This mindfulness practice is a good introduction to meditations and mindfulness in general, especially if you have a hard time with some of the more formal practices. It can help you get present just by focusing on one part of your body – your hand (alternatively you could use any part of your body that you can see fully, including using a mirror to do so). Mindfulness is mentioned by Dr. Richard Harris in this podcast episode as being beneficial for chronic pain and illness. For all of my meditations, subscribe to my YouTube channel. Be mindful, and keep making the most of it!
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I love body scans. I find them a great way to get into my body, sometimes helping me relax, but more often helping me with pain management. I do remember the first time I did one though. The thought I had, “this sounds terrifying! Why would I want to move towards the pain that I’m already experiencing?!” And yet, there is a ton of research showing that many, many, many other people with pain conditions have had the same experience as I have. As with any mindfulness practice, the goal isn’t actually pain relief. It’s 5, 10, 15, 20 or more minutes of doing nothing but noticing what’s happening within, as you move through different parts of your body.
If you’re not familiar with mindfulness and have no idea what a body scan is, don’t run away yet (actually no one should be running away at all – that’s the opposite of what we want to do here!). A body scan is a mindfulness practice in which you are lying down (or sitting, depending on what type of mindfulness you’re doing). You begin by focusing on your breath, and then slowly move through each part of your body beginning with either the top of your head or your toes, just noticing what is happening in your experience. Once we’ve moved through every part of our bodies, we notice the entire body as a whole, and then usually return to our breath before finishing. You can also breathe into parts of your body that feel tense or have more pain, using your breath as a way to help them release (though that’s not always possible, and I personally don’t normally use my breath this way). Here’s a quote from Jon Kabat-Zinn (Full Catastrophe Living), “another way to work with pain when it comes up during the body scan is to let your attention go to the region of greatest intensity. This strategy is best when you find it difficult to concentrate on different parts of your body because the pain in one region is so great. Instead of scanning, you just breathe in to and out from the pain itself.”
What I think the body scan really teaches us, and why it can be so powerful (with regular practice) for chronic pain is that it is really about acceptance. We learn to accept sensations more easily when we can just notice them, without being over taken by them. When we learn that we can move our attention to other areas of our bodies, and see that the pain isn’t always as great as we think it is. Yes, I said think it is, because we all have thoughts about our pain. Acceptance, and turning towards pain can help us improve a number of things, according to the research: reducing pain-related distress, our perceived ability to participate in daily activities, our perceived likelihood of pain interfering with our social relationships, and even desire for opioid (and other pain medication) use (not to say we will use less though). Most of the research comes from people practicing for 10-20 minutes/day for anywhere from 2-8 weeks. Now, imagine long-term regular practice. One of the explanations for why this works is that it increases our interoceptive (inner) awareness and stimulates the parts of the brain involved in that process.
Sometimes when I practice a body scan, I do notice pain that I didn’t before. Very subtle pain in my hands, or a bit of a headache I didn’t even realize I had. And I get that can be distressing for some people. This is why I approach it with curiosity. How did I not notice that before? What am I noticing instead? Is any of my pain really as bad as I sometimes think it is? And sometimes I fall asleep during the body scan (especially if I’m laying down, so I recommend sitting) because the process can be relaxing, even though that’s not the point. Again, I must emphasize the goal of any mindfulness is to do nothing! Not to achieve a certain result (like less pain). Just do nothing (or in this case scan your body) and see what happens! Try it out and let me know your thoughts. Keep making the most of it everyone!
“While it may not be possible for us to cure ourselves or to find someone who can, it is possible for us to heal ourselves – to learn to live with and work with the conditions that present themselves in the present moment. Healing implies the possibility that we can relate differently to illness, disability, even death, as we learn to see with the eyes of wholeness.” – Jon Kabat-Zinn
If you’ve been following my blog (or podcast) for awhile, you might have read (or heard) the term well-being come up quite a bit. Because, like the above quote says, we can’t cure ourselves, but that doesn’t mean everything in our lives is out of our control. The illness(es) we have aren’t directly in our control, but our experience of having them is. This is a lot to break down, certainly more than just one blog post (and to be honest I get into this way more in the new season of the podcast – check out the first episode of season 2 here for Apple and here for Spotify). What I would like to do is just be a little more specific about what well-being is and why’s it is important for Chronic Illness Warriors.
I would say the first year to year and a half after I was diagnosed initially (so back in from Feburary 2016-sometime midway through 2017) my well-being was low. I felt like my illness took so much out of me. Initially I had a lot of anxiety, maybe some depression, and then a bad breakup, and then even when I went out with friends as I moved on I found I would have to leave early or cancel plans. I called in sick often to work. I thought a lot about the pain I was in. But things slowly started to shift as I realized my well-being (or all of this stuff) was more in my control than I thought it was.
Wellbeing (or well-being, which way is right? Depends on who you ask!) can be defined as the state of being comfortable, healthy, or happy. Note that it doesn’t necessarily say all three at once. There is a ton of research on wellbeing and chronic illness, which is not surprising since the incidence of chronic illness is constantly growing. Wellbeing often includes physical, psychological and social aspects, and often it is a little bit of each together that gives us this. It is also related to coping. How well we can cope, how we cope, our self-efficacy (last week’s blog post). Truthfully, wellbeing is an important part of being able to exist and wanting to exist on this planet. Too often I read chronic illness warriors post how they have no wellbeing and that they feel like giving up. It’s heart breaking, because it doesn’t necessarily have to be that way.
Why is well-being important for people with chronic illness. Well, for one, the research has shown that chronic illness warriors who have better wellbeing show lower disability, lower pain, less mental health problems, and overall a better quality of life. Sounds pretty good, right? And please remember that doesn’t mean they don’t have any disability, pain or mental health problems, it means that it is lower than for people who’s well-being is poor. I do want to point out that achieving greater wellbeing takes a lot of work. I’m not exaggerating here either, and I think this is often where people get stuck. Because it’s easier if someone or something else (like a doctor or medication) can just make us feel better, rather than having to make changes to our lifestyle or go on a personal growth journey. This is ultimately why I have the blog and the podcast – to help provide some options here (and again the podcast this season is really diving deep into finding ways to improve wellbeing so check it out). We are looking for ways (myself included because I certainly don’t have all the answers) to improve our wellbeing, to make our lives better.
My journey has been several years in the making and is really never-ending. Change is slow. But I’ve taken many steps to improve my wellbeing and continue to do so. I’m at the point where I can say I have pretty good wellbeing, and I can personally corroborate the research and say that in general my pain is lower (still can depend on the day) and in general I have less disability (have not called in to sick at my practicum in 6 months) and in general I don’t have mental health problems (though I am willing to acknowledge them when they come up because emotions are normal!). It is a journey that I hope you are all ready for.
If you feel moved by my posts, podcast and/or meditation channel, please check out my Patreon page. I love bringing content and by supporting it you are making sure that I can cover the costs of running it all so that I can keep bringing it to you. Until next week, keep making the most of it!
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Back when I was first diagnosed with an autoimmune disease, I noticed that my own self-esteem dropped. The person I was in a relationship with at the time didn’t help that, but then again, it wasn’t really up to her to help it. The disability I had from my illness was also very intense at the time. I missed a lot of work, I couldn’t go on long walks, I felt a lot of pain, and that all definitely hurt my self-esteem and self-worth. And that’s where my story ends…
Just kidding, if you’re reading this then you know that is not where my story ends! Actually, it’s where it begins. I was reading something a few weeks ago about self-esteem and chronic illness, just a brief paragraph, and it got me interested in doing a little more research on the topic, because, well, I noticed a correlation between my own self-esteem and self-worth and disability in my illness. I can’t be the only one, right? First of all, let’s define self-esteem and self-worth so we are all on the same page. Self-esteem: our individual universal positive and/or negative feelings about ourselves. Self-worth: basically another word for self-esteem. In general, self-esteem effects our quality of life, which includes our overall life satisfaction as well as how much positive and negative affect (emotion) we experience.
When we are looking at chronic illness, there are some important considerations. First, how we evaluate and view our own bodies is important, often because of the changes our bodies go through because of illness (and/or medications we have to take). Having a perception of body-self unityandpositive thoughts about our illness can improve self-esteem (we’ll get to how to do this in a minute). Second, acceptance of disability is related to self-esteem in people who have disabilities (chronic illness is a disability). Acceptance doesn’t just include accepting the diagnosis, but acceptance all that comes with it (pain, lifestyle changes, loss, etc.). The better we are at accepting… the more we are able to do? (Well, yes, but that would actually be another post, so back to the main topic)…
People tend to use different coping strategies when dealing with illness. Though none of these strategies should be categorized as “positive” or “negative” I prefer to think of them as “toward moves” (helping me live a good life) or “away moves” (taking me away from the good life). Away moves would include things like catastrophizing, which has been linked to pain-related disability (yes, it makes your pain worse), higher levels of depression, and overall lower health and well-being. Other away moves include avoidance strategies, like using drugs or alcohol to cope, denial of illness, or staying in bed all day everyday. If you do these things, understand that no one is judging. These are probably natural coping strategies for you as they are for many, many people. However, if we want to improve self-esteem (and thereby improve quality of life with our illness) we want to look at toward moves.
These toward moves coping strategies include hope (goal-directed energy plus planning to meet goals), humour (reframing distress), psychological appraisals (meaning of the stressor, ability to cope, and emotion-focused coping, such as seeking support), and approach behaviours such as seeking social support and positively reframing the situation (yes, the research supports mindset). These are all associated with better well-being, better mental health, and better illness outcomes. This all comes from the cognitive adaptation to chronic illness theory, which in addition to self-esteem, looks at making meaning of illness, and regaining mastery.
I think it’s important to assess which coping strategies you are using, and make changes if needed. If our self-esteem improves, and therefore our disability decreases, then our quality of life is also better. Sounds good to me! To finish my beginning story, I did a lot of personal development work, that led me to starting this blog, and along the way my self-esteem and self-worth drastically improved again, and my levels of disability have shrunk and shrunk and shrunk. My illness may not be cured, but my quality of life is so much better. This experience is also known as posttraumatic growth, which happens when positive change results from adversity, giving the individual better mental health.
New season of the podcast (totally revamped show!) coming June 28. Check out the trailer here.
Keep making the most of it!
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I’m going to be the first to admit that when I was younger I often struggled with my emotion regulation. This often came to the forefront in the context of relationships, because I had a “short temper.” I would get angry and yell, pretty quickly. I could always calm down, but I came to realize the older I got that I had to remove myself from the situation in order to get myself to be more calm. I had a really bad breakup geez, almost 5 years ago now, that I also had a difficult time controlling my emotions, especially sadness and rumination. That last time, that was the lesson for me. But we’ll get to that in moment…
First, let’s talk about what emotion regulation is, because I know that some of you may never have really heard the term before. Emotion regulation is our attempts to control the experience, expression, time and scale of our emotions. It has been long known to be important for our mental health, and only more recently explored for physical health. These are also skills that many of us learn as children, but often do require practice throughout our lifetimes. I worked in retail for a long time and as I reflect back I can see how customers yelling at me, for let’s be honest, very small things (I had a lady yell at me once because a competitor had an item for a dollar less but she didn’t tell me before she paid – I happily would have matched it… and by yelled I mean screamed bloody murder) and I realize they were exhibiting very poor emotion regulation, which is more harmful for themselves than the stress it caused me.
Here’s what we know about emotion regulation and physical health:
better emotion regulation impacts our overall physical health positively
difficulties with emotion regulation, especially with prolonged negative emotion, can make you more at risk at developing heart disease
emotional suppression and rumination (part of poor emotion regulation) cause lower energy, greater physical pain, greater disability, and overall lower quality of health
difficulties with emotion regulation make it difficult to engage in self-care and health-related behaviours necessary for managing chronic illness
better emotion regulation makes it easier to manage stressors in our lives, meaning less flares and relapses of illness
better emotion regulation increases medication adherence and sticking with diet and exercise regimes
Back to my story. So, I had this breakup and this very poor emotion regulation following it, and then I had a flare so terrible I ended up in the hospital for pain. I was released the same day, and the pain came down a bit, but it really went back to normal levels when I was able to come out of the depressive funk I was in. I can safely say I have not had a problem regulating my emotions since… and I mean really who wants a flare like that again? So, we’ve answered the question why, and there are lots of “how tos” in regulating emotions, but I’m going to leave you with one to try out.
Learning to self-soothe. Again, many of us learn this skill as children, but not everyone does, and often we do less of it as we get older. Some ideas for practicing self-soothing are to do meditations such as loving kindness (click here) or a relaxation practice like progressive muscle relaxation (click here). Expressive writing about the experience (click here), breathing exercises (click here), and self-care strategies like taking a bubble bath, are more ways to lear to self-soothe. There are many other strategies online so I suggest a Google search if you’re looking for more!
Take care, and keep making the most of it! –Kelsey
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.
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
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.
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!
Due to the popularity of the first video (and to be honest my love of working my abs this way) I decided to do a part 2. Make sure you consult your healthcare professionals when making changes to your exercise routine. These chair exercises are great for people with disability, with chronic pain, chronic illness, anyone recovery from surgery, and seniors. Make sure you adapt them to your own abilities (which is what I always do too!). Listen to lupus warrior, Trachele, talk about her experiences with exercising on the podcast.
Here is the link to the full workout I reference in the video.
Enjoy your exercises and keep making the most of it!
This mindful stretching exercise is from Marsha Linehan’s Dialectical Behaviour Therapy Skills Training Manual. The point is to focus on your breath and movement while doing a stretch that allows you to “reach for the stars.” Mindfulness can be done in many ways, and stretching (and yoga) is one of them! If you’re having trouble with mindfulness meditation, I suggest starting with these types of practices first. There are two versions in the video, one standing and the other sitting so this is accessible to everyone!
For more on the benefits of stretching, check out my podcast episode with Danielle Potvin here. And for more on the benefits of mindfulness for health, check out that episode here. Until next week, keep making the most of it!
Hi Everyone! I’ve got a new limited mobility workout option for you that combines cardio and strength training. This was something I did (modified of course) during my initial hip recovery. As I’m still recovering it’s a great workout to have in my repertoire for days I don’t feel like I can do a lot on my feet. Make sure you consult with your healthcare team before starting a new workout routine! I’ll link the workout I did below. Enjoy!
That darn hip surgery may have prevented me from my normal routines but I adapted (safely). Make sure you consult with your healthcare team before trying any new exercise routine and please make sure to modify as needed (that’s what I did!). By the way, I managed to maintain my abs throughout the 6 week recovery through doing this and other similar routines found on YouTube. This one by Kym NonStop is my favourite but there are tons out there!
For the breathing abs exercise I mention, listen to my podcast episode with Tanya Walker.