Wednesday, 28 March 2018

Scoliosis Surgery: Honesty

Five months ago I came home from the hospital, and all I could do was cry. 
I cried and cried and cried, mourning the body I’d lost, and fearing the months ahead. 
I didn’t feel like I could do it. 
And five months on, I still don’t.

Nothing could have prepared me for how physically, mentally and emotionally difficult this would all be. Sure, I watched all of the YouTube videos I could find, and sure, I heard everyone saying it was the worst time of their life, but I told myself I could get through it, because it wouldn’t last forever. But here I am, five months on, and things are still so tough. In fact, they’re even tougher. Things might not be as physically difficult as they used to be... but now, I’m emotionally exhausted. 

Back then, everything was still new. Every tiny bit of progress felt exciting. I was hopeful for what was to come. But now it’s tedious, endless, torturous. It’s been so long, yet I still haven’t made half the progress I’d hoped to. I wake up every morning, and I just don't want to face another day of it. And though I want to keep heading toward the light at the end of the tunnel, I’m not even sure that there is one. Because right now, I’m trapped in the dark.

When will I feel normal again? 
Will I ever feel normal again? 
When will I make a complete recovery? 
Will I ever make a complete recovery?

At five months, I’m starting to lose my patience. I had it in my head: “People say you start to feel normal again at six months.” Six months. Six months. Six months. “You just have to hold out for six months.” Yet here I am, heading toward the six month mark, and I don’t even feel close to normal. And, if I’m being honest? That terrifies me.

I want my strength back. I want my energy back. I want my life back.

I’m 21 years old. I’ve just graduated from university. Everyone around me is moving on with their lives – getting houses, jobs, qualifications, Master degrees – and I’m trapped here. My present life consists of this empty, endless, agonising routine of pain, frustration, tiredness, repetitiveness, loneliness... And my future? Well... it’s blank. I can’t even begin to plan for it, because it’s impossible to picture. It’s impossible to know what I will and won’t be able to do, or when I will and won’t be able to do it. I feel trapped, and I feel empty. I keep pushing on every day, but it feels like I have nothing to keep pushing on for.

I watch everybody, posting their positive quotes, having their fun days out, building their futures... and I feel so detached from it all – stuck in my bed, or within my own four walls, or stuck in my body, that just won’t work the way I want it to. I want so badly to be a part of it all and it makes my heart hurt. I feel so left behind. I’m sick of having my life on hold, at the exact time that it should just be beginning.

But on top of it all – on top of all of this – is the guilt. The guilt that comes every time I ask “how is this fair?”, or “why is this happening to me?”, when there are people going through so much worse. There are people dying. There are people who’ve gone through this every single day of their lives, and have never known any different. Yet here I am, writing 600+ words of self-pity.

I said when I left the hospital that I’d have to take recovery “step by literal step at a time”. And I’m trying. I really am. But the more steps you take, the harder it gets. The more exhausted you become. And it’s even harder to keep going when you just can’t see the finish line.

Tuesday, 27 March 2018


they paint stories on our bodies
tales on our skin
of who we are
what we've been through
what we've done
and where we've been

the good, the bad, the ugly
the tragic, reckless, wild
battles lost
battles won
and everything in between

Monday, 26 March 2018

Scoliosis Surgery: An Update (Finally!)

If you've read my most recent blog posts (or caught any of my moany tweets), you’ll probably know that, five months ago, I underwent spinal fusion surgery for a condition called scoliosis (pronounced sko-lee-o-sis). Everything is explained in more detail in this post  but, in short, scoliosis is a medical condition “where the spine twists and curves to the side”.  

The surgery involved my surgeon straightening out my spine as much as possible, before fusing the bones together to try and prevent my spine from re-curving. To hold the bones in place while they fuse (which should take 1-2 years), two metal rods were placed on either side of my spine, and then attached using 18 metal screws. As long as there's no damage, breakage, or serious issues with the hardware, it should remain in my back for the rest of my life.

Pre-op vs. post-op X-Rays

Before my operation, I spent so much time reading and watching videos about other people’s experience with the surgery. It helped a lot – both when I was in hospital, and also now that I’m recovering at home – especially because the operation isn’t all that common (it’s performed on less than 0.1% of the population), so it can be quite hard to get a lot of information about it.

I knew I wanted to write about my own experience at one point in the hopes that it might help someone else, but I’ve been putting it off for a while now. Over the last few months, I’ve been anxiously waiting for my follow-up X-Ray and appointment with my surgeon, and I was ridiculously nervous to hear what he was going to say. There are a lot of things that can go wrong with spinal fusion surgery, and some people end up needing a second operation – or, in the worst cases, they might need several more. In all honesty, I didn’t feel ready to re-visit my hospital experience in writing until I knew for sure that I wouldn’t have to re-visit it in real life. (Or at least not any time soon, anyway!)

I was actually hoping to have an update by January, because spinal fusion patients normally have a follow-up X-Ray at 3 months to check that everything is okay with their hardware. Basically, everything needs to be correctly in place for the first 1-2 years while the spine is still healing, so they check to make sure that the hardware hasn’t moved, come loose, or become damaged or broken. If that’s the case, then they’ll need to re-operate  which, I'll be honest, was pretty much my worst nightmare.

My 3 month appointment was supposed to be in January, but of course this was the same month as the NHS-crisis-that-the-government-swore-to-god-wasn’t-a-crisis, so it ended up getting postponed until March. I’m not going to lie: I cried. A lot. I was so anxious to hear whether everything was okay or not, and the wait and the worry just felt like it was dragging on forever. Fortunately though, my appointment got cancelled a second time – but this time, it was rescheduled for February! I could’ve done a happy-dance. (...If, y’know, I hadn’t just had major spinal surgery.

I had the follow-up appointment a few weeks ago, and – praise. the. lord! – my surgeon told me that everything looks okay. I don’t think I’ve ever felt relief like it.

Other than that, I guess I’d be lying if I said I wasn’t struggling. My surgeon and my physiotherapist both say I’m doing well, but it doesn’t feel like it. Even though I’ve come a hell of a long way from not even being able to feed myself, I still haven’t made half as much progress as I’d hoped to by month five. I wasn’t at all prepared for how long, or how physically and emotionally difficult this would be. I really just want my life back. (But that’s a post for another time.)

I’m still struggling to do much writing (which is killing me), because sitting for long periods of time post-op still feels quite uncomfortable, and can sometimes get pretty painful. I’ve barely spent any time using a laptop since my surgery, but I really am hoping to get back into posting as best I can. I miss it so much, and I’ve got so much that I want to write about. Hopefully, I’ll have a new post up soon!

Until then, I’ll leave you with some cheeky pre-op and post-op Before and After shots. My scar is healing up nicely, and I'm also clearly getting better at learning how to stand straight, haha! My hips still aren't perfectly even and my body isn't perfectly straight, but it's lovely to be able to wear tight dresses now without feeling self-conscious about my un-even hips! (Not that I've been dressing up much lately, but I'm sure I'll get there!!)

Until next time!

(a new-and-improved)
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