Sunday, 29 November 2009
The side effects of the morphine went out of control a couple of weeks after I hit the 80mg dose I’d been aiming for. The depression went critical and I was majorly suicidal. I was also still having severe pain episodes, so it obviously wasn't helping much and I decided I had no choice but to come off it. The doc reckoned I’d be able to reduce 10mg every 2-3 days, and so avoid the all-at-once route. Initially, he was right, though my stomach went haywire, but then the muscle spasms which I had been so worried about went mad and I couldn’t move. A few days later, when I tried to reduce the morphine from 30mg to 20mg, all hell broke loose. I'd had to double the dose of antidepressant because I was such a mess, and even though I was still taking the morphine, the antidepressant was now basically cancelling it out and my body went into full-blown withdrawal. Keeping on taking the morphine would only have prolonged the agony, so I had to stop it completely.
I had severe stomach problems and couldn’t eat anything for days on end (I lost nearly a stone in under a week). I couldn’t breathe or speak and every time I moved more than a few steps I was fighting not to pass out. I couldn’t sleep and I didn’t even have the strength to stand up. The muscle spasms were agony and I had shooting nerve pains in my arms and legs. I felt absolutely wretched – no matter what words I use, there's still no way I can even come close to describing what it felt like.
I made it to the doc’s after a few days, but semi-collapsed in his office and had to stay there for hours till I was well enough to leave. He said it would be over in a couple of days, and that it really shouldn’t have been this bad. I didn't find that enormously helpful, to be honest.
After 9 days off the morphine, I'm gradually improving, but it’s very slow and the doc's ‘couple of days’ is about as accurate as the ‘3-5 days’ they originally predicted. I can now breathe as long as I don’t try talking at the same time, and can move around without feeling faint, most of the time. My tummy has settled down and I’m able to eat. I’m still horribly weak though, and I’m still getting intermittent muscle spasms, so it’s not over yet. I guess that having been on opiates for over 2 years, it takes a while for the body to get back in balance.
And of course, the reason for all of this in the first place – my shoulder; the pain has been getting steadily worse, so the morphine was obviously doing something, but not nearly enough to be worth the side effects. God knows what happens next.
Friday, 27 November 2009
Wrung out, twisted, crushed and torn like a rag,
Pulled inside out, upside down and back to front; up is down, north is south.
Everything but Now fades to a single, tiny pinprick of untouchable light,
Trapped inside the black, spinning vortex, whirling and swirling, empty yet crushing, closing in. Alone.
Helping hands, loving voices, calling out, reaching in, but ghostly, distant, separate;
Cruel projections from another world, fleeting, amorphous disintegrations into dust.
Body and soul slammed over and over, again and again. Unrelenting, unremitting, unforgiving.
Tuesday, 10 November 2009
The depression went critical two weeks into the 'magical' 80mg morphine dose, along with full-on panic attacks. Then just to rub salt into the wound, I had a major pain episode.
So, no choice but to come off it - I can't live like that. I've already dropped two doses, but it just won't stop. The depression just won't leave me alone and the pain is rampant and I don't know what to do. It's just too hard.
Somebody, please help me.
Wednesday, 14 October 2009
It's not that I'm scared to go to sleep – not consciously anyway – and it's not as if the panic attacks or the nightmares were bad last night – actually, they were a bit better – but the thought of going to bed feels as fundamentally wrong as drinking poison, or throwing myself off a cliff.
It would be easy to blame it on my Dad, and it probably is to do with that, but I never really felt like this in the past. I had nights where I didn't want to go to sleep, but not like this, and I'm convinced it's to do with the medication. There's something about the morphine that seems to reach down and open the door to the deepest, darkest, most concentrated and intense emotions in your psyche. Then it reaches in and stirs them around till they come sweeping out like some kind of interstellar lab accident. It's why the hypnotherapy last year was so unbearable – I was digging around in my own subconscious at a time when it was being chemically dissolved from the inside.
At the moment, every few days all of the rage and sadness from when I was a little girl rises to the surface and the intensity of those feelings is mindblowing. They're so huge, so deep, so broad that I just can't find words for them. Whatever direction I look, they stretch beyond the horizon. Forward, back. Left, right. Up, down. They’re never-ending. And this reluctance to end the day is the same. It just feels like there's some kind of insurmountable ‘something’ standing between me and tomorrow.
I know it must be part of the cycle of side-effects – another one to add to the list of rage, depression, pseudofeelings, oversensitivity – but that knowledge doesn't make it any easier. I feel completely disconnected, divorced from myself. Washed away inside an enormity that I can't even begin to comprehend.
Sunday, 11 October 2009
I wasn't planning to, not yet anyway. I was planning to do the increase to 80mg next weekend, then just leave it for a month to give the side-effects time to settle down. But it seems like the decision has crept up and made itself behind my back.
I've had three days this week where the side-effects went right down; I wasn't dizzy, I could breathe, I wasn't sick, there was no rage, depression, nightmares or panic attacks. It was bliss! The pain levels seemed to drop at the same time so it was a double whammy – less pain and virtually no side-effects. I could think clearly, I could write, I could even sleep. I was still needing my arm in a sling in the evenings because the neck pressure was coming straight from my shoulder and causing migraines, but I cope with that. As long as I kept my arm still and supported, it was OK, and it wasn't a problem in bed, so it wasn't keeping me awake as it so often does.
Then on Friday, the side-effects started up again. I'd had panic attacks all the previous night, I was dizzy and couldn't breathe for hours after taking my morning morphine. I could feel the rage building in the evening, and that night was one horrible nightmare after another. So I knew the side-effects were back.
Now, ever since the last increase, I've noticed that the shoulder pain has been worse (up until the last few days); worse but different. It's been much more crampy than what I usually get, and I know from my spreadsheets (they may seem anal, but this is where they’re worth their weight in gold!) that it's happened before. Every time I do an increase of the morphine, the shoulder pain gets worse. There’s also a tendency for the anti-tramadol pains and the neck pressure to get worse.
All of that had eased over these past few days, but then on Friday night, it was back. I lay awake for hours, tossing and turning with the most awful the neck pressure, so bad that I couldn't find a position that eased the headache. I ended up having to get up at usual work time on Saturday, even though it's the weekend, because I just couldn't lie there any more. It carried on being bad all day, and I also had much more anti-tramadol pain than in the previous few days.
As I was lying there yesterday morning, I started to think what a coincidence it was that just as the side-effects start to ramp up again, so does the neck pressure. After a day of fighting with it, and as I was desperately trying to find a position that eased both the neck pressure and the anti-tramadol pains in the evening, I realised that more and more it seems to me that these two things are ALSO side-effects. It makes sense -- if opiates cause muscle spasms (which is what the anti-tramadol pains are) in my back, why wouldn't they also cause them in my neck? And why wouldn't those spasms potentially pinch nerves, so leading to the neck pressure that causes the migraines? The change in the shoulder pain shows that the same thing is happening there too.
For some reason, I'd always thought of the anti-tramadol pain as being somehow separate and different to the ‘side-effects’ – like the opiates caused a physical reaction that led to the pain, rather than simply being a chemical reaction, which I guess is how I've always thought of 'side-effects'. I guess it's because I've always viewed the anti-tramadol pain as being a sign of my body needing more of the drug, rather than reacting to it, because initially I only experienced it when I’d missed a dose.
But it seems to me now that there's no real difference. The muscle spasms are a side effect of the opiates, just like the dizziness and the trouble breathing. All of the side-effects have undoubtedly been worse this increase than the previous ones. It makes sense to assume that the next (and final) increase will be even worse. So I'm not exactly keen on the idea of increasing to 80mg.
What terrifies me most about coming down off the morphine, though, is those muscle spasms. All the way up, I've had periods where the spasms were so bad I just didn't know what to do with myself. I couldn't get rid of them, and there was no way to get comfortable. Nothing helped. But I kept telling myself that the next increase would sort it out. That's not going to be the case on the way down. In fact, it's going to be the other way around; each time, I do a decrease and experience those pains, I'm going to know that it's only going to get worse with the next change.
So what's the point in doing the increase to 80mg, when I know that all that’s going to happen is I'll lose a week to the dizziness and breathing troubles, the shoulder pain will get worse, I'll get a few days where everything is tantalisingly better, then the side-effects will kick in again?
My bizarre conviction that 80mg was the magic number, where the morphine would suddenly start to work, is looking increasingly that – bizarre. How could it possibly suddenly start helping, to the extent that these side-effects seemed acceptable, just by adding another 10mg? It can't. Instead, I'll spend the next four weeks cycling through rage, depression, pseudofeelings and oversensitivity; I'll have my arm in a sling to try and minimise the migraines; the shoulder pain will be different to the norm, but not noticeably better and the muscle spasms will cause as many problems as the shoulder pain itself. And at the end of it, I'll finally concede that the morphine doesn't work, and have to start decreasing it to wean myself off.
All that final increase will have done, then, is give me an additional painful and distressing decrease to do, because my body will have got used to that dosage and won't want to have less. I’d be better off just starting the decreases from here. So like I said, I seem to have decided to come off the morphine.
Saturday, 3 October 2009
I haven't been able to write for weeks because the morphine leaves me so foggy, and because right now, writing about it breaks my heart. But it's breaking anyway, so why not.
I went to the Pain Clinic on Monday. He totally floored me by saying, very directly, that if the morphine's not helping the pain, and the side effects are so awful, there's no point taking it. I should just come off it. But he has nothing to offer in it's place, so he's talking about no pain relief at all.
It's not like I haven't thought about this myself - hell, I went in there planning to raise exactly the same question - but I was expecting him to tell me I was in too much of a hurry again, to give it time, that I was still on a low dose. Instead, he tells me that if it hasn't worked by now, it's not going to, so I might as well give up.
I've had this thing in my head all along, that 80mg would be the magic number; that that would be the point at which it started doing some good. Don't ask me why - there's no reason for it, it's just always been there. I was on 60mg when I saw him, planning to increase to 70 that day. I told him my instinct was to keep going to 80, just to satisfy myself; either it would work, and prove him wrong, or it wouldn't, but at least I'd know I'd tried. Because the side effects are so evil, there's no way I could go through all this again if I regretted not finding out.
So I did the increase on Monday, as planned. I don't know whether I'm being particularly sensitive to them because I'm hyper-observant looking for any improvement in the pain, but the side effects seem so much worse this time. The panic attacks at night are so bad I can't even describe them. Then there's the breathing problems and the dizziness. I itch all over, I'm starving hungry but feel sick when I eat. I can't think straight, I can't write, I can't follow simple instructions or do the simplest of tasks. It's wretched. And then there's the emotional turmoil - the rage, depression, weeping, 'pseudofeelings' (reacting to things as though I'm feeling one way, when actually I'm feeling something completely different, so everything seems fake and superimposed). Oh, and then of course there's the fact that the pain is worse than it was before!
I don't think I can do it all again, just to get to the magic 80mg. But if I don't, then I went through this for nothing, because there's no improvement in the pain, so all the higher dose has done is cause more side effects. If I do go through with the final increase, I have to have all the big side effects again, worse, then just sit and tolerate the ongoing breathlessness, fatigue, and emotional wobbles for weeks, to be sure there's no improvement in the pain, and to see they ever actually go away. I stayed at 60mg for 3 weeks and was still cycling through depression, rage, pseudofeelings and oversensitivity at the end of it. I was still getting breathing problems and dizziness almost daily. So either that's 'normal' on these meds, or it takes more than 3 weeks for it all to settle down. (For me - apparently, it's only supposed to take 3-4 days!)
So after going through all that, I'll then have to decide which is worse - living in a drugged-out haze where I can't trust my emotions, where it's actually the pills that prevent me doing things and where the pain's still there; or go through months of decreasing the pills - which will be as bad as increasing, if not worse - to end up with no pain relief whatsoever.
Some choice! I know that some of the pain I get now is caused by the opiates - (the back spasms) and I also know that the shoulder pain itself is different on these pills (more crampy and made worse by heat), so I realise it's possible things could be better on no meds. I've heard of people who've found that. But none of them seemed to be as debilitated by their pain as I am, so maybe it just wasn't as bad (or maybe I'm a wimp).
But at this point, I don't know what to think, what to hope for, what to do. I feel like shit on the meds, but if they suddenly kill the pain, will that seem a fair price for the stranglehold they have on my life? But just how bad would the pain be on no meds? Would I be able to think enough through it to appreciate the fact that I've got my brain back? Even the pain itself makes me dizzy and breathless when it's really bad, so things could be just as bad.
What the hell am I supposed to do?
Monday, 21 September 2009
Wednesday, 9 September 2009
Day 4 of the latest increase and, exactly as per the pattern, I'm horribly dizzy and having real trouble breathing. Managed to work through this stage last time, albeit at home rather than in the office, but just can't do it today. Need to lie down most of the time to ease the breathing, and even when it goes down a bit, the effort of sitting up is just exhausting.
God I feel pathetic.
Tuesday, 8 September 2009
After my last post, I increased the morning morphine to 30mg, in the hope that it would offset the effects of the Fluoxetine. The jury is still out on whether it's worked. I've definitely been less zonked taking the Fluoxetine in the morning, but 'less' is a relative term - I'm still needing to rest / sleep an awful lot. I'm still having episodes where I'm so dizzy I can barely stand up, and ones where I can't breathe enough to stand up anyway. The muscle spasms are still there, though it seemed that the increase eased them, then gradually they broke through again. The same goes for the pain. The neck pressure has also been ramping up (to the point of a migraine on Saturday, that required migraine-meds and top-up morphine just to reduce [couldn't get rid of it]). I've also been experiencing episodes of extreme rage-coupled-with-depression.
The last two days it's been a major struggle just to find the energy to sit upright, never mind do anything else, but then again, I did do another increase (now on 60mg/day) on Saturday, so it's not surprising I'm getting another round of SEs. I've expanded the spreadsheet to try to track them, because there's a definite pattern, and if I can nail it down, I can at least know what I'm dealing with. I know that day 1-2 tends to be very bad on dizziness, breathing and general zonkage, but pain levels usually drop. Day 3 is the calm before the storm, because day 4-5 tends to be worse than day 1-2. The rage-depression comes along around day 6, and day 7 is often an uber-zonk, so I can't even lift my head off the pillow. Things usually start to settle down a bit then, but the pain, muscle spasms and neck pressure also all start top build up again. Come day 13-14, I'm suddenly freezing cold all the time and just can't get warm. Then I increase the dose and start the whole dance again.
To top it all though, I discovered late on Sunday that, in my drugged-out state, I'd actually managed to throw my morphine away, thinking it was an empty packet! I found myself with only enough left for Monday, and because of the dose increase, unable to drive to the doc's to get more. I was terrified about pain levels with no meds, about going into withdrawal, how to get to the doctor's, that he'd think I'd been abusing them and therefore refuse to give me more. (I've always been proud of the fact that, through all this, I've never given in to the temptation to go over the maximum dose. Once you lose trust over something like this, though, you're screwed.)
Irritatingly, my doc was on holiday, but the guy I saw was sympathetic and seemed to believe me; he gave me the prescription, anyway. But it doesn't take away the shock (and embarrassment) of doing something that stupid, or the fear that I'll do it again. Or that I'll do something even worse.
I feel like I can't trust myself to do even the simplest of things, cos god knows what kind of hash I might make of it! And it's not like there's anyone here to pick up my silly mistakes, or point out that I'm doing something stupid. My friends tell me I am thinking and reacting clearly, but I just feel in a complete fog; like I'm in a racing car going full tilt round the track, with no idea how to steer the thing, let alone where the brakes are.
Thursday, 20 August 2009
So, here's the situation:
Ever since I started the morphine, I've still been getting the 'anti-Tramadol' muscle spasms in my back. I thought it was because the 10mg morning dose just wasn't enough to last the day, but even on 20mg, it was still happening. So I started to think the Fluoxetine was inhibiting it, and I moved that to the evening to see if it helped. It did, but then I was so off my face that I could barely remember my name. I talked to my doc about it, and he said it sounded like the morphine was just too much for me, and suggested a different one. His only thought about the back pain was that my back's now really weak from inactivity.
A friend, though, said she'd had similar problems when she'd tried taking Fluoxetine in the evening instead of the morning, and she wasn't on pain meds. So rather than immediately change the morphine, I decided to try putting the Fluoxetine back to the morning, but stagger it and the morphine, instead of taking them together, to see if that made any difference. The first day I had really bad muscle spasms till a couple of hours after the morning morphine, but I wasn't as spaced out (I actually managed to write an article!). The shoulder pain wasn't great though, and I lost most of the morning waiting for the morphine to kick in. I had a pretty bad headache by the evening too.
The second day (today) I took the morphine a bit earlier, though still after the Fluoxetine - the spasms were a bit worse, the shoulder pain was a lot worse, I've been more out of it and I developed a screwdriver headache tthis evening hat required a morphine top-up (so 45mg today) and still hasn't gone. It didn't help that the voice activation software was totally offline today, so I've had to type everything. And I walked further than I should have (will I never learn!).
My questions from all this were:
Why am I still getting anti-Tramadol muscle spasms, even though I'm not on Tramadol?
- Because morphine is also an opiate and that's the cause (hence the second dose of morphine eases it)?
- Because it's actually caused by Fluoxetine inhibiting the pain meds? BUT I had those pains long before I started Fluoxetine - when I tried to stop Tramadol and when I was late with doses
Why am I totally spaced out if I take the Fluoxetine in evening, but not if I take it in the morning?
- Because the morphine is uninhibited and it's wiping me out? BUT it didn't happen from the evening dose when the Fluoxetine was in the morning
- Because of the Fluoxetine itself? BUT I had similar to the zonkage on the immediate release morphine (which always happened straight after taking a pill, so that was definitely the cause)
I could draw some conclusions, but they didn't actually solve the puzzle:
Taking morphine first thing, with Fluoxetine:
- gives the morphine time to kick in before I get up - better for my shoulder
- means the muscle spasms build throughout the day so they're really bad by the evening
- I have no muscle spasms at night
- I'm less spaced out all day
Taking Fluoxetine at 7am and morphine at 9am:
- means I lose most of the morning waiting for the morphine to kick in
- the muscle spasms only ruin half the day
- I get bad headaches
- I get bad muscle spasms in the night
Taking Fluoxetine in the evening:
- means I get no muscle spasms in the day, but they're bad at night
- I'm off my face all day
I'm a very 'visual' person - I need to see the patterns behind things in order to be able to understand them, and I realised that just writing about all this wasn't helping - all I was ending up with was a list of facts / theories that meant nothing. I needed some sort of visual representation. I've always used Pro/Con lists to organise my thoughts (I am the consumate Virgo!), but there were too many variables here, so it had to be a spreadsheet.
Now I know it sounds supremely anal to be using spreadsheets to figure out what's happening with my meds, but you can laugh all you want, because it worked. I think, I think, I've cracked it:
Morphine makes me zonked, but Fluoxetine can also make you zonked if taken at the wrong time of day; taking it in the evening is a double whammy - Morphine Zonk + Fluoxetine Zonk.
Tramadol is an opiate, just like morphine. The muscle spasms are triggered by my body's opiate-dependence; when levels run low, the pains start (either that or it's actual pain that only the opiates are strong enough to deal with, but I don't think so).
The Fluoxetine affects my body's ability to absorb the opiates (I started it a couple of months before I stopped the Tramadol - I think it contributed to, though didn't cause, the Tramadol failure). If I take them together, I'm therefore only getting partial benefit from the morphine and THAT'S why the spasms are bad until I take another dose. Taking the morphine after the Fluoxetine helps, but the latter's presence, fresh in my system, still limits what I can get from the morphine a couple of hours later.
The net result of all this is:
a) I have to take the Fluoxetine in the morning, so I need to find a way to make the morphine work around that
b) any morphine is an opiate, so the muscle spasms are likely to persist
c) any other type of morphine could be affected by the Fluoxetine in the same way
d) before changing morphine (and getting a whole new bunch of SEs), maybe I should increase the morning dose of what I'm on now, to offset the loss of absorption caused by the Fluoxetine
e) any increase has to allow me to take the Fluoxetine and the morphine together, because losing half the day waiting for the morphine to kick in is not an option; it's much better if I can take it, then get up an hour later when it's already working. Otherwise, I can barely even get out of bed.
And if you think all that sounds complicated, imagine trying to work it out when you're drugged up to the eyeballs!!!
Monday, 17 August 2009
These pills are turning me into fucking zombie, and the pain's still there. I'm an intelligent person and I want my brain back.
Why am I even taking them? Being so off my face that I don't notice the pain isn't a solution.
I've had enough of this.
Saturday, 15 August 2009
The first time it happened, I managed it on my own, but this time I had to call a friend because I just didn't know what to do. Or what I would do. It was like this angry little girl inside was suddenly in control, and I had no idea what was going to happen (christ, I sound schizophrenic!). Not that she doesn't have the right to be angry - she quite clearly does - but being suddenly slammed with that, out of nowhere, was pretty bloody horrifying. And just when it seemed like it was easing, then the breathing problems and the panic attacks started...
It all ties in with what happened the last time I tried morphine though. Then, I was having a lot of therapy as well; if this drug somehow opens the doors on old feelings, and you're also having treatments like hypnotherapy that are designed to do the same thing - it's no wonder things went so badly wrong! I didn't find this with the immediate release stuff, though, so whatever causes it, its seems to be specific to the slow release stuff.
And as if all that wasn't enough, I'm also investigating another theory at the moment - that the anti-depressants somehow inhibit the morphine and limit its efectiveness. I've always taken my anti-depressant in the morning, and initially I found that the morning dose of morphine that I took at the same time wasn't enough to get me through to the evening dose. I thought it was because it was the smaller of the two, but once they were equal, it was still the same - I didn't really get proper pain relief till I'd taken the evening dose as well. So I've been trying taking the anti-depressant later, to see if the morning morphine works better. I'm only on the second day of the experiment, but early indications are that it does. But then last night I had trouble with the evening dose feeling like it hadn't worked. I can't win.
Monday, 10 August 2009
Had to top up with immed release on Friday and Saturday, then felt awful yesterday - zonked and spaced and out of it, like the morning's pill was once again reactivating everything else. Should have done the increase today, but needed to be able to drive, so had to delay it.
Not looking forward to this, because 40mg is where the evil depression hit last time (5 days in) and the side effects are probably going to wipe my brain out for a week. I hate that.
But the pain's bad, so I have to do it. Not that I hold out much hope of it helping - pain's been worse this evening since I took the 20mg dose.
Wish I didn't have to do this. Any of it.
Friday, 7 August 2009
I ended up having to do the 'topping up' thing, with the immediate-release pills, for the first time.
I was worried about this, given how the stuff was making me feel last week, but the pain was so bad, I had no choice. It took about an hour-and-a-half, but eventually it did start to ease. It didn't last long though - another couple of hours and it was already wearing off. I know I could easily have taken another one, but I didn't want to, so gritted my teeth to get through to the time for taking the evening dose. I made it - and this is the larger of the two doses, so it's helped -but even so I'm getting a lot of pain heading off to bed, so god knows what tomorrow's going to be like.
This is all such a balancing act - I don't want to increase my basic dose yet, because the side effects still haven't settled (though they seem to be improving), but if the pain's so bad that I'm having to take the other pills as well, then I'm going to get those side effects too. So which is worse - more side effects because of a high dose of slow-release, or more side effects because of a lower dose of slow-release plus occasional immediate-release? If I could be sure that the higher dose of the slow-release would work, I'd say that would be better, so I didn't have to go through what I did today, but I can't even guarantee that.
It's like trying to build a wardrobe with no instructions and wearing a blindfold!
Tuesday, 4 August 2009
I've been getting breathing problems since I started taking the morphine - nothing major, just feels like I'm at altitude and the air's too thin. It tends to be worse at night when I've taken the larger dose.
Last night, though, I also had panic attacks. Over and over, it got really hard to breathe and I started to feel panicky - though not about the breathing; I've lived at altitude, so I recognise that feeling and I know it's not a problem. No, this was like being perpetually in the moments just after you've woken up from a really bad nightmare - your heart's pounding, you can't breathe, you're on hyper-alert in case the monsters weren't just in your head . . .
I had this once before, that night after I increased the dose to 30 on the immediate-release stuff, but it didn't last nearly as long. This just went on and on, all night. I tried putting the light on, reading, doing puzzles, watching TV, nothing worked. And as soon as I stopped concentrating on something else, it happened again.
I'd already not been able to go to bed till 1am because the damn stuff was making hyper, and then this.
Oh, and I nearly broke my toe at the weekend tripping over a footstool - it's now all swollen and blood-blistery (my toe, not the footstool!). And yesterday I burnt my hand on the oven . . .
Monday, 3 August 2009
I posted the day after I increased the morphine to 30mg, and I was having these horrible ‘shut down’ moments, where I was feeling completely zonked and just seemed to ‘switch off’ in the middle of things. It was happening at fairly unimportant moments, but I was worried it might happen when I had the gas hob on, or was in the car or something.
The first couple of days after the increase weren't nice, then things seemed to improve. But then all hell broke loose.
Four days after the increase, I was so zonked after taking the first pills of the day that I couldn't even get out of bed. The next day I thought I was doing better - the zonked feeling seemed to be wearing off - but 2 minutes into a conversation, my friend told me I sounded really drunk. Things went downhill from there - I started feeling more and more out of it and decided it would be best to wait a while before trying to get to the office. When I finally went out to the car 2 hours later, I felt like I was fairly OK, but two minutes into the journey I realized that I really wasn't; the ‘shut down’ moments were happening again, whilst I was driving, only they were worse - I was completely 'blanking out', then suddenly realising that I was in the car! It was terrifying! Obviously I turned round and came straight home again, then spent the next 4 or 5 hours feeling like I was on a completely different planet.
It seems like each time I took one of these immediate-release pills, it reactivated all of the morphine that was already in my system; every pill I took, the worse I felt. It was like the dosage was way too high for my body, but not nearly high enough to actually do the job I was taking it for, and kill the pain. Either that, or I have some weird 4-day-side-effect problem, where things get really bad 4 days after I increase a dose. (It was 4 or 5 days after an increase that everything went so bad the last time I was on morphine.) I thought if it was a side effect thing, maybe it would pass, but when I spoke to the doctor we agreed it would be better to change onto a slow-release morphine, just in case.
So now I'm starting all over again, on the same stuff as certain high-profile celebs who shall remain nameless . . .
So far (4 days in . . . ) the zonking isn't as bad as on the old stuff, but I did have to delay going to the office by two hours today because I wasn't safe to drive. I'm still taking 30mg (10 in the morning 20 in the evening), but I'm having a really hard time because the 10 isn't enough to get me through the 12 hours it's supposed to last. It was fine over the weekend - I could just take the morning dose a couple of hours late, then carry on sleeping. That didn’t work today though, because it turns out that it does still make me very zonked, about 1½hr after I take it; not a problem when I'm lazing around in bed, but very inconvenient when I’m trying to work! So I need to take it at the right time in the morning, but that means I'm going to have several very unpleasant hours in the evening before I can take the next dose. Unless I ‘top up’ with the immediate-release stuff, which the doctor told me I could do. But I really don't fancy that, given the problems I’ve have already had!
Of course the other option is to increase to 20mg twice a day, which I'm planning to do eventually, but I was on 40mg when the awful depression hit last time and to be honest I don't want to. I will get there, but I just need to take my time, because if it all goes wrong like that again, I don't know that I have the strength to try it a third time.
One thing, though, I really and truly do not get, is why people do this for fun . . . I think I'd sooner stick spoons in my eyes.
Saturday, 25 July 2009
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
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
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
- 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
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
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
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
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.
Monday, 29 June 2009
I'm having a particularly bad time with the pain at the moment anyway, so I was expecting it to be tough getting there, but it was far worse than I'd feared. The whole way (it's the kind of distance that would take an able-bodied person a solid 5 minutes to cover, at a brisk walk) I was having to stop and rest every third step, and it took me half an hour to get there. There was the horrid moment of trying to decide which would be less draining - trying to get up the 8 stairs linking two levels, or using the ramp which added another 50 yards to the journey (I went for the stairs) - and the humiliation of person after person walking past me staring at me as though I was putting on some kind of street entertainment. (I particularly enjoyed the obese porter who doubled back for a second look, whilst tenderly cradling his MacDonalds lunch.)
Finally, I made it to the clinic, which was mercifully quiet. The receptionist was just picking up the phone to make a call, and as I stood in the doorway, resting yet again, I said she might as well carry on, because it would take me 5 minutes just to get across the room to her. When the doctor called me in, he had time to go and do a bit of paperwork while I made my way to his room, but thank God he didn't just stand in the doorway and wait. It's bad enough hobbling round like you're 100, without feeling people's impatience while you do it!
When I left, the receptionist suggested a wheelchair and I was forced to agree - I knew I'd never make it back to the car - but I really didn't want to. I've only been in one once before, on holiday with a friend last year, when I knew she wanted to take a long walk along the boardwalk, and I couldn't, but didn't want to spoil it for her, so I agreed.
This time, as then, I felt terribly self-conscious, and like I was cheating somehow. I've been trying to work out why, and the only thing I can think is that subconsciously I see wheelchairs as only being necessary if you can't walk at all, which clearly isn't the case. But the fact that I can walk, even though often only a very short distance, and certainly not as far as I needed to, made me feel both times like I was faking it, making it up for attention. I felt like everyone was looking at me thinking 'get up you lazy cow, you don't need that thing'. (Maybe it's me that thinks I'm being lazy, not trying hard enough, but intellectually I know that's not true.)
And there's something about being pushed along with your handbag in your lap - it feels like you're passing judgement, somehow. I felt like people would think I was a Hyacinth Bucket-type - inspecting my surroundings with my nose in the air, thinking I was far too posh to walk and therefore making some poor sod push me. I know, it's mad, but it's how it felt.
And then today a disability assessor, talking about attending conferences and meetings, asked if I'd thought about using a wheelchair.
Tuesday, 23 June 2009
I didn't really get a childhood; abusive father, mother who could see everything but what was under her nose, disabled sister who obviously needed all the attention - God forbid anyone should have even noticed I was there! But I came through it, and in the end, I was even managing to shake it off (as much as you ever can). I was learning to be me, to look after myself emotionally as well as physically. And I was doing my best to give the little kid that still lives inside and still feels so hurt and betrayed, a second chance at childhood.
But what the hell am I supposed to do now? I can't give her a childhood - I can't even give myself a fucking life! It's over. I sit here, day after day, wondering how I'm going to manage to do any work, or how much time I'll have to waste lying in bed, because the pain's so bad I can't sit up. It's not about what sort of fun I can have today, where to go, what to do, who to see. It's about how do I get this glass of Coke from the kitchen to the lounge when it's too heavy for me to carry? I'm sitting here in an invisible prison with no way out. And I'm so fucking angry I just want to scream!
WHY! Why did this have to happen! Why, after all the other crap and bullshit, did I now have to put up with this? Isn't it enough that I had to live through being raped by my own father, grow up terrified of what he was going to do next and be constantly convinced that whatever it was, it must be my fault - whose else could it be? Isn't it enough that I spent my whole time wondering if my own mother actually gave a shit about any of it? Or that I was constantly terrified that if I looked away from the world for just a second, I might simply disappear? How can it be fair to go through all that, come out the other side and be doing OK, and then to have this happen? What could I possibly have done that was bad enough to deserve it? And what the fucking hell am I supposed to do now?
I wish they'd never pulled me out of that car.
Friday, 12 June 2009
I have to be honest and say that I can't for the life of me see how the little flicks they do could make the slightest bit of difference, but I'm keeping an open mind.
The practitioner, though, was a breath of fresh air!
He took the most detailed medical history I've ever been asked for, and was the only person not to look at me like I'm mad, or making it up, when I listed the many types of pain and neurological disturbance I have to deal with every day. It was so nice to have someone tell me it's a good idea to use a walking stick rather than fall down(!), to not sit there and tell me I should use my arm more, swing my arm naturally as I walk, relax my shoulder and all sorts of other things that are impossible with the pain. He just understood that everything I'm doing is a reaction to the pain, and an adaptation so that I can continue to function at some level. He not only understood that, he applauded it!
Thank God for someone with the common sense to see that I wouldn't be holding my arm this way, sitting this way, doing everything one-handed and walking with a stick if I didn't have to!
After taking the history, he said there was lots of diagnostic testing he could do, but it's all very 'antagonistic' and would only make things worse (he could see I was already having a bad day); a good history should be enough. A medical person with the sense to see that pulling my arm around just to see if it hurts is a bad idea? One who actually realises that I know my pain best, and doesn't argue with me about it? Unheard of!
He did a couple of very small things to start the treatment off, and then I have to go back next week. Despite being incredibly gentle, I was still in a lot of pain afterwards and had a pretty miserable evening, but he'd warned me that would probably be the case, and I'm not naive enough to think that something which could help wouldn't upset it a bit at first.
But I will be going back next time. Even if the treatment doesn't make a blind bit of difference, it was worth the money yesterday to find a medical pratctitioner who actually listened!
Friday, 5 June 2009
I was hunting around on the net trying to verify something a neurology consultant had told me about the maximum dosage of my meds in Germany, and I came across a forum where people were talking about how much of this particular drug you can take in a day, the side effects and so on. I thought 'Great, this'll be useful, people who've maybe had similar experiences to me'. I was a bit confused at the way they kept talking about how much they loved the stuff, but I naively thought they just loved the fact that it eased their pain. Oh no. I'd stumbled onto some kind of prescription-drug-addict-forum!
When they were talking about dosage, what works and what doesn't, they weren't talking about managing pain, they were talking about getting high! (And though I realised it was an opiate-based medication, it had never occurred to me that anyone would take it for fun, largely because I didn't think it was that strong. Just goes to show.)
It made me furious though! I get so sick of constantly popping pills, having irritating reminders going off to tell me when to take them, having my whole day revolve around what pills to take when, and here are these jokers batting on about how great the pills are and how they've taken more than twice the max dosage just to get that 'lovely floaty feeling'!
Time after time I look at those bloody pills, wanting nothing more than to rebel and refuse to take them, chuck them in the bin, just have nothing to do with them. But I know from bitter, painful experience what will happen if I miss even a couple of doses in a day. God forbid I should ever go out of the house without them.
I have no choice about taking these pills, because they are the only things that keep me vaguely functioning through the pain, and here's these people doing it for fun! Not only that, these pills are addictive, so they are setting themselves up to HAVE to keep taking them (if they're not already in that position) and all for a 'good feeling'.
Seriously, what's wrong with these people?
Wednesday, 27 May 2009
So, it was my sister's wedding at the weekend. Everything went really well and she looked absolutely stunning. It was a beautiful day, everyone had a fabulous time, and it was fantastic to see her looking so happy.
I was having a really bad pain day though. I needed my stick, which I'd really been hoping to avoid, and the TENS machine, and I even had to have the bouquet tied to the stick and my hand, because it was too heavy for me to carry. I had to keep sitting down during the photos and by the evening, I couldn't move. It all made me feel pretty self-conscious, but I figured all eyes would be on my sister, so no-one would be paying much attention to me.
Most of the people at the wedding I didn't know, but there were a few that I'd met before and that knew about my situation, as well as some family friends who'd heard about it. I couldn't believe it though, when they started coming up to me, acting all shocked, asking me what I had done to myself this time and seeming to not quite believe me when I said it was still the same problem. The fact that I'd told them all about it before seemed to completely pass them by! It's bad enough having to explain all this the first time, round, without having to go over it again and again, especially with people looking at you like you're some kind of drama queen! Even worse though, was the pitying looks they were giving me, and the way they kept saying things like 'but you're so young!'. My godfather even started crying. It made me want to scream! I know it must be really hard to see someone struggling and in pain - and there's no way I can hide it when it's like that - but the last thing I need is people pitying me!
It's shitty situation, obviously, but pity doesn't help. Be sympathetic by all means, offer to help if there's something you can to do make things easier - let's face it, I need all the help I can get! - but please, if you're going to feel sorry for me, at least wait till I've left the room! Seeing it written all over your face doesn't make me feel any better, you know. It doesn't make the pain or the limitations any easier to bear. It just makes me feel worse, because I can see all the things I used to do, the person I used to be, reflected back in your eyes. And it kills me! You think it upsets you to see me like this - how do you think it makes me feel? I don't need any extra reminders of how much my life has changed - I get that every time I try to move! What I need from you is just to remember that underneath all this, I'm still the same person. Look beyond the sling, the walking stick, the TENS machine and the medication, and see that it's still Me.
I don't need platitudes. I don't need to hear that I'm still young. And it doesn't help for someone who has no clue what it's like, to tell me that I 'just have to stay positive' - how could they possibly know what I have to do, when they've never been there themselves, and all they've seen of my life is a tiny snapshot?
I know it's probably that they just don't know what to say. I guess disability makes people uncomfortable and they try to cover it. They feel helpless and want to say something - anything - to try and make it better. But I have many friends who manage to be there for me and help me in all sorts of ways, without making me feel like they pity me. I know they care, I know they worry, I know they're sympathetic, but they never make me feel like I'm anything less than I was before the accident. It's taken me a long time to learn to accept help and to understand that people don't resent having to do things for me, they don't think I'm being lazy or difficult, and if they've offered to help, it's because they care, so it's OK to accept. But I don't think I'm ever going to get used to feeling pitied. And to be honest, I don't want to.
Saturday, 2 May 2009
If I'd lost my arm in the accident, it would be a lot easier (and apologies to anyone who has lost a limb and thinks this is crap, but I genuinely believe it's true). If I'd lost my arm, I'd have had a period of recovery, faced decisions about prosthetics and so on, but there would have come a time when the injury had settled and it was then all about adjusting (which I know would be a massive task - I'm not trying to minimise the effect of losing a limb). I'd have had to get used to managing without that arm, deal with the pyscological fallout etc. But at least everything else would work OK, and part of the adjustment would be learning to do two-handed things with one hand, compensating for the missing limb and so on. There are many very capable amputees out there who prove it can be done.
But it doesn't work that way for me. Not only does the injury never settle down - it's always as though it's only just happened - but the rest of my body is effected too.
Think about it - I don't have much use of my left arm. OK (well, it's not OK, obviously, but you know what I mean). But I can't just adapt to doing things with the other arm, because it's connected to both my bad shoulder and my neck, and using it sends pain through them almost as much as using the bad arm itself does (referred pain, I think they call it). Not only can I not adapt to doing things with that hand instead, I can't even do the things I used to do with it, because the pain is so bad. So I''m left almost with no arms. Same with walking - every step reverberates through my spine and causes pain in my shoulder and neck. People (even my GP!) sometimes wonder why I need to walk with a stick when the pain's in my shoulder. I've even had people challenge the fact that sometimes it's so bad it knocks me off my feet, because they can't see how pain in the upper body could effect the legs. But it's not that it 'effects' the legs, it's just that everything's connected, and pain travels.
On top of that, pain levels vary a lot, but you never know what's going to set it off. You could start the day fairly OK, then for no apparent reason it kicks off, and suddenly you can barely move. So you always have to plan for the worst, to make sure you don't find yourself stranded. But that means having to take a constantly negative view of what you can and can't do. Sometimes you're there frustrated because you know that you could have managed more, if only you had been able to guarantee nothing would change, and other times you're thanking your lucky stars that you were so 'pessimistic' about how you'd cope in a particular situation. It drives me nuts and I'm sure it doesn't help the not-so-close people understand the situation (colleagues, aquaintances, not close friends and family - they know, because they've seen it firsthand). I'm sure these other people think I'm being terribly dramatic and pessimistic in the way I approach things, and when the pain doesn't kick off, they probably think that even more. But if they saw all the other times, when it does, they'd realise that I really have no choice but to do it this way. If I banked on a good pain day, and got a bad one, how would I even get home!
Friday, 17 April 2009
It's not like this hasn't struck me before, but nonetheless I did just sit there for a minute, dumbstruck. Then I got furious. So it's not fair to keep a dog alive in chronic pain (and I completely agree, it's not), but it's OK to expect humans to live with pain indefinitely? Pain that's never going to go away, never going to change, never going to get any easier to bear? What, does the fact that we can comprehend the pain better than an animal, can identify it's source and quantify it's effects, mean that we deserve to endure it for longer? That's our punishment for our 'higher functioning' is it? The more you can understand something - not just at the base, instinctual level, but intellectually as well - the more you shuold have to put up with it? An animal, that has no concept of the implications of it's situation, the problems it's going to face, how long it could go on for, is put out of it's misery. But a human, who can understand all those things and so much more, is left to suffer.
And if the human in question decides that actually they aren't willing to do that, that they're going to take matters into their own hands, society jumps on them, saying what a terrible thing that would be, that it's weak, selfish, morally wrong, a terrible waste of a life. I'll tell you what's a waste of life - an intelligent, fun-loving person with their whole life ahead of them, suddenly unable to do any of the things she used to, unable even to sit, eat or sleep without pain, just because some idiot in a car couldn't keep their eyes on the road. That's a waste of a life.
Yet this society, which claims to care so much about everyone and everything, claims to abhor cruelty or suffering of any kind, thinks that's OK. People who haven't been there - who often don't even know anyone who has - and have no right to judge, think it's OK. Well if it's so OK, why don't you try it? You try living with endless pain, waking up day after day in agony, knowing it's never going to change, and just see how you feel. And it's not just about people in my situation either - what about people facing terminal illness or degenerative disease - they're in the same boat. You think that's OK too? And don't start with the 'life is sacred' bullshit - it's the QUALITY of life that should be sacred, not the mere fact of a beating heart and recognizable brain function.
No-one should be left to suffer - animal or human. It's cruel, it's inhumane and it's unforgivable. It makes me sick to live in a society that forces it's loved ones to die a slow agonising death, or live an endless miserable life, rather than give them the gift of setting them free.