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 After my first child was born, I became withdrawn, depressed and drowning in a feeling of hopelessness.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

Three key lessons I learnt from taking a break

I have always placed some very high expectations on myself. When I began Take Hold of Pain (THoP), I had grand dreams. After spending so many years struggling and suffering with chronic pain, I was passionate about helping others avoid suffering. I often would model my dreams on what I saw other amazing wellness entrepreneurs doing online. I wanted to have that too. In my first year of developing the THoP project, I pursued speaking, writing, coaching, learning, teaching and podcasting. I usually only managed to find about half a day a week to work on all this stuff! So, it doesn’t take an Einstein to figure out, it was all a bit much. Add to that, I had some major changes and challenges on the homefront. Towards the end of last year, I felt a major crash was heading my way. The warning signs were there. I was neglecting my self-management strategies, pain was rising, I was often tired and unwell...I needed to stop. I needed to take some time out and focus on me. So, I stepped back and I put many things on hold including my business. This gave me some space to pause, look around and re-assess what I really wanted.

Taking this break, these past few months have taught me some important lessons.

#1. Knowing what makes me happy. Taking a break gave me the time and space to realise what I love doing. I love spending time with my family. I love preparing healthy meals and treats. I do love cleaning and de-cluttering (well, maybe not the actual process but definitely the results of my labours!). When I was working and trying to juggle my many roles, I was neglecting the things I loved doing. The messy, disorganised house led to the frazzled, overwhelmed and irritable mum. A lengthy to-do list replaced easy-going, spontaneous fun times I enjoyed with the kids. The lack of healthy food and snacks led to the return of packets and processed “easy” meals. All of these things led to a decline in my health and subsequently a decline in my overall mental wellbeing.

Being the fun mum makes me happy. I had become a busy stressed mum and let me tell you, she’s no fun at all. She gets angry at little things. She yells. The fun mum takes the time to walk in the rain, dance around to daggy 90s music, to potter in the garden or just take a cuppa into the sunshine. She’s the one I like and she’s the one my family needs. Knowing what makes me happy has made it easier to prioritise. I want to do many things but the important ones, those that come first, are those that make me happy.

#2. It’s ok to go slow. When deciding to take a break, I did some soul searching. Who was I doing this for? Was I trying to prove something? I knew I wanted to help others experiencing pain and health challenges but I wasn’t willing to do it at the expense of my own. I needed to put my own health and that of my family first.  I was really worried that taking a break would be considered unprofessional. I was scared of loosing those few followers with whom I had started to build a connection. Despite being unsure I also knew I needed to refine my workload. I had too much on my plate and some things had to go. But I learnt that it’s ok to do that. It’s ok to put myself first. In fact, sometimes, it’s necessary, especially when you have to live with chronic pain. If you don’t, if you continually put others first or chase that big career goal or whatever it might be, things can get worse. And I have been down in that hole (see my blog on darkest days). I am not going back there.

Everyone’s journey is different. When we compare to others, we convince ourselves their life is easy, a clear path to the top without problems. In reality, most people have a tough slog. I think I convince myself that other people have had these overnight successes. People who are successful, fulfilled, have optimum health or happy usually had a hard slog to get to that place. It would have involved countless hours of self exploration, refinement and experiences and yes, I am sure they have had their failures along the way too. It was more likely a slow progression, interspersed with a few setbacks. Most importantly was how they responded to those set backs. Asking themselves “How will I go on? How will I manage? What have I learnt do differently?” So this led me to ask myself, if I let go of all that comparison and accepted where I am on my own journey right now, if I focused on where I am today, then the important question, for me, is...what do I need to do today that helps me achieve my goals and aligns with what is important to me? And if the answer is, do nothing, then that’s ok. Tomorrow the answer might be different but I need to just focus on what is important right now.

Going slow is also a concept I am passionate about because, in essence, this is what pacing is all about. I love pacing. I love how it can get you started on your goals, it can get you through simple daily tasks and it can help minimise flare ups and prevent overdoing it. Don’t worry, I will talk more about pacing soon because...well (spoiler alert) I am writing a book all about it!

#3. Celebrate where you are. I have come a long way from the crying mess on the floor 7 years ago. Then, I was depressed, withdrawn and without hope. These days, I am more mindful, I don’t dwell on unhelpful thoughts (well, rarely!) and I don’t let these thoughts snowball out of control. I have a busy life with two young kids aged 8 and 4 and a husband who runs his own business. I volunteer at school, I bake and cook many things from scratch using wholefoods, I also teach and share my story with others. Hey, I think I need to cut myself a break. I do plenty. I am enough. Why is it always so tough for us to recognise and acknowledge that we are enough? We are all doing a good job. We don’t need to always be striving and searching and wanting more. Here and now is fine.

As a part of all this, I think taking a break also made me become more aware of what I can do and what I cannot do. I have learnt to negotiate that fine line between managing and falling in a heap - my tipping point. So as a result, recently I wrote up my 2016 goals and plans for my THoP project and then compared this with my current commitments (working part time for the family business, my volunteer commitments, the family sporting and leisure schedules) and guess what, they don’t align. I know that too much pressure would result from trying to achieve these two parts of my life. I have a daughter in her last year before school, I need to cherish and nurture her this year. I have a son bravely figuring out who he is and where he fits into the world. I want to be there for them and be that fun mum. I need to be realistic. So this year, there won’t be that much coming from me. I want to enjoy my family time and when there is space and time, I want to write and teach and continue sharing my story. But, I need to go slow, look after myself and enjoy the ride.

Here are my lovelies, these are the ones who make me happy.
I love this photo too because you can tell here, I am the fun mum!

 

 

 

 

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

Within My Control

I wrote this article for a recently published Guest Post on the website Counting my Spoons by Julie Ryan.
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Six years ago I attended a 3 week intensive hospital based pain management clinic. It changed my life! During this course,  I learnt that pain is just a sensation within my body. Oftentimes the real suffering came afterwards in the way I reacted to my pain. Therefore, I had a fair degree of control over my pain. This was a real revelation for me. For the past 20 years, I believed that my pain controlled me. I would push through, ignore my pain warning signs, over do it and suffer as a result. I didn’t want to be ruled by my pain. I wanted to be normal and do the things everyone else was doing. So I would just fight against my limitations. I never realised that some of these thoughts and behaviours were actually contributing to my pain and my own sense of helplessness. By mindfully controlling my reactions to pain, I had the power to reduce the severity and frequency of flare ups...So I bet you want to know more right?

Here are the TOP 5 actions for pain management that I can control:

1. Accept Pain: I learnt to accept pain. Chronic pain is a part of who I am. Since accepting pain, I have become attuned to what my body is telling me and I act accordingly. Without the resistance towards my pain (something that is beyond my control) I have the energy to focus on my response to the pain and on improving my general wellness (something that is within my control). I want to point out that I don’t think it is weak to accept pain. People who know me would confirm that I am hardly the type to lie down and just give in. I am actually taking the responsibility for my own actions and self managing my condition. That takes extreme strength and self-discipline. I have been told by many health professionals that there is nothing that can be done. This is something that will be with me for life and I have let go of the relentless (and exhausting) pursuit for a miracle cure. Such things rarely exist and will not happen overnight.  So that being the case, I might as well manage it in the best possible way, right? So accepting pain is not weak, it is the strong and responsible choice to a lifelong problem.

2. Pacing: I am much more aware of my own limitations. And rather than push through them, I work within my capabilities to ensure I do not over do it and cause a pain flare. This involves the key concept of pacing. Put simply, pacing is controlled activity with breaks. How do you know when to take a break? BEFORE pain occurs. This requires some investigation and observing. Once a baseline is determined (the level of activity you can manage before pain occurs) then you can mindfully work to just before that point then rest. This way you can gradually increase the length of time for each activity without causing additional pain. There are great resources available on pacing such as “You are not your pain” and “Manage your pain”. 

3. Mindset: Remember I referred to the additional suffering? For me, most of this came from my thoughts and reactions to pain. So essential, I made it worse than it needed to be. I would engage in unhelpful thoughts such as “I hate this pain!” “Nothing is working”, “I am such a hopeless person” etc. I am sure you have your own common automatic thoughts that surface when pain gets extreme. Trust me, I do know that these thoughts are hard to control. However, with practice and mindfulness I am now able to replace these with more helpful thoughts that reduce the suffering association with pain. “You can do this, you have done it before” “Pain is just a sensation of the body” “Breathe!” You can control your thoughts and so I challenge you, when pain is bothering you and distressing emotions appear, ask yourself “Is this way of thinking helpful?”

4. Movement: I can control how much I move. This seemed such a ridiculous thing to discover. But my previous exercise regime was haphazard at best. I was afraid movement would cause pain. But I was never really shown and taught safe and effective ways to move. At the pain clinic, we started small. We used the concept of pacing outlined above to work on some simple strength techniques and walking. My starting points were very low (maybe 1-2 repetitions of some exercises) but I increased these daily and before long I was achieving good amounts of movement with ease. The key is consistency and working within your limitations. It didn’t take long before I saw the benefits!

5. Health Eating: This has been a relatively recent thing for me...and unfortunately it is not something that was ever mentioned in my hospital based pain management course. It is rarely mentioned by doctors or in pain management books but nutrition was such a major part of my overall health and wellbeing. I think it’s crucial in the lifestyle approach I have been following.  I have been “bio-hacking” my diet for the past 18 months. This is an excellent term coined by Cyndi O’Meara, an inspirational Australian nutritionist. It’s about figuring out what works best for you and your body in terms of the foods that are best avoided and those that do a great job towards healing and energising! I have been exploring my relationship with a number of major food groups such as processed foods, refined sugar, wheat and grains, dairy and other inflammatory foods. But I have learnt that what I eat is another area I can control. My diet becomes another aspect where I can contribute to my energy and (subsequently) pain levels. 

So, that’s it. These are the most important things I learnt when I did my pain management course and this is the reason that I now so actively and passionate advocate for self managing chronic pain. There is such strength and power in taking things within your control and making the changes you can to optimise health. Take back some power and do not rely on anyone else.

If you are looking for that one person who will change your life, look in the mirror!

 

I have just compiled a FREE e-book explaining some of these concepts in more depth. I welcome you to visit my new website www.takeholdofpain.com where this ebook is available for download when you opt in to my mailing list. I would love your thoughts and feedback so please feel free to drop me a line mandy@takeholdofpain.com or on any of my social media pages.

 

Take care and remember, you have a lot more control over your pain than you might think! 

Pacing - the basics

When fun turns to not fun (pain)

A big challenge when you self manage chronic pain is knowing when to stop having fun! Imagine, you are really enjoying some task and getting into it. Bang! Before you realise, you are sore and tired and need to rest. Sound familiar? When fun turns to not fun (pain) you have overdone it. This may result in a pain flare up. If we can recognise when to stop with greater accuracy we can prevent flare up frequency.

As you may know I have been involved in #sugarfreeseptember. It’s a challenge to give up refined sugar for the entire month and involves posting a picture for each day based on a theme. Yesterday’s theme was fun. I was having a lot of it. So much fun, I forgot to take a photo. There was plenty of opportunity too. We had a very casual Sunday at home with the kids, in the garden, preparing garden beds, we went for a walk to the shops, the sun was shining. I cooked some delicious meals (pancakes for breakfast and chicken bone both with vegetables for lunch). I even made some chocolate nut balls for the sugarfree afternoon treat. But when dinner time came around, I was pooped. My pain had increased, I was starting to feel a little nauseated and I wanted to go to bed. Problem was I had two very wide awake kids, a mess in the kitchen and no dinner prepared. I think I got lost between fun and not fun.

How to know when to stop? I am (obviously) still grappling with this one. But here are a few hints and tips:

Timed tasks: Do you know how long this task will take? Before starting, I need to assess how long it will take to set up, complete and pack up a certain job. I also need to have an understanding of how much I have left in the tank. This would involve an assessment of how much I have already done in a day.  If I believe I can do it then I need to get the timer, pace out the activity with some short breaks (whatever I have deemed my “activity” timing to be) and stop when it’s done (and that does include time taken to tidy up or put tools/things away). If I forget this important step then I am likely to complete the task but with a mess left behind. This is the bit I always seem to forget but it can cause trouble for me because it will result in loading up extra emotions (guilt, inadequacy), requiring help or feeling of overwhelm. A timer (small kitchen timer or your smart phone) can be the best device for ensuing you complete a task, start to finish, with breaks and without overdoing it. Another thing I have realised, if my tasks does involve the kids, they need to be warned in advance the timing of the task. My kids often have more energy than me and they might be fine to kick the footy for hours on end but I can offer them only the time I have determined is suitable for ensuring I don’t cause a flare up.

Reality check questions: Here are a few reminder questions I can ask myself to ensure I am fully prepared to undertake or continue a task at any point in time. Does this really need to be done right now? This is not meant to be a question to fool yourself out of completing a task you do not like (no cheating!). I will often choose to do activities that I enjoy despite the fact that I probably don’t have the energy left to complete them to a good standard (i.e. finishing without the mess part). I am particularly susceptible in the kitchen. I will choose to start baking when I really don’t have the time or effort to complete it but I choose to because I want to eat that particular food or have a healthy option available for my family. Does this task align with my goals? This can be good for determining where my priorities are and how a given task might affect them. By choosing a task that may flare my pain I need to be aware of the impact it may have on my family (reduced time spent with them, requiring their help to clean my mess).

Communicate: Sometimes the difference between fun and not fun is a short break. Maybe you need to go do some stretches or have a quick sit down. If you are having fun with others (your family, in social situations, even in the workplace), don’t be afraid to communicate your needs in that moment. “Do you mind if we sit down to keep talking?” or “Can we come back to this in five minutes I just need to do some stretches”. This might be all it needs to prevent slipping beyond fun.

It’s OK to say no: If you have done a timing assessment and asked a few reality checks and you are not sure you can manage a task, don’t start. Perhaps it is better to put off than get started and realise you have overdone it. There is a very delicate balance between activity based goals (that is, saying you are going to complete an activity regardless of pain) and not overdoing it (completing a task at the risk of flaring pain). It’s a fine line and it differs from day to day. The only way you can get better at knowing when to stop is to be more aware and undertake tasks mindfully. And, I believe, the most important part of any job is a mindful beginning, deciding whether or not you should even start.

Acceptance: Again, I am always going to have to come back to this. Sometimes I just make really bad choices, I haven’t done the timing or the reality checks and I have pushed beyond fun. It is important I accept and act in these situations. Apologise if I need to. “I’m sorry I made a bad choice”. This is OK to say some of the time. I am getting better at this and it does not happen as frequently as it used to. I need to make stronger choices once I have realised my mistake but without layering on the additional emotional pain and judgement. That will only make the situation worse.

So, when you are having fun what do you do to ensure it doesn’t slide into “not fun”?