Today on the blog Sarah Bowen is talking about Scoliosis, surgery and chronic pain. When I started up the ‘Meet my Peeps’ series earlier this year, to broaden the sharing and to introduce you to some of my favourite people, I knew that you would like them as much as I do. Many of my peeps, like me, have invisible illness or disability and all have chronic conditions. Things that just don’t go away. All of them are awesome people with relatable stories.
A lot of my ‘peeps’ are actually people I have never met in person. We meet online, in the patient forums, on portals related to chronic illness and also, in my bloggers group. Sarah is a fellow Pipster (that’s what we call the alumni from the Blog With Pip course) which is how we became blogging friends. She has a gorgeous blog called The Routine Queen where she writes about all aspects of being a mum and something dear to her heart, organisation. I first bonded with Sarah when she wrote about the challenges of being an introverted Mumma. You can read her post on that, here. Then we got talking and I discovered that Sarah too, has an invisible, chronic condition. She writes here about living beneath the radar.
Do you suffer from chronic pain, too? Come and say hi! Here’s Sarah:
Seven years ago, when I was twenty five years old I had major back surgery for scoliosis, a term used to describe curvature of the spine. The decision to have the surgery was a big one. I was told if I left my back as it was it would continue to get worse and could end up causing major health problems (think squashed organs and a wheelchair). But the real deciding factor for me was that the severity of the curve in my spine would make it difficult to carry and naturally birth a baby, something which I was looking forward to in the not so distant future. So the decision was made to have the surgery. Little did I know how much it would change my life.
Recovering from the surgery was intense. Almost three weeks in hospital and three months in a full back brace. At the beginning I couldn’t walk more than a few steps assisted before I was exhausted. Sitting for longer than a minute would leave me in tears. I couldn’t brush my hair, have a shower or go to the toilet unassisted. It was hell. I was told that after six months I would be ‘back to normal’ but its six years on and I’m still waiting.
There are lots of questions surrounding the surgery and my recovery. For example, I was told a small portion of my rib would be taken to gain access and help ‘fuse’ my spine together. I was told it would grow back (as the front of your ribs are actually cartilage not bone, they can regenerate). What actually happened was three of my ribs were removed and they never grew back. There was some other complications and lasting nerve damage. I am in pain every single day. Obviously not as intense as the first few months following surgery, but still, the pain is there.
I spent years looking for the answers. Why did this happen? What was causing the pain? How could I make it stop? I went to chiros, physios and osteos. I tried different forms of exercise and natural therapies. Nothing worked. After many hard days I had to face a hard realisation. This was how my body was now; this was how it was going to be.
Many people are surprised to hear that I am in constant pain. Because I rarely talk about it people assume I’m fine. I manage to live a normal life, I work, and I participate in normal activities so I must be fine right? I think for people that suffer from chronic pain there is a certain point where you just learn to live with it, your really don’t have any other choice. And so you get on with life. You stop talking about it because you’re sick of talking about it and you’re sure everyone is sick of hearing about it!
Since my surgery I have become a Mum. I have a three year old boy. When I was pregnant I was almost pain free (must’ve been those hormones, someone please learn to bottle that stuff!) but it quickly returned after giving birth. I’ve had to learn to manage. I could never carry my son on the right side of my body, it’s not easy for me to bend down and pick things up from the floor (not fun when you have toddler!) And I have to grit my teeth when people give me a hug because it really hurts! There are days when I’d love to just lie in bed with a heat pack on my back but of course when you’re a Mum you just can’t do that!
Cold weather is a killer, my body kind of just seizes up. Needless to say I’m not loving winter in Melbourne at the moment! I have days when I have a sook to my hubby about it, I might mention my back is particularly sore, on those days the pain is probably more of a 7 or 8 than its usual 5 out of 10. But most of the time I remain silent because I figure there’s nothing that can be done. I try not to think about it, I try to focus on other things and keep busy, that’s my way of coping.
Another thing that helps me cope is knowing I’m not alone. So when I came across Rach’s blog I was inspired to send her an email, I just needed to tell her ‘I get it’. I can really relate to so much of what Rach shares here on her blog. So I was extremely honoured when she asked me to share my story with her readers. And now that I’m here in this space I’d love to hear from you.