How to Figure Out Your Values When You Have a Chronic Illness

Which would you rather do – something (a behaviour) to give yourself short-term symptom relief or something (a behaviour) that aligns with your core values, even if the goal isn’t to bring you symptom relief? The first option, by the way, isn’t necessarily connected to your values. There was a time for me that I probably would’ve done the later. Hell, I did do the latter! I definitely acted in ways that weren’t indicative to what was important to me at all but did help me out in the moment. Things like lying in bed, avoiding exercise, asking my partner to rub my back or just stay near me for hours, missing work, and on and on and on. And I’m not even saying that any of these are bad things. They were just bandaids that made that moment better, but didn’t help my pain long term and ultimately had a lot of costs (like the end of that relationship, feeling physically weak, and making work more difficult). Over time, reconnecting with my values became a much more viable response – and in some ways, even helped to decrease my pain.

What are values? They are our principles or standards of behaviour that we want to engage in. They represent what is important to us. Some examples are:

  • acceptance
  • adventure
  • assertiveness
  • authenticity
  • caring/self-caring
  • compassion-self-compassion
  • cooperation
  • courage
  • and on and on and on

Different values can also show up in different areas of our life, like work and education, relationships, personal growth and health, and leisure. Values often motivate how we behave in different situations. Sometimes we just live by our values without thinking about them. However, sometimes, when we find ourselves dealing with chronic pain and chronic illness, we can get removed from our values, like I did. There are two things we can do to figure out if we have been removed from our values while dealing with the terribleness of chronic pain and illness.

  1. Figure out what our values are – using a checklist and/or a bull’s eye.
  2. Figure out (nonjudgmentally) what “unworkable action” we are engaging in that is acting as a “bandaid” but isn’t really lining up with our values and how we want to be long-term.
Unworkable action occurs when: (a) the solution is short-term, and (b) the behaviour takes you away from your values.

Okay, but why should we do all that? You might be wondering why not just stick wth the bandaid solution. And you can. But typically we have better overall quality of life if we live by our values. We engage in behaviours that are more fitting to the person we want to be and the life we want to live. And, what research finds (plus just looking at my own life and the lives of my clients), is that pain and other symptoms bother us less. It doesn’t mean they go away, they just don’t really interfere with our lives anymore. The research finds that our self-care for our illnesses and pain improves when we are motivated by our values (everything from self-direction, pleasure, and health to responsibility and socialization). We become more willing to “make room” for our difficult sensations (and thoughts and feelings) when we live by our values.

There are many ways we can live by our values. For example, when I travel I balance the adventure/activity part with rest.

I’ve shared in a number of posts different ways that I live by my values. Here are a few consistent ways I do in my life.

  • Presence (aka mindfulness) – I meditate daily, do yoga several times a week, and just try to fully engage in as many activities during the day that I can.
  • Fitness/health – I eat healthy (gluten-free, dairy-free, meat-free – though I do allow myself some cheat days) and I exercise daily (walking and/or strength training, and/or physio exercises)
  • Creativity – I’m writing a book, I play the piano, I write screenplays with a friend
  • Adventure – I travel (looking forward to getting back to that), hike, kayak, try new restaurants, meet new people
Actively living by my values doesn’t take the pain away, it takes the hold the pain has on me away.

And those are just some ways I live by my values even with an autoimmune disease and chronic pain. It took a lot of work to get here though, so be kind and patient with yourself (hey, that’s the value of self-compassion). I hope this helps you to make the most of it!

Effective Ways to Challenge Chronicity Thoughts

How much time do you spend thinking about your pain or illness? Does it consume most of your day? Just a little bit? I remember the time when I was spending a lot of time thinking about being in pain, and wondering “why me” or what my life would be like going forward etc. These are often referred to as chronicity thoughts. Happily, this was the past for me and is not my experience anymore. I know that many of you may be having this as your current experience though, so I wanted to take sometime to talk about it.

As human beings, we spend a lot of time thinking.

First of all, I want to say that this is a totally normal experience for anyone with chronic pain or a chronic illness. Our minds are literally trying to help us (or they think they are trying to help us, which is what they evolved to do). The problem is, this kind of constant thinking about pain makes our lives worse, not better. There are three types of common chronicity thoughts: (1) ruminating about being in pain/sick – I keep thinking about it, it’s all I can think about because it hurts; (2) magnifying our pain/illness – it will get worse, something terrible is going to happen; and (3) thoughts of helplessness – nothing I do makes it better, nothing I can do will ever make it better.

Are your thoughts making your life better, worse, or the same?

If you went to a doctor (Western or functional) or a therapist, they’d likely assess this with a tool called The Pain Catastrophizing Scale (PCS). My commentary is that I don’t like the name because “catastrophizing” sometimes has the connotation that it’s all in your head, but that’s not what it means in this case – it’s really referring to chronicity thoughts. The questions on the scale include:

  • I worry all the time about whether the pain will end
  • I feel I can’t go on
  • It’s terrible and I never think it’s going to get any better.
  • I wonder whether something serious will happen.
  • and so (there are 13 questions total, and you self-report on a scale of 0-4 for each question, with 0 meaning not at all and 4 meaning all the time.)

So what can we do about all these chronicity thoughts? First, I will always suggest that working with a therapist is the way to go. Remember this blog is educational and not mental health/medical advice. We all have unique situations and unique thoughts, so having someone you can work with one-on-one (or in a small group) is always the way to go. I will let you know about a few different approaches. First, let’s talk about classic Cognitive Behavioural Therapy approach, where we challenge thoughts.

  • Notice and name the thought: I’m having the thought that “It’s terrible and I never think it’s going to get any better.”
  • Review evidence for and against the thought: For might include things like, it occurs frequently, has high intensity, a doctor’s prognosis, etc. Against might be things like, there are times of day when I don’t notice it or it’s less intense or my doctor said with this medication or these lifestyle changes it will improve
  • Replace the thought with a more accurate one: This doesn’t mean being optimistic or denying anything that’s true. Instead it’s incorporating the evidence against the thought (not just for the thought which is what we tend to do). So a different thought might be: “It’s really unpleasant right now, but it might not always be this bad/constant.” (You choose a thought that works for you, this is just what might work for me.)

As a therapist, I am well-trained in CBT but I prefer to use Acceptance and Commitment Therapy (ACT) on myself and with clients, especially those with chronic pain/illness. There is no step-by-step way to challenge thoughts in ACT because we don’t challenge them, but here’s now I might work with them.

  • Contact the present moment: ground myself my noticing and acknowledging my thoughts and feelings, while noticing what I can touch, taste, smell, hear, and see. (Here’s a guided version of this).
  • Use my noticing self: the part of me that notices everything and even notices my noticing. And the similar part of me that can put myself in my shoes on the days when my pain is less. (Here’s a guided version of how to learn to do this).
  • Creating distance between myself and my thoughts: This might be noticing and naming the thought. It might be reminding myself that my brain is just trying to help me and saying “thank you mind.” This might be just watching my thoughts come and stay and go in their own time (guided version of this one is here).
  • Accepting my experiences: particularly physical and emotional pain that I might be going through. This could be actual sensations or emotions such as sadness or anxiety. For this I often just observe what the sensation/emotion looks like, where it is in my body, and so on. Then I send my breathe into the part of my body I feel it most intensely. Then I make some room for it, noticing that my body is bigger than it. Finally, I just allow it to be there without consuming me. (Guided version here).
  • I connect with my values: what qualities of being are important to me? I know that compassion (for myself and others) is a big one that is often helpful in moments of pain, sadness, anxiety, etc. (Here’s an exercise on connecting with your values.)
  • Taking an action to live by my values: So if we’re going with my above example/value than it might be doing some self-compassion work. (Here’s a guided practice). It could also be setting goals to make some of those lifestyle changes that might help. It doesn’t matter what the action is as long as it is rooted in your values. (podcast episode on how to do this available here).

So that’s it. A bunch of different ways to work with your chronicity thoughts so that hopefully you can improve your life and keep making the most of it!

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How I Use Pacing to Make the Most of My Day

When I moved across the province at the end of October, I did NOT do a good job pacing myself. Granted I had help for the physical moving but not the packing or unpacking or the putting together of furniture – that was all on me. I started out with the best intentions. I actually started packing by pacing. It was more the last minute stuff, the physically carrying items in the truck, and then everything after that was a disaster. And of course, that caused a flare (luckily it only lasted a week or so). However, that’s not what I normally do. Normally I pace myself, which is part of the reason why I can consistently be as active as I am.

Definitely explored my new neighbourhood as soon as I could.

What is pacing? Pacing is doing the same amount of activity everyday – whether it’s a “good” day or “bad” day. Now, this doesn’t mean you’re not listening to your body. There are of course days that Chronic Illness Warriors are going to need more rest. What it does mean is not over-exerting yourself on the good days and therefore creating more bad days. For example, I go for a walk everyday. It’s about an hour long. Even on days where I feel a bit more tired, I get my walk in. I also try to do some yin yoga everyday. It’s definitely movement that is easy to get in on days I don’t feel as good, because it is slower movements and stretching. But let’s say that I didn’t go for a walk today. Maybe I cleaned the house and did laundry instead. It’s about the same amount of activity – and maybe it’s more necessary or I have the thought that it’s more reasonable, depending on how I feel. Get what I mean?

Back in the summer, my pacing allowed me to be able to have a great visit with my friend.

There is A LOT of evidence that pacing works. Not just for me, but from other chronic pain and illness warriors. I’ve interviewed a ton of people on my podcast and have noticed that many of them use pacing. I attended the World Pain Summit earlier in the fall and 2 of the presenters, who were both people with lived experience (not healthcare professionals) talked about pacing and how it’s helped them. Heck even look at these search results on Google Scholar and you can see all the academic journal articles written on the subject. Pacing works – even with fatigue.

We did this by alternating activity with rest.

But how do you figure out what your pace is? Here are some key suggestions when it comes to pacing:

  • Plan your day. We all have an idea of how we’re feeling when we get up in the morning, so having a plan of what sounds manageable for the day is a good place to start.
  • Break up your activities and alternate at rest. For example, if you decide to clean the house, just do 1 room at a time and take a short break (30 minutes) in between.
  • Prioritizing your activities. I align this with Values-Based Living. What is most important for me to do today? Why is it important? For me, my health is important (yes, even having a chronic illness) so doing some kind of movement that will keep me active and ultimately decrease pain (I’ve done many posts on movement for pain management) is essential.
Values-based living is engaging in activities that align with your values.

Even if you’re having thoughts that pacing seems impossible, just note that those are just thoughts. There are many people who can help you get started with pacing (occupational therapists, psychotherapists/counsellors, physical therapists, etc.) and the whole point is to improve your well-being so you can keep making the most of it!

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Daily Exercise: Walking

Walking is a great way to get some exercise in, and it can be adjusted to different fitness and ability levels. If you really want to take it up a notch, trying doing some mindful walking. It will give you the benefits of exercise and mindfulness all rolled into one. Here’s a podcast episode on exercise for you to check out, and here’s one on mindfulness. Keep making the most of it everyone!

Daily Exercises: Chair Boxing

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!

Chair Boxing Workout

Have a great week and keep making the most of it!

Fighting off Depression for Chronic Illness and Non-Chronic Illness Warriors

I want to talk a bit about mental health today. A lot of people with chronic illness deal with depression and anxiety. During this Covid-19 post-lockdown period, a number of previously mentally healthy people have been also dealing with feelings of anxiety and depression because of their time in isolation and the different experiences this may have brought for them. While there are many different reasons for people to become depressed, there are some proven ways to combat it. The way I’d like to talk about today is behavioral activation.

behavioral_activation_fig2_what_is_behavioral_activation_en-us
Image from: https://www.psychologytools.com/self-help/behavioral-activation/

As I’ve mentioned before, I am currently doing my a Master’s degree in Counselling Psychology. Last month I took a course on Cognitive Behavioral interventions. Though I am not planning on specializing in CBT, I do find that a lot of the empirically supported interventions are worth integrating into my future practice. Anyway, I’ll digress. What is behavioral activation? BA is an intervention that suggests that doing something you enjoy and/or are masterful at and/or provides social interaction, will decrease your depressive symptoms and ultimately make you feel happy. Before you start to laugh, as I have mentioned, there is a lot of evidence (which I’ll link below) that supports this treatment for depression, including severe depression. If you find you’re feeling more depressed at a certain time of day, that is when you should schedule activities for. Remember, they need to be something you enjoy (or previously enjoyed before depression) or something you’re good at. So, for example, if from 3-5pm every day you feel really depressed, but you like to be outside and walk, then that’s the time you should do it.

behavioral_activation_fig3_activity_monitoring_1_en-usImage from: https://www.psychologytools.com/self-help/behavioral-activation/

Here’s something I noticed during lockdown. Most of the people I know who sat at home and did nothing – just watched Netflix all day or played video games – felt depressed. I volunteer at a crisis text line and a lot of the texters felt the same way by just doing those things – movies and video games. Now, I have nothing against movies and video games and they can be things you enjoy, but not necessarily when it’s all you do all day every day. Those of us who kept busy (I studied, exercised, meditated, did my 30-day self-care challenge, walked, learned a new language, etc, etc.) did not feel depressed. Kind of interesting isn’t it?

P0Y5qqmIQzKLJzosqFb3qwLockdown era city hike.

My suggestion is that if you’re feeling depressed, try to start scheduling some activities for yourself, or now that lockdown is winding down, start to see some of your friends again. If you’re severely depressed, I do suggest finding a therapist to help you as well, but don’t be surprised if one of the things they suggest is behavioral activation! Of course, for anyone with a chronic illness, we may not be able to do ALL of the things we could before, but that doesn’t mean there aren’t things you enjoy or are good at. Take a look at what you can do and go from there.

canadadayHappy Canada Day to my fellow Canadians!
Image from: https://www.albertaprimetimes.com/the-bright-side/canada-day-2020-20-facts-and-figures-to-celebrate-the-big-day-2527866

Here are some articles surrounding the efficacy of it.

https://www.verywellmind.com/increasing-the-effectiveness-of-behavioral-activation-2797597

https://positivepsychology.com/behavioural-activation-therapy-treating-depression/

https://www.redalyc.org/pdf/172/17220620045.pdf

https://pdfs.semanticscholar.org/ba12/5cb76b3baa12cc272d9c9bb95e3297eeee83.pdf