Sunday, 20 July 2014

My Story - Part 1 (Before)

My story starts with my older sister being a know-it-all! She was studying Physical Education at university and she was learning about scoliosis and decided to use her eleven year old sister to practise her diagnostic skills. She made me touch my toes and announced to my mum that “Yes, I definitely had it”. Surprisingly, no one (not even me!) had noticed - but she was right, I was out of alignment and had a large lump on one shoulder blade and uneven hips! An out-of-date local GP told me I was going to be in plaster for 6 months. We were all in shock! But X-rays did confirm I had scoliosis, and a pretty severe case too. An S shaped curve measuring 52 and 54 degrees.  

I had two corrective surgeries when I was 11 and 16. While I often brush these off in my story, they were major surgeries for a young girl. Weeks in hospital and off school, rehabilitation, I had to wear a plastic brace for 6 months and have on-going therapy. In the end, the surgeons were happy because they were able to correct the curve and now my spine is straight, with the help of a rod, screws and bone grafts. It makes for a good show and tell X-ray.

My spine X-ray taken ~2009

I have had chronic back pain nearly my whole life since the surgeries. There have been good days and bad days. I returned to see my surgeon often and I would explain my pain but he would offer no real explanation or solution.  My pain was generally in my lower left hand side of my lumbar spine, generally around the area where vertebrae are fused together. More recently, bone scans indicated degeneration of the facet joints and further surgery (fusion to the sacrum) was suggested.  But I didn’t want to go down the surgical path again. Alternative therapies were tried with limited success. Partially because I think I never fully committed to their suggested exercises/routines because they never “magically” took the pain away, but also because a single physical approach did not address the physiological issues surrounding my pain.  I have also tried most prescription pain medications. The side effects of these are many and varied but I often would suffer severe constipation from codeine, nausea and motion sickness from the morphine based transdermal patches or effects on mood from the antidepressant range of pain killers. With each new drug I tried it wasn’t long before the mild easing of pain became ineffective. The long term use of prescription medication for my chronic pain was not the answer.

My general approach, on a day-to-day basis, was to cram everything I could into days when I felt good, leading to days of suffering because I had overdone it. I would ignore my pain, wish to be “normal” (read pain free – what is “normal” anyway?)  and just power ahead. I didn’t tell many people how awful I was feeling (except the inner sanctum - my husband, my mum). For everyone else I slapped on my brave face (and I got pretty good at it as far as I could tell!) As I have aged my flare-ups got worse and my ability to deal with them drastically decreased.  

My husband and I were always worried how I might go having a baby. I became pregnant in March 2007.  I was working fulltime and after coming home many nights in tears from the pain. I reduced my hours but then decided to resign when I was 5 months pregnant. Once I stopped working, the pain seemed a little better but this was most likely a result of the reduced stress and travel to and from the city. I was induced at 42 weeks and had an 8 hour labour. But it was all worth it when our beautiful daughter, Olivia arrived. She was a calm and easy to settle baby but all the changing, carrying, settling, picking up really took a toll on my back, particularly as she got bigger and heavier. I was having 2-3 days in severe pain (mostly in latter part of the day) and frequently needing help. I was depressed because I felt like I was unable to look after my child properly. I was often in tears about being a bad mother, feeling like I would never be able to run and play with her whenever she wanted to, pick her up and carry her around when she needed comforting. About a year after the birth (as those pregnancy hormones were fading and as she got heavier) I was near rock bottom.

I would become almost obsessed and consumed with my pain. My negative thoughts around my pain would escalate from thinking “I can’t deal with this” to “I am a hopeless mother/wife”, and “I am letting everyone down”. My husband referred to these thought processes as snowballs. I would get wound up catastrophising every idea, rehashing past mistakes, worrying and fearing future unknown pain events and rarely in the present moment. I went from a gentle snowflake to an avalanche, careering out of control down a dangerous emotional slope. I never even realised the destructive power these snowballs had… I was too consumed by my pain. I found it hard to look beyond it to see all the beautiful things that were still good in my life.  I had so much to be thankful for…but I just couldn’t see past the pain. And the difficult thing was I felt so alone. Despite the fact that 1 in 5 Australians suffer chronic pain and that so many people suffer in similar ways to me, I thought I was the only one doing things tough and suffering. I couldn’t see the true impact my condition was having on my family. They suffered too by watching me suffer. I felt I was such a burden to them. I actually believed they would be better off without me. Pain blurred my reality to such a degree that I could no longer see beyond it. I became so wrapped up in my misery that hope seemed an impossibility. 

Please don't stop reading (its a bit depressing isn't it!?)...If you have the time, read My Story - Part 2 (AFTER) because this is when I really changed my life and began to TAKE HOLD of my PAIN!

If you can associate with any of these symptoms, feelings, thoughts, experiences, please comment below and share!

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