The pain chronicles part 2: back to the future

I should have called the last part ‘requiem for a disc’, shouldn’t I? If you’re joining me for the first time here and you really like extended medical stories about back surgery, do I have a 3,500-word treat for you! Otherwise, if you a) already read that, b) don’t care or c) just want to get straight to the stuff about how I live with pain now, two surgeries later, as well as yet more extended medical stories then do settle in.

I’ll start with a list of things that I used to do without thinking, and which now give me pause. This is not for sympathy, but relatability for those with a list of their own – and a chance for those with no list to maybe register how life might look different for that friend, relative, colleague or random stranger on the bus.

  • Get straight out of bed and get dressed
  • Put on tights, socks or do up my own shoelaces first thing
  • Trim, file or paint my toenails
  • Sit on a hard wooden or plastic chair for longer than 30 minutes
  • Sit wedged between other people on the train, or nearest the window which requires balancing to climb over people, possibly holding a bag
  • Sit cross-legged on the floor
  • Pick up a dropped item in the first hour after getting up
  • Carry a heavy bag (especially if it’s not a backpack)
  • Walk in heels above an inch (not high, but not flat)
  • Stand on a train for longer than 30 minutes, particularly if it’s a line that lurches a lot
  • Sit in a theatre seat without copious legroom for more than two hours
  • Sit on a plane where the seat doesn’t recline for more than three hours (and that’s stretching it)
  • Lie in bed for longer than eight hours
  • Walk up a steep incline or down a steep decline
  • Walk on icy, wet or slippery surfaces, even dead flat
  • Run anywhere (especially on a hard surface)
  • Sleep on an unfamiliar bed, particularly if it’s a very hard or very soft mattress

Now, I do quite a lot of these things anyway – and some more elaborate things besides. It is true of me both that I have to lie on my back like an upside-down ladybird to put on tights of a morning and that I can do a slow and sweaty but basically competent vinyasa flow routine before bed. If you take no other message away from these posts than this one, it is that disability, pain and discomfort are not necessarily static states. More than just having good days and bad days, though that is also a thing, I have good hours and bad hours within a day. First thing in the morning is always, always a challenge. Last thing before bed I will inevitably be at my full range of motion, with the least pain. In between depends on a lot of factors.

Now, there are some things that are just out of the question. I cannot under any circumstances risk falling on my back or bum, but I’ve never liked ice skating anyway. I slipped on a wet cobblestone in Carnaby Street around August of 2014, and three months later I was back in the operating room. Interestingly, the damage was not immediate. Around that time I had noticed a dull but steady increase in lower back pain, which I put down to an old mattress (it couldn’t have helped) and lack of fitness. I took up yoga at work, and sometimes it helped and sometimes it didn’t. I forgot about the fall. About two months later, I was getting dressed and I was balancing on one leg to put on underwear. I felt – and heard – a sudden ‘crack’ in the right side of my back. My right leg was suddenly flooded with the oddest tingling sensation. “Oh shit,” I said.

Oh shit indeed.

After an MRI to confirm what I and my spinal surgeon already knew, the radiographer asked me if I’d had a fall or accident. “No,” I said, thinking that I hadn’t, not recently. The surprised “hmmm” I got in return unsettled me. A few hours later I remembered that jarring crash-landing as I hurried towards the office following a rainstorm. I’ve fallen only once since then, about 18 months ago when I slipped on some wet planking, and I instinctively turned to one side, preferring a badly bruised butt cheek to another hospital stay.

As it was a second go around, there was no waiting to see if my recalcitrant disc – the same one! Just slipped the other way – would pop back into place. The pain was not allowed to get as bad, and I had a lot more tingling and numbness, which was deeply disquieting; in my head my foot was fading away like Marty McFly’s hand. Surgery was scheduled, and this time they were going to give the disc a nip and tuck as well as shuffling it in. I was only going to get the one X-stop clip though, bringing the total along my spine up to four. As I waited to go into theatre there were delays, and as it ticked into the late afternoon the nurse blithely let slip, in front of my ashen mother, that as I was going in last I’d probably be taken to intensive care after the recovery room.

Seeing her face, the kindly nurse backtracked. It was procedure, she explained, for anyone coming out of surgery late, to make sure they got extra observations in the crucial first few hours. And second ops on the same site always feel a bit more acute – weirdly, it was the first time anyone had actually said this to me, so I went a shade lighter on the Pantone chart too – and although it wasn’t a long op (an hour max) I wouldn’t be out of recovery until around 9pm.

So now I was very hungry and scared. And yes, at 34 and a mum myself, I still had my mother with me in the hospital.

When I woke to the familiar heavy weight in my spine, the pain had once again subsided, but there was a new discomfort – a catheter. I was not going to be manhandled over cardboard bowls again, and I would likely have to lie down for a little longer before attempting to stand up. And when I did stand up, I’d now have a bag of wee attached via rubber tube to my groin to balance out the drip stand on the other arm, so I was definitely upgrading.

I was wheeled back to the room groggy and exhausted; hungry but not at all interested in eating. My parents, worried, were relieved to see I was not, in fact, taken to ICU, because the medical team were happy with my progress and felt I could be left to rest for the normal intervals, provided I was dosed up to my eyebrows with painkillers. After half an hour, as my parents’ relief resolved to bickering, I diplomatically slurred at them that they must be tired and should go home. Then I slept intermittently for what felt like forever.

I had it impressed upon me for some time that I must take all my doses of painkillers regularly. I was high as a kite on morphine for the first few hours, and I absolutely hated it. It was like everything bad about being drunk – slow, dizzy, confused – with none of the bright glittery edge of enjoyment. A year later I was served a social media memory through an app that told me that a few hours after surgery, in a rare lucid moment, I had posted an update to Facebook to say I now understood why Sherlock Holmes was such a miserable bastard. I refused any more morphine and the nurses laughed, saying I was the first person not to love it. They switched to codeine and paracetamol.

It was late the next day when the physiotherapist, a genial Dutch giant of whom I’d had the forewarning that “he will push you!”, turned up. If you’ve read part one, you’ll know that I’m prone to low blood pressure. It took me a long time just to turn over and sit up. I shuffled, very slowly, to the edge of the bed and took what felt like a year to put my feet in slippers. Giant Physio hefted my bag of wee with a cheery “I’ll carry this!”. It is my curse, it seems, to have medical chaps deal with my urine. That sounds wrong.

Anyway. I told Giant Physio that I was feeling a bit woozy. He suggested we take a stroll up to the nurse’s station – it was maybe 20 steps from my room, at the end of a corridor. He held my arm in one hand, the wee bag in the other (with the tube, yes, hanging down from under my gown, and no humiliation left behind), and off we went. The buzzing in my ears started softly, but increased in volume and tenacity with every pained step. I got to within five paces of the desk at the nurse’s station when I said I was going to faint.

It’s as well that Giant Physio was, indeed, giant. I was maybe 12lbs lighter then than now, but I was not, nor have I ever been, slight. He hooked an arm under each armpit (yes, still holding the wee bag), and the nurses scrabbled to get me an office chair to sit down. He rolled me back to my room in a manner I later referred to as the Alex P. Keaton Manouevre – a joke only a very specific range of people aged around 35-45 will get. So it can very truthfully be said that Giant Physio pushed me.

Having bundled me gently back into bed, he gave my knee a reassuring pat and left for the day. The nurses continued to ply me with painkillers and then ask me why I was asleep all the time and why I hadn’t done a bowel movement yet (I’m sorry, I know), codeine being known for two things: making you sleepy and stopping up your gut.

The next day I did actually manage to stand and walk without incident, and once I’d done this convincingly a few times the catheter was removed, which was not particularly pleasant but mercifully brief. I watched Despicable Me and liked it. I sent photos of my wrists to my husband to forewarn our daughter that mummy would look a bit weird and also not to, under any circumstances, attempt to pull the drip cannulas out of them. She arrived for a visit and immediately made a beeline for my wrists to attempt to pull the drips out. We watched more TV together and then she left with her dad, holding it together until the lift wherein she apparently started wailing “I want my mummy!” and did not stop until they were well on their way in the car.

I’m not big on having a constant stream of visitors, so I spent a few quiet days in my room watching TV and being force-fed prune juice by my main nurse (joke’s on you, lady – I didn’t really use the loo until I got home). I was meant to go home after three nights but they kept me in one more and I wasn’t altogether sorry about it, since it was peaceful and the food was really nice (I do have the immense privilege and benefit of private medical insurance, for which I feel very lucky in terms of the comfort of my stay). I was mildly irritated to find my drug-addled brain could not process words all that well, so the books I’d put aside to read during recovery didn’t really get a look in until days before I was due back at work, a couple of weeks later. I think I managed to gulp down The Gospel of Loki just before returning, which was exactly my cup of tea.

For the first few weeks I’d head to physio twice a week early, and then walk to Soho from there – about half an hour of slow, comfortable walking that my physio, the lovely Niko, encouraged. He also had the physiotherapist pushy gene, and took me through the paces of core exercises and bridge poses and leg lifts and sit ups and one where he got overambitious and I fell off the balance ball onto my face. We did the same routine at the beginning of each session, where I had to bend first forward than backwards as far as I could. I got a little further every time. When people at work asked me how recovery was going, I delighted in being able to touch my toes without even thinking about it.

I don’t know when in the next four years things started getting more difficult again, but eventually they did. I had a six week period of work where I had to carry a very heavy laptop back and forth to a client I was on sabbatical with which certainly didn’t help (about nine months after I complained I got a lighter laptop). I did have an old and crappy mattress. I wasn’t great at keeping up my physio exercises consistently, and dipped in and out of exercise – which, to be fair, I have always hated – in fits and starts. And now it’s been so long that I can’t quite remember when it began to be the case that no matter how brand new and great the bed, no matter how much stretching the night before… well, as much as these things help I will be in some level of pain with considerable stiffness every single morning.

As a small but important aside, while both jobs I was at when I had surgeries were extremely good about the time off and operations themselves, no workplace where you sit down for most of the day is particularly well set up for dealing with back pain. There are definitely better and worse office chairs and lots of ergonomic options you can ask for – balance balls, standing desks, foot rests etc. And if you work on a laptop, always, always ask for a keyboard and elevate your screen. But at the end of the day, sitting down for hours on end is always going to be a problem. The best physio advice I had was to set diary reminders to get up every 20-45 minutes. I drink a lot of tea and water in part to give myself the walk to the kitchen and back.

I still consider myself a lucky one. After a couple of hours up and about, I have a very reasonable range of movement back. I finally started a regular gym habit in November, and as long as I stick to certain machines I can get on with things. I haven’t yet progressed to working with a PT on my core; I’ll certainly need advice on that as weight bearing is complicated and many of the resistance machines can easily cause back pressure without the right guidance and form. I can hold a good posture on the elliptical and, on a good day, the upright bike; the reclining bike frustrates me as it doesn’t feel like I’m getting anywhere, but it does provide good back support. I go to the gym mainly for cardio, as along with a host of arthritic and musculoskeletal problems advancing from my mum’s side of the family, my dad’s packs a load of cardiovascular complaints. But I have noticed a small improvement in daily mobility and strength from building up the muscles in my legs to help support my back. Long may it continue.

However, the biggest issue with back support is always core strength, as those inner muscles form a kind of corset around the spine. I do not have the stamina or stability yet to manage a regular 1 hour plus yoga lesson with other people, so I practice extremely cautiously at home anywhere from once to four times a week depending on time and energy. I use Dana Falsetti’s programme, which is very much set up for bigger bodies and, despite her extraordinary athleticism, more limited bodies like mine. I’m very excited to attend an all-day workshop with her in February and her online classes include ones tailored for bulging discs and hip opening. The key for me is hamstring lengthening; hamstrings like mine, which are akin to steel bars, pull on the lower back unhelpfully, and the nature of the cardio I do doesn’t necessarily help with that element. So as well as always doing hamstring and quad stretches at the end of my cardio, being able to get into forward bends and down dogs is really helpful. That said, I can only achieve the kind of painless flexibility I need to do yoga by the end of the day, as I’m too stiff and sore first thing in the morning (some days I need help getting my shoes on). I have to sit elevated on a bolster, and many of my poses are supported by blocks, blankets and straps. And I will never be able to do a seated forward fold, even if I practiced for an hour a day forever. My back simply isn’t built to do that. Frankly, I feel grateful that, with a soft bend in the knee and enough preparatory cat-cow movements, I can usually manage a standing one.

I am, right now, fighting the urge to delete those two paragraphs about exercise. I included them because it felt incomplete not to talk about what I can do alongside what I can’t do; the balance was important to me. But whatever I write in this paragraph, I know I’m going to get the Helpful Advice. Yes, I’ve heard of pilates, yes I’ve tried it and there are reasons why I’m not doing it right now. Yes, I’ve heard of those types of yoga. No, I don’t want to go to your class just to try it. Yes, I’ve read the articles about the elliptical machine possibly not being great for the lower back. No, I can’t run, and not just because I’m unfit; there are medical reasons why it’s bad for me. I have tried CBD oil; it tasted like chewing a daisy chain and achieved nothing but mild nausea. I don’t take painkillers often – usually when back pain meets period pain. Please… I’m a whole grown up who’s had access to the internet for decades, as well as access to spinal surgeons, physiotherapists and family and friends with all sorts of similar conditions. Please don’t assume either that I haven’t heard of what worked for you or tried it. If I need your tips, I promise I will ask for them.

And this is where ongoing disability stories don’t really have a satisfying ending. I am much better, but I am not really well, and I don’t think I will ever be. It is only in the last year that I have come to characterise these issues that I manage as a form of disability; some mixture of internalised ableism and fear of being excluded has prevented me from accepting this for some time. I worry people will stop including me in social plans. As a woman and a mother who already faces sexism with ageism on the horizon, having the fear that employers might read this and choose someone else genuinely terrifies me but also I am lucky because, in person, you would not know there is anything wrong unless I told you. And if you Google me, find this and think “oh, not that candidate” then truly, we are not meant to be.

My two surgeries have been life-changing for me, and have prevented much more profound and prolonged pain. I can’t recommend them, because medical treatment doesn’t work like that, but if you’re in the same boat maybe you’ll find something here heartening or a comfort. I also have to square with my own contribution to the state I find myself in, which is not at all the case with every disability. In my specific case, though, I undoubtedly could have done more to prevent the ongoing issues I have, and I’m belatedly taking some steps to shore up against more issues in the future. I’m still only 38, and I take this seriously; a lifetime of putting the health of others before her own has given my mother extensive mobility restrictions – and while I loathe using someone with a disability as a cautionary tale, I also can’t ignore the promise of what awaits me if I am not careful. I lecture my daughter about over-stuffing her school bag and taxing her growing spine, and I nag my husband, who has hypermobility, about building strength in his legs to protect his knees.

Pain is such a very obvious physical symptom, but in the long term I think it is the mental aspect that eats at you. About once every six months I burst into frustrated tears usually because for the first time in a while I’ve had to ask for help with something seemingly simple, like getting my underwear on after a shower. I’m too young for this, goddamnit. When well-meaning colleagues suggest group bonding over ice skating or axe throwing or something else that would put me back on the surgeon’s table, it’s embarrassing to have to always be the one to say “you guys go ahead, I’ll be at the bar” (I’d rather be at the bar, though). A friend on Instagram asked about my strategies for managing this mental load, and I don’t know that I have any. I read a lot. I write a lot. I watch TV a lot. The irony of these very sedentary activities being good at distracting me from pain that gets worse when I’m sedentary is not lost on me. I’ve subscribed to more podcasts to encourage me to walk more. Walking at whatever pace I can cope with that day really is the finest remedy I’ve ever discovered for loosening up the tightness and limiting the next day’s hurts.

I leave you, then, on this note: a reminder that everyone around you could be, at any moment, dealing with a physical issue that you can’t see. It might be making them slower or angrier or weaker than you’d expect, and you have the option to make it easier or harder for them. And that’s true even if you are – as so many of us are – carrying some scars yourself. Chronic pain has both unique and universal challenges, but all of us have felt some pain at some time. We can stretch our empathy and compassion in that direction, and challenge our imaginations to think about what it’s like to carry it around all or most of the time, to a greater or lesser extent. So have a little patience, and stay kind. It can’t cure pain, but it can take a little of the mental weight of it away.

And now: some more tea.

 

 

4 Comments

  1. Argh my original comment was deleted due to a disobedient laptop! Thank you for your honesty and humour, and for reminding me to always be considerate. After my recent op, I realised how acute long-lasting symptoms and the mental turmoil which comes with them, can be. It’s only recently I was able to swim pain-free and I know it could take another 6 months to feel fully recovered. I realise I’m lucky but what a rollercoaster. Thank you for sharing and importantly, normalising surgery and on-going medical issues and for moving me as much as you have made me laugh, much love Vicki x

    Reply

    1. We all need the reminder don’t we – I know I don’t practice what I preach all the time! You’ve had a rough year my love and it’s heartening to see you getting back on form and going from strength to strength. I have no idea where you found as much energy as you did. Thank you always for being a generous cheerleader and all round good egg. 😘❤️

      Reply

  2. Alex, time ran off without me but I have come back to Part 2. May I just say… damn, woman!!! Ouch. I do have a distinct memory of having a massive back spasm going on in addition to every muscle I think I own hurting from an adventure when I was an ACO lifting a 106# dog into the truck the night before. At the time, I didn’t weigh a whole lot more and I knew he was a big boy but I didn’t know how big. Short version – I spent the next day biting the ass off of every bear (or human) that wandered in my field of vision. It wasn’t a great day in history. I cannot say that the pain you live with is similar but I sure know it can change a person’s attitude, often dramatically.

    As you’ve probably heard, medical care in the US is expensive, often crappy, and insurance coverage the regular folk can afford generally blows. I have vague knowledge of your health care system so your mention of private insurance caught me by the eyeball. I’m interested in what the difference is and how that works. I need to do some research!

    In the meantime, I applaud your hanging out at the bar, avoiding arm-wrestling matches even though I’m sure you could take down most of your colleagues, and dedicating your attention to things today that will matter for your tomorrows.

    Reply

    1. You are so kind to read at all – let alone come back on the regular! Thank you. Ironically, about a week after I posted this, my husband wrenched something in his back and was like ‘OH MY GOD I’M SO SORRY I KNEW IT WAS BAD BUT NOW I *KNOW* IT’ for the couple of weeks it took to fully recover. There’s something about experiencing it – however long for – that means you really, truly *get* it, even after the storm passes. And fortunately my situation is chronic but not acute – I can have times and days where I can forget there’s a problem, which is a blessing and privilege.

      I am, indeed, relieved that I do not have the US medical system to contend with, but I’m also fortune that my parents insured me for years which means I have now built up enough history to keep insuring myself – which effectively means an opportunity to shorten or skip NHS queues as well as avail myself of admittedly plusher and more private hospital rooms rather than the crapshoot of wards (which can be wonderful or can be… not wonderful). That said, I’ve seen the NHS pull off some extraordinary care for myself and loved ones. It just tends to be much better at dealing with emergency situations than chronic ones.

      Reply

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