The most common question I get asked about my back problems is “how did you slip your disc?”. And I usually reply: “I stood up”.
Over the years I’ve told bits of the story, always in person, to individuals. I want to write much more about how I deal with pain now, what it means now. But to do that, I find I need to explain the history first. And it’s a good medical story. Who doesn’t love a good medical story?
I don’t remember a time when my back wasn’t delicate, but I do remember the before and after of that first disc injury. And I think people who haven’t had one assume that it is much more dramatic than it actually is. To be fair, for some it might be. When it comes to back injuries, there are so many different ways to experience the pain and so nothing I say here can possibly be taken as any kind of medical advice or diagnostic manual. I’ve thought twice about writing this, and thrice and many times over again – but I also find that every time I have any sort of conversation with people about this there are many questions. So I felt it might finally be time to write down some of the things that happened to me, in the hope that it might strike a chord with others limping down a similar road. But the only advice I will give is please, please check out anything that seems wrong with a doctor. Yes, back pain sounds vague and you’ll often get told to just exercise and get on with it, but if there’s a chance of physiotherapy or more gentle intervention earlier, you’ll want to take it. So don’t be a hero.
I had my first round of physiotherapy as a teenager. I’d get muscle spasms so severe that once in a while I’d get stuck in a chair. Have you ever had that? Where you can’t get up but you also can’t sit back? It’s only happened to me a handful of times, but it’s terrible and, as with most bodily functions you can’t control, sort of funny after the fact but not really. They gave me muscle relaxants I could rarely take because they made me fall asleep (though that might have been the physics video that one time things were bad and I took one in school). I experienced a TENS machine for the first time, and wouldn’t use one again for another 15 years, until I was in labour and the spiky, sharp tickle was a welcome distraction from early stage contractions. But mostly I was just prone to trapped nerves, though generally fine – I did gymnastics (poorly only because I was large and awkward), hauled heavy suitcases, put flat pack furniture together, sat cross legged on hard floors without any more than the usual discomfort, sat in theatres and cinemas and on planes for hours, tied my own shoelaces of a morning, sat on hard chairs, bent to pick things up, slept on floors or any kind of mattress – all without thinking about it or needing several hours to warm my lower back up.
In 2005 I was 25, and my dad got me and a friend the opportunity for a cruise through work that went to Scandinavia and North and Eastern Europe and it was the amazing. My pal Kirsty – she’s still a great friend – and I packed our bags and headed for adventure. The second, maybe third stop was Helsinki. We headed out to explore for ourselves, and wound up at some bar cafe, tea or cokes or something in front of us. I was on a low square leatherette bar stool – what my mum called a ‘pouffe’ though I don’t think anyone raised in the 80s can say that without feeling weird. Not unusually, I needed to pee. I stood up, fairly sharply. And something went ‘ping’.
‘Ping’ is the way it’s often described and it’s accurate, I think, but also far too benign. Maybe it should be ‘crack’ or ‘pang’ or ‘pop’. Something that implies less of a pinball rebound and more of an essential break. A fundamental re-alignment. It’s not necessarily very painful at the time; I felt a small wrench, but nothing worse than a pulled muscle, and that’s exactly what I thought it was. I rubbed my lower back and we carried on. A couple of days later we were in St Petersburg, at the Hermitage, and I was really struggling. I thought maybe my cross body bag – mustard corduroy, long battered and chucked out – was too heavy. My hand didn’t stray much from rubbing rhythmically at my spine. We watched the ballet that night on wooden chairs, and I wriggled uncomfortably. That was June.
I drove to work in those days, from Ealing to Hendon, and then sat at a computer all day. The office was arranged over a top floor; the big main room had the developers and designers, and our little side office was tech support and QA. I was alone in it one day when I got stuck in my chair. I couldn’t sit back, and I couldn’t get up. It hurt too much to push down on my arms to haul myself out. After a few minutes of struggling and almost crying, I managed to reach my desk phone, and call the graphic designer at his desk in the other room; we were friends, and he had a low threshold for embarrassment. “Could you just pop over for a minute?” He ambled over, bemused. I got him to brace his arms and haul me up. It was quite the early impression, given I’d only been there a few months and was, theoretically, dating someone else (someone terrible who would totally break my heart) but we’ve just celebrated our tenth wedding anniversary. He still has to haul me out of chairs on occasion.
By August, things were pretty untenable. There were consistent sharp pains down my leg which hurt worse than the back ever did. They shot down the outside of my thigh and sent vicious, needling points into my kneecap and ankle bones. My mother, a veteran of back problems and sciatica who is now, sad to say, unable to walk, marched me to the doctor. A slipped disc was immediately suspected. I was sent for an MRI. As I had private medical insurance, I was able to choose an open MRI machine, which, if you are prone to claustrophobia, you should totally ask about. An MRI, if you’ve never experienced one, is a bit like I’d imagine a 1980s Berlin disco to be. You’re laid out in a tube or, in my case, a top and bottom sandwich (for my second one, years later, it was two sides with no roof). It is not at all dissimilar to having an X-ray in the sense that you take off everything metal and once you’re positioned, the radiographer disappears off behind a glass wall to do the important bit so that they’re not exposed to constant radiation. Don’t worry – the odd scan here and there will not turn you into Bruce Banner. But the thing about MRIs is that they’re incredibly goddamn loud. There is a rhythmic, heart-pounding thumping with each round of imaging. My first one was horrible only because I had to lie as flat as possible on my back and that was the one pose I could not do without considerable pain. My mother sat in the room burbling distracting nonsense about how there was only 30 seconds left (30 seconds that lasted for ten minutes) while I cried and cried at the terrible knifing, stabbing, needling torture going on in my left knee.
A slipped disc is when the gel-like padding between the vertebrae slips out of place. In my case, the L4/5 disc had lurched drunkenly out of its socket, pressing hard on the sciatic nerve, which was why the bulk of the pain I experienced was in my leg. The ones above and below looked a bit worrying too. The first bit of advice you’ll always get with a slipped disc is to leave it well alone; most do right themselves. But you should still see a doctor to confirm what it actually is and the best way forward. Circumstances vary massively due to all manner of things from other general health to placement on your back to how many discs to how long it’s been like that etc etc. And you can have sciatica without a slipped disc. So go and be properly diagnosed, get in the thumpy disco tube and find out what’s really going on in there.
I’m a very reticent drug-taker. I don’t like the idea that I might cause further injury by not knowing how much it hurts. This is a stupid attitude; ibuprofen is an NSAID – non-steroidal anti-inflammatory drug – and assuming you’re safe to take it and are advised to, it can be very helpful in calming down acute pain. As it is all sore and inflamed, ice can be as effective as heat – if not more so – in taking the edge off. It is a sad irony that I really bloody hate being cold, but Deep Freeze spray helped far more than Deep Heat, although it was a fraction as comforting. I was also given Celebrex, a direct anti-inflammatory, since the last time I’d had the more common option, Voltarol, post-appendix surgery when I was 16, it had caused me to vomit up everything I ate and drank, including water, for four days straight. Remember that was 1996, however, and things have changed; if your doctor gives you something, ask all the questions you want but don’t rely on my account as relevant to you.
I was advised to give it a month to try and settle on its own. By now it was getting hard to walk. I parked no more than two or three minutes’ walk from the office door, in a residential side street. By late October my surgery was scheduled, and the last time I drove myself home before surgery it took me fifteen minutes and numerous stops to sit on people’s garden walls to walk the few hundred yards to the car. The pain in my leg made me limp wearily, and I moved slowly and hesitantly, finding movement painful and standing painful and sitting painful. I worked from home for a bit before I went into hospital. The only way I could be comfortable was lying down on my left side, with my laptop balanced on my right hip and my upper body twisted round; the physiotherapist explained this might well be a position that was taking the pressure off my sciatic nerve. She told me to sit or lie however I wanted and just get through it.
The night before the surgery I couldn’t sleep. I had my tonsils out when I was three and my appendix out when I was 16 and I’m not scared of operations, apart from I think a nervous frisson about going under general anaesthetic. I couldn’t sleep because there was simply no position left that I could lie or sit in that didn’t hurt. I crept down to the living room and that’s where my mum found me in the morning, curled painfully over the arm of a chair in a weirdly contorted pose, crying.
It’s common for anaesthetists to tell you to count backwards from 10 when a general anaesthetic is administered. You go in starving hungry as it’s nil by mouth for hours before. They wheel you into the pre-op room; I don’t know what it looks like since they’ve always taken my glasses away by then. You can’t wear nail varnish, because they watch the color of your nail beds for any sign of a dip in oxygen concentration. A heart rate monitor is popped on your thumb. There’s a sharp prick in your elbow, and then a cold ribbon up the veins of your arm.
Since that operation I’ve had my gallbladder removed, a wisdom tooth taken out and a second disc surgery, nine years after the first. I’ve never made it past seven before blacking out.
The surgery I had was a spinal stenosis surgery known as a X-stop procedure. It’s not, as I understand it, all that common an approach. It doesn’t always involve shaving off any of the disc itself and I believe that first time they did not (a little came off in round two). It was more shuffling the disc into place and then putting titanium composite clips around my spine that hold the disc in place while allowing a considerable amount of flexibility to remain – which is why it’s sometimes chosen over vertebrae fusion if the option is there. I have three of these bolts on the left hand side, as the surgeon opted to secure the discs above and below the problem child. They look in X-rays a bit like those plastic tags you get on clothes where the ball goes through the hole and then you can’t pull it back out again. When I was pregnant in 2010 I showed my X-rays to the anaesthetist at Ealing Hospital in case I needed an epidural; I planned a home birth but you never know, do you? He had never seen anything like it, and made notes about where to place his needle if necessary. I had my home birth.
Back in 2005, I woke up lying flat out, dizzy and blurry. Of course I’m always blurry when I wake up; I’m outstandingly myopic and make a party trick out of getting other people to try on my glasses. But I think I was extra blurry. There’s a description in The Secret History of Henry coming out of a migraine by becoming aware of a burning seam of light from the curtain in the corner of his eye. I woke like this, but the whole room was burning. Recovery rooms are so bright and white and disorientating. Like the time I woke up after my appendicectomy, and the person observing me told me Pete Sampras had lost and I was very confused about what this Greek-sounding man had mislaid.
I remember two thoughts. The first was that I thought they’d made a mistake and accidentally sewn a sizeable house brick into my spine. I felt nailed to the bed, weighted down like a stack of papers under a paperweight, except the paperweight was in my lower back. You know that scene in Thor, where he pins Loki under Mjölnir? The second thought was more welcome. For the first time in five months, I did not feel pain in my leg.
I had to lie flat for 12 hours, with a drip full of fluids in my arm. I was also incredibly thirsty and sipped water through an angled straw, lying down. My mother fed me bites of cheese sandwich when the anaesthesia nausea subsided. I felt like an infant again as she worried about me choking; my poor mum has had to watch me be knocked out over and over again: at three, at 16, at 25, at 29, at 31, at 34. I had the same anaesthetist four times – she had him once too. I told him this just before going under; he quipped that a regular patient of my spinal surgeon’s has a running joke that she’s slept with the anaethetist more than she has with her own husband. Anyway. I was lying there, pinned down and being filled with fluid and the thing is that I have well-functioning kidneys and what goes in must come out. On this occasion they had not fitted me with a catheter, so I was unclear how this was going to be achieved. Small cardboard bowls were the answer.
I promised myself when I sat down to write this that no humiliating detail would be left out. You can skip the next two paragraphs if decorum is your thing. The first time they popped the bowl under me, tipping my lead weight back gently and sliding it under me – a nice woman whose name I’ve forgotten and Doug, the Boston nurse who talked to me about Greek islands – I could not pee. I could not do it. I had spent 22 years not peeing in bed, and that kind of training sticks. First I made everyone but my mum leave the room. Then I made my mum leave the room. Then, in desperation, I stuck my hand in my glass of lukewarm water. Thirty seconds passed and, finally, relief. The next time was easier.
Around the fourth time I needed to pee that night – because my heavens drips make you want to pee – the bowl wasn’t positioned quite right and it spilled. So now there I am, alone in a hospital room at midnight, covered in pee, my so-called boyfriend hasn’t checked on me (I told you he was the most awful person but I was also undignified and delusional), my poor exhausted mum has had to go home… and I have a male nurse and oh holy hell. They changed the sheets under me, that nice woman and Doug, speaking softly and smiling kindly and using a system of slippery sheets, like the weird plastic slide they’d used to shuffle me off the surgery trolley and into my bed. Doug had grey-blond hair and a crinkly eyed smile and a lazy New England twang that I’ve always enjoyed (have you seen Quiz Show? I love Quiz Show) and he and the nice woman had that calm, glacial competence that makes me love nurses so much. I’ve always preferred them to doctors.
At about 4am, Doug told me my twelve hours were up, and if I wanted to pee I should try to get to the loo. When you have lower back surgery, there’s a method for standing up. First, roll onto the side nearest the loo door (it was my left). Then you use your top arm to brace against the bedsheets in front of your chest. The idea is to swing up in a fluid motion so your back stays as straight as possible. Your bottom arm can do the final bit of shoving up. It took me about ten minutes. Then I was sitting upright, and a little dizzy. I have low blood pressure, always have, and I’m prone to white-outs.
I trundled ever so slowly the three or four steps to the bathroom door. I was amused by taking my drip stand with me for some reason. Sitting down on a toilet does not appear to be a complex manoeuvre requiring the co-ordination of several motor systems, but having made the Herculean effort to get upright and straighten my knees, my joints were in no hurry to try any other positions. I clutched the bars – maybe Doug’s arm? I can’t remember – and was suddenly grateful for the horrible hospital gown with its gaping backside vulnerability. I could not have pulled down pants under any circumstances, and the last dregs of my dignity could not have accepted anyone else doing it for me.
I was in hospital for four nights. I watched the final of The X Factor; Shayne Ward won. Colleagues from work came to visit me – not the graphic designer, it was Shabbat and he was with his parents, but he got to make up for this nearly a decade later bringing our four-year-old to see Mama in recovery. I was given Tramadol for pain and the resultant dream about beating a snake to death with a small bottle of Evian while in a prison holding cell, only to find the snake was an electrical wire sheathed in purple plastic, was quite something, let me tell you. My parents nursed me through another week and a half at home, and then I went back to work, with several weeks of physio twice weekly. By January, I did a trade show where I had to stand all day.
The pain was gone. For months I had twinges of pain or tingling in my leg which, the surgeon explained, was scar tissue on my sciatic nerve healing. But the daily agony that had coloured every day in angry shades of red had gone, and once the heavy weight had lifted from my lower back with recovery it was like it took another 10lbs with it. Once I adjusted to this new world, I was delirious with the kind of happiness you can only have when you know personally what the alternative is; I don’t say that to glorify it, since I’d undo the euphoria to undo the torment that came before. But if it must be, I’ll take my silver linings where I can find them. The pain of an injured spine reverberates throughout the body; there is no movement that does not affect it. Even sitting in a car perfectly still can be agony as the vehicle jolts. Sitting down for too long is painful. Lying down for too long is painful. Standing still for too long is the absolute bloody worst. Walking is okay, until it’s not. To move through the world with your pain reduced or even removed is a precious gift, and to live in 24 hour pain is a mental health burden I wouldn’t wish on my worst enemy (sad to say, my mother lives it and it breaks my heart every single day). These days I have a mixed but, for now, manageable bag of pains and problems, but we’ll get to that.
It would be another decade before I had to deal with consistent daily pain and another surgery, and in that time I taxed my body through several house moves and a pregnancy. The story of that is for part two, along with how I have come to terms with this level of disability, ways I manage it and what that means for me about being in the world.
Until then, thanks for reading.