My Scoliosis Story

Up until 8 years ago, when I first started blogging, I didn’t realise just how common scoliosis was. Sure, I knew a couple of other people who had it, but most people I talked to had never even heard of it. And whenever I explained to people what it was they would often laugh and say “Oh, so you just have a bit of backache?” Well, I guess you could say that. But I think it affects people a lot more than by just having an achy back. And that’s why I’ve decided to share my story with you guys today …

Drawing of a lady with Scoliosis, a curvature of the spine

THE BEGINNING

I was around 12 or 13 when I found out that I had scoliosis. I was at my weekly dance lessons and we were doing an exercise similar to a sit up in our Theatre Craft class. The other girls could all do it fine, but I found that I struggled to sit up without putting my hands down on the floor to help me. Miss Debbie – my dance teacher – guessed what the problem was straight away because another one of her students had been diagnosed with the condition a few weeks earlier, and she knew what signs to look out for.

At the time I had no idea what scoliosis was, but, basically, it’s the abnormal twisting and curvature of the spine – usually first noticed by a change in the appearance of the back. Typical signs of scoliosis include a visibly curved spine, one shoulder being higher than the other, one shoulder or hip being more prominent than the other, clothes not sitting right when dressed, a prominent ribcage and/or a difference in leg lengths.

That Friday night Miss Debbie looked at my back and told my mum when she came to collect me that I’d been struggling with one of the exercises. She told her that she thought my spine may be twisted. And by the following Monday morning, I had an appointment with my GP to see whether or not she was right.

MY DIAGNOSIS

I don’t really remember much about that first appointment. But my GP agreed that she thought I had scoliosis and referred me to the Queen’s Medical Centre in Nottingham, who specialise in spinal studies and surgery. It wasn’t long until my first appointment with them, and they sent me for a special x-ray so they could determine just how much of a curve my spine had.

Standing as still as possible while being sandwiched between two panels as I was x-rayed was extremely uncomfortable and made me feel a little sick. And sadly, they went on to confirm that I did, in fact, have Scoliosis. All I can remember after that was sitting in the specialist’s office staring at the x-rays in front of me and wondering how the hell I wasn’t in absolute agony when my spine was in the state it was.

I must have asked him this at some point, as I remember him giving me a sympathetic smile and saying that it affects different people in different ways. And that the older I got the more likely it was that the pain would get worse. After that, I had to go back at regular intervals so the x-ray could be repeated. This was to check whether the curvature was getting any worse and to discuss whether or not I wanted to have my spine operated on and straightened out.

Looking back, I probably should have considered it more than I did. But at one of my appointments, I saw a different doctor, and he told me that if I had the op it might go wrong and I could end up paralysed and in a wheelchair for the rest of my life. Being really young at the time, this scared me to death and I decided then and there that having the op wasn’t an option. After all, the curve wasn’t really noticeable unless you knew what you were looking for, so no one ever pointed it out or asked about it.

ACCEPTING SCOLIOSIS & LEARNING TO LIVE WITH THE PAIN

Due to having to have regular x-rays at Queen’s Med, I’d often have to take a random day off school. So I decided to confide in my best friends, Jemma and Amy, about my condition. And they were really understanding about it. Jemma even told me that her cousin had the same problem, so she knew a little bit about it, which was really comforting.

Over the next few years, the curvature got a little worse with each hospital visit. And when I got to 18 I was finally discharged because I was still insisting that I didn’t want or need the operation to correct it. I wasn’t suffering from any pain back then, so it made sense to me to leave my spine well alone and just accept that my hip jutted out on one side a little. It was fine. I could live with that. But then I fell pregnant with Stacey, and that’s when the pain became noticeable.

I can’t remember exactly when it was that I realised my back was starting to become more painful, but I do know it was at some point towards the end of my pregnancy. My upper back was in agony, my lower back was in agony, and my neck was in agony. I had gone from feeling pretty ‘normal’ to being in pain every single day. And I hated it.

I hoped that the pain would go away once Stacey was born. And it did, for a while. But with each passing year, it seemed to get worse and worse, until I found myself complaining about it out loud. And it was then that I found out that people don’t tend to be very sympathetic about back pain. They’d just laugh and say that everyone experiences ‘office pain’ from being sat at work all day. But having experienced both office pain and scoliosis pain, I can assure you that they’re both very different.

When I was pregnant with Oscar back in 2013, I had very little scoliosis pain at all until I went into labour. People even told me that my spine looked a lot straighter than usual, and I was secretly hoping that once our little man arrived it would stay that way. Unfortunately, though, I wasn’t that lucky. And the pain soon came rushing back once my bump disappeared.

Since then my back has most definitely gotten a lot worse. A year or so after Oscar was born I had an excruciating pain in my back for well over a week that I just couldn’t get rid of no matter how hard I tried. I spent every night perched precariously on the edge of one of our reclining chairs as it was the only place I could get comfortable. And every time I nodded off, I’d move in my sleep and then wake up to a sharp, shooting pain that went from the top to the bottom of my spine. It was horrible. Especially as no amount of painkillers were helping.

I know I cried a lot that week. Probably more than I’d ever cried over my back if I’m honest. Because as well as being in so much pain, I could barely pick Oscar up and found it a massive struggle to keep changing his nappy. It’s safe to say that I felt like the worlds worst mummy back then.

Luckily, I’ve only experienced pain on this sort of level once since then – about a year and a half ago. And I think that’s what made me realise just how lucky I am not to struggle with my back as much as other people with scoliosis might do. Yes, it’s painful. And yes, when people look at me nowadays it’s much more obvious to see that I’ve got something wrong with me.

But, for the most part, I try not to let it affect my day-to-day life. I still take the kids out to do fun stuff on the weekends. I still enjoy trips to the theatre and nights out with friends. I even try to go for nice long walks whenever I can as a little gentle exercise does me the world of good.

I very rarely take any medication to help with the pain in my back as the only thing I’ve ever found that works is codeine, but I can’t take it anymore due to it causing me to hallucinate. Typical, huh!? I’m happy enough to just plod on as I am for now though. I’ve been told that one day my scoliosis might end up becoming so severe that I’ll have to use a wheelchair. But I know that if it ends up happening, I’ll cope. I mean, I really don’t have any other choice, do I?

THE FUTURE

The biggest worry I have about the future is that Stacey or Oscar will end up developing scoliosis too. Whenever Stacey complains of back pain I take her straight to the doctor. I know that probably sounds a little OTT but our family doctor is lovely and agrees that under the circumstances it’s better to get it checked than to just leave it. And so far there’s been nothing seriously wrong with her, which is such a relief.

As I mentioned before, I’m happy to just try and live my life as well as I possibly can at the moment. I’ve found lots of wonderful products that help me out on a daily basis, and I plan to write up a whole other post about those in the next couple of weeks. But other than that I don’t really think there’s much else I can do.

Ultimately I’m not going to let scoliosis and back pain define me. It may be a part of me, but it’s most definitely not who I am.

Life is good right now. I have so much to look forward to over the next few years. And despite the low times I’ve had in the past with my back, right now I’m one of the happiest girls in the world. And that’s all that matters.

My Scoliosis Story

Have you ever been affected by any of the things I’ve talked about in my post?
If so, why not let me know in the comments below.

Louise x

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