Bicycling is often recommended as a good way to get some exercise, especially for people with certain chronic health conditions. It is generally low impact, and helps with cardio. I know when I use a stationary bike it’s sometimes hard on my knees, but that didn’t happen with the road bike I went out on. In general, I found it to be good exercise, something I could control in terms of how much effort I put in (in other words, you can choose not to overdo it), and was fun! Please consult with your healthcare team before starting any new exercise. Check out this podcast episode about the evidence-based treatments for chronic pain that helps explain why this type of exercise is important. Keep making the most of it everyone!
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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.”
I highly recommend reading this book.
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.
You can practice the body scan sitting or standing, and anywhere you are.
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!
Urges come in all shapes and forms. From substances to food to shopping online to letting our emotions overtake us. In this acceptance practice, we ride the waves of our urges without giving into them. Please read the disclaimer at the beginning of the video, and only partake in this practice if it is safe for you to do so. You are practicing at your own risk.
Plus who is this blogger and why should you care what I have to say?
I think that I sometimes give off the impression that I’m 100% fine 100% of the time, which as anyone with a chronic illness or dealing with chronic pain knows, is simply not true. What is true, is that I’ve learned several strategies over the past 5 years to improve my well-being, even on my days of struggle. Let’s take this morning (Saturday) as a write this. I had some pain in my hips (both of them). I live alone and needed groceries and don’t have a car, so I walked to the grocery store. My arms killed on the way home because I accidentally bought more than I could carry. Then the apartment building door whacked my right hip (the less sore of the two) which obviously caused more pain. And then I became angry. Like swearing, yelling, grumbling, angry. I got text messages and was annoyed at the people texting me even though they weren’t saying anything bad. Then I noticed what was happening. Was this anger helpful? No, if anything it was making my pain worse. So I took a moment, watched my breath flow in and out of my body, and calmed down mentally… and then it helped my body to calm down physically.
These are my favourite days.
So… who am I? I’m Kelsey. I’m a person with lived experience. I have diagnoses of undifferentiated connective tissue disease, fibromyalgia, and glaucoma. I’m also someone who meditates daily (over 100 days in a row – my longest streak). I’m someone who has bad days, and good days. I make it my priority to have way more good days than bad ones. I’m a person who went to psychotherapy among other treatments (physio, chiropractor, naturopath, massage, etc.) and found it helpful for my anxiety and ultimately my pain. And then I became someone who went back to school to get my Masters in Counselling psychology, which I have now completed, despite the fact that I was working full time and in pain. I am someone who is committed to helping others who are struggling. And I am someone who wants to share what I’ve learned – and what I’m still learning – with all of you. I am me.
Just waiting for my final mark, but it looks like a therapist now!
Why should you listen to what I have to say? Well, there is no particular reason and it’s completely up to you! What I can say, is that I try to bring my personal, lived experience, with research (yes I actually do a ton of reading of scholarly journal articles for my posts) and clinical experience so provide you all with different ways to improve your well-being. Take me this morning for example. Would it have been helpful to stay angry all day? Likely I would’ve had to spend it in bed and probably wouldn’t have written this post. I’ve found this to be helpful for me, so it just might be helpful for you. Along with this blog, I have other resources too. Like my podcast and YouTube channel, which you should definitely check out if you haven’t yet.
On Halloween I was a badass like Buffy.
Okay, so I thought we’d end on a fun note. Two truths and a lie. I’d love to hear in the comments which one you think is a lie. 1. I have spent the evening hanging out with a celebrity. 2. I recently got a new puppy. 3. Pineapple is my favourite fruit.
My podcast topic this week was utilizing your authentic self, and next week is about evidence based treatments for chronic pain. My YouTube channel has a new video for building self-awareness (which is how I knew to calm myself this morning!). Until next week, keep making the most of it!
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Yoga has been one of the ways that has helped me a lot with my well-being in the past year or so. These are two versions of one of my favourite poses for the back – seated and laying twists. Yoga not only has a lot of physical health benefits (such as improving flexibility) and mindfulness benefits (such as mindful movement) but also mental health benefits as therapeutic yoga is used as an embodiment approach to mental health. As always, talk to your doctor or other healthcare professionals before changing your exercise routine.
For more ways to improve your well-being, check out the podcast. And for more mindfulness practices check out the meditation channel. Keep making the most of it everyone!
If you’re anything like me, you may have wondered why pain medications aren’t working well. Aren’t giving the relief we’re told they should. I’ve been taken off NSAIDs because they hurt my stomach – has this happened to you to? I’ve been offered opioids after surgery but decided against it for fear of addiction even though I’ve been in a lot of pain – do you relate? I’ve also tried lowering doses of medications and found they’ve been as effective on a lower dose as they were on a higher one, because I’ve added holistic approaches to pain control – what about you?
Some medications and supplements I’ve been on (and this isn’t even all of them).
There were some interesting recommendations out of the National Institute of Health and Care Excellence (NICE) in the UK that came out of a meta-analysis (review of scientific studies) on treatments for pain/pain management. The part of the study and recommendations that really blew my mind what was that not a single pain medication was said to have enough evidence to support its effectiveness for treating chronic primary pain. Now, I will say that they reviewed about 22 studies per type of pain management – each medication and each holistic approach – that they looked at, so not super extensive but definitely enough to be a good indicator. I’m going to do a podcast episode on the 5 suggested treatments (exercise, acupuncture, 2 types of psychotherapy, and anti-depressants) for pain so stay tuned to the podcast for that episode in a few weeks. On the blog this week, I thought we’d talk about what they said about all these pain meds that we take!
NICE didn’t comment on CBD/Medical Marijuana, other than to say they didn’t really review the research in this area.
Opioids – I know that these are commonly prescribed, and as a mental health professional, I also know that there is an opioid crisis in North America (that being said, just because you take opioids does not mean you’ll become addicted as we need to look at other biopsychosocial factors). NICE states that there is not enough evidence that shows long-term opioid use actually helps with chronic pain, plus they note the risk of addiction (for some people) in the short- and long-term. Conclusion: Maybe not a good idea.
Benzodiazapines and NSAIDs – also commonly prescribed, and as I said, I used to be on strong NSAIDs that hurt my stomach, now I have a less strong one that I’m to take “as needed.” Benzos were cautioned as not being effective for chronic pain, AND leading to poorer functioning. And NSAIDs, these were said to also not improve pain, distress, or quality of life and increase the risk of gastrointestinal bleeding. Conclusion: Maybe not a good idea either.
Antiepileptics (Gabapentinoids) and Pregablin – these are only shown to be effective for neuropathic pain and CRPS. However, NICE cautions that they can be highly dependent and are known to be addictive. Again, one needs to consider biopsychosocial factors, but if you have other risk factors for addiction, possibly not a good choice. Conclusion: Depends on your condition and your risk factors for substance misuse.
Local anaethetics – Short-term use indicates they may actually make things worse, except for CRPS. So again, this might come down to your specific diagnosis. Luckily there was nothing mentioned about them becoming addiction. Conclusion: A go for CRPS but not anything else.
Paracetamol, ketamine, corticosteroids, anaesthetic/corticosteroid combinations and antipsychotics – again there is insufficient evidence for all of these, and NICE cautions that harm could actually come from taking these, though they don’t specify what the harm is. Conclusion: Maybe not a good idea.
I find it best when I combine holistic approaches, like exercise, with Western medicine, like pain meds.
So, what have I done to supplement lowering my pain medications (which may not be that effective anyway) so that I can continue to have better quality of life and well-being? A lot of the recommendations made by NICE and some others. I exercise daily (any movement is good movement if you’re starting out), I eat healthy, I use approaches such as acupuncture, chiropractor, physiotherapy, mindfulness, etc., and I have been to psychotherapy (and I currently use psychotherapy to help others). You can check out NICE’s study here. ALWAYS, check with your physician and healthcare team before changing medications or doses or adding holistic care to your plan. I started by adding holistic approaches first, and then cut back on meds. We are each unique individuals and this information is for psychoeducation/health education purposes only.
This week’s podcast episode is on nutrition for chronic illness – check it out: Apple, Spotify, Web. Everyone, keep making the most of it!
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This week we’re exploring golf as an option to incorporate some movement as chronic pain/illness warriors. Like all of the exercise options we explore, this won’t be for everyone, however I found that there were some nice advantages because it’s a non-intensive way to incorporate movement. And movement, as we know, is so important for chronic pain. Please consult with your healthcare team before starting any new exercise. It also ties in nicely to this week’s podcast episode on self-care, which you can check out here.
Let me know if you hit some balls, and keep making the most of it!
Chronic illness representation in the media has grown dramatically in the past 35 years, which is probably a good thing, because the more we talk about illnesses, the less stigma there is, and hopefully, the more research gets funded so that one day they may not have to be chronic (I know that’s probably way too big of a dream, but hey, gotta be at least somewhat optimistic). I think most of us can probably agree though, that many of these portrayals aren’t very good… or realistic. The main problem that I see, at least in the world of fiction, is that the stakes are always super high – it’s life or death – which isn’t the case for most of us living with chronic illness, at least not on a regular basis (and of course, it does depend what illness we are looking at). There’s also always some kind of unrealistic love story surrounding the illness, which from those I’ve talked to in real life, doesn’t seem to be the case for most people. But, we can probably forgive Hollywood because at the end of the day they’re a business trying to make money. So let’s dive into some, perhaps more accurate or partially accurate portrayals in the following categories: fictional film & tv, documentary film & tv, celebrities, and music.
Me in “Hell-A” (2018) – hopefully you get the reference to the Bran Van 3000 song.
Fictional Film & TV This is where most of the problematic portrayals are, but there are some portrayals that are better. I’m not going to get into an extensive list, but just highlight a few. For TV, I would say Degrassi – and I don’t mean just the most recent iteration of this 30+ running show, but going back to the beginning. In Degrassi Junior High/Degrassi High (1987-1991), Caitlin was diagnosed with epilepsy, and LD had leukemia. The original series was extremely realistic in a lot of ways, which probably lent itself to doing these story lines well. A more recent version of the show apparently did a good job with a cystic fibrosis storyline. Movies wise, I though Love and Other Drugs did a good job with a young person who had Parkinson’s, and Brain on Fire, took us through the journey of a young woman being diagnosed with a rare autoimmune disease. This movie was based on a true story. Of course, there are a number of other good portrayals out there, sometimes we just have to sift through the not-so-good ones first.
Caitlin (portrayed by Stacie Mystysin) on Degrassi Junior High.
Documentary Film & TV This is a way better place to find accurate portrayals of chronic illness, because we’re actually following real people in their real lives (I do want to say that even in docs some things are contrived. I’ve worked on a few in my previous careers and we’ve had people change their clothes, or pick locations we should do things to help move the “story” along, but overall they are still more accurate than fiction). TV wise, I found a show (on Netflix I think) called Diagnosis, about a team of doctors diagnosing people with rare illnesses, that had been unable to be diagnosed by any other doctors. It was pretty cool (there was one girl who was ultimately diagnosed with somatic symptom disorder, which may be controversial for some of you, just a warning). Other docs that I liked include Gaga: Five Foot Two, which highlight Lady Gaga’s fibromyalgia; and Gleason, about former NFL-er Steve Gleason who was diagnosed with ALS in his early 30s.
Celebrities I know a lot of people find it annoying when celebs talk about their illnesses, because at the end of the day, they have a ton of money and can usually afford amazing care and things that the rest of us can’t. Here’s why I like when celebs do talk about it: (1) it gets the convo going, (2) they often use their fame to help generate fundraising, and (3) it normalizes illness for people with and without illness. Some celebs who have done a good job in this arena are Michael J. Fox (Parkinson’s), Selma Blair (MS), Selena Gomez (Lupus), and Sarah Hyland (Kidney Dysplasia).
Music This is the other category I would say is “highly accurate” because often the singer-songwriters are singing about their own personal experiences with their illness. Music is typically quite raw and real (some genres more so than other), and many of the songs about chronic illness feel honest. A couple we could highlight (and really there are a ton I could put here but I’m just going to pick a couple) are Believer by Imagine Dragons (about ankylosing spondylitis), Caves by Jack’s Mannequin (about leukemia), and Head Above Water by Avril Lavigne (about Lyme Disease).
What are some of your favourite portrayals of chronic illness in the media? Feel free to comment on the blog or tag me on Instagram @chronically.living_ Keep making the most of it!
Sometimes we use mindfulness as a way to help us cultivate acceptance. This can be acceptance of difficult emotions or physical sensations. We can do this by observing and acknowledging the painful emotion or sensation is there as if we were a curious child; breathing into the feeling; making room for it by expanding around it; and allowing it to exist. This practice, if done regularly, can help lessen the intensity and hold these have on you. I often use this meditation with clients who have depression, anxiety, and chronic pain or illness. It is based on Acceptance and Commitment therapy. Give it a try and let me know what you think. My full range of meditations is available on my YouTube channel.Keep making the most of it everyone!
Chronically Living 