Keith Meldrum shares more thoughts as someone living in pain on pain. Keith has experienced 3 decades of pain after a near-fatal accident. Read on to hear his story and thoughts on resilience and self-management.
Keith has lived with chronic pain for nearly 32 years ( as of 2018), following a serious single-vehicle motor vehicle crash in 1986, in central British Columbia, Canada. As the sole occupant, he fell asleep while traveling on the highway and rolled his car down a large bank As he was driving an older car, he was only wearing a lap belt with no shoulder restraint, and while the seat belt saved his life by keeping him in the car, it slipped up to his abdominal wall and the rolling action of the car flipping down the bank tore through his left abdominal wall and his large and small bowels; he lost most of his blood volume through internal bleeding and nearly bled to death at the bottom of the bank, alone.
Following the initial emergency surgery, Keith required multiple follow-up surgeries over the years, and by the time he was 19 realized that he had persistent pain. Over the years, more abdominal surgeries followed in an effort to try to fix the pain until it was realized that surgery was not the answer. After trying different nerve block injection treatments to manage pain, in 2005 Keith was deemed to be a candidate for a spinal cord stimulator (SCS) program at a leading hospital in Vancouver, British Columbia, Canada. SCS for abdominal pain is not common as it is most effective for limb pain.
The SCS helped Keith manage his pain and was his introduction to pain science and the biopsychosocial model. The SCS was effective until it had to be replaced in late 2015 and since then it has not been effective. After a few revision surgeries, the pain specialists determined that he will best be served by a new SCS technology that is available in the United States but has not yet been approved in Canada.
Keith lives in Kelowna, British Columbia, Canada with his wife Barb, his stepson Chris, and Parker, their Australian Labradoodle. Keith is a Deputy Fire Chief for the City of Kelowna Fire Department and is responsible for Communications and Emergency Management.
Living with Pain Day 5: Resiliency
We are now on day five of #NPAW2018 #LivingWithPain and I would like to take a little time to talk about resiliency.
Personally, I find the topic of resiliency very fascinating as I am not sure how well it is really understood. What I offer is by no means a comprehensive and scientific analysis of resiliency but rather a little knowledge I have gained from some of the research I have done, and my opinions based on my experience with chronic pain.
From a dictionary definition perspective, resilience is defined as an ability to recover from or adjust easily to misfortune or change. The America Psychological Association (APA) speaks to resilience as the process of adapting well in the face of adversity, trauma, tragedy, threats or significant sources of stress — such as family and relationship problems, serious health problems or workplace and financial stressors. It means “bouncing back” from difficult experiences; they note that resilience is ordinary, not extraordinary (https://www.apa.org/helpcenter/road-resilience.aspx).
Resilience is within all of us and is one of the fundamental elements necessary when living with persistent pain. It is not a trait that people have or don’t have but rather it involves behaviours, thoughts, and actions that can be learned and developed. The APA goes on to say that being resilient does not mean that a person doesn’t experience difficulty or distress and that emotional pain and sadness are common in people who have suffered major adversity or trauma in their lives. In fact, the road to resilience is likely to involve considerable emotional distress. This is an important point as no one should feel that in these challenging times they *just need to be more resilient*. What I would offer is the importance and willingness to be open to learning these behaviours, thoughts, and actions necessary to help oneself; this starts to speak to self-management, which is something I will discuss in an upcoming post.
Research reveals the primary factor to resilience is a caring and supportive relationships within and outside of the family. Contributing factors to resilience are the capacity to make realistic plans and follow through on them, having a positive view of self and confidence in one’s strengths and abilities, effective communication and problem-solving skills, and the ability to manage strong feelings and reactions. Clearly, a lack of a supportive environment within and outside of the family is a significant challenge and requires effort to find and engage with those that can provide that care and support; I don’t mention this lightly as those of us that enjoy this have no concept of what it is like to not have this and the hardship this adds. It is my opinion that this lack of a caring and supportive environment is one of the main issues that lead people into a pain-centred life. The other identified factors are ones that can be learned.
Contributing factors to resilience are the capacity to make realistic plans and follow through on them, having a positive view of self and confidence in one’s strength and abilities, effective communication and problem-solving skills, and the ability to manage strong feelings and reactions.
However, with respect to learning these factors, like many new concepts in life, this learning may require a mentor or a coach. While these attributes are within many when dealing with a serious health issue such as chronic pain that often requires most of one’s energy to try and get through the day, it can be extremely challenging to find the time and the will to learn something new, and that is why it is important and necessary to be open to reaching out to others and seeking guidance. Effective health coaches are guides and I feel Ben Cormack‘s (Cor-Kinetic https://cor-kinetic.com/) quote speaks to this concept well when he said “I see myself as the coach not the star player. People get themselves better. We just point them in the right direction.” It is within us, but we may need some help in going in the right direction.
Health coaching can help improve outcomes by getting patients more involved in their own health (https://painbc.ca/coaching). I believe this is very important as, based on my experiences, validating, understanding, and engaging patients are critical components of the efficacy of positive health care and pain management; to achieve this, sometimes we need someone to help guide us. Someone like Amy is a good choice to help you learn these skills.
Be resilient, it is within you.
Living with Pain Day 6: Patient Engagement
On this, the penultimate day of #NPAW2018 #LivingWithPain today’s post is on patient engagement.
As I have done with most of the previous posts, I like to define the topic to offer context. One definition of patient engagement is to “promote and support active patient and public involvement in health and health care and to strengthen their influence on health-care decisions at both the individual and collective levels” (Coulter A. Engaging patients in healthcare. New York (NY): McGraw-Hill Education; 2011. p. 10). The World Health Organization has underlined the necessity of encouraging an active and participatory role for patients to enhance their well‐being and to improve the efficiency of the healthcare system (World Health Organization. Standards for Health Promotion in Hospitals. Barcelona: WHO, 2004).
So, what does this all mean; it means that for patient care to be truly effective, healthcare systems must engage patients as active, meaningful participants of the entire process.
I would offer that there are three levels to patient engagement; individual, community, and system. I believe that the Ministry of Health of the Province of British Columbia (https://www2.gov.bc.ca/…/patients-as-partners/patients-as-p…) speaks to the matter of engagement well (disclosure: I recognize that this model suits my bias as a British Columbian). At the individual level, the patient is actively engaged in their own health through self-management and an engaged role in healthcare decision-making. At the community level, patients, families, caregivers, communities, partners, etc. engage in the design. development, and evaluation of health care programs and services. At the system level, patients, families, caregivers, partners, etc. engage in policy development and strategic planning with respect to the system. British Columbia is just now starting to recognize the focused efforts led by Pain BC with respect to engagement as British Columbia moves toward the implementation of a Provincial Pain Strategy.
While systemic change is needed with respect to effective treatment and management of chronic pain, at the base level it must start with individual patient engagement. Recently, I half-jokingly referred to people that live with persistent pain as reluctant subject matter experts. For health care providers the best resource they have is the patient themselves; unlike an automobile mechanic that is tasked with determining and resolving complex mechanical issues based on their education and various diagnostic testing equipment, a health care provider has all these same tools plus the ability to engage directly with the patient. Science tells us that in addition to biological factors, pain is affected by psychological and social factors, something that automobiles are not.
Patents need to be given the space, in a safe and supportive environment, to share their story, and their narrative. By engaging with patients and asking them about their daily life, how their pain makes them feel; not only the intensity of the pain but how it affects their daily life, their mood, emotions, feelings, and ability to go about their routine and lives, provides a depth of information that can help the health care provider work collaboratively with their patient and find options to help them and for the patient to help themselves.
Science tells us that in addition to biological factors, pain is affected by psychological and social factors, something that automobiles are not.
Current medical practice is dominated by evidence-based medicine which dictates what therapies the clinician offers in a given circumstance, ideally supported by evidence-based guidelines. However, when taken alone, this tends to decentralize the patient (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5357296/). To actively engage with the patient, a key factor is for healthcare providers to focus away from strictly evidence-based medicine to narrative-based medicine. Evidence-based medicine is supported by a variety of clinical evidence, the highest being quantitative statistical analysis and randomized, controlled, and blinded clinical trials. A narrative approach combines evidence-based and narrative-based philosophies (fact-finding with empathy). I find the topic of narrative medicine very interesting and have read a number of articles on this and one article I found interesting is Narrative medicine: Caring for the sick is a work of art (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5553908/). The author, Dr. Rita Charon, make a couple of observations that resonated with me. She states that narrative medicine (which originated at Columbia University in 2000) is “a growing and deepening field of healthcare that equips clinicians with capacities of attentive listening and deep recognition of patients and self… Based on theories from literary studies, aesthetic theory, and phenomenology, narrative medicine provides a sophisticated means for clinicians to absorb attentively what they witness in healthcare and to come to understand something of the meanings of the events in which they participate.” She goes on to further say that “narrative medicine believes that creativity is at the heart of healthcare, that the care of the sick is a work of art. The encounters that occur in our clinic offices or EDs or ambulances are not bureaucratic or technical encounters, but creative, singular, exposing human experiences. The two persons involved—the patient and the clinician—are irreplaceable in the event.”
I find this final statement very powerful; the patient and the clinician are irreplaceable in the event. I am reminded of a very powerful slogan that has arisen from marginalized populations; in Latin, it is,”nihil de nobis, sine nobis “which translates to “nothing about us, without us.”
Living In Pain Day 7: Self-Management
Today, this last day of #NPAW2018 #LivingWIthPain and the start of #painrevolution, and I would like to finish the week talking about self-management.
Over the years of trying to better understand my pain and what I could do to help myself, I learned about the critical importance of self-management.
Self-management does not mean turning away from other treatments; that is not realistic or effective but rather self-management is about patients and health care providers working together. As challenging, tiring, and frustrating as persistent pain is, as patients we still have an obligation to do what we can to help ourselves. Again, this does not mean it is solely the patient’s responsibility, but evidence supports that self-management is an effective way of helping manage pain. I also understand that there are multiple different pain experiences and there is no single solution, no panacea but there are activities that can, for many people, help them manage their pain.
Self-management is one of the most important activities we can do to help ourselves and I refer to yesterday’s discussion about patient engagement; “the two persons involved—the patient and the clinician—are irreplaceable in the event.”
What is self-management? Pain BC speaks to it as “the skills and behaviours that can help people live well with a chronic condition. Self-management doesn’t replace physical therapies, medication, and psychological support” (https://www.painbc.ca/chronic-pain/self-management). Another definition is “the ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition” (https://academic.oup.com/painmedicine/article/…/1280/1840403). The underlying point is that self-management does not replace other forms of care or treatment, rather it is the patient’s participatory role in their own health care. Self-management is a key component of the biopsychological framework of chronic pain management.
As challenging, tiring, and frustrating as persistent pain is, as patients we still have an obligation to do what we can to help ourselves.
Self-management involves several things, including exercise/movement, breathing techniques, progressive muscle relaxation, guided imagery, mindfulness, journaling, and social activities with friends and family to name a few. What is important to note is that there is no set formula for self-management, rather each person needs to find what works for them and develop a realistic plan that is specific, measurable, achievable, relevant, and time-bound (SMART goals). We need to be deliberate in our goal-setting and ensure that we set ourselves up for success, not failure. At the most basic level, it is important to remember that we are better to do something rather than nothing; getting started is often the hardest part and our self-management plans need to be realistic otherwise we set ourselves up for failure, which can feedback in the loop of a pain centered life.
Movement and exercise are understood to be one of the most beneficial things we can do to help ourselves. Again, understanding that each person’s situation is different, and it is a matter of finding out what you can do, not can’t do. Physical activity helps improve physical and mental health and can be an effective tool in the management of chronic pain by reducing stiffness, increasing energy and stamina, improving sleep quality, as well as the psychological effects that one receives. The feeling of taking some control over one’s life, no matter how small that may be, can be extremely empowering. It is important to note that pushing through pain while exercising/moving is not the answer; it will take time to establish the baseline of exercise and movement where the pain starts to rise and when the movement helps the pain calms down is in short order. It’s about graded exposure which over time can allow for more and more exercise and movement. This is something I learned the extremely hard way as my default position was (and still is at times) to push and push which typically landed me in the hospital. I have since learned that graded exposure, and adjusting my movement and exercise goals to be realistic and achievable, allowed me to receive benefits from movement and exercise.
The feeling of taking some control over one’s life, no matter how small that may be, can be extremely empowering.
Recently, in September I had the privilege to finally meet, in person, two incredible people at the International Association for the Study of Pain’s (#IASP) 2018 World Congress; Pete Moore and Joletta Belton (we had connected earlier via social media). We were invited to IASP to present workshops on the patient experience regarding chronic pain. Pete and Joletta’s workshops were simply incredible. Pete is the founder of the Pain Toolkit (https://www.paintoolkit.org/) and he has developed some excellent resources regarding chronic pain based on his experiences; these resources are for both patients and healthcare professions. Joletta writes her empowering and moving blog My Cuppa Jo (http://www.mycuppajo.com/). This is based on her lived experiences with pain and her graduate degree in kinesiology and her depth and knowledge of pain science.
Living with persistent pain is hard, let’s not pretend that it isn’t. Like many, I work every day and getting through the day with the energy that I have and sometimes I get it spectacularly and terribly wrong. Over #NPAW2018 I have touched on the emotions that accompany chronic pain; these emotions are real and valid and are one of the many things that we need to find ways to effectively deal with. There is no rule book on how to live with chronic pain but there are some foundational actions and behaviors that we can follow to help live better with pain. I hope I have offered some insight into some of these. After more than 30 years, I am still learning, and I will continue to learn.
Thank you Canadian Pain Society and Pain BC for the ongoing efforts to help raise awareness of chronic pain, empower and educate patients and health care providers, and reduce the stigma of chronic pain.
Thanks for sharing your perspective Keith, we very much agree!
Enjoy an Podcast Interview with Keith with Mark Kargela from Modern Pain Care below
Don’t miss Part one of Keith’s post here.
For support don’t forget to join my Facebook support group. Go ahead and tag Keith and let him know what you thought.
