Sarah Bowen: So, I must be fine, right?

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:

Many people are surprised to hear that I

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.

Many people are surprised to hear that I(1)

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.

If you live with chronic pain how do you deal with it?

What things help you cope?

What have you discovered that helps you both mentally and physically?

15 thoughts on “Sarah Bowen: So, I must be fine, right?”

  1. Oh my goodness Sarah. I can relate to your story in a lot of ways. I am living with chronic constant pain although I’m sure not to the level you are. I fractured my wrist very badly about 18 months ago and had surgery to put it all back together again. The surgery didn’t work and since then I’ve been dealing with doctors not knowing what to do and constant awful pain. I find a brace helps a lot and am on pain meds but the only other option is more surgery. I am reticent to go there as there is a chance it won’t work and it’s quite invasive- bone grafts, shortening of the ulna bone, etc. So.. I’m learning to live with the pain. I get where you’re coming from with keeping it to yourself and just carrying on. You’re an incredibly strong woman and my heart goes out to you. Thank you so much for sharing your story. Much love. x

    1. Thank you for reading Deb and taking the time to comment. I really feel for you, I think pain is pain no matter the level it’s still hard to live with. I hope you’re able to find some answers some and it works out for you!

  2. What a brilliant post Sarah!!! I have no idea the pain your go though- I have had many irritating digestive issue but nothing to the extent of what you feel everyday. I know how well u hide it, because I’m your best friend. In 4 years I think I have seen glimmers of your pain only a handful of times (and that’s only when u grip your waste it do and little stretch) your amazing- never complain- even though many in your shoes would (and have every right to). Your one of the most amazing mums I know and should be incredibly proud of yourself for coping how u do. Your a bloody champ, and I’m lucky to call u my BFF xox

  3. I was there to watch Sarah’s journey for her back surgery because I’m lucky enough to be her one and only sister. She showed amazing strength then and she still does. Sometimes we think of our goal and embark on that journey hoping it will be a smooth one, unfortunately, like Sarah it sometimes it isn’t. But luckily now she has her beautiful son and she has the ability to use laughter to get her through x

    1. Thanks sis. And of course one of my biggest motivators after the surgery to get better and out of that bloody back brace was to be the first to hold your baby girl (after her parents of course) and I was! You were such a big support to me and I’ll never forget it x

  4. Great post, Sarah. What a journey you have had. I have POTS and can relate to a lot of what you write here. To answer your questions about coping..

    Wow, it’s hard. I ask the same questions you do – all the time – and I always want to hear from others on how they manage to handle ongoing health challenges.

    I think what works best for me is trying to keep my sense of humor and – more than anything – staying connected to others. I think it’s important to build a community of people who are going through what you are, but – at the same time – to also maintain solid ties to the world of healthy people.

    I also think it’s important to find a balance between trying to “fix” things and focusing on the other aspects of one’s life.

    I personally find this a fine line to walk and am often trying to decide whether to keep trying to make things better or to just accept what I’ve got, as you write about above.

    I wish I had all the answers. I find coping is an ongoing challenge. Sometimes I feel like I’m doing okay with it, and at other times I really struggle to figure it out.

    Thanks for writing. Stay strong. We’re all in this together.

    1. Hi April, thanks so much for taking the time to comment. I agree, it’s all about finding a balance which is often a very fine line and ongoing struggle.
      I just googled POTS because I’d never heard of it before- wow, that sounds like it would be very hard to live!

  5. Occasionally I find a blogger that makes me sit and read while mumbling, Seriously, she nailed it, that is exactly how I feel! Well that is exactly how I feel about Rach from The Chronic-Ills of Rach.

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