Video: Values-Based Activities – Colouring

What are values-based activities? They are actions, activities, hobbies, practices, etc. that align with our values (how we want to treat ourselves, others, and the world/what is important to us). Colouring may seem like a silly one, but here me out! You can also check out this podcast episode I did on values-based living.

Try out a values-based activity for yourself so that you can keep making the most of it!

Video: Values-Based Activities – Music

Even when we are limited in what we can do (because of our illness or pain) we should still live by our values and take actions that we can. If you play an instrument, that might mean playing your instrument! Or if you’re unable to play at the moment, maybe it means listening to some music that you love. What can you do to live by your values?

This is just one way to keep making the most of it!

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!

Video: Daily Exercise – Hip Abductors

Disclaimer: Please consult your appropriate healthcare professionals before making changes to your exercise routine.

This is a new exercise given to me by my physiotherapist that I have found helpful for hip strengthening and pain reduction. What are your favourite hip exercises? As always, keep making the most of it with your exercise routines!

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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What’s the Matter? —> What Matters to You?

When you have a chronic illness, there is always something that is the matter with yourself. I have chronic pain every day, throughout the day, that ranges in intensity from a 1 to an 8 (though it rarely gets to an 8 nowadays). I can get tired easily, have the occasional brain fog. All that kind of stuff that comes with having UCTD and fibro. I also have to wear glasses or contacts, and not use cold medications when I have a cold because of my glaucoma. But I feel like I have choices. Give in to all of this stuff that is “the matter with me” or do what matters to me. I’m not saying that this is always an easy choice to make, and sometimes we do have to “give in” in the sense that we have to have balance where we take care of our needs, though I posit that doesn’t necessarily mean fully giving up on what matters to you.

Spending time with family is definitely important to me.
(Vienna, Austria, 2017)

What this is called is values-based living. You’ve probably read this on this blog before, and heard about it on the podcast if you listen to that too. It really has two parts. First, values. Second, committed action, which yes, even as Spoonies we can do (it’s about allocating the spoons wisely if you like that metaphor). I read a post in a Facebook group recently about someone asking how others with autoimmune diseases manage to go on vacations. They had recently gone on a weekend trip with family and really struggled. I replied that I have gone on trips with my family (Europe), friends (NYC, Europe, Costa Rica), and 2 solo trips (LA, Vancouver), since being diagnosed. Travelling, and adventure/exploration are part of my values, so I’m not letting my illness dictate this part of my life. However, I do plan appropriately, alternate high activity days with low activity days (think going ATV-ing one day, and then lying on the beach the next), and I only go with people who are considerate about my illnesses. But let’s back up for a minute.

ATV-ing in Costa Rica (2019) aligns with my value of adventure!

We need to start by clarifying our values. “Values are words that describe how we want to behave in this moment and on an ongoing basis. In other words, values are your heart’s deepest desires for how you want to behave – how you want to treat yourself, others, and the world around you.” (Russ Harris, ACT Made Simple). I have many values including compassion/self-compassion, trust, loyalty, health (I know that may sound weird to say considering my health conditions, but taking control of them as much as I can falls into this for me), and so on. There are lots of ways to figure out your values. I often give my clients values checklists with a list of ideas. You can also think about your character strengths:

  • what strengths and qualities do you already have?
  • which ones would you like to have?
  • what does all of this tell you about what is important to you?

I also like the magic wand question:

  • Let’s say I have a magic wand and when I wave it all of your painful thoughts, feelings, memories, and sensations stop being a problem for you. What would you do with your life?
  • What would you start, stop, do more of or do less of?
  • How would you behave differently?
  • How would others know (i.e., what would we see and hear) that things were different for you?
Image from: http://blog.theaawa.org/3-steps-to-finding-your-orgs-core-values/
I would add authenticity, challenge, contribution, creativity, determination, friendships, growth, happiness, kindness, meaingful work, optimism, openness, resilience, and self-respect to the list I’ve already mentioned for myself.

Once you figure out what’s important to you, you can move on to the committed action piece of the puzzle – doing what is important. “Committed action means taking effective action, guided and motivated by values. This includes physical action and psychological action. Committed action implies flexible action: readily adapting to the challenges of the situation and either persisting with or changing behaviour as required. In other words, doing what it takes to effectively live by your values.” (Russ Harris, ACT Made Simple). I think the last part of this – the flexible action part – is really important for Chronic Illness Warriors. There are often ways we can adapt in order to live by our values, sometimes we just have to be creative. Some of this action might actually be uncomfortable for you, at least at first. It might challenge your thoughts and feelings about your illness, perhaps even your sensations. When I was in LA on my solo trip, I decided to take a surfing lesson because I had always dreamed of doing so. Surfing is super hard! And I wasn’t very good (granted it was just one lesson) and I hit the ground under the water so many times. It was such a challenge to keep going and I was super sore after. But… it was worth it. It falls into my values (adventure, challenge) and while I may not be super keen to jump on it again (I declined taking a lesson in Costa Rica) I’m so glad I did it, and yes, it was worth being sore and tired afterwards.

Post-surfing I was sore but happy. (Los Angeles, 2018)

How will this improve your wellbeing? Feelings of accomplishment, of doing what we love to do, and keep busy with activities that engage in our values have been shown to be helpful for our mental health. And a lot of research in this area has been done with chronic illness and chronic pain. I’m not saying it’s easy, but it is worth it.

Keep making the most of it everyone!

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