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!