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

Top 6 tips for beginning meditation – lessons from my cushion

When we set an intention to begin meditation, it can be a bit daunting. Am I doing it right? I am thinking too much? Can I move or must I sit still? How long is long enough? I often would put off meditation practice because I was afraid I wasn’t doing it “right”. Well, I am here to help because there is no right or wrong way. Mediation is about connecting to your body and about observing. I have put together a few tips to help you get started based on my own experiences.

1. Commit to sit. Meditation is a practice. You cannot expect to sit for an hour with existential bliss. Sorry. It is something that needs to be cultivated and this can only come from practice. Daily repetition. Start by deciding on a time that suits you. A time when you are unlikely to be disturbed. I have two young children and they can disturb anytime so I understand if this is something that might put you off. But there is always a time. I have recently been getting up an hour earlier so I can have some undisturbed time to start my day with a body scan. Avoid other distractions too by switching off your phone or moving to a quiet space in your home. Like all things, start small. The length of time is not as important as the consistency. Perhaps you might like to start with 5 minutes of quietness. You can always build up from there. Then, schedule it, set reminders, whatever you need to do but keep at it, everyday. Every time you practice you will build some meditation muscles and feel like, over time, you are getting the hang of it.

2. Diverted Interest. I used to think “I cannot meditate because I am too distracted” I have shiny things syndrome and my mind is often scattering from one thing to the next. In Buddhism they call it the monkey mind. Imagine a monkey in a cage scampering around – always on the move. That is a common state of mind for many of us. This is NOT a reason to not begin. The trick comes by firstly, not seeing thoughts and distractions as a failure. To achieve this, I recently flipped my thinking to be more helpful and compassionate. It was with thanks to Sona Fricker at Breathworks. On my recent retreat, he said that your mind will wander during meditation. The reason it wanders is because it has found something more interesting. This seems a much kinder way of putting it than to berate myself for being distracted. Now, I just become aware whenever possible of my diverted interest, and rather than get annoyed, I gentle escort my thoughts and attention back to my breath. And the great thing is, each time I become aware of diverted interest, is a moment of success in my mindfulness practice. I am observing my thoughts.

3. Posture: There are no hard and fast rules about this. I always envisioned that supple monk, cross-legged, sitting calmly on a hard floor, yet looking totally relaxed. When I started, I twitched and got uncomfortable and wanted to move and felt all tense and stiff. Then I discovered posture is totally individual. The important thing is to be comfortable. When you have chronic pain, this can be troublesome. Sitting for long periods was always a thing to make my pain intensify. So you can use pacing techniques to assist in getting used to the right posture. Don’t begin sitting for an hour, just sit for as long as you can manage. And don’t be afraid to alter your position. You can also begin to use your mindfulness practice to observe any pain or discomfort as you are sitting. It is important to be well-supported and if sitting, ensure your knees are below you hips. I always struggled with sitting cross-legged because of my fused spine and stiff joints. Solution: often I will lie down to meditate or I have found sitting in a chair can be easier. So, try a few different postures and don’t feel like you HAVE TO do it this way or that way. Just find whatever position is most suitable for you at the time.

4. Let it go. I often had some form of expectation or result from my meditation but I have learnt that this is exactly what I need to let go. My problem was often going into a formal meditation practice feeling relaxed and then coming out stressed! Why? Because I would beat myself up about my “mistakes”. Each time my interest went elsewhere (see – even now I have stopped saying distracted!), I got annoyed. Each time I felt stiff or sore, I was annoyed. Each time I stopped before my pre-determined time, I was annoyed. Add to that, the mental chatter that I felt I would never be able to control.  The scattered and random thoughts – even though I was taking notice of them, still seemed to annoy me. Mindfulness is all about observing without judgement. Any physical sensation, thought or emotion that comes along is absolutely fine. Just observe it –do not then assign judgment (good or bad) or place too much emphasis on it. Just keep observing or return your focus to your breath if this is possible for you.  Here it may also be useful for you to label any thoughts or feelings, for example, “I am having the thought that I am hungry” or “I feel a slight twitch in my eye”.

5. Keep at it. How do athletes get to the elite level? How do musicians become ready for a big performance? Practice. Do not think you will sit for an hour completely distraction free right from the word go. Practice is key. Keep coming back, time and again. Even within a meditation session. You may need to remind yourself a few times, maybe many times. Each time you return to your attention or to your formal practice, you are building up the neural pathways that will strengthen your awareness abilities. You are building mental muscles each time you sit, so keep at it.

6. Get help. I have included some books below that were really helpful for me. I have also attended some meditation workshops and retreats. If you want to get started but are unsure, there are so many resources out there. I also found sometimes at the beginning I was struggling with extended silences. I think this is pretty normal. In our fast paced world, we find it hard to unplug. We are so used to “doing” and rarely just “being”. But I have found a good success from using guided meditations. Initially, I thought this was a sign of failure but getting a guide and starting with some help means you can introduce the concepts and ideas slowly. I have found it really useful.

So, to finish off, why not just give it a go, stop right now and just take some slow, breathes with awareness – hey, you are meditating! Best of luck, please let me know any stories, experiences, tips or tricks that you have.

Wherever You Go, There You Are
You Are Not Your Pain: Using Mindfulness to Relieve Pain, Reduce Stress, and Restore Well-Being---An Eight-Week Program
Buddhism for Mothers of Young Children: Becoming a Mindful Parent

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! 

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/

 

Pacing - the basics

Helpful versus unhelpful thoughts

What is your experience?

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

"

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.

Chronic pain patient writes a letter to her GP

Dear Doctor,

Please find below some suggested principles upon which our relationship could be based:

Communication/goals: The giving and sharing of information. Let’s work as a team. Together, we can go on a journey which includes communicating, listening and doing all within our power to achieve a common goal. While this goal might be different for each patient you have, surely an over aching goal for all patients is to have an optimum level of health. Let us both be clear. I know you may not be able to take my pain away but I want us both to work towards optimising health.

Solutions-focused: I want a sustainable, long term solution. There are many options available to manage chronic pain and I want us to work through these together. When an option is not working, for example the long term use of pain medications, we need to find an alternative, which may include a non-pharmaceutical approach.  I would like all options to be considerate of the end goal (optimising wellness) and therefore we need to consider lifestyle factors, side effects and not focus solely on masking symptoms.

Shared empathy: A good relationship is built on each member of the party having a good understanding of what the other member is going through. We can both actively attempt to put ourselves in the others shoes. For you, this might mean finding the underlying problem behind the symptoms presented. I understand you may never have personally experienced chronic pain. Please, go ahead and use a little imagination or rely on the many other patient experiences you have been presented with. I want to be heard and understood. And often it is the real and debilitating impact of my symptoms that I would like you to understand. For example, constant tiredness may be a symptom but imagine the impact of that on your lifestyle...disconnection from social engagements and family commitments, isolation, guilt and a lack of purpose or sense of helplessness. For me as the patient, empathy might mean walking into our consultation with a realistic perspective of your background and experience. I realise that you are taught to know a little about a lot of conditions and you cannot be expected to know everything. I also appreciate you are time strapped and under pressure to see patients for a very limited time.

Team work: This is where I believe a really good team operates most effectively. All parties feel empowered and work together without a feeling of being told what to do or following along without the option for input and involvement. I would hope that you can give me adequate information about options for self management.  I realise that you may be able to assist with some of the physical pain but much of the responsibility to manage the additional suffering (emotional, stress and lifestyle factors) comes from responsible choices I need to make.  I want you to support and encourage me to make those choices.

Finally, this is NOT what I would like our relationship to be:

• Half an ear listening to my story, a quick scribble on your prescription pad and a gentle shove out the door without a second thought.
• A sense that my story is not being believed or understood.
• Me submitting all my power to you to take my pain away and/or find me a miracle cure (because I know this is unrealistic and unfair to our relationship).

So that said, let’s get moving....

 I would love to know your thoughts and experiences...Just so you know, I wrote this blogpost based on a recent request by Chronic Pain Australia for feedback for doctors from consumers living with chronic pain. Many of the responses were negative towards GPs and their lack of understanding.  I was inspired to write this based on my positive relationship with my own GP. He helped me to become my own health champion and self manage my chronic pain. Without his insight and understanding (and without his life-changing referral to a self pain management clinic), I would never have reached the levels of health and wellbeing I have today. So I would like to say a big "Thank You" to him. You know who you are!

Unhealthy attachments to pain

I recently decided to come up with a daily affirmation. I designed it to be something that was going to get me into the right frame of mind to tackle the day ahead. I wanted it to be strong and I wanted it to be a positive statement about the kind of person I want to be. So here it is:

“I self manage my chronic pain. I am a wife and a mum and I honour and respect my connections (with my family and friends, with my community and to my environment). I consciously accept the things I cannot change with a non-judgemental awareness of my reaction to these situations. I am practicing to let it go”

This is now what I say to myself each morning. It has made me think about attachment. I think much of my frustration is born from my attachment to things I cannot change. For example, I get frustrated at silly little things that have already happened like spillages or accidents (when you have two little ones in the house, these kinds of things happen all the time!) I have little control over them and once they have happened there is no real point getting too annoyed. Yes, I realise there are learning opportunities and discipline to be determined but I need to let go and move on.

It can be the same with pain. I used to have unhealthy attachments around pain. These attachments (when fiercely clung to) can really hold you back when attempting to self manage chronic pain. I thought it might be useful to highlight a few of these negative attachments.

Emotional: I often harboured an emotional attachment to my pain. I cycled through many different emotions but all involved a strong feeling, often a negative, draining, stressful emotion and these were not helpful for my pain or for achieving my goals. ANGER. I would often get angry when pain reared its ugly head. I was angry for needing to change my plans or angry at my own poor reaction to pain or just angry that I was lumped with this situation. DENIAL. I think this is a common emotional reaction to chronic pain. Ignore it and it will go away? Um, no chance! But I would allow myself to be fooled that I was doing ok, I didn’t have a pain problem. In doing so, I would ignore my physical limitations; push beyond my thresholds and, in the process, further increase my pain. GUILT. This was a huge one for me. I often would feel guilty about needing help because I felt I was being a burden on others. Or I would often think I was not up to standard (some unrealistic model of perfection I has set for myself) as a mother, wife or friend. This unrelenting guilt was an emotional burden I carried which further increased my own physical pain.  FEAR. This is the reason that I held myself back from trying new things for so long (such as self pain management techniques or new physical therapies). I was scared of making the situation worse. I already felt out of control and was worried any change would exacerbate the dire situation I had gotten myself into.  Fear held me back for a long time. But once I had made those first initial baby steps, I soon realised my real inner strength.

Ideal of normal: For some reason I had a very unhealthy attachment to the notion of being normal. I was often upset that my back and associated pain made me different and I just wanted to be normal. But what is "normal"? Is there such a person? Some people may not have pain but there is likely some other challenge or issue in their lives. Comparing is not helpful.   

Past pain experiences: These experiences would negatively influence my decision making. A previous flare up from exercise may have prevented me from attempting a new daily exercise program. I was afraid I would have another flare up.  But these experiences were often based on my inaccurate  interpretation of the situation. For example, if I was to go from doing nothing at all to playing a very rough and physical game of netball, I would get a pain flare up. This does not mean that controlled daily stretches is going to flare my pain because this is a totally different approach. Similarly, if I was told to do some exercises by a new practitioner, I would do them for a while then think it was having no impact so I would give up. Therefore, my past experience led me to believe that exercises don’t work. This is just not true. My poor commitment to the exercise was the reason there was not a noticeable improvement!

A magic cure: For much of my journey with chronic pain, I didn’t realise I was being passive. I relinquished my control to another, whether it was a doctor, surgeon, drug or someone else. I was searching outside of myself for a magic pill that would take all my pain away. I had an unhealthy obsession with finding a cure. My situation may never have a cure. I have now accepted chronic pain is something I need to live with. But in doing so, I haven’t continued to be passive, I now take an active role in managing my pain, on a daily basis. 

As you can see there are many emotional attachments to pain and they all can have an unhelpful influence on our pain! Whether it is emotion pain or pain resulting from overdoing it and stress, the bottom line is, attachments to pain are dangerous and unproductive.

I am hoping that explaining some of the attachments I have had you might be able to identify with some of these and realise their negative impact. If you are truly honest with yourself, do you have an unhealthy attachment to pain? Maybe it is time to become aware that you are desperately grasping and clinging to something that cannot be changed.

 

Maybe it is time to LET IT GO (Alright, Frozen fans out there, go on, start singing!)

Making Connections

Since starting this project I have been seeking out other people who actively advocate self managing chronic pain. I have made connections with some strong and inspiring women! I will soon be posting a blog directing you to some of their websites to share their positive messages.

Until then I just wanted to let you know I have written two guest blogposts recently and I wanted to make sure you hade the chance to read them.

I wrote one for Carole Staveley about finding your WHY and more recently, one for Julie Ryan at Counting my Spoons about happiness and how there is no reason to wait to be happy, you can chose to be happy at any moment.

I hope you like them and keep your eye out for my upcoming post on the blogs I am following who promote self management of chronic pain and illness.

If you are a blogger, writing about your experiences with living with chronic pain or illness and have a story to tell, please get in touch with me. I would love to hear from you.

Have a great day!