healthcare – Chronically Living

My Experiences of Lifestyle Changes for Chronic Pain

I feel a little bit of unease writing this post because I don’t want to give the impression that I think it’s completely possible for everyone to do this. In fact, prior to my own personal experience, I thought this was highly unlikely if not nearly impossible even though I’ve read about others doing similar things (reducing ANA, reversing illness, stopping illness progression, etc.) through a lot of the same methods I’ve used. I only started with lifestyle changes in order to reduce symptoms and general distress so that I could do more values-based activities. All of what I did was with the guidance, help and advice of amazing holistic healthcare professionals – my naturopath, my psychotherapist, my physiotherapist(s), my chiropractor(s), and my massage therapist(s). My primary care/general practitioner/family doctor (however you want to say it) and my rheumatologist(s) supported my lifestyle changes but never advised me on them. They deal with medications, and frankly that’s fine. I also want to say, my intention has never been to go off any medications. I like an East-meets-West approach to healthcare. All that said, here’s what I did (in order of appearance):

Stress Reduction – I learned a lot of coping skills to reduce my stress from my psychotherapist and have had regular acupuncture sessions with a naturopath for several years (minus 1 year where I didn’t have benefits).
Tied in with the above, regular meditation and eventually yoga practice. I continued to reduce and manage stress through these means. Mindfulness in general can really help with anxiety, depression, and has been shown to reduce pain in many, many people, across many, many studies. I currently meditate 20 minutes (minimum) per day and do yoga 4-5x/week (between 20 minutes to 1 hour each day).
Exercise – my exercise routine began with some work with a personal trainer who worked with autoimmune disease in the past, and then going to the gym 3x/week. When the pandemic hit, I began working out at home with some basic body-weight strength training exercises. I currently alternate strength-training with exercises given to me by my physiotherapist and chiropractor. On top of that I walk around 10,000 steps per day. I find that it works best if I pace by splitting it up with breaks and doing the same amount of activity each day. My physiotherapist and I are working on building up my strength so I can do more and longer hiking (currently I can do up to 1.5 hours, once or twice/week).
Stretching – I’m giving this it’s own category because it’s not ‘exercise’ and yoga, while can be a great stretch, is much more than that. I do several stretches daily that have been given to me by personal trainers, naturopaths, physiotherapists, chiropractors, and massage therapists. I stretch every part of my from my jaw to lats to wrists to legs to back to toes. I probably spend about 15 minutes just on stretches each day.
Diet/nutrition – this is something I struggled with for a very long time. I was recommended paleo diets and AIP protocols and this and that and I struggled to stick to any of them. So I made my own protocol/diet by just paying attention to how I was feeling after eating different foods. Then I eliminated what doesn’t make me feel good. I describe my current diet as “gluten-free pesca-vegan” because I mainly eat fish/seafood and then a vegan diet (no dairy) and gluten-free. (I probably should cut down sugar more and reduce alcohol a bit more but I’m getting there). I’ve been on this “diet” since last November. What’s made it easier for me to stick with is actually that I’m cognitively flexible with it. What I mean is, if I’m out and there are no (or very limited) options for this way of eating, I just eat whatever. If I’m at someone’s house and they serve meat or gluten or whatever, I eat it. This happens at most once/week and often less than that.

This is just my experience. I’ve been able to go off of one medication entirely, one medication was reduce to “as needed” (granted I supplement CBD instead daily – 10mg), and my rheumatologist reduced one medication a few weeks ago from 2000mg/week to 1400mg/week. Despite my lower ANA I do still have some symptoms – a bit of inflammation, some pain, but overall it’s a lot better than it used to be.

Have any of you found a difference with lifestyle changes?

Keep making the most of it everyone!

Always seek help from qualified healthcare professionals before making any lifestyle changes.

The Meaning of Yoga and How it Can Help Chronic Pain

For those of you who are against yoga, because some random person said to you once, “But have you tried yoga?” when you were telling them about your pain or illness, just stay with me for a second. No one likes unsolicited advice, but I’m guessing that if you’re here, reading this blog post or looking at this blog at all, it’s not really considered unsolicited. There is actually a lot of evidence that yoga can be helpful for pain, and I have personally found a huge difference after beginning to practice restorative yoga at the beginning of the pandemic (circa April 2020 is when I began).

I began my meditation practice a few years before my yoga practice, but became consistent with both around the same time.

Let’s start off by reviewing some of the research as to what yoga can help with and if it actually is beneficial. Guess what? The research is overwhelming a yes, yoga is helpful for chronic pain. There are tons of studies on it but I just picked three for the purpose of this post. Tal, Unrah & Dick (2011) found that pain patients in their study were able to “reframe what it is to live with chronic pain.” What does that mean? Well, not all of there patients actually decreased in the pain itself, but most found that the pain bothered them less. In other words, it was less interfering in their daily lives. Skip ahead to 2019 where Uebelacker et al. found in their study that pain patients who did yoga saw their moods improve, decrease in their anxiety levels and decrease in their pain levels. That same year, Schmid et al. (2019), found that pain patients who engaged in yoga had better occupational performance (they could return to work, do well at work), were more engaged in their regular daily activities, and had less depressive episodes.

I normally practice at home via YouTube, but I do love having an opportunity to do an in-person class, especially if it’s outside.

This research is all well and dandy but the original intent of my post was to look at the meaning of the word “yoga” and how that in itself shows how it can be helpful to us chronic pain warriors. Yoga is derived from the Sanskrit word “yuj” which means to unite (or unity). This describes unity between the individual with the universe, person with nature, and importantly, mind with body. This is likely why we see things like mood improvements and decreases in anxiety in people who practice yoga, which is mindful movement. A yogi is someone who is self-realized and self-realization leads to freedom. Linking back to the research, freedom to work, freedom to engage in activities, and freedom from pain being “bothersome.” Finally it’s important to note that health (both physical and mental) is a natural result of practicing yoga, for all of the above reasons. Do you have to practice yoga? No. But I also don’t see the harm in trying (assuming you have consulted with your healthcare team).

I also want to mention that I always modify poses so they are safe and comfortable for me to do.

I hope this brings some insight. Keep making the most of it!

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My Experience at the World Pain Summit ’21, Part 2

If you read last week’s blog post then you know that I recently attended the World Pain Summit, put on by the Alberta Pain Society. I did this as both an allied healthcare practitioner (as a clinical counsellor) and as a person with lived experience. By the way, this event is apparently always free to people with lived experience, so keep an eye out for it next year. The summit was 3 days and had so much info, that this is going to be part 2 of a 3-part post, and focuses on the content of Day 2. Without further ado, here’s what I learned.

Image from: https://www.facebook.com/hashtag/wps21

How Living with a Dog Can Improve Quality of Life and Well-Being in People with Persistent Pain. The first bit of interesting info was a bit of an aside – only 1% of the curricula for healthcare professionals is on pain, which means if your doctor doesn’t understand (and isn’t attending these kinds of conferences) that is likely why (definitely not an excuse – all healthcare professionals should be attending conferences/summits/etc throughout their careers). The most interesting parts of this session was the statistics on dog/pet owners (cats and other kinds of pets count):

they report lower pain
less depression and anxiety and loneliness – i.e., better mental health
improved well-being and meaning/purpose in life

Having a pet also gives you a non-judgmental listener whom you can talk to, and petting an animal releases oxytocin in our brains, which has a calming effect. Yay for pets!

Is Supported Pain Self-Management Your First Choice or Last Resort?: 5 Key Coaching Support Skills. This was present by Pete Moore, a person with lived experience, who wrote a book on the subject. The 5 key skills he talked about were: (1) goal setting and action planning; (2) practicing daily activities – I know ADLs can be hard for some people but they are important to well-being; (3) problem solving; (4) keeping active, moving, including stretching and exercise; and (5) knowing what to do if you have a set-back (i.e., planning for that in advance). Much of this involves having a support team, pacing, prioritizing, being patient with yourself, learning relaxation skills, tracking your progress, and resilience.

Pete Moore presented this cycle, which really resonated with me and probably many others.

How a Pain Doctor is Using Social Media to Spread Knowledge About Chronic Pain. This was a session more for healthcare professionals on how to start a YouTube channel (and why they should). But some interesting factors for Spoonies: the current quality of medical information on YouTube is very low, so please be careful and look for trusted sources (i.e., trained healthcare professionals in different areas).

My YouTube channel is for meditations (with an emphasis on pain and illness).
Let me know if I should include other psychoeducational content and skills.

Trauma, Illness, and Healing – Dr. Gabor Mate’s keynote. I’ve written a ton about Dr. Mate’s work in the past, and there was obviously some repeat in content about trauma, childhood abuse, insecure attachments and stress and their relationship to chronic pain and illness. A couple of things I will share:

mind body practices (like yoga) should be included in chronic pain treatment
a lot of back pain is associated with psychoemotional stress (tension, stress, trauma)
Go to a physician for what they can do (prescribe medications, perform surgery, etc.) and find other practitioners to help you with the other parts of treatment
diagnoses are descriptions, not explanations
psychological and spiritual support is important

If you’re not familiar with Dr. Mate’s work, check out When the Body Says No (I also did a post about the book awhile back).

Dr. Gabor Mate is world leading expert on the trauma-stress interaction with illness.
Image from: https://californiahealthline.org/news/addiction-rooted-in-childhood-trauma-says-prominent-specialist/

Challenging Chronicity Thoughts: Words Matter. So this was a mental health session, if the title isn’t clear! It emphasized that psychological factors are an important component of pain experience and are the most powerful psychological predictor of adverse health and mental health outcomes associated with pain – they even affect our treatment responses to medications, injections, physical therapy, and most other treatments. Recovery is not just about talking (to a therapist), needs and activity but also about ways of thinking. Two important notes for my fellow Spoonies: (1) pain is perceived by your brain (all in your head) but it is real; and (2) the word pain takes you right to thinking about/feeling pain (check out this podcast episode I did on externalizing language and pain/illness).

Chronicity thoughts are about way more than language. I highly recommend seeking therapy if you find you think about your illness/pain a lot.

Next week I’ll bring you a post on the information from the final day of the summit. I hope that you find some of this helpful when thinking about illness and well-being. Keep making the most of it everyone!

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My Experience at the World Pain Summit ’21, Part I

This past weekend I attended the World Pain Summit ’21, which is put on by the Pain Society of Alberta, and has speakers and attendees from around the world. I attended as an Allied Healthcare Professional with Lived Experience (the options were: Physician, Physician with Lived Experience, Allied Healthcare Professional, Allied Healthcare Professional with Lived Experience, and Person with Lived Experience). By the way, this was free to attend for non-healthcare professionals with lived experience (only about 150 people with lived experience only attended out of 1600ish attendees). The summit was 3 days, had incredible expert physicians/allied healthcare professionals/researchers, giving the latest and important information on treating chronic pain and chronic pain research. I attended a lot of sessions, so I decided to make this into 3 posts so that I could relay as much as possible. Part 1 is a recap of Day 1 of the summit.

Social Media & Pain. There were 3 presenters on this one – a researcher, a physiotherapist, and a person with lived experience. Much like last week’s blog post, they went over the good and the bad of using social media, both as a person with lived experience and as a healthcare practitioner. The good includes learning, community knowledge, knowledge construction, combatting isolation, raising awareness, and validating common experiences, among others. Again, they recommend not using social media for medical treatment and to be careful when sharing personal information online. The part of this that I want you to take away is when they talked about this: “Pain is normal. If you expect to be outside of pain 100% of the time, you’re wrong.” Because that’s impossible. Pathologizing pain to the extent we do (especially online) is like pathologizing blinking. It’s not something we necessarily can (or need to) fix but rather live alongside. We need to view our normal responses to an abnormal situation (chronic pain) as just that.

Two of the social media presenters are members of GAPPA, which I’m looking into joining as well.
Image from: https://twitter.com/keith_meldrum/status/1364123971914919938

Head Injuries & Migraine/Migraine Disease Management. These were 2 separate sessions, with some overlapping content so I decided to talk about them together. Post-traumatic headaches from head injuries often resemble migraines, and migraines themselves can be considered a disease because there are changes in both brain structure and function. There are some non-modifiable risk factors for migraines (female, low SES, head trauma, genetics/epigenetics, childhood abuse) and some modifiable ones (these are important): obesity, medication overuse, caffeine overuse, and depression/anxiety. There were several recommendations for treating migraines, using the acronym BRAINS. Biobehavioral therapy/biofeedback/mindfulness/CBT/physical therapy; (which includes coping sills like self-monitoring, pacing, relaxation, self-talk, connection, and treatment of trauma/mood/cognition). Risk factor modification and lifestyle (diet, exercise, sleep). Adjunctive therapies (neuroceuticals, neurostimulation). Injection therapy/onabotullnumotoxin A/extracranial nerve blocks. Neuropharmacology. Support and Education. AND SLEEP HYGIENE is important (check on my podcast on that here.)

Image from: https://msktc.org/tbi/factsheets/headaches-after-traumatic-brain-injury

The Painful Implications of Psychological Trauma. There is, as I’ve written before, a strong correlation between trauma and chronic pain/illness. This was an important session for my as a psychotherapist. Mental health treatments for chronic pain & trauma should include healthy coping skills, CBT for pain, radical acceptance, trauma-focused therapy/exposure therapy, mindfulness, trauma processing, body awareness, somatic treatments, and behavioural activation. Two really important pieces came out of this. The first was for physicians: the most powerful thing you can say to clients is “I believe you.” I hope that they take that seriously. The second is for those of us with lived experience: pain is a psychological phenomena but that doesn’t mean it’s not real. The example given was how temperature is experienced by different people differently (for example, my mom is always hot and my dad is always cold). Our brains are involved in everything we think, feel, sense, etc. But all of that is also real.

It doesn’t matter if it is Big T trauma, little T trauma, PTSD, or any of the other terms used – they are all trauma and should be treated as such.

How Our Brains Make Unconscious Judgments and What We Can Do About It/Social Innovation on Equity and Diversity Inclusion. There were 3 sessions in the afternoon. I attended two of them and watched the Q&A. This session was presented by a trans woman. The other two were by Indigenous peoples. This was the social justice, diversity, and inclusion part of the weekend. There was so much great information that I hope all healthcare practitioners learned from. The part of this particular session which is helpful for everyone are the strategies to reduce our bias (because we ALL have bias – unless you literally without a brain). Avoid blame or guilt. Focus on the impact, not the intent. Choose a positive attitude. Recognize bias in action and take action. Micro-affirmations. Active listening. Be intentional. Avoid generalities. Question the reliability of sources. Treat people as individuals, avoid assumptions. Get to know people who are different than you. Practice the Platinum Rule – do unto others as they wish to be treated. The last session had to do with patterns of change and what some healthcare organizations are doing to make these changes.

Pride 2019. We are all human. Our pain (physical or emotional) is all real. We deserve to be treated as such on both of those counts.

Okay, so that was a lot of information (and that was just Day 1). I will likely be doing more individual posts and/or podcast episodes about some of this information in more detail as it might be relevant to chronic pain/illness warriors. If you have any requests from anything from this post, let me know by commenting or DM-ing me on Instagram. Part 2 comes next week. Keep on making the most of it!

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What Should We Know From the Collective Trauma Summit?

I attended a few sessions from the virtual Collective Trauma Summit last month. I’m always looking to further my knowledge and professional development, especially as I start to practice as a psychotherapist. There is an overlap between trauma and chronic illness, which I think can also be important for us to understand. And by us, I don’t just mean healthcare professionals, but also persons with lived experience. Why do I think it’s important? Because I’ve seen a lot of people (mostly online in support groups) wonder about the whys. Does knowing why actually help? I think that can be a difficult question to answer. For some people yes, for others no, and some fall into the “kind of” realm. Regardless, there was some information that I gathered that can be helpful to us all. So, without further ado, here it is:

Image from: https://collectivetraumasummit.com/

Application of Polyvagal Theory for Safety and Connection with Others – Stephen Porges and Deb Dana
For those of you not familiar with polyvagal theory or the vagus nerve, I don’t do a great job explaining it, but check out this YouTube link featuring Stephen Porges explaining it, and for more on the vagus nerve, check out this podcast episode with Melanie Weller. This session of the summit spoke a lot about embodiment. We can learn to coregulate each other – connection is essential for humans. Learning to both sit still to feel our bodies (without a narrative) and how to come back to our bodies is important for healing – but also a slow process and should only be done with a trained professional. Building an awareness of what’s happening in our bodies, as well as what we are thinking and feeling is important. Trauma can be passed down intergenerationally through our nervous systems. They also have a Safe and Sound Protocol (SSP) that sounds super interesting and I’m going to probably learn more about. If you’re in therapy, it can be good to find out whether your therapist is “polyvagal-informed” because of the amount of research backing the theory.

How Our Nervous System and Real Connection Are the New Frontiers to Healing Trauma – Daniel J. Siegel
This session also focused a lot on embodiment, which I’m a huge fan of anyway (especially for chronic illness/pain). Dr. Siegel talked about resonance between people (again, connection is important) and also the ideas of intraconnectedness (wholeness of everything) and interconnectedness (with others through our bodies). As a species we tend to be disconnected from nature (and thus why we have some many environmental issues). He talked about how integration is health – not just at an individual level but also at a collective level, and what trauma does is impair that integration. He suggested that the plane of possibility is achieved through connectedness (with each other and nature), open-awareness, and love (compassion). Self-compassion and developing awareness is something I talk about a lot both on the blog and the podcast (and I have a few meditations for both on my meditation channel), again because of the amount of research supporting them for both physical and mental health.

Returning to Ourselves After Trauma – Gabor Mate
Okay, we all know by now that I’m a huge fan of Dr. Mate’s work, so of course I attended this session. He gave some interesting statistics that I’m going to share with you. (1) Women with severe PTSD have double the risk of ovarian cancer; (2) Indigenous people have 3 times the risk of rheumatoid arthritis than non-indigenous people; and (3) with Covid-19 with see that indigenous people, POC, and the elderly are most at risk because they are the most oppressed and traumatized. In other words, we’re looking at the sociological issues of disease which are often ignored. He also talked about embodiment in his session. In this case he referenced how we often are split between an intellectual awareness of things and an embodied awareness, which can be a traumatic imprint (in other words, the body remembers). Again, we should be asking ourselves “what does this feel like inside my body” instead of just “what do I know intellectually.”

So, what can we do with all of this information now that we have it. For one, if you don’t see a mental health professional to help you with your struggles with the mental health components of illness, that might be something you want to look into. Alternatively there is a lot of self-help out there (including by all of these healthcare professionals who have written many books on these subjects) and do things like build awareness, self-compassion, and embodied experiences (again, I offer these on my meditation channel but you can also find them by others various places online). Healing is possible. Healing is slow. Take care and keep making the most of it everyone!

Self-compassion, awareness, embodiment, nature.

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How Can I Become More Resilient?

This isn’t the first time I’ve posted about resiliency on this blog. The truth is, it’s a topic that comes up often. I see it on online support groups, on Instagram, and hear it in conversation with people. I also read it on other blogs, and many healthcare organizations post about it on their sites. Here’s the thing, if you have a chronic illness and you’re not feeling resilient, just know that you are not alone. A lot of people feel that way. Are people born resilient or do we develop resilience? I think it’s an interesting question and possibly a bit of both. Children tend to be more resilient than adults, suggesting we can lose some resilience as we age. In one of my courses for my graduate degree we had to more-or-less do a family tree. Except this family tree was supposed to trace something like a mental health or substance use issue. I chose to trace resilience, and found that going back just to my grandparents generation (that was the requirements for the project) there was a strong theme of resilience (my maternal grandmother/baba faced abuse, neglect, lost 2 children, and she and my mother were trapped in Siberia for a week during the Cold War – I know it sounds too crazy to be true). Yet she not only survived but was a loving parent to her other children and an amazing grandparent. Had my mom not shared my baba’s history I would not have know. She was that resilient.

Three generations of resilience in my family.

The good thing is, that even people with chronic illness can develop resilience. Warning: it does require work on your part. Luckily, some of the work may not feel like work at all… it just requires consistent commitment to it. I want to add, that many of these suggestions overlap with what the National MS Society suggests, in case you don’t want to just take my word for it.

finding meaning and committing to that action: what is the reason you get out of bed in the morning? If you don’t have a reason it will be difficult to do so. Is it your family? Or work? I know a lot of people with chronic illness go on disability, but work provides meaning and purpose for people. If you are on disability what is your purpose going to be instead?
improvisation/adaptability/problem solving: I think these all kind of overlap and go together. We often have to improvise in order to do things we enjoy. Maybe we can’t go on the 5k walk with our friends, but we could meet them for coffee afterwards. How flexible and adaptable are you to changing plans? Or asking others to? What’s an alternative way you can participate or do the things you like to do? I would go as far to make a list of ideas (remember when brainstorming there is no such thing as a dumb idea) and try out some to see if they work.
Self-care: we all know I love self-care, and this includes the basics (getting out of bed, making breakfast, taking a shower) and then doing activities like relaxation techniques, yoga, meditation, or prayer. What hobbies do you enjoy that you can participate in? Pick one a day. Reading is an example of something that is low energy and can be fulfiling.
Being able to tolerate “negative” emotions: I personally don’t categorize emotions as negative or positive. All emotions are important because they tell us very important things. If you’re not used to be able to just sit with emotions, try out this mindfulness practice that aims at helping people do just that.
Self-efficacy: I did a post on this recently, and you can read it here. Do you believe you can cope with your illness? Part of this is being a realistic optimist, being hopeful.
Using skills such as curiosity and humour: When is the last time you laughed? Are you able to have fun and joke around (and not in a self-deprecating way)? Do you get curious about your situation or feelings or sensations or emotions? What are you noticing about them right now as you read this? The noticing self is a helpful skill to develop. We touch on it in this podcast episode (about half way through).
Radical acceptance: This is a skill from Dialectical Behaviour Therapy (DBT) and essentially the same used in Acceptance and Commitment Therapy (ACT). It is about fully accepting your situation/thoughts/feelings/sensations/etc. Fully. Accepting. It doesn’t mean you have to like it. It’s hard to do a lot of the above without this kind of acceptance.

My curious, nonjudgmental, accepting, “what am I noticing” face.

I hope this helps give you some ideas for building resilience some more. Well-being and a good quality of life do require us to be resilient, and trust me, it is possible even with chronic illness. Here’s the link to the MS Society page on resilience. Take care, and keep making the most of it!

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How Can I Improve My Self-Efficacy with My Chronic Illness?

Back in the summer and fall of 2016 I wondered how much I would be able to accomplish in my life. Can I even manage through the situation I’m in? Particularly with my physical health, having recently been diagnosed with an autoimmune disease, and then the mental health consequences (mainly anxiety) that had come along with it? My partner and I were fighting a lot, despite having only moved in together a few months earlier. What would happen to my dreams of being a filmmaker if I can’t be active on set for 12+ hours straight? My self-efficacy was falling and falling…

Since 99% of the photos I have from that summer/fall are of my dog (RIP) I can tell what it was like for me.

Self-efficacy is our beliefs in our ability to cope or succeed during a difficult situation. Those with higher self-efficacy, have higher beliefs in their abilities, and those with lower have, well, lower. I see this a lot within the chronic illness community, and it makes sense, because as the opening story pointed out, I’ve been there too. The pain, and discomfort or disability from having one or more chronic illnesses messes with one’s self-efficacy because of the drastic changes it makes to our lives. However, having high self-efficacy has been linked to better quality of life and less disability from illness, so it’s important for us to find ways to improve it. But how do we go about doing this?

Drastic improvements in self-efficacy by the time I took this solo trip to LA in 2018.

I looked at a number of research studies to find some answers, because it is a good and important question. The studies were all from 2010-2021 and the illnesses included ranged from COPD to diabetes to people with multiple chronic illnesses. These are some of the ways to improve self-efficacy, which is directly linked to self-care ability, and you’re about to see why:

more physical activity – yes, this can be hard for people with chronic illness, which is why I recommend starting slow and building up, and working with appropriate professionals such as physiotherapists and personal trainers.
healthy eating – eating a nutritious diet can improve our ability to cope, but this can be a struggle if you’re not used to eating one, so take this slow, one meal at a time.
a lower emotional response to your illness – this is because of the mind-body connection (check out that podcast episode here). This can be accomplished with the help of a psychotherapist and by practicing things like meditations (like these).
having less perceived consequences from your illness – I think this is much more difficult to accomplish and can take much more time -change is slow! This will likely improve as other areas improve, and working with a whole team of healthcare professionals was helpful for me.
problem solving – our ability to problem solve is linked to self-efficacy in a variety of contexts. Working with appropriate healthcare and mental healthcare professionals on problem solving is a helpful way to learn to problem solve so that you can do more of it on your own in the future.
having more social support – build that network! I find that online support groups aren’t always the most helpful because sometimes it’s negative feeding negative, but if you find it is helpful for you then go with it. Also utilizing your family, friends, and any local peer supports you have is important.
having a good understanding of your illness – and this means not just the bad parts, the terrible outcomes, but also looking for success stories, as in people who have a good quality of life with your illness. The full range of human experience is important to consider. I call myself a realistic optimist.
having doctors who use person-centred communication – I’ll admit this can be hard to find, and if you have the ability to “shop around” for one that does use this then that might be a good idea. This type of communication includes fostering healing relationships, exchanging information, responding to emotions (yes, doctors should understand that you will have an emotional response to your illness), helping you manage your uncertainty about your illness, making decisions collaboratively, and enabling you to be able to self-manage your illness.

As my self-efficacy increased, my drive to help others did too! Masters degree convocation grad pictures June 2021.

Cut to summer 2021 and my self-efficacy is high. I’ve traveled, both with others and by myself between 2017 and 2019. I exercise regularly, try to eat healthy, problem solve well, cope with my emotions, don’t perceive myself as having a disability, am always learning more about my illness, have a great support system, and while I don’t currently have a doctor because I’m going to be moving soon (for the last time for a while) I know that I can find one like the previous ones I had. I utilized a full team of healthcare professionals and took a lot of ownership over my own health in my journey the past 5 years. However, if you told me 5 years ago that I could get here, I probably wouldn’t have believed you. Change is slow. You can keep making the most of it though!

New (and much more refined) season of the podcast launched this week! Available everywhere you get them (here’s the web link!)

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Expressive Writing for Health & Mental Health

I love writing (hello, this is a blog after all) and I’ve always found it to be helpful for me in my own life (and health) journeys (that and music). I came across some research on the mental and PHYSICAL health benefits of expressive writing, so I did a bit more digging and damn, we should all be doing more of it! And hopefully, this post will inspire you to do some. Hearing that there are mental health benefits is probably less shocking than that there are physical health benefits to expressive writing, so we’ll start there, but before we get into that, let’s quickly establish what expressive writing is. Expressive writing is simply writing about our deepest thoughts and feelings about an event or situation, without holding back. When people do this, it is often through journaling, and is often free-writing, without too much thinking about it. It can be done on the computer or by hand, really whatever you prefer. The leading pioneer in this research is Pennebaker (too many articles to site them all), but I’ll site some of the other research on the subject (which also references him) at the end of the post.

Buying a journal (or using an online one) can get you in expressive writing mode.

Okay, so the mental health benefits:

reduces stress
reduces symptoms of depression
reduces post-traumatic symptoms
improves mood
improves focus and concentration – including in people with ADHD
improves working memroy
improves emotion regulation (which is our ability to control the quality, frequency, intensity and duration of our emotional responses to situations)
and it increases our self-awareness

If these aren’t good enough reasons to do some expressive writing, then maybe the physical health benefits will convince you:

decreases the number of doctor’s visits you’ll have
reduces the number of days spent in the hospital
reduces the overall number of hospitalizations – i.e., people with cystic fibrosis
reduces blood pressure
reduces chronic pain – i.e., cancer and chronic pain conditions
reduces the severity of inflammatory conditions – i.e., rheumatoid arthritis, lupus (SLE)
improves immune functioning – i.e., cancer, HIV
improves lung functioning – asthma
improves liver functioning
improves and speeds up post-operative recovery
improves overall physical well-being

Image from: https://frugalentrepreneur.com/2017/12/what-to-offer-your-employees-to-improve-their-wellbeing/

And then, if that’s still not enough for you, there are some other general benefits:

reduced number of “sick” days from work plus faster return to work if you were layed off
increased GPA in university students
improved sporting performance in athletes

Even improve sporting performance! Me and some friends after a curling tournament in 2019.

Okay, so how does this all work? I mean, I understand how it can improve some of the mental health problems we may experience, because we’re writing about our thoughts and feelings. But how does it improve our physical health? Well, actually the two are related. Remember that stress has a HUGE impact on our physical health, and the mind and body are connecting, meaning that anxiety and depression can also feed into (and trauma can cause) physical health problems. The processes of expressive writing are as follows:

it allows for cognitive processing and restructuring of painful events and situations – cognitive restructuring changes how we perceive emotional stressors (both internal and external)
it allows for repeated exposure – which is controlled re-experiencing of events and situations so that they have less influence over our minds and behaviours

Image from: https://www.avalonintegrativewellness.com/blog/what-is-cognitive-restructuring/

Improving our bodies, improves our minds and vice versa. Here’s the podcast episode on it.

How do we engage in expressive writing? According to the experts we need to write about our deepest thoughts and feelings, without holding back, about situations or events or really anything relevant to us at this moment that are painful. This could be anything from having cancer, to spending time in the hospital to going through a traumatic event. When we sit down to write, it should be for 15-20 minutes at time, without stopping, and be done on 4 consecutive days. Just doing that is enough to lead to all the benefits I listed earlier. It’s possible that more consistent writing could have more improvements, but I honestly didn’t find much on that. So, I’m curious, who’s going to try out some of this expressive writing to see if it helps?

I want to remind everyone that in addition to this blog, if you’re looking for more information to improve your health, I have a podcast: Chronically Living and how to make the most of it, which is available on Apple, Spotify and everywhere else you get podcasts, including this web link. I also have a YouTube channel for those of you looking to incorporate more mindfulness as it has a number of benefits for your physical and mental health as well: Kelsey L Harris Meditations.
Until next week, keep making the most of it!

References:

Baikie, K.A., & Wilhelm, . (2018). Emotional and physical health benefits of expressive writing. Advances in Psychiatric Treatment, 11(5), 338-346. https://doi.org/10.1192/apt.11.5.338
Lepore, S-J., Greenberg, M.A., Bruno, A., Smyth, J.M. (2002). Expressive writing and health: Self-regulation of emotion-related experience, physiology and behaviour. In S.J. Lepore & J.M. Smyth (Eds), The writing cure: How expressive writing promotes health and emotional well-being (p. 99-117). American Psychological Association. https://doi.org/10.1037/10451-005
Stanton, A.L., Danoff-burg, S., & Huggins, M.E. (2002). The first year after breast cancer diagnosis: Hope and coping strategies as predictors of adjustment. Psycho-Oncology, 11(2), 93-102. https://doi.org/10.1002/pon.574

Spoonie Stress

It’s not really a surprise that Spoonies have more stress than healthy folks. Chronic illness and chronic pain warriors just have a lot more to deal with. Coming up with ways to relieve stress is important, and something I try to pay attention to. As stress accumulates it can lead to mental health problems, and quite often, especially with autoimmune diseases, flares. Today I thought we’d focus on some causes of stress and I’ll give some ideas (that work for me) for you to try out to see if they help at all.

First, I thought we’d start off with a few definitions. The reason I want to give these is that often as a therapist-in-training, I see that people don’t really understand the meanings of the words they use, nor are they aware of the difference appropriate emotional responses and ones that don’t fit the situation.

stress – normal, physiological reaction caused by the fight-flight-freeze response in our brains, alerting us that something needs our attention. It’s neither good nor bad, but is a signal telling us that we need to act on something. podcast
anxiety – “an emotion characterized by feelings of tension, worried thoughts and physical changes like increased blood pressure” (American Psychological Association). Anxiety is also not inherently good or bad. It’s another natural response of the fight-flight-freeze part of our brain. It’s also normal and part of what makes us human. There is no way to be totally free of anxiety. Fear, on the other hand can be extremely protective and it can be easily confused with anxiety. podcast
- Anxiety disorder: anxiety that is out of proportion with the situation, and is long-lasting and severe can indicate an anxiety disorder. Someone with an anxiety disorder has “recurring, intrusive thoughts or concerns” (APA)
depression: an emotional disorder that can include feelings of sadness, loss of interest in pleasurable activities, and low energy and motivation. Sadness is a common emotion that is important to our functioning. Depression occurs when sadness doesn’t just “go away” on its own. Both anxiety disorders and depression are helped with psychological treatments. blog, podcast
trauma – “an emotional response to a terrible event like an accident, rape or natural disaster. Immediately after the event, shock and denial are typical. Longer term reactions include unpredictable emotions, flashbacks, strained relationships and even physical symptoms like headaches or nausea” (APA). I’ve heard this one be misused often, so just be aware of whether you’re actually experiencing trauma. This can also be helped with psychological treatments.

Understanding mental health concepts can be helpful for managing it.

Okay, now that we’ve got that out of the way. What are some common causes of stress in Spoonies?

physical symptoms – flares, pain, and basically any other annoying and/or debilitating symptom that comes with your chronic illness. blog
medical gaslighting – when a doctor or healthcare professional dismisses your pain and/or symptoms. podcast
interpersonal relationships – difficulties with your partner, family, or friends often stemming from a lack of understanding of your illness. blog
finances/insurance – even with insurance there is a cost of medications and other treatments that may not be covered or give you as much coverage as you need. blog

Side effect from my hip arthroscopy that definitely caused me some stress.

These are of course, just a few, and you may experience a lot of other stressors depending on your illness and overall life situation. The point out reducing stressors like this is to improve your overall quality of life. So, here are some suggestions that I’ve found to be helpful for each of these (I’m going to link some of my other posts and podcast episodes in case you want more in-depth information).

Mindfulness, exercise, sleep, and diet. This means daily practice of whatever way you stay present. Getting whatever type of exercise is accessible during the day (even if it’s a short walk). Practicing good sleep hygiene. And eating as healthy a diet as you can. podcast, podcast, podcast, podcast (yes, one for each of these).
Being a self-advocate when it comes to your health and knowing your rights. The medical gaslighting podcast episode I mentioned earlier goes into being a self-advocate. For disability rights check out this podcast.
Effective communication and emotional regulation. We can’t control other people but we can definitely control ourselves, even if our emotions are high. podcast
Budgeting, budgeting, budgeting. I am without health insurance for the first time in many years. And yes, I live in Canada where healthcare is “Free” (with the exceptions of medications, dentistry, and adjunct care such as physio/chiro/naturopath/massage/etc). Yet I’ve seen the chiropractor twice in the past 3 months (with another appointment today) and gone for a massage. I’ve very meticulously budgeted these in because they are so helpful. The blog post mentioned for finances incorporates budgeting.

There are lots of ways to decrease stress. I enjoy some light exercise in nature.

On top of all this, practicing self-care (podcast) is very helpful. If you don’t like the term “self-care” because it’s been waaaay overused in the media than maybe think of it is as “ways to improve my overall health.” It includes domains of : physical, emotional, intellectual, social, spiritual, and work. It is also incredibly helpful in reducing stress levels. I’m going to be hosting a self-care challenge starting on April 24 on the premium blog. To sign up for the challenge it is only $5 and you get 4 weekly premium posts, motivation for the challenge, ideas and help with the challenge, and an opportunity to be featured on the blog and/or podcast! Stay tuned for more!

Until next week Spoonies, keep making the most of it!

Top 10’s: Ways to Improve Your Physical Health When You Have a Chronic Illness

I will start off by saying that a “top 10” is no way a comprehensive list, because there are lots of ways you can improve your health (or at least keep it at base line) when you have a chronic illness. A lot of this I’ve learned through my own trial-and-error, through my studies and work in psychology/psychotherapy, and from conversations with other Spoonies and healthcare professionals. So, this is basically my Top 10 list, and I’m hoping you can pull a few things out of it if you haven’t been doing these already. I’m also going to link some of my blog posts and podcast episodes if you want to have a deeper dive into these topics. Also, I couldn’t determine an order for these, so they are not necessarily in order of importance (assuming there is one)!

Eating healthy. This is so important and often overlooked. Eating food that is organic and free-range is ideal, though if you’re like me this might not be affordable. If that’s the case, throw in some of that where you can and otherwise focus on the food groups, especially lots of green veggies. Limit your red meats, and of course limit any food that makes your symptoms worse (for some people that’s gluten or dairy). Be open to trying out different diets (Paleo, Keto) or fasting – but always consult with your healthcare professionals first. Check out this blog post on eating healthy, and this podcast episode on living with allergies.

Drink lots of water. 6-8 cups a day is ideal. I’m currently doing a challenge through Shape and Foster and part of that challenge is drinking 1.5L of water per day. Honestly, some days I really struggle but I also notice that the days I drink that much water, I drink less other stuff (that’s not healthy) and I feel the best. Water is important for our overall health and can’t be overlooked! I’ve got a blog post about it, and it is an essential of health which I discussed on the podcast.

Take your meds! Medication management can be super annoying but you’re being prescribed them for a reason, and there is typically a lot of science around them. I sometimes forget to take my meds (not going to lie) but again, I do feel best when I take them as prescribed. This doesn’t just go for Western medication either, try out some Eastern ones (head over to a naturopath, chiropractor, or other practitioner) to get some holistic care going. I’ve got a blog post about health management, and a podcast about holistic options.

Sleep hygiene. It’s so important for our physical (and mental) health to get a good sleep. Our bodies need to feel energized and rested when we wake up. Spoonies definitely have extra challenges with sleep. I often toss and turn because I’m never comfortable. However, doing proper sleep hygiene can at least minimize some of these problems and get your a better sleep. When I have proper sleep hygiene, I notice a 50-80% improvement in my sleep! No jokes! Check out the blog post and podcast episode for more.

Take your meds, get some sleep (or end up looking like this!)

Exercise. Yes, exercise definitely helps with pain reduction, and can increase things like mobility. There is a ton of science behind it. That being said, you have to be careful not to go over your limits (i.e., just push yourself to your edge but not beyond it) because you don’t want to hurt yourself. Low impact is recommended for chronic illness (walking, swimming, etc). If you’re not exercising, then just experiment with small amounts and gradually work your way up. This is another area that it is important to consult with a professional on. I do an exercise vlog post every 3 weeks, and I did a full podcast episode on exercise too.

Spend some time outdoors. Interestingly I just did a post on this last week that got very few views despite the fact that there is again science supporting how much this can benefit both our physical and mental health. Step away from the city if you can, even if just a few hours. Take the opportunity to breathe in fresh air. Tie it into exercise by going for a walk. Tie it in to stress reduction and just let yourself be. Though I don’t have an episode specifically about this, there is a podcast on holistic approaches that ties in nicely.

Exercise and spend time outdoors (my solo trip to LA, 2018).

Reduce your stress. Being calm, and having as little stress as possible (which I get it, sometimes just having a chronic illness is stressful!) is so important. Stress is a common cause of flares in many autoimmune diseases and in generally, always manifests into nasty physical ailments of one kind or another. This is a good reason to learn some mindfulness skills (which I do a vlog post on once a month). I did a whole podcast episode on how stress and anxiety manifest in the body as well – find it here.

Get involved in your care. This often means we have to be our own advocates for our health. That can include being a little “pushy” with our doctors (I mean it’s ridiculous that we have to sometimes but medical gaslighting is a huge problem). It also means that you may have to create a healthcare team for yourself. I’ve found this to be extremely beneficial for me. For more on getting involved check out this blog post and this podcast episode.

Reduce your stress and get involved in your care (and no this is not actually how I meditate lol)

Self-care. There are 5-6 dimensions of self-care (depending on who you ask) and physical self-care is one of them. A lot of the things from this list apply to physical self-care, but you can also add a lot more, depending on what you like – I like Epsom salt baths! I also mentioned that challenge with Shape & Foster earlier which this month is putting an emphasis on physical self-care. Hear more about them on the podcast. I do monthly premium blog posts for self-care which you can sign up for here.

Goal setting. No one can be expected to make any changes to any part of their life – including the physical aspects – overnight. That’s why setting goals can be really helpful. If you’re not currently exercising, then committing to 3 1/2 hour walks per week might a good place to start. Or increasing your veggie intake four times a week. Or spending time outdoors once a week. Whatever it is, make a plan and make it one that is challenging and yet you can stick to. I recently did a blog post on goal setting. This is the podcast episode it ties most nicely in with.

Spend time on self-care and set some goals (my goal to be a llama – jk!)

Okay, this was a longer post than normal but I hope you have a few takeaways! Keep making the most of it everyone!