“How does it feel to be a patient and not a medic?” asked my amazing night nurse, H*. She’s two years younger than me, also did nursing as a postgrad, and loves the idea of working in ED, like me. We’ve decided we’d run a great unit together. One day.
When she asked me this question last night, my answer was one of frustration, desperation and fear. I’d had 2 hours sleep in about 36, I had been in pain for the vast majority of those, and I was relearning how to complete simple tasks (bending my leg, hobbling, using the toilet, washing) in different ways, with little control over the how or when.
Control is something that I have come to guard fiercely, and a year of disability has probably made me more obsessed with its maintenance. I have become determined to get paperwork sorted, purchase a wheelchair that *I* was comfortable with (more on her later), and constantly battled with a need to prove myself as being just as good a clinician, albeit one with physical limitations. Control is the one thing I have struggled with in the last 48hrs (which feels like a week!), more than pain or sleep deprivation. I want to choose which drugs I get and when and why. I want to go to the toilet how and when I want to, without having to ask healthcare assistants to ask physiotherapists how I’m ‘allowed’ to mobilise, and wait an hour for a vague response. Frankly, spoilt brat-esque, I want things done on my terms, in my own time, as I ask, because that way I feel I still have some autonomy. Looking around, I realise other people are taking other approaches to losing this control. One patient has the nurse syringe all of her oral meds into her mouth for her (I fight to give my own Dalteparin injections), while she stays bundled in her blankets. She seems happier than me. Another has her family heavily involved in every decision, and is clearly reassured knowing that they are there for her, taking the weight. Neither of these approaches would work for me, but there is part of me that envies them. I have leapt between despair and anger (I was only anticipating the despair), and cannot have been easy to care for over the last two days.
I’m snapping at those who love me, and I know I’m driving them mad. Yet those who are caring for me here, who barely know me and have no reason to love me, care anyway. The thing is, that I really need them to do that. My priority has to be recovery, regaining function, and getting out of here. To best way to do that, if I’m honest with myself, is to allow them to care for my immediate physical needs while I focus on getting my physiotherapy completed, and out of here as soon as I safely can. In short, I need to stop sweating the small stuff and trust them to take it over. They’re not perfect, and I need to find a balance, but currently, I’m leaning away, fighting to be in charge.
From a health professional perspective, I need to be in control at all times. What we see on wards and theatres is actually bloody terrifying if we stop and think about it. Control is certainly my way of dealing with that fear; I need protocols, and rationales and a system. I have been trained to see healthcare as a partnership between patient and their care provider, but that doesn’t mean that the two share identical roles, or even that their priorities match; they never fully can. I wrote a dissertation on this partnership within the neonatal setting (it’s riveting stuff, I can tell you), but living it is a hugely different experience. I need to hand over the small stuff. I need to let the physiotherapy team tell me, based on their vast experience and training, what they need from me, and simply to do it. That’s the easy part (and I struggled with that), but there’s so much more. I have to prioritise, save my energy, and accept that these incredible staff, of whom we should all be so proud, will do everything else for me if needed (which often it is!), and if they don’t do it how I would, that is probably no bad thing. The chances are, they won’t.
The lovely tea lady has arrived with breakfast. I like a big steaming mug of tea, that I can allow to become lukewarm before frantically drinking it all down, of exactly the strength I prefer. You know what though? Lovely tea lady brings tea in a plastic cup, a shade too strong, which is only ever Vesuvius-hot, or stone cold. But she brings it with a side order of political insight, bubbly conversation and a big smile at 0745, a welcome distraction from pain and nausea. I’d never get that from stepping into my kitchen alone. There’s a lot to be said for her method of making tea, and if I stop fighting to make my own, to control the minutiae, I get other benefits. Handing over the controls isn’t easy, and I need to maintain some independence for my own sanity, to cope with what is ultimately a terrifying experience up close.
H the nurse probably oversimplified her question (though I probably needed it, thanks to drug-induced brain fog). I can never ‘just’ be a patient, or ‘just’ be a medic, and it would be impossible to separate the two, but I do need to loosen the reins. That way I can really take control of the key aims for me – getting better and getting out, with sanity intact.
December 9, 2015 at 8:21 pm
I totally struggle with the control thing too and like things done in such a particular way. I have envied other people who seemed to take well to being looked after. I’m not ungrateful or rude but I get very angry at not being able to do things as I want. I guess being a control freak mixed with getting more dependent is not always a good combination but I also fight all the small stuff and think we’ll it’s my right to choose these things! Because the non chronically sick get to choose these things! Then i think about it all, stop being so blummin anal about everything and chill out!!! Well as you can see I’m not good at it and swing from one extreme to the other.. It’s nice to read that not everyone just takes the help and doesn’t question it but I realise it also about my insecurities just as it healthcare staff and carers not fully grasping how fearful insecure you can feel to loose any degree of autonomy and independence and choice.. No one knows until it happens to you.. I just wish I was a bit better at it! Sending hugsxxxxx
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