Life after my chronic pain tsunami

It’s been over 12 months since my last post so an update in my pain recovery journey is timely.

Can chronic pain be overcome or at the very least reduced? In my experience I can now say yes and my results should be heartening to those who have recently set out on their journey to recovery.

My recovery has been multifaceted and the following are listed in brief as a roadmap to my rehabilitation.

• Awareness of my pain and need to look outside local general practice information available which was scant and disappointing

• Internet search of symptoms which lead me to WHRIA website

• Consultation with physiotherapist & surgeon with a definitive diagnosis

• Medication and physiotherapy and an action plan to recovery

• Support by WHRIA team and Support Group was integral in giving hope when I felt so desperately isolated and without hope

• Believing that recovery was possible

• Surgery

• Physiotheraphy

• Medication to compliment recovery

• Osteopathy

• Explain Pain and Protectometer

• Good health and exercise regime

Moving forward I have dispensed with the day to day recording of Dim’s (Danger in me) and Sim’s (Safety in me) but have a memory of the principles of the science behind the pain through the Explain Pain book. All the tools I have acquired and the support group and practitioners I have so heavily relied on are now no longer required. Should I ever feel the need perhaps in a period of relapse I am already empowered knowing that I have the precise support I need and will not hesitate using.

But to those who are advancing in their pain journey to recovery I’ve taken a moment to draw a comparison to show the huge leap from My Pain to My Gain.

Here is my first template which I started on 4th May 2017:

• Total sit today = 45 mins
• Bfast – mins sitting= 15 mins at coffee table on shins & hip stretch
• Lunch – mins sitting = 15 mins
• Overall driving sitting = 0 mins
• Dinner – mins sitting  = 15 mins
• 20 mins return walk to shops
• 30 mins walk to  soccer oval
• 30 min exercise video
• 15 mins afternoon relaxation music laying down
• 30 mins lay on recliners/lounge room

Here is my recent template as at 18th October 2018:

• Total sit today = unlimited
• Bfast – mins sitting= up to 1 hour with ease at coffee table on shins & hip stretch
• Lunch – mins sitting = up to 3 hours if out with company
• Overall driving sitting = 1 hour 30 mins with a walk and outing and return drive of another 1 hour 30 mins
• Dinner – mins sitting  = up to 3 hours if out with company but generally 1 hour with ease
• unlimited time walking – limited only because I’m pooped!
• 30 mins walk to soccer oval twice a day
• 30 min exercise video
• 15 mins afternoon relaxation music laying down
• unlimited mins lay on recliners/lounge room watching television and knitting!

Through my sitting challenges I have read many exercise articles and understand that it’s not really in your body’s interests to remain sedentary for too long and find that if I get moving after sitting it is not always because I feel a little uncomfortable but more because I’m keen to keep feeding my body nutrition through exercise.

I will never for once trivialize the very real pain which I have most certainly experienced but from my current recovery perspective I believe that one day, when I’m so occupied with daily ‘safe’ tasks – exercising, stretching, cooking, squatting down cleaning floors, bending in every direction vacuuming, catching up with friends at cafes and restaurants, traveling, gardening….and the list goes on and on, somewhere in that most complex central nervous system of mine I will no longer give thought to my past mountain of pain and it will simply vanish. I believe that to my very core.

To quantify my improvements I’d say I’m 90% to full recovery. I always carry a small cushion with me in my tote bag for upright sitting particularly unforgiving hard chairs. I may always take my cushion as it’s probably a healthy sitting practice for anyone and not an impairment. I also take 10mg endep daily which is apparently very very low in terms of medication potency. I expect over the course of the next few years I’ll review this but it’s just not an issue at this stage and I’m enjoying my life so completely it’s not a race but a journey.

A practice I still apply regularly from the Protectometer is ‘the challenge’ and will continue to so daily. If I’m ever asked to participate in a physical action I’d prefer not to do as my protection mode kicks in, I’ll identify whether it’s a practice I feel would cause me damage or whether it’s a task I feel tentative to approach but reasonably confident will not cause pain. And if the latter, then I have a go at it only to find that it now sits in my ever expanding repertoire of tunes I can now play. It pushes boundaries in a safe environment and I find works amazingly for me and recommend to anyone.

I’ve included some pictures of Judy’s Daily Life which I never believed was possible. One should never stop believing it IS possible!

The Journey Continues..

The Explain Pain book has become the centerpiece to my continuing progress. As I’ve mentioned previously improvements are slow and it’s a slog at times but persistence is essential for success. I am by now very well aware how the central nervous system operates with the chronic pain game! Education is liberating.

To be consistent with my previous pain management techniques the following is an approximation of my timed improvements and methods of sitting. I have now made significant increases to my overall sitting time. It is a tedious and overwhelming exercise at times but important. I am now relying a little less (except for sitting on a dining chair which I continue to time as it is by far the most difficult activity for me to accomplish at length) on timing absolutely every manner of sitting and shift to mentally assess my activities. I want to shift the focus a bit and be more relaxed with timed sitting and approach sitting and daily activity with more ease. We shall see…

• Total sit today = 2 hours 30 mins approximately
• Bfast – mins sitting= 30 mins on the floor at coffee table (stretching hip & knee joints too)
• Lunch – mins sitting = 45 mins
• Mins sit coffee = 30 mins
• mins sit dinner = 45 mins

• Variations of sitting not included in total sit time:
• Overall sitting on cushion whilst driving = 1hr
• Reclining passenger in car total = 1 hour
• Sitting on soft lounge without cushion – 30 mins
• 60 mins lay on recliners/lounge room sitting time
• 20 mins return walk to shops
• 30 mins walk to soccer oval
• 30 min exercise video

Not surprisingly due to living with chronic pain for so long, I regularly experience a pervading pull back into a well known, well played comfort zone involving little sitting and few activities but am also aware of a need to persist and create more experiences (more tunes for my repertoire) in order to continue progress. Anxiety which I now know can play a huge roll in creating pain hovers regularly in the background but I do understand it much better now and know that is why moving forward must be slow but must be constant. The central nervous system is so sophisticated that it detects the slightest change in movement or change to (in my case) small amounts of sitting and springs into protection mode by sending pain signals manufactured in the brain to the site of initial damage and creates more pain in order to protect my body. It’s also known that these messages do not necessarily reflect the condition of the original pain site any longer so whilst the pain is very real, the injury may not. To change the ‘false’ response system you need to ‘trick’ the central nervous system into believing all is well and there is no need to create protective pain messages from the brain. It can be tricked only by making subtle increases in movement/sitting hence the need to make change slowly. I am aware that anxiety is very real and not ‘just in my head’ but the central nervous system of the brain and that it actually does turn on the pain tune. It’s not my fault, the central nervous system takes control of the pain signals and can even spread into other parts of the brain managing different areas of the body (called smudging) and hence the pain now spreads through other healthy parts of the body. If my anxiety surfaces I am much more adept in handling the pain that it creates and often turn to exercise and movement and things which I have now tested and know cause no pain with excellent results. I honestly feel like I can turn that tune off and change that cycle of recurring pain that I have experienced in the past. I am far less concerned about the idea of re-injuring myself and even believe that should I have a flare up, that’s all it will be and I won’t return to habits of old where I would disconnect from all my improvements and return to the beginning of that chronic pain cycle.

I have just reviewed and updated my DIM’s (Danger In Me) and SIM’s (Safety In Me) with very pleasing results. I constantly sit on the 0 pain level but may have niggles throughout the day but consider that is completely normal and continue my safe activities without hesitation.

Happily, I am becoming social once again albeit slowly. For the moment I am controlling how I socialize and as my pain issue revolves around sitting, I meet friends who are accepting of my limitations and suggest a ‘walk, talk, sit for measured coffee/lunch and a walk, talk return’ outing. I am also aware that eating out with friends at restaurants of an evening is a big issue for both anxiety and actual timed sitting for me. With this in mind I also include a walk with my husband and a couple of close friends who understand without judgement to a well furnished local club with dining facilities which I time and moving to the lounge area for coffee/deserts after our meal which is very comfortable and have very little sitting limits. The idea of eating out in the evening does cause anxiety for me but under controlled conditions I know it is within my safe zone so I challenge myself weekly to eating out in order to create yet another tune I know I will be able to add to my expanding repertoire.

Safe activities for me include:

A daily stretching exercise programme, lengthy walks (have walked 12kms with ease), all housework, gardening, driving my car for periods of time, passenger in car for periods of time which I am also challenging myself slowly to increase. Sitting is my biggest challenge and I have been creative with my sitting as the Explain Pain book suggests. I have sat in positions which create a virtual image and in any number of positions on the floor, car, lounge etc.

I constantly pick up my Explain Pain book and refresh myself with the knowledge it provides. I am in such a better place because of the book and continue to move forward. I love the Challenges recommended in the book and am at the stage where I need to challenge myself to increase my repertoire of tunes.

Here’s to more success, I want to kick my chronic pain to the curb!  I am well aware of the difficulty and complexity of altering well established pain tunes but think I’m on the best track to achieve my goal so far!

Measuring my progress

An important part of my success to the programme is to increase activities and sitting times (which relate to my experience of chronic pain) very slowly to enable my central nervous system to accommodate these changes. To be consistent and simple I created a template including activities which I want to accomplish for longer periods of time which I record daily – my wish list! It is my hope that I will eventually reach significant periods of varied sitting time and once again enjoy these simple activities which have been out of reach for me for quite some time. I am also keen to know what my limits will eventually be. Hopefully great but just knowing my limits will also be empowering.

I’ve retained my first recorded template and commencement date (which started as a DIM) and my latest, which I update daily and store as a SIM on my Protectometer. It gives me a picture of just how far I have come as well as proving to me that I was actually dealing with a flare up and that my chronic pain relates exactly to that flare up. I am no longer concerned that I have re injured myself.

Here is my first template which I started on 4th May 2017:

• Total sit today = 45 mins
• Bfast – mins sitting= 15 mins at coffee table on shins & hip stretch
• Lunch – mins sitting = 15 mins
• Overall driving sitting = 0 mins
• Dinner – mins sitting  = 15 mins
• 20 mins return walk to shops
• 30 mins walk to  soccer oval
• 30 min exercise video
• 15 mins afternoon relaxation music laying down
• 30 mins lay on recliners/lounge room

And my latest template updated 9th July 2017:

• Total sit today = 1hr 33mins
• Bfast – mins sitting= 31 mins on the floor at coffee table stretching hip & knee joints too
• Lunch – mins sitting = 31 mins
• Dinner – mins sitting = 31 mins
• Overall driving sitting = 1hr 56 mins
• Practice sitting on blue lounge chair without cushion = 3 mins✔️
• 20 mins return walk to shops ✔️
• 2 hour 30 mins walk (15,626 steps = 11.91 kilometers)
• 30 min exercise video
• 0 mins afternoon relaxation music laying down
• 0 lay on recliners/lounge room
• 0 reclining passenger in car

It looks a tad tedious but I simply cut and paste daily & add or remove activities. I use my iphone timer which is very simple. By using the timer when I sit for any of my meal times in particular, I now sit completely relaxed within that time frame and let the alarm on my phone tell me when I’ve reached my limit. It’s a peculiar feeling actually enjoying sitting. I can really see how the Explain Pain book starts to chip away ever so slowly at the protective wall that my central nervous system has built over time from prior painful and hazardous experiences. Time will tell😉

My chronic pain and recovery journey

• I’ve started this blog to show that I am a sufferer of chronic pain and have recently started a programme which I am excited about and am having positive results to date. I want to share my positive experience with other chronic pain sufferers and to give hope.  Chronic pain is not a life sentence and that positive changes can make your life happy, positive and fulfilling once again.  The programme involves a book called Explain Pain and an app called the Protectometer written by David Butler MAppSc, EdD together with Dr Lorimer Moseley PhD, FACP. Simply reading and understanding the scientific based information in the book and applying it to the Protectometer app empowers your brain and deep understanding of your condition and brings about the amazing improvements and changes to your chronic pain experience. I am not affiliated in any way with this organization but was simply offered this resource to read and judge for myself during a chronic pain flare. It gives me much hope for the future.