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 After my first child was born, I became withdrawn, depressed and drowning in a feeling of hopelessness.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

 

 

 

 

GUEST POST: Jo Belton - Becoming active not passive in changing pain

As you know from my previous post, I am taking a bit of time out from blogging but I am very grateful to have my friend Jo Belton from My Cuppa Jo, give some of her insights into things she has recently learned about changing her pain situation. Enjoy the read!

I was recently interviewed for a podcast about my chronic pain issues, including how and when they started, factors that influenced my pain early on, and where I am now. One of the questions I was asked was how I flipped the switch from being a passive recipient of care, searching for the answers in my doctors, physical therapists, movement coaches, massage, and the like, to realizing that in order for me to successfully change my pain it had to come from within me, that I had to be an active agent in changing it.

 

That’s a very good question, and if I could tap into those elements that could flip that switch, I think I could help solve a lot of problems in the world! The thing is, going from passive searcher of answers to active pain changer wasn’t like a switch being flipped for me, it was much more nuanced and gradual than that. It was more like a dimmer switch going from darkness to the lowest level of light, allowing me to see a little bit better but still dim and unclear. In that little bit of light I was able to see a bit more of the picture, though, and that helped me to move up the dimmer switch a little bit more, shedding a bit more light, helping me to see more of the picture, helping me to identify some of the pieces of the puzzle that I could start putting together. As those pieces started to come together, I could move the dimmer switch up yet more, shedding even more light on the issues I was facing and the changes I was going through and as more light shed, eventually I was there, I had crossed over from passive patient to active agent. Where along that spectrum I was when that happened, and how I got there, isn’t something I can readily define or describe, though.

 

It’s complicated.

 

That’s one of the hardest things for me to convey to other folks who are dealing with chronic or persistent pain. That there is a way forward but that there isn’t a plotted route on the map. But there is a map, but each of us has to determine the best route to get from Point A to Point B to Point C and so on. And the map isn’t finite, it’s sort of endless. There is no destination; it’s the journey that matters.

 

“Life’s a journey, not a destination.” ~Ralph Waldo Emerson

 

Though I can’t create a sort of step-by-step guide to getting to that point where I realized that ‘hey, I’m alright, I can still live a meaningful, active, pretty damn awesome life, even with this pain’ (boy, how I wish I could!), I do know the key ideas that helped to get me there. I think these ideas are likely fundamental for anyone dealing with pain to be able to successfully change their pain, and perhaps more importantly change the meaning of their pain, so that they live the life they want to live, the life they can live right now, even if pain sticks around.

 

There’s a thing about these fundamental ideas I’m talking about, though, which is true about any new way of thinking or of understanding the world that we’re exposed to: they’re not always easy to grasp or believe or incorporate into our lives. New information can be tough, especially when we’re in pain. Pain has a tendency to usurp all of our attention, to sap all of our resources, so taking in new information, no matter how valuable it may be, can be really, really hard. It’s much easier to just be told what to do or to take a pill or to get surgery than to have to really get in there and try to understand pain and what we can do to change it. It’s much easier to be a passive recipient of care.

 

I was there for a long time. I never took medication for my pain (that’s a whole ‘nother story), but I did always seek the answers in someone else. First up it was my occupational doc and second up the physical therapist the occ doc sent me to. When my pain kept getting worse, third up became the orthopedic surgeon who sent me to a second physical therapist. Then up was the second orthopedic surgeon and cortisone injections. Then up was a third orthopedic surgeon and eventual surgery and my third round of physical therapists. And when my pain persisted (tnot the debilitating pain I had pre-op, but pain none-the-less) a year post-op it was yet more physical therapy, some chiropractic care, some acupuncture, some massage, some non-medical movement and posture therapy (these last two I paid out of pocket for, all the others were paid for by worker’s comp).

 

I saw the greatest success with my movement and posture therapy, though I understand the reasons for this success much differently now. It was the first time someone helped me to work through my fears of movement, the first time someone asked me questions about something other than just the nature of my pain, where was it, what’d it feel like, on a scale of 1-10 how intense. In fact, they hardly asked me any questions that dealt specifically with my pain; rather, they asked me questions about me, about my life, about my activity levels, and about what I currently wasn’t able to do that I would like to be able to do. Aha!

 

They also got me moving in all sorts of ways and in all sorts of contexts, not just focusing on my hip and the pain there and in my low back, but focusing on all of me. I finally started to become aware of the rest of my body, whereas before I only thought about my hip.

 

I’m sure this laser focus on my hip led to some distorted body-map images in my brain, especially since it had been my sole focus for over 2 years at that point. I started to think about how all the other parts of my body felt, how they were moving, how my body as a whole felt and moved. This was pretty ground-breaking and, heartbreakingly, wasn’t something I got from my physical therapists who also only seemed solely focused on my hip (strength, range of motion, etc).

 

About 5 months after I started my movement and posture therapy I returned to graduate school in a Master of Science program in human movement (kinesiology). During my coursework in school, I started researching movement and pain. From my years of physical therapy, I very much thought that my pain was biomechanical in nature. And with the success I was having in my movement and posture therapy, I felt like there was something to it. My pain wasn’t gone but at least I could function as a human being. And sleep. Those were two things I didn’t feel I was able to do for a long time.

 

About a year after my movement and posture therapy began I was sort of plateaued. I felt better and was functional but I was still in pain everyday, I still feared some movements because some movements exacerbated my pain or made my hip and/or low back make some funny noises accompanied by odd sensations. They worried me. Quite a lot. I was still very focused on my posture and would try to control my posture and movement rigidly. I was worried about damaging tissues, about ‘messing up’ my surgery, about reinjuring myself.

Then I read some of LorimerMoseley’s work. Aha! It was truly life-changing for me. I started to actually understand the mechanisms behind my persistent pain. I started to understand the complexity of pain.

 

I started to understand how much our thoughts, beliefs, self-talk, expectations, fears, anxieties, and worries contributed to pain. I started to understand how isolation, lack of social support, and depression can contribute to pain. I started to understand how our nervous system and our immune systems change in response to continued pain and how those changes can further contribute to pain persistence, long after the tissues heal.

 

I started to see how the stress of the worker’s compensation system (financial worries, always feeling doubted, not receiving timely care, feeling as though I had to fight for everything) contributed to my pain; how my withdrawal from my friends and family and my medical retirement and loss of identity as a firefighter contributed to my pain; how the uncertain nature of my pain, which persisted long after my tissues were healed, and the worry and anxiety that resulted from that uncertainty contributed to my pain; how my association of pain with biomechanics and tissue damage led me to fear certain movements and continually blame myself for not moving/sitting/standing/sleeping right and how that contributed to my pain.

 

I also began to understand that our bioplastic nature means that changes don’t just take place in response to pain, but that we can make changes in our lives which can affect our biology, our nervous system function, our immune function; it meant I could change my pain, my life.

 

It helped me to prioritize stress management, to start being more mindful and practice things like meditation, journal writing, self- and other-reflection, gratitude, and quietude.

 

It helped me to realize that creative pursuits weren’t a waste of time, that my writing and my photography actually provided health benefits.

 

It helped me to get outside more as I realized that my nature walks and mountain hikes were a form of therapy for me. It helped me to focus on relationships, on loving and being loved, on being present with the people I care about.

 

It helped me to understand that my movement and posture therapy didn’t work because of ‘correct’ posture or movement, but because I felt safe moving and I was having fun. And when this understanding kicked into gear, I made huge leaps and bounds in what I could do movement-wise. I think the capabilities were always there, I just didn’t tap into them until this other understanding kicked in. That was huge. That meant I could still be active, still pursue the things I love doing, still live the life I want to live, even if the pain was still there.

 

I didn’t have to wait anymore.

 

And this realization helped me to accept the pain. I finally understood that I didn’t have to fight the pain anymore, nor did I have to concede to it or avoid it or try to ignore it. I could simply acknowledge it, accept its presence, and make space for it so I could make room for all the other stuff that matters to me because I no longer had to waste all my attention and resources on the pain anymore.

 

Acceptance is the most important step in my view, but the one that took me the longest to get to. It was one of those ideas I didn’t grasp right away, one of those ideas I didn’t understand and even fought off for a bit.

 

This makes sense, early on in pain we’re seeking the solution, and early on is when the pain problem can most readily be solved (if I knew all that I know now at the start, who knows where’d I’d be!). But there comes a time for some of us that those acute pain problems become chronic, they keep persisting. And if they’re going to stick around, I think it best we accept that and make some space for it so we can get on with it. You know what I mean?

 

That’s why I think the first step in all of this, for me, was pain science education because it helped me to grasp what pain was, and what it wasn’t. It helped me to understand and think about pain differently, therefore allowing me to think about my own pain differently.

 

Once I understood that hurt doesn’t always equal harm, that my pain didn’t mean I was damaging myself, I could move without fear or worry. And not being so worried and anxious about how I was moving or sitting or standing all the time, I realized I could live without fear and worry. I could socialize again, going out to dinners or the movies, traveling, and being active, trying different things and revisiting old things I used to love doing, like trail running.

 

I could get out and do the things I enjoy again and just be me.

 

My dimmer switch is now most of the way up, there’s lots of light in my life now, but it was a slow process. And it involved a lot of things building on each other, not necessarily sequentially, either. My points A and B and C are all over the map and there are no straight lines, there are lots of squiggles and backtracking and sharp turns.

 

But that’s ok. Life is more interesting that way. 
   

   You can read Jo's story and interesting insights into living well with chronic pain at My Cuppa Jo

Taking a short break....

I haven’t been keeping up with my blogging schedule at all. One of my previous posts was about balance and, to be honest, I am still struggling. I want to do everything but I have limited time and energy. I need to focus on my two main priorities.. and these are my own pain management commitments and my family. Here is why. For the past few months, I have been on a pretty good routine first thing in the morning. I wake up and do a body scan meditation and my stretches/exercises before the kids get up. Well....we have just welcomed a new puppy into our household and it’s like we have a new baby all over again. So that has changed how this routine has been working. I am adapting it as we go to accommodate him as he is learning to be an inside dog! He will be a good helper in motivating me to do my daily walks too but that is once he learns how to walk on a lead without pulling my arm off! I have been taking on too many commitments and my body is giving me some subtle (and not so subtle) signs that I need to slow down a little. It’s taken me such a long time to develop this self awareness so I dare not listen. Without going into too much detail, I feel I need to be more accessible to my family at the moment. My eldest is going through a trying stage, figuring out a sense of her authentic self. To ensure I am giving her all the love and support she needs, I want to be as available as I can. We are a strong family unit of 4 (oops sorry, 5 now with the dog!) and I am dedicated to giving to them all I can to support, love and nurture them through this time. A while back someone suggested a good method for determining priorities in life is to imagine what you would like people to say about you in a eulogy. And it’s not morbid. It’s actually a calming and centring thought. And high on my list is that my kids would say I was a good mum. Simple as that. The problem is, after these two priorities, I am really enthusiastic and committed to this new business I have started. I want to help other people with chronic pain realise they do not have to suffer. They can avoid the years of suffering I experienced if they had a little education about the things that work...and if they are willing to take on some responsibility. But my time is precious and I need to ensure I have my priorities right. I want to manage my pain and be there for my family. So I am going to need to be slightly less active for the next little while with my blogging and updates. I am not going to totally disappear and I have planned a few guest posts over the next little while to continue to inform and inspire. So, I hope you can understand and please stay with me. I need you too... so please, don’t disappear. I’ll be back. Gentle virtual hugs to you all. XX

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! 

Holistic diagnostics

So, we got some new tyres recently. The old ones were very bald and worn. My curious daughter, on seeing these new ones, asked me how they worked. I started to explain about tread and axels and then I realised firstly, I don't really know much about how cars work and secondly, the tyres form a single part of a very complex machine.

It brought me back to the concept of focus. When we have an ongoing problem or injury, that area becomes the focus of our pain. For me, it's my back. Over time, I have had all sorts of X-rays, MRIs, scans, specialists, poking and prodding. I was searching for a cure or a reason so that I could just "get it fixed" thus solving my pain problem. But rarely did anyone look at my how my whole body was functioning (physically, emotionally, psychologically).

Thinking back to the car analogy, if my body was a car, then let's assume I have a panel that is all smashed up (my spine). I wanted desperately to take myself off to the mechanic and get that panel repaired. They could bang out the dints and give it a new spray paint, job done! Right?

But will my car go on to then run at it's optimum...?
What about the black smoke coming from the exhaust (unhelpful thoughts/mindset)?
What about the fact I'm giving the car unleaded fuel instead of diesel (poor diet)?
What about my brake pads that are worn and useless (not pacing my daily activities and overdoing it)?
What about the sticky clutch which is stiff from lack of use (inconsistent stretching or strength exercise program)?

 "

The whole is greater than the sum of it's parts - Aristotle

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For the most effective tune up, we need to be looking at the whole body. I believe it would be very helpful to have a holistic diagnostic of where a person is at on their wellness journey. Not a single snapshot in time of what can be a very complex pain problem. I realise that it is difficult to look at all the aspects affecting a person's condition in a single 10 minute consultation. So, what is the solution? I have been playing around with designing a pre-visit holistic wellness survey that could be used to identify a "whole of body" approach to the management of chronic pain.

If you are interested, please let me know.

Focus where you want to go

**I had such an amazing response to this post on Facebook the other day, that I thought I better share it here too **

When I was learning to drive, I remember clearly the instructor telling me to look where I wanted to go. I know that sounds obvious but he explained that often, if you look at an obstacle (e.g. the gutter) you're likely to hit it. The message is even more powerful when my instructor told me about fatalities. He said that in the split second you have to make a life altering decision, people often look at the thing they want to avoid. Imagine, high speed, losing control, you are looking ahead and trying to figure out what to do and you think "Oh my God, I don't want to hit that tree!" ....SMASH. 

It's the same when you are living with chronic pain. All too often, I was focusing on the pain and I was worried things would get worse. My thoughts were locked in an uncertain future. I was focusing on the place I didn't want to be. No one wants to get stuck in a cycle of increasing pain and suffering. But that's where I ended up. I became trapped in a state of hopelessness and despair. I was afraid to exercise because I was always dreading more pain. I withdrew from loved ones because I was afraid they would stop loving me. I didn't realise how my negative thoughts had become my reality because I was continually focusing on the place I didn't want to go.

So, be honest with yourself.
What are you looking at?
Where are you focusing?
Are you going to get there?
.....Maybe.

Please, calmly put your eyes back on the road. Look at your destination as a state of optimal health. Figure out what that looks like for you and focus on it. Look at what you can do and where you want to be.

Then...

You WILL get THERE.

Free Pass

I’ve been feeling crappy. My daughter has been sick and I think I might have caught her bug. But still, I dragged myself out the other day and visited my new chiropractor. I told him I felt sick with a headache, body aches and that my youngest was sick with a bad cold. He said it was the perfect time to visit him! Huh? He is really good at explaining stuff to me. It may be because I am new and I gave him the heads up I was a bit sceptical. I have some serious hardware in my spine so I was nervous and expressed my reservations. But he has been very open and descriptive. He explained to me that when your nervous system is not firing at its optimum, it is hard for your immune system to do what it needs to do (heal!). Your body has an innate capacity to heal itself but for this to happen, the message channels in your central nervous system need to be working properly. Another interesting thing he told me was that your body puts a specific amount of energy into healing. This may cover my day to day aches associated with my chronic back pain. But when inflammation, viruses or other sickness attack, this innate healing needs to be diverted to the “emergency” situation. There is no leftover energy for masking any ongoing pain. So it made sense that I had a bug and I had a pain flare at the same time. I really wanted to just check out and give my body the time to heal itself. I needed to rest. It reminded me of something....

When my daughter was younger we were often trialling new bedtime routines (Ummm, she is nearly 7 and we still haven’t found one that works!). She has always been a night owl and never seems tired when it is bedtime. So for a while there, we would read her a story, do the teeth, toilet and all that stuff, tuck her in and say goodnight...then we gave her this strict rule. If there was some very necessary (borderline emergency) reason then she could come out and talk to us. We called this a free pass. Then she was supposed to stay in her bedroom after that and go to sleep. Anyway, it worked for a while....

So it comes back to how I was feeling yesterday, in pain and on verge of tears. This situation could have become worse if I had have let my thoughts get out of control, continue with blame and guilt and feeling bad about myself. But I took myself out for a walk and cleared my head. On my walk, I recalled the “free pass” rule. There will be days when I don’t feel crash hot. That’s true for everyone whether you have chronic pain or not. So I decided it would be OK to allow myself a free pass every now and then. I needed to just breathe, ditch the stress, give in to the need to re-charge. So, I gave myself a free pass. I had a PJ day, complete with nana nap and movie!

Obviously free passes are for borderline emergency purposes....so not to be used too often. My body was telling me something and I had to listen. I also acknowledged that after this “free pass” I need to still be committed to returning to my self pain management routines….but that’s tomorrow.  

 

 

 

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”?

Managing flare ups

While I have been self managing my chronic back pain now for over 6 years, I still get flare ups. I was never under the disillusion that my pain would go away. So now when pain looms, I use my flare up management strategies. I know just what to do.

Even though it can be worthwhile to reflect on the reason (i.e. Did I over do it? Have I been neglecting my daily stretches? Did I stand or sit for too long without moving?) I am less focused on trying to figure out the cause of increased pain. I find it’s more important to launch into action.

So here is my step by step approach to managing a flare up:

Accept. Often my flare ups are still caused by overdoing it! Yes, I know all about pacing, taking breaks and have a good understanding of my own limitations but sometimes I still push through and over do it. But rather than beat myself up with guilt and blame and anger…I just stop, nourish, repair, move on. I also am much more willing to accept and just acknowledge that sometimes it is OK to have a bad day (I give myself a free pass - more on this soon). Also by simply accepting the pain, I am less likely to buy into negative, unhelpful thoughts which could develop into a snowball.

Plan. I need to make sure I communicate and get help if I need it. I know my bad flare ups last maximum of a day or two. I can deal with that. Two days is not a lifetime.While this may cause a problem if I have commitments/events, I just accept that my plans may need to be re-scheduled, re-organised or prioritised.   I will work simply from a daily plan worksheet, breaking my day into small manageable chunks with lots of breaks and only the necessary jobs (of which, walking, stretches and exercises get top billing!).

Act.  I have a list of activities I can do that I know will turn down my pain dial. I choose one of these and act. I don’t rest anymore or ruminate or wallow in my pain (that gets you nowhere or backwards - fast!). Your loved ones will soon recognize flare ups coming on too and if you share your flare up action plan with them, they can help. My daughter has told me I needed to do some stretches when I told her my back was sore. My husband often tells me it’s time to go out for a walk or he sends me to my room some meditation time. So I will go sit, stretch, breathe, relax. Remove some of the mental clutter. I need to do activities that turn the dial down. Here are some examples of things that work well for me:

Helpful thoughts

Relaxation/meditation

Stretching

Going for a walk

Listening to a motivating podcast/music or reading book

Awareness (posture, thoughts, activities)

Pacing (take breaks)

Carefully preparing a nourishing meal/snack

Be: I re-connect with the present moment, I cannot change the way things are right now so if I practice mindfulness and be aware of what I am doing, I can resume my normal day to day  activities much more refreshed and ready to cope with the current situation.

What do you do? A flare up action plan might be a good starting point. Take note of helpful thoughts or activities that you know turn down your pain dial and be aware of pacing cues, timing and taking breaks.

My Story - Part 2 (AFTER)

Things were going badly and I knew I needed to do something fast.  I sought help from a pain specialist. We tried nerve blocks, denervation (they burn the ends off your nerves to stop pain messages!) These were excruciating to receive and did not even provide much relief.  My wonderfully caring and insightful GP was on the border of diagnosing Post Natal Depression when he delved further into my situation to decide that pain (and my inability to cope with it) was the real source of my depression. He had another solution. He referred me to the Barbra Walker Centre for Pain Management at St Vincent’s hospital. After a 6 month wait and a number of sessions with their psychologist, I was recommended to attend their three week, in- hospital self pain management course. I am not exaggerating to say it turned my life around. The course gave me the whack-in-the-face wake-up call I needed. They supported me to come off all medications and learn techniques to deal with my pain by taking matters into my own hands. I learnt the link between my thoughts around pain and how this impacts on the expression of the pain. I also learnt that a little exercise is better than nothing because resting makes the problem worse. The lack of activity causes deconditioning of muscles leading to increased pain. This course taught me to become disciplined and educated enough to take responsibility for my own pain management. It 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!

Since then I have been managing my own wellness journey without medication using exercise and mindfulness techniques. I had a lightbulb moment in (of all places!) the toilet!  While at the pain management course, the hospital toilet door opened outwards. I was not used to opening outwards and every time I went to the toilet I would push and slam into the door. This went on every time I went to the toilet embarrassingly for probably the first week! One day, early in the second week I went in and stopped at the door.  I smiled and I pulled. I got a blinding flash of clarity. Habits can change. Your mind does learn new tricks! This gave me a gleam of hope for my future. If after 20 years of responding to pain with the same automatic unhelpful thoughts and behaviour that I have learnt only amplify my pain, then I can change these thoughts and behaviours. It IS possible to think a different way. Yes, it might take me a while (I have 20 years to bad habits to self correct…) but I can do it. I will do it.

The benefits of this new approach were immediate and substantial. I gained the strength and confidence to resume my social and day-to-day activities with confidence. Regular daily movement is prioritized in my life. I have become better at communicating with my family and friends about how I was feeling, asking for help when I needed it and just enjoying my extremely blessed life. At the pain management course, my long term goal was to be strong enough to try for another baby. Two years later our second daughter Bridget (meaning strength) was born. Self pain management is not an easy road but with discipline, there is such extreme relief and freedom.

After recovery from this birth, I knew there was still something missing from feeling totally in control of my pain. I needed to do more, I wanted the energy to do more! So more recently I have researched nutrition and its impact on the body and mind. I have been following a wholefoods, high nutrient, healthy diet. This was the key to unlocking that final piece of my puzzle. With the right energy in (good quality, real foods) I now have more energy and this gives me greater strength and vitality to continue to manage my pain effectively. It’s an added benefit but I have lost about 10kg during this period (cool!). I am still learning what does and does not agree with my body however I am passionate about maintaining a good diet and want to fuel my body with the best quality foods possible.

I have been blessed with an amazing support team and I could never have progressed in my journey without the love and support of my family and friends. My husband has been down some dark tunnels with me, seen me at my worst, but his strength and love have guided me through. He and the girls will often send me out on a walk or instruct me to do my stretches! My parents, in-laws, and other family and friends have been invaluable support and it’s such a comfort to know I have people in my corner, egging me on for success.

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 walk the walk so I can talk the talk. I want to share with other chronic pain suffers that I’ve been down that road too but look how far I’ve come!

And, hey, my journey isn’t over, but if I waited til I was perfect, you would never get to read this! Why not join me for the ride...