Tuesday, 26 March 2013

A story about my curves...

It's not often that I write personal blogs about...well my personal life, but after some encouragement from my beautiful friend Lauren I have decided to write about my Scoliosis experience.

I am aware that this sometimes painful condition rears its evil head in teenage years, especially girls, so it seems appropriate for me to write about it. Having come through the other side so to speak.

I was diagnosed with Scoliosis (curvature of the spine) when I was one. My mum noticed that my head was constantly tilted to the side, and there are pictures of me on my first birthday and it looks like my ear is stuck to my shoulder. Cute, but obviously quite scary for my parents who had no idea what was wrong.

Added to that I had Ventricular Septal Defect, basically holes in my heart, and I was not growing as well as I should have been for a toddler.
After many tests they could not diagnose me with any specific "syndrome" so the doctors basically just said I had these different issues that could be helped and managed.

To keep my spine as straight as it could be I was put into a back brace. When I was 2yo I was so small that this meant a full body cast from my neck to groin, as they couldn't make a plastic brace small enough. Awww. I must have stank. It's hard enough keeping an arm cast smelling clean, let alone a full body one.

My other braces included a horrendous contraption that went write up my neck to keep my head straight. Most of these I had to keep on 23 hours a day. I was brace free by 15 I think.

I have also had at least 7 (I can't really remember how many ha!) operations to insert titanium rods, fix broken rods (I have no idea how they broke, because they are pretty darn strong!) and eventually to fuse my spine so it wouldn't move anymore. After the spinal fusion I didn't have to wear back braces anymore. I can't really imagine how I coped with them for so long, but I guess if you are used to it then you just deal with it.

People who wear braces into their adult life, or who are just getting them for the first time..I applaud you.
You are brave and  resilient and I commend your strength to deal with braces, especially when it's warm outside! I used to hate going outside in the sun when I had to wear my brace, and it was only when I become brace free that I started loving the sun again.

A lot of people have mentioned pain with Scoliosis, and I must be honest, I have not really experienced any pain at all. I remember having sore hips every now and again, but nothing serious. I feel so lucky that I didn't experience the almost debilitating pain that some people get.
My curve is pretty much an "S" shape, one of which is around 90 degrees? I'm not sure really, I just went to the appointments and just did what they said.  Never listened to the medical jargon. I was only young!

In my adult life my curves haven't really affected me. I am small for my age (just under 4ft I think) but that has nothing to do with my Scoliosis. Nobody knows why i'm this small, I'm not technically a dwarf because I haven't been diagnosed with a syndrome. I am just small and proportioned with a squiggly back. Yes my back is rather lumpy, and I sometimes get self conscious wearing tops that would show off my back. But if I see a gorgeous dress/top that I want to wear I just leave my hair down and just don't think about it.

My condition doesn't define me, and it shouldn't define you too.
If you are suffering from scoliosis, just think it's just a moment in your life where you are going to have to deal with things. These things will only make you stronger as cliche as it sounds. Scoliosis is manageable and can be treated and

If you get through all that, thank you for reading.
If you would like to read another girl's story about her scoliosis journey please visit Shona's blog.
She is a lovely girl who is going through a tough time in her fight for some pain relief.
Keep going Shona, it will get easier :)


1 comment:

  1. Oh I love you! I am glad you wrote about it! It sounds like a big deal to me even though you don't really think about it .. its good to know, and im sure lots of people have or are now going through it! xxx