The Squiggly Spine Diaries
Hello and welcome to my first entry to the ‘Squiggly Spine Diaries’. I’m sure this is the part where I’m meant to tell you the purpose of this ‘diary’ – but I don’t actually know what that is…
To put it bluntly, I have “Adolescent Idiopathic Thoracic and Lumbar Scoliosis (double major, Lenke type C), aka a squiggly spine! In a nutshell, if you were to see my x-rays, my spine looks like an S shape if I was to stand profile to you and if I was to face you – weird, I know! As the name would suggest, I’ve had it since I was a teenager and they don’t know why (if a doctor ever tells you something is idiopathic, it means they don’t know why something is the way it is. It’s a bummer!). This causes various problems with various joints, chronic pain and general frustration. As I’ve had my squiggly spine for so long, it sometimes just exists - humming away in the background, letting me know it’s there but still allowing me get on with living the life of a twenty-something. More often than not, it growls at me, sending sharp nerve pains through my back, causing me to jerk randomly (it makes people stare sometimes, but you get used to it!). Other times, it takes a full-blown diva-style hissy fit, preventing me from doing anything other than lying flat on my bed, trying not to cry as the jerking will only cause more pain, and stopping me from sleeping and generally being said twenty-something. It is for this reason that in March 2015, I came to the decision to have an operation on my spine.
This sounds like such a drastic measure, but it is one that I have taken the time to think about and discuss with my incredible surgeon, my family and my wonderful fiancé, Greg – but more on them later. It is because of them, my incessant researching and asking my surgeon every question under the sun, that I am able to make such a big decision. I don’t want anyone reading this to think that this is the only way to alleviate back pain or pain of any kind – it is certainly not and I would not suggest this as a ‘Plan A’. This is probably my ‘Plan Z’. I have tried all sorts – from long-term physio, to pain killers, to ridiculous old wives tales to help get rid of my diva friend – the squiggly spine. Previously, I thought that spinal surgery was only meant for those who had a terrible, life altering disease or those who have been in accidents and needed urgent care. I never thought I would get to the stage where I would consider surgery, never mind decide to have it! I can assure you that this option was waaaaay down the list! Sadly, none of my attempts have been successful enough to alleviate the pain and prevent the need for surgery.
It is at this point I’d like to state the obvious by explaining that I am not a medical professional, everyone is different and one size does not fit all in any aspect of life, especially regarding our bodies. Do not see this as a blue-print or a ‘How To…’ manual for spinal issues or surgery. I would recommend seeking medical advice from a GP or specialist you trust, and if they don’t listen, find another.
I am currently studying Primary Education at Edinburgh University (Moray House), and I start third year in September… squeaky bum time! This has played a significant part in my decision making. Alongside the impact my squiggly spine is having on my ‘general quality of life for someone of my age’, suffering from chronic back pain is not conducive to being the best teacher I could, and want, to be… have you seen the size of those Primary One tables and chairs!? So cute, but sooo tiny! As I’m still at uni, the issue of timing is a concern I have regarding my spinal surgery. I’d like to have the surgery in May, which would enable me to recover over the summer, in time for going back to uni in September. That’s the plan in my head, but the NHS (the National Health Service, here in the UK) doesn’t really cater towards when a patient would like a procedure to be done, rather it focuses on the needs of the patient –something I’m grateful for in a lot of ways, so this might not happen. As I am against receiving private health care, this is not an option I am willing to consider unless it was an extreme life-or-death situation. Again, everyone is different but I’d rather be honest with you.
N.B. You will notice a theme of brutal honesty throughout this diary thingmy… I hope you’re ok with that!
This whole situation is an alien one for me. I don’t see myself as a particularly emotional person – I don’t cry at films or violin-playing TV adverts, yet this squiggly spine state of affairs has me going from 0 – 60, feeling every possible emotion under the sun! Sometimes the thought of being able to stand in front of Greg, completely straight and pain-free, and say ‘I do’, whilst smiling at my family and friends who have supported me, or should I say us, through everything, makes me so happy I could cry, to then instantly remember that this surgery carries the risk of a lot of serious complications which could leave us worse off than when we started. This makes me want to break down and forget about the whole thing and put up with living half the life I know I could be living. Then my mind shifts again, to the feeling of frustration that I have this rubbish spine thing in the first place… but that soon turns to pure anger at myself for being so selfish and that other people have a lot more hardship in their lives and live with more grace and dignity than I am at that point. Thankfully, my mind then drifts to our beautiful niece and nephew, and imagining being able to play with them more, running after them and lifting them without worrying if my back will spasm or if I’ll pay for the exertion for a week after. From there, my head floats off to Greg and I having children, being able to bend and twist and generally move without pain or fear that the next movement could be so painful that my knees give way underneath me. Then it snaps straight back to the thought of the possibility of paralysis which could prevent us having children in the first place… you get the jist. This has been my brain since March 2015. Jeeezo.
For those wanting to know more about my surgeon or the people around me, that might come in the next ‘Squiggly Spine Diaries’ entry – for now, just know they are a help. I like to consider myself as a fairly independent individual in terms of my emotions or relying on others, but even I have to admit that letting those closest to me even closer, has helped more than any medicine ever could. If they’re reading this, thank you for everything (and I promise you’ll get a better mention soon!).
I am aware this first entry is not as slick and polished as I’d like it to be, but that’s just how my mind works – random thoughts, flashing in and out of topics at 100mph – and I’d rather start as my brain probably means to go on. If I’ve already lost anyone in today’s ramblings, then I’m sorry. Imagine what it’s like to be me, trying to keep up with, well… me!
On that note, let’s go back to the ‘I don’t really know the purpose of this is’ bit…
I wish I knew. I wish I could tell you it’s to motivate and encourage those who have spinal issues or are facing scary surgery, or to show how this whole situation works in a blue-print fashion, or to create something really profound and spout wise and wonderful anecdotes or words of advice… but I am neither wise nor particularly wonderful. I suppose I’m writing this down… well, typing… to allow myself space. Space to moan, space to question, space to laugh, space to panic and space to maybe speak to anyone who lands on my little bit of interwebspaceness for a wee blether and to maybe share stories and lives with people who might otherwise have been strangers… aaaaannnddd breathe… (See! 100mph!)
I’m considering adding a wee ‘Top Tips’ type bit at the end of each diary entry, as and when the mood strikes. Not sure how it’ll work as I’m winging this whole thing, so please bear with me while I try to navigate this new aspect of my life…
Anyway, here’s my first instalment of my ‘Top Tips’…
1. Go with your gut instincts. About everything – what’s right for you, if you’re getting the care you need, if you’re making the right choices, if you trust those around you enough to take their opinion into consideration. Everything.
2. Take your time – I’ve been there. That moment where you want to give up and consider the ways you could rip your own spine out and you don’t care how drastic it seems… “…just get this %$&*@# &!@#ing thing out of me!” (It sounds like someone in labour, but I promise it’s not!). DO NOT MAKE ANY DECISIONS IN THIS STATE*. Things will be better tomorrow.
3. Make the most of your ‘good back days’ – lift your beautiful niece and nephew and tell them how beautiful (or big and strong if your nephew is 3+!) they are and squeeze the person you love as hard as you can, take your ‘good camera’ and take beautiful photos, because on ‘bad back days’ moving your arms at all can be a mission! Do whatever it is that makes a ‘good back day’ a GREAT day full stop! It’s what gets you through the bad ones…
*unless that decision includes lying flat on your back, eating your bodyweight in ice-cream and texting ridiculous things to your significant other that you may or may not remember in your pain-soaked state. In this instance, crack on!
Well, there you are. My first ever ‘Squiggly Spine Diaries’ entry. I feel like I should say ‘I hope you enjoyed it!’, but I also feel like that would be weird given what you’ve just read. If you are reading this, please say hello! Whether that’s a comment or on some sort of social media platform! (If it’s not already on here, I’ll put that information somewhere! I’d like to thank you for taking time to read this and explain that I can’t promise when the next entry will be put on here, as I’m truly just going to update this when it seems appropriate and when I feel like it. However, I plan to write on this at least once a month, but we’ll see!
Until next time…
Kirsty
xxx