Scoliosis awareness week - June 2016

To help raise awareness about #scoliosis, I am sharing a brief version of my journey. Enjoy!

I was born with scoliosis, a pronounced “s” shaped curvature of the spine. The severity of scoliosis is often measured in a Cobb angle as determined on X-rays. Mine was around 53/54 degres when diagnosed. Corrective surgeries at the ages of 11 and 16 straightened my spine with steel rods, pins and fusion (see pictures below). So, technically I have a straight spine but the restricted movement did result in long term chronic pain. I spent about 20 years in the medical roundabout trying every type of pain medication, seeing a blur of specialists/practitioners all in pursuit of an elusive cure or solution or even a reason for my pain. My general approach was to cram everything I could into days when I felt good, leading to days of pain because I had overdone it. I would ignore my pain and fight against it. I was often angry or ashamed that my body just kept letting me down. As I got older my flare-ups got worse and my ability to deal with them decreased.  I would become almost obsessed and consumed with my pain. My negative thoughts around my pain would escalate from a strained struggle to catastrophising and generalizing to a self loathing and hopelessness. I felt like I was always letting people down. I struggled with comparison between some self set idea of perfection (which was probably pain free) and the reality of daily pain. After my first child was born, I became withdrawn, depressed and drowning in a feeling of hopelessness. I was near rock bottom. So near I thought that my family would be better without me.

Enter my caring and insightful GP. He referred me to the Barbra Walker Centre for Pain Management at St Vincent’s hospital in Melbourne. After a 6 month wait and a number of sessions with their psychologist,  I was recommended to attend their 3 week, hospital-based self pain management course. I am not exaggerating to say it turned my life around. It gave me the whack-in-the-face wakeup call I needed. They supported me to come off all medications and learn techniques to deal with my pain. By accepting that pain was just a part of who I am, I was able to take control of my own health and wellbeing. I learnt how my negative thoughts around pain would amplify my pain experience.  I also learnt that a little exercise is better than nothing and that resting can often make the problem worse through deconditioning muscles due to a lack of activity. I became disciplined and educated enough to self manage my pain. This provided a long term solution when medical science could do nothing further to ease my pain beyond offering a bandaid (pill) solution. With the assistance of the clinic I came off all my pain medications (a harrowing withdrawal experience!) and have not had a pain killer in the past 6 years!!

Attending the pain management clinic changed the way I viewed my pain and how I responded to it. Up until this point I had let my pain rule my life. Now I use daily exercise and mindfulness to overcome the mental and physical challenges to self manage my pain. I have gained the strength and confidence to resume my social and day to day activities with confidence. I have become better at communicating my situation and my needs to my family and friends. I am more mindful in my daily activities to ensure I do not over do it. I break down activities into manageable chunks with scheduled breaks. This pacing technique allows me to do the things I want to do despite the pain on any given day and does not let pain dictate my activity levels. More recently, I have researched nutrition and its impact on my health. I have been following a whole foods healthy diet. I believe this was the key to unlocking that final piece of the puzzle. With the right energy in (good quality, nutrient dense real foods) I now have more energy and this gives me the strength and vitality to continue to manage my pain effectively. I also see a chiropractor and osteopath for scoliosis specific treatment and exercises. 

I also face a new scoliosis challenge. I noticed some "uneven-ness" in my son last year (aged 7). He also was diagnosed and has curves around 20 degrees cobb angle. He now wears a Spinecor brace to manage his curve so we can (hopefully) avoid surgery in the future. 

My story isn’t a perfect one and I’m still working on it. I have bad days and unhelpful thoughts creep in and sometimes I still over do it. But now, I don’t beat myself up about it, I just get up, keep moving because I want to be the best version of myself I can be, for myself, and for my family and friends. I want to share with other chronic pain sufferers that I’ve been down that road too but I want them to know there is another way. By accepting and taking hold of my pain I have become the one in control.  With this disciplined approach I have the power and the freedom to live my life the way I want to live it. The pain will always be there but my life is full and rich.

Come visit me and follow my journey at www.takenholdofpain.com

Finding Balance

Hello dear web friends. Sorry I have been absent for a while. I’m feeling like I am over committed and I’m not hitting my targets! When I started this blog, it was my intention to post every two weeks. While I often think it would be nice to sit and write all day long and post more regularly, I am conscious of my other life commitments. My family, my home, my new fledgling business and, most importantly, to my own self management priorities – daily stretching, meditation, pacing activities. So as you can imagine, sometimes I have a bit of a struggle with balance.

Balance seemed like a good topic for this blog. I was talking with my daughter recently about healthy food choices. She is learning this at school (and, don’t worry, this will be a whole separate blogpost about this issue in itself!). She asked me what I thought was the most important thing to learn about food. I took a while to answer her. I needed to tread carefully. At seven, she is at that precious age where impressionable meets potentially detrimental. I responded with a single word: balance. There is no need to be too strict or too relaxed. Give your body what it needs and occasionally what it wants. But I wanted to be clear to her that it is about balance.

In every moment we have a choice and balance is about the choices we make. There is the choice between doing what is easy (in the moment) and what is right. This is the terminology used in a book I read recently called “The Miracle Morning” by Hal Elrod.  In terms of self managing chronic pain, it is choosing to do something other than what I know is the right thing for managing my pain. For example:

Right: Being mindfully aware of my movements as I engage in daily activities and stopping when I need to, being aware of pacing. Easy: Acting on auto-pilot and powering through to ensure jobs get done.

Right: Spending the time to prepare a healthy, nutrient-dense meal. Easy: grabbing some quick packaged food or eating something I know is not good for me but is quick to prepare (i.e. a sandwich).

Right: Meditation practice, being aware of thoughts, emotions and physical sensations. Easy: Skipping it, falling asleep, watching TV and zoning out.

Right: Doing exercise that strengthens my muscles and/or increases flexibility. Easy: Making excuses or putting it off.

Balance and choice also comes down to making a strong decision to put  the long term gain before a short term benefit. What do I truly want in this moment? Will my decision be in alignment with what I truly believe in? Do I want to spend quality time with my children? Am I craving something sweet like chocolate? Do I want to sleep? It is sometimes difficult, in the present moment, to choose the option that will result in a long term gain. And here is where I feel I need to just be really annoying and to start contradicting myself. I am also certain that when managing pain, we need to be gentle with ourselves. We all make mistakes; we all have days when we just don’t feel like it. So, although it sounds contradictory, I also believe balance means being gentle. Make allowances and don’t beat yourself up over mistakes. Some days you will need to take the easy option. If it is only, every now and again, that is fine.

Having said that, I think there is a concept here which might be relevant. It is learned helplessness. I have been on this ride for 20 years. The choice to do what is easy and to subsequently block my feelings of pain had become an ingrained habit. Old habits die hard.  I am getting much better at making those strong choices on a moment by moment basis. What is even more interesting is that each time I do make those new connections, my brain is getting stronger. The brain can change and so those old habits, over time, will die and new habits can begin to flourish.

The problem is, when things get out of balance, they crash. I have experienced this and I am sure you have too. You may teeter at a tipping point for a while but, sooner or later, if things remain out of balance, a crash will come. With chronic pain, the crash can be big and difficult to recover from. Even as I write this, I am struck down with a bad cold. With my balance at a precarious tipping point, my immune system is compromised and I have become run down.
 

So I want to provide a few small tips to help you maintain (or at least become aware) of balance. I am sure by now you realise, I am not perfect and I am still figuring this all out but I hope some of these comments help. Please, by all means, get in touch with me, leave comments below. If you have some ideas for helping maintain balance then please share. Your ideas might just help someone avoid their own tipping point.

It is okay to say NO. Even though I know I am not very good at following this bit of advice, I do know that you cannot please everyone. People can often put pressure on you to do things, to be involved, to help them.  Just be honest and say something like “I would love to help but that is a bit beyond my capabilities at this time”. I am sure people would prefer your honesty rather than trying and failing or pulling out at the last minute.  Be realistic with your time. Ask yourself how long will this task take? How much “available” time do I really have? This is definitely an area where I struggle because I quickly forget how much time it takes to do the tasks I am already committed to.

Question your tasks list. I heard on a podcast recently a tip from a book about decluttering. You only need ask one question: does this thing bring me joy? If the answer is no then it goes. In a similar way, you can declutter your to-do list. Start by asking, does it align with my core values? Will it help me achieve my goals? Is it important to me? Is it urgent? There is a sign up near my washing machine that says simply “Does this task really need to be done right now?” It is to help me remember pacing and to make me stop and question if I could be spending my time more wisely. So, look at the jobs you need to do and prioritise them – important and aligning with your goals first, urgent afterwards.  This is based on a concept in the book "7 habits of highly effective people" by Stephen R. Covey

Sound it out with someone. I am very lucky to have a husband who is always happy to have me bounce ideas off him. We will often have a good conversation (often after the kids are in bed) about what we both having coming up. He is protective by nature and is quite quick to challenge whether I am overdoing it. So if you are feeling a bit stuck or overwhelmed or concerned your balance is at tipping point, talk it over with someone you trust, ask for advice or help.

Breathe and acknowledge, you are enough. This is difficult for me, probably for everyone. We think we need to be superhuman and hit all these massive items on our to-do list. But deep down, we are all struggling with something; we are all feeling a bit like we don’t quite measure up. How about dropping the standard for a while? How about acknowledging what we have achieved and cutting ourselves a break. You are enough.

Lastly I just wanted to let you know what I have been up to. Some of my recent commitments have been to local projects. I am teaching local “how to self-manage chronic pain” courses. I am organising a National Pain Week event with a range of guest speakers all about self management. But I really wanted to tell you about the lovely group I have helped to establish...The Wellness Support Group. We are a locally based, peer-run support group but we focus on lifestyle solutions to pain. This is no pity party! We are active, solutions focused and really positive in our attitude and our relationships. If this sounds like something you want to know more about, I am happy to help people establish their own local groups. I can explain how we went about it and even provide a copy of our “draft mission statement” which outlines who we are and what we do. It’s just a great bunch of people supporting each in a relaxed environment. Please feel free to email me if you want more information on this.

And, not so locally, if you have not had the chance yet, please check out my new podcast with Carole Staveley called Health Champions in Action. If you like what you hear, please leave us a rating in iTunes or follow along on our Facebook Page!  
 

Until next time, stay balanced. X.


www.healthchampionsinaction.com

Is FEAR holding you back? A 3 step process to overcome fear.

One of my biggest concerns when I undertook my pain management course was the fear of failure. What if I can’t do this? What if I can’t change my automatic thoughts/behaviours from continuing to surface? What if old habits really do die hard? What if I keep choosing rest over activity? What if I give in to old food cravings and loose the discipline? While I was super motivated to change (I didn’t want to keep going the way I was and I was desperate to prevent any more darkest days). I was also really scared I wouldn’t be strong enough to commit.

That’s a lot of fear and worry about the future. A future that may not even occur. And while I was wasting all that time fearing my possible failure, what was I doing in the present moment? Nothing. Procrastinating and not taking action. Don’t let a fear of failure hold you back from starting something new. By the end of my course, I had realised that I was just wasting time worrying. This time could be spent taking action. So my new motto became...Just Do It (sorry Nike but it is a good, motivating mantra!) So the next time I had a worrying thought that “If I go for a walk, it might just flare my pain further”, I stopped. Took a breath and said to myself “Come on, just do it! Because there is only one way to find out!” And, of course, I soon learnt that getting outside and going for a walk made me feel much better. I was using pacing and mindfulness and daily regular exercise, so I wasn’t overdoing it. I was slowly strengthening and improving my fitness and flexibility.

There can be a problematic self prophesising which can happen when we are afraid. For example, the fear of increasing pain may trigger the stress response. We are hardwired for this fight or flight response and when it kicks in we have a rush of hormones and a quick conversion to the sympathetic nervous system. We are now ready to run or fight for our lives. In this mode, we do not need non-essential body functions like the immune system, digestion system. You can read more about it here. But if we have caused this response to fire, guess what happens to our pain? It can increase because the regulatory systems that can sometimes control (or at least mask) pain have been switched off. And so then what happens? You have pain and you say “See, I told you so!” (refer to an excellent book by Dr Lissa Rankin, Mind over Medicine).

I am often motivated to do (or not do) something from fear. Fear of failure, fear of hurting someone’s feelings, fear of not being liked, fear of pain, and fear of being vulnerable.  For me, overcoming this fear has been a critical component on my self pain management journey. So here is my 3 step process to overcoming fear. For the purposes of this, we will use the example that fear is holding you back from changing a habit. For example, we will say you are afraid to start a new exercise program.

Identify.

You need to be pretty honest with yourself, if you are to identify the factors that hold you back from making a change/commitment. You might hear yourself saying things such as “I’m afraid I will injure myself and cause more problems” or “I’m afraid I can’t commit to doing anything properly”. So the fear may be resulting from past experiences and long held beliefs about yourself and your capabilities. These can be based around INJURY and FAILURE. For me, I would often flare my pain after playing netball when I was younger. I had to give it up in the end because of the way I approached the game (no warm up and relentlessly throwing my body around). You can read more about that decision here. After this, my fear morphed into “If I do any exercise it will flare up my back. This was a totally untrue statement but based on my prior experience and my deep desire to avoid pain, this became my reality. A fear of failure will result in you never starting something new. I have now figured out that by starting small and pacing up activities (read more about pacing here), I realised it is possible and achievable to get moving again. This approach also means you are less likely to fail because small increments are based on your current capabilities. Also, once you do start to move and get stronger, more flexible, you gain confidence and your motivation increases and you just, well, keep going. To identify fear as a motivator you need to be self aware and truthful with yourself.

Investigate.

We always immediately block or run from fear (that’s the fight or flight response kicking in). But it can be very helpful to confront your fears. In fact, don't just confront them, invite them in for a cuppa and get to know them better. What are these fears based on? Are they realistic? Is this something you have always just told yourself? Does it have grounding in fact/reality? Could this fear be a result of cultural/society influences? A question that I often use to investigate my fears can be as simple as “Is this true?” If the answer could be no, then I look at some of the alternatives. So using the fear of exercise example, is it true I will injury myself? No, not if I undertake the activity in the correct way and this may lead to me enjoying it, continually improving with a long term benefit of increased strength/flexibility. Such investigative thinking can be like drawing up a list of pros and cons. What are the reasons for doing something and what is holding me back? If it is fear holding you back, then you need to work through it, question it and make a strong choice based on these pros/cons.

Challenge.

You may have seen various challenges online. For example, loose weight in 6b weeks or a 10 week improve your love life challenge. Do you know why these work? If you give yourself a challenge and you stick to it, the chances are you may have come close to kicking a bad habit. By replacing a habit with a more helpful one (even though you were initially scared to try it) you will be achieving a massive milestone and motivating force to continue. And you will see the benefits too. But don't be afraid to get some help! Maybe make your commitment to overcoming fear accountable by telling a friend or loved one you are going to try something new. Maybe even just the discussion about the fact you are scared will be enough to get you up off the couch and into something new. An you know what, if we were all honest with each other, there is probably heaps of things we do/don’t do a result a result of fear. So, you may just get an interesting response from a friend...”Really? Me too!”.

I would love to know your thoughts? Are you sometimes held back by fear? With regards to your pain, what are you most afraid of? Is it true/realistic/likely? How do you overcome fear?

Here are some motivational quotes and interesting reads based on fear/excuses.

Don’t let a fear of failure hold you back from starting.

You miss 100% of the shots you don’t take – Wayne Gretzky

"What would life be if we had no courage to attempt anything?" Vincent van Gogh

Do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness. – Desiderata by Max Ehrman

 

Some additional good references about fear and its impact:

http://www.chronicpainandlife.com/blog/the-yeah-but

http://www.copyblogger.com/f-e-a-r/