but as it turns out, it can be.

Every time in the past when I've been to a doctor - anyone from my GP or pain consultant to the physio or neurologist - we've always debated (sometimes outright argued) some point or another. Whether it's been them blithely telling me things will improve even though they have nothing to back that up other than blind faith, or me trying to make them understand that if I follow their advice, and move my arm more, then the pain gets worse, there's always been something we've disagreed on.

It's always annoyed the hell out of me that they thought they knew more about the pain I live with everyday, than I do. I respected their theoretical knowledge and their experience, but I just wanted them to recognise that not every case is the same, and that I know my body well enough, and am intelligent enough, to maybe have a deeper understanding of the situation than they can, second-hand.

Now, though, I'm into uncharted territory and I don't like it. Now, they are agreeing with me, and it turns out that's even worse than feeling like they don't listen.

Last week I saw my pain consultant. He's a lovely guy, and has always been one of the few to really try and listen; he's never pulled any punches and he just doesn't do bullshit, for which I've always been extremely grateful. Even so, there's always been one thing or another that I've not agreed with him on, thought he hadn't entirely dealt with, or that he just didn't quite get. Going through the long explanations of how things have been since my last visit, feeeling the pressure to make him understand what's really going on - it's always been a pretty fraught and stressful experience.

This time was different though. Whether it was the letter from the GP requesting an urgent appointment, or the state of me when I finally made it into his room (barely able to stand, trouble breathing and unable to speak), but I pretty much didn't have to say a word. This time, he seemed to take one look at me, and completely get it. Not only that, when I could start speaking, everything I said, he agreed with. Yes, the Tramadol is failing, yes the only option is morphine, yes that's dangerous because I reacted so badly to it last time, yes it's now worth the risk because things are untenable as they are and they're only getting worse. Yes it's worth trying the McTimoney - who knows, it could help - yes it may make things worse before they get better, yes it's better to finish that treatment before changing the meds.

The only thing we didn't agree on was him assuring me it would get better - it wouldn't go away, but it would get better than this. If anyone else had said that, I'd have jumped on them, demanding evidence, since it just seems so bloody unlikely, but I just didn't have the energy (or the breath). And the fact that he doesn't go in for the bullshit that so many of the others do, made me think that maybe he really does believe it, and isn't just trying to make me feel better. So even though I couldn't agree with him, I didn't argue.

The thing is, though, that since that appointment I have been feeling like absolute crap. Mentally, I mean. Very depressed, tearful, can't bear to talk to anyone. And I realise it's precisely because he agreed with everything I said that I feel so bad. Always before, even when I was ranting about doctors not listening or not knowing what they were on about, I guess I've always had the sense that there must be someone out there who knows more about this than me - there must be. Somewhere there has to be someone who potentially might have the answer - it can't be that this is it. And that someone will have a whole store of knowledge - and hence possibility - that I can't access. Not being able to access that knowledge has always meant that I had no idea of its scope, and that, subconsciously, made me feel that it was limitless - if you don't know its limits, it must be because there aren't any. There was a solution out there, it was just a question of finding it. And if anyone was going to find it, this guy would be the one.

But to go in there with nothing but negative updates, and to not have him debunk at least some of them - in fact for him to sit there and agree with each and every one - has left me feeling utterly defenceless and alone. It's like there's no longer anyone or anything between me and this situation - the people I rely on for answers and advice don't know any more than I do. They have nothing left to give. I'm completely adrift, with nothing to hold on to. I'm it. Just me. And that's absolutely fucking terrifying. I feel like an egg that's lost its shell and is only held together by an invisible membrane; the tiniest touch and the whole thing will just disintegrate. Talking about the situation to anyone - even thinking about it - feels like poking a finger into that membrane, then waiting for it to rupture.

And then today I went to the McTimoney guy, who three weeks ago was all gung-ho and convinced he could help. I told him I was worried that the worsening symptoms I've had since we started the treatment might not be it getting worse before it gets better, but just it getting worse. I expected a whole spiel about having to give it time, that it's normal for this to happen, blah, blah, blah. But what he actually said was that it was a reasonable question, that my condition isn't responding in the way he'd expected and he's not sure what to do next because nothing is following the pattern that it should. We've given it another try, but he pretty much said that I need to decide if I want to continue, since we're really just guessing now.

I think I liked it better when they were all arguing with me.