Seven years of spine pain
Living with an invisible illness
Scoliosis isn't an invisible illness, but it isn't exactly obvious to outsiders either.
Scoliosis is a curvature and rotation of the spine. It causes ribs, shoulders and hips all to sit unevenly, and for myself and most others living with it, it also causes chronic back pain.
I was diagnosed at 14 and soon after started experiencing daily back pain. Seven years later and I still suffer the pain. It has slowly increased over time and gotten to the point that I have had corrective surgery.
People don't understand chronic pain unless they've experienced it. I get the feeling a lot of the time people think I'm only in pain when I mention it. In reality, people should assume that I'm always in pain and if I mention it, it means it's bad - reaching the top of the pain scale.
Doctors don't even always understand. I had a scoliosis specialist tell me at the age of 15 that they didn't know why I was in pain and could live a completely normal life.
No one realised it had already totally changed my life. By this point I'd already given up going for walks, playing netball and three out of four of my dance classes.
I have managed to mentally deal with my chronic pain to still do some of the things I really love, but it has also affected a lot for me socially.
I am forever having to think about how my back might cope with certain situations or what else I have to get done on a particular day or week before accepting invitations to events, no matter how small.
Shopping used to be enjoyable, now I hate it. I get in and out as fast as I can. I think carefully about who I go with and how comfortable I will be to tell them I need a break or have to leave.
I have missed whole events, things other people might even find relaxing, because I'm too sore to go, and then worrying after that they might think I'm just using it as an excuse.
I have used combinations of medication, physio, chiropractor, good nutrition, massage and other therapies to try and help, not only with the pain, but to stop my curvature progressing. A lot of these things did help, to an extent. They didn't make the pain go away, but made it manageable for most of the time.
A year ago I had surgery to straighten my spine and stop it from getting worse. For some people this makes the pain go away instantly, for others - like me - it doesn't. My nerves are so used to sending off pain signals and my muscles are used to being tense and over working.
The doctors all say my pain should still calm down and eventually I won't need pain killers. I really hope they're right. For now I use some of the same strategies as before my surgery to deal with it.
Since my surgery last year, I have also developed fibromyalgia, which you can read a bit about here.
Most people seem to believe that because it's been a year since my surgery everything is better now. I'm all fixed. My pain is all gone. This is simply not true.
I think my general pain scale is lower then it was right before my surgery, but it's still there and now I have my fibro to add in to the mix.
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