Thursday 30 March 2023

PICS

Out here in the perimeter there are no stars
Stoned Immaculate - Jim Morrison / The Doors

Sorry, this is a rather long post. And excuse me if it is alarming or disturbing to read! Better out than in

Back in ICU, shortly after I came to, when I knew my head had cleared and I was no longer nuts; I made two sweeping claims about my experience and prognosis. Firstly, I was pretty confident that my mental health would be robust enough to avoid developing post traumatic stress (PTSD) - even though it affects somewhere between a fifth and a third of ICU survivors, and my ICU experience was much longer and probably more traumatic than ‘average’ (whatever that might mean in this context). And secondly, I dismissed the significance of the whole episode, pointing out that while it might seem a big deal to everyone else, it was - for me - just another in the long line of myeloma melodramas. Over time, I’m revising both those opinions.

Firstly, although I’m a long way from PTSD, I have definitely experienced an amount of anxiety, which is a component of PTSD. It’s new to me. My mental health is not something I worry about much. I’ve struggled, at times, with stress, but I’m not used to feeling anxious. But right now, each time I push physical boundaries - walking a significant distance, doing an amount of exercise, my first trip back to hospital, my first trips out to the shops - I can feel physical anxiety, my pulse accelerating and my breathing becoming faster and shallower. The breathing in particular is an unsurprising legacy from when I was in respiratory distress. I’m having to learn to consciously manage my breathing - longer, slower, deeper - and with it the accompanying mildly panicky hyper-alert feeling. I’m finding an increased need for both mindfulness and meditation.

Secondly, it is true in one sense that this is just a.n.other myeloma episode. Myeloma melodramas are unrelenting and unpredictable, and they involve a repeating cycle of periods of illness, pain and treatment, followed by rehabilitation and recovery. The last few months fits that pattern. But in another sense, this is very different indeed. I’ve found myself searching out other testimonials of ICU survivors, in order to make more sense of my own. ICU-survival is not just a new neighbourhood in myelomaville. It is a different place, populated by different people with different issues. I’ve joined another of the “clubs you wish you hadn’t joined”, and what I’m dealing with now is Post Intensive Care Syndrome (PICS): a combination of physical, cognitive and psychological problems experienced as a legacy of having spent time in ICU.

Physically, the hole I’m in is deeper than the ones I’ve found myself in previously, so recuperation has been more challenging. Compared to a stem cell transplant, this is harder. That said, I’m making remarkable progress and feeing pretty chipper. My legs are still weak, and my feet swell because my leg muscles aren’t sufficiently pumping the blood back up out of them. I did - eventually, after 5 weeks - get a visit from a physio, and I have a good routine to build up my muscles. I’m pretty confident now taking trips out of the house, and my fatigue seems to be back to normal-for-me, which is very manageable. It’s been physically challenging, coming back from the day when I could do no more than waggle a finger, but it’s a job mostly done. My pressure sores improve too - only one still needs nursing care, and although it has a while to go, it is healing. The district nurses no longer call, and my carer visits cease as of tomorrow. I’m trying to arrange to have the hospital bed uplifted. I’m optimistic that my consultant will assess me fit to restart wonder drug treatment, at my next appointment in two weeks time.

Cognitively, I’m aware I’m a little slow. I’m also aware of a few very specific deficits. I’m suddenly very poor at locating sounds. In hospital I struggled to tell whether it was my machines which were beeping, or those of a neighbouring patient. And I still find it difficult to work out what direction noise is coming from. I also seem to have a lot of trouble sequencing the past - I struggle to remember if things happened yesterday, or last week. I have to manually count days to work out how long it was since I was discharged, for example. It’s weird and annoying, and i suspect it would make me somewhat unreliable, if my schedule were any more complicated than it is, since I have not much idea what’s happening when, unless I look in the diary. I’m hoping these little issues will resolve over time. From what I’ve read, there’s a good chance they will.

And psychologically? The more I’ve reflected on the delirium I experienced, the more profound and unsettling I’ve found it. Listening to others tell their stories, has helped me realise that I had a lot more delirious thoughts and experiences, over a longer period of time. They’re still surfacing in my memory. And I’ve concluded it’s wrong to describe them as “dreams” because they don’t behave like dreams. Dream fade quite rapidly, but these do not. These are memories, it’s just they’re memories of things that didn’t happen. Or at least, of things that didn’t happen as I remember them. Let’s call them madmories. I gave the example, in a previous post, of the “windy legs” experiences I had, triggered by the muscle massaging contraptions on my legs. I’ve realised subsequently that I have madmories involving all sorts of things I must have experienced while sedated, including all sorts of ICU routines: being “repositioned”, being washed, having my sheets changed, and so on. Other more ominous stimuli include the device with which they used to force me to cough up phlegm. And then there’s the restraints that were used on my legs, and also - I now suspect - on my arms. Sometimes sedated people try to pull out the ventilator - which would obviously be a horrific thing to do. And so agitated patients have to be restrained. Did this ever happen to me? My madmories would suggest it did.

I have a number of madmories involving flights, with special sections of the plane for people with respiratory weakness and involving convoluted and frightening experiences with border control where I was required to undergo a range of extreme versions of covid swab-type tests. (Maybe that's my madmory of having a feeding tube inserted?) Some of the flight madmories are really quite exotic, including trips across West Africa reviewing filming locations for TV show commissions, putting down in a sequence of airports in different countries. Was this my brain’s attempt to make sense of the air ambulance back to London?

Many of my madmories involve specific locations, showing I clearly had some understanding of where I was - my journey and the various hospitals and wards in which I stayed. When I was initially sedated I was expecting to be transferred to Miami. Despite the sedation, I must have been aware of the change of destination, as I have a madmory explicitly set in Fort Lauderdale, about trying to escape from hospital, impeded by leg restraints and overzealous nurses. Another madmory is located in an evangelical temple, a huge granite faux-classical monstrosity on the side of a Florida boulevard… your guess is as good as mine as to what inspired that one.

There are madmories of strange other patients, of disembodied characters in the walls and furniture, of bad-actor (in both senses) nurses… all of which I’m pretty confident have some basis in real people. And I’ve mentioned previously the hospital-as-tv-set / medics-as-actors and physiotherapy-in-China madmory universes. I know I answered “China” at one point when they did the “what’s your name? where are we?” routine of questions. At the time it was intensely real. My Chinese madmories mostly share specific details with one ICU ward, down to details of paint colours on the walls, and the locations of sharps bins. And yet they are embellished with jungle walks in the rain (at a time when I couldn’t walk), to reach the remote primary school that, for some reason, was the place we had to go to, for my physiotherapy.

Many of these delirious strands interweave. The ‘TV’ stuff is prominent in the flying madmories and later on in my experience at Kings. The same freaky other patients recur, travelling with me like some psychotic, schizophrenic voices. The sequence of movements by which a pair of nurses change the bedsheets under an immobile patient have featured for me as scenes in hospital-drama tv (both serious and spoof), where I’m the actor playing the patient. They’ve also featured as a form of repeated restraint, where every time I’m about to get out of bed, a team or nurses arrive, quickly put me through the changes, and finish by locking down my legs.

Anything that disturbed my awareness was, I think, a likely source of madmories. I was constantly plugged into IV drips, ECG electrodes, feeding tubes and the ventilator. I know I was particularly irritated by the thing on my finger measuring blood oxygen. In my madmories it sometimes attached my finger to other things in the room and I found myself struggling to disconnect. At one stage it was attached to the back of Marisa's head - the cord somehow becoming part of her hair. Sometimes there were wires and strings all over the place attaching things together all round the room, and it all depended on my finger. I'm sure, in my agitation, I spent plenty of time trying to take the thing off, and having the attendant nurse push it back on my finger. All the time, my brain was trying, it a lunatic way, to make sense of it.

I’ll spare you the details of the madmories I have associated with having a catheter…suffice it to say such madmories exist. And plenty more, to do with all sorts of intrusions and insults endured as a patient in ICU.

It’s unsettling and it leaves me wondering - worrying - quite what an ordeal I went through. I’m no longer confident that I slept through the worst of it. I think I experienced most of it - the endless awfulness, the imprisoning immobility, the weird repetitive routines of ICU - in a state of total confusion, momentarily making “sense” of what was happening to me before losing it again in the fog. I said in a recent post that “other people’s dreams are never interesting”, and yet here I am giving you chapter and verse about mine. Except they’re not dreams. And - as always with Dialm - they’re here with a purpose: partly therapeutic for me, partly to help my friends understand me, and partly on the off chance that someone else who has been through ICU might find this post and feel a little comforted about their own delusions. I’ve certainly taken some comfort, of late, in the stories of others I’ve found online

Potentially useful resources:
ICU Steps Charity supporting survivors and their families
ICU Delirium Some patient testimonials
A Waking Nightmare Short video of patients and medics experiences

Despite all this... I'm well. It would take more than a little psychosis to stop me! Off to Sussex for the Easter break, and can't wait.

4 comments:

Pippa said...

So sorry to hear this, even one of those madmories would freak me out, let alone lots of them....!?! We all have horrible dreams where we still remain aware that it is a dream, and that perhaps we can wake up from it, whereas by the sound of it, you were firmly stuck in your hallucinations. And as we all know, you are one of the cleverest people I have ever known, you have many more neurons than most, & better connected too! So I am sure they were firing on all cylinders! But the upside is, Alex, you can afford to lose more neurones too, than most people :-) Thinking of you, and hoping you take it easy on yourself, and take the time you need to recover. And how's about avoiding the long-haul trips, hey?!? There are plenty of stunning, hidden corners in the UK or even France :-)

Alex Bicknell said...

Thanks Pip. Yes, my range will be somewhat reduced, for now at least

Alex Bicknell said...

The day I went back on the ventilator, a madmory, by Alex B

It was a couple of days since I had had the ventilator removed, and I was no longer in ICU. I was having a bit of a cough. I had begun to understand that my lung capacity for life would be limited to whatever level we achieved during my hospital stay, and therefore if I wanted a larger lung capacity, I would need to embrace the pain threshold of low oxygen and push through it. Only by doing this would I, in the longer term, be well. The nurse was with me and encouraging me to cough harder and harder. So I did. Then the doctor came and produced a blue plastic tube thing about an inch long and half an inch wide, which she said she wanted to stick up my nose. She told me the pain would be brief, for a long term gain, so I consented. It was the most painful thing I have ever experienced. Soon, someone told me we needed to return to the ICU, and they pushed my bed through a tunnel in the ceiling and along a pipe to another place. By this time I was increasingly losing my visual awareness. I could hear doctors arguing. One telling another that “now we’re here”, she really wanted to do an episiotomy in my nose, while another said that they couldn’t do that procedure without a separate consent, which they didn’t have. I was in so much pain I shouted “No consent! No consent!” as loud as I could through the pain and coughing. Gradually the world began to reshape so that everything was centred on the blue thing in my nose. The whole world was two large air sacs - one was my lung, and the other was the world outside my lung, but I couldn’t tell which was which. One sac would inflate as the other deflated - with air rushing through the blue thing, and then back again. I couldn’t tell which way was breathing in and which way was breathing out. It became hypnotic - no longer painful in an “ow” sense, just all consuming, all encompassing. My medical team and me were floating in space. Each medic tending to a machine that measured some part of me. Some were above me, some below me. They were talking and I could sometimes follow the conversation. In turn they were removing bits - first the sheets, then parts of the bed and finally parts of my body l my legs, my arms, until all that remained was the blue thing and the rushing air. It stayed like this for some time. Then I could hear a question. “Shall we leave you puffing here, or try to get you to sleep?” “I vote sleep!” I shouted. So they began doing something whereby the blue thing would no longer be controlling the breathing but I would. I remember being scared I wouldn’t know how to breathe. I could hear the medics voices getting more concerned. Comments suggesting something was going wrong. “Very strange”. Finally I heard someone say “Oh well, it’s only a minor set back”, and at that point I must have entirely lost consciousness. The next thing I knew. I woke up, two days later, back on an ICU ward, with the ventilator in again.

Anonymous said...

My Goodness Alex-what an ordeal. Trust you to have the most insane psychotic mad memories involving crazy destinations and experiences-your mind was trying so hard to work it out. Hope you are feeling stronger and that some of these things float away like dreams rather than stay as memories -lots of love x