So I write a lot of blog posts for my clinics that are really relevant to all of you as well. As a counsellor I specialize in working with people with chronic pain and chronic illness and concussion. As someone who has chronic pain and illness I know how difficult having these conditions can be. I also know how difficult it can be to get a good sleep… but also how important a good sleep is to improving our health. Quite a conundrum. Check out this post I wrote about sleep hygiene and its benefits for our overall health, as well as some sleep hygiene tips that are totally applicable to spoonies (I use them myself!):
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:
- 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.
- Figure out what our values are – using a checklist and/or a bull’s eye.
- 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.
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.
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
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!
This may seem like an odd topic for a blog about chronic illness and pain, but trust me it’s relevant. The same way you survive quicksand is the same way you can learn to thrive with chronic pain. And no, it’s not an easy process, nor is it something you can learn to do in a few days or weeks, but take it from one warrior that it is possible.
The metaphor and skills are based on Acceptance and Commitment Therapy.
Keep making the most of it!
How many times have you said, “I am sick” or “I am a Spoonie” or “I am in pain” or “I am depressed,” and so on? And how often do you feel that is really so? That is what you are? If your answers to one or both of those questions is “a lot,” then know you are likely not the only one answering that way. I rarely use those phrases for myself anymore because I find them unhelpful, but before you run away I want to explain why they are unhelpful. Not just from my perspective from my lived experience, but also what theories in Acceptance and Commitment Therapy (ACT) and related research suggests, particularly when it comes to chronic illness.
First I think I need to introduce you to a few terms. The first is event centrality. This can be described as the degree to which a person perceives an event (often traumatic but can also work for being diagnosed with an illness) as central to their identity. In other words, being a sick person is who you are because of your diagnosis. The second concept is the conceptualized self. This refers to who we think we are (in fancy ACT terms we call this self-as-content). The conceptualized self can take on all the identities we have such as being son or daughter, a parent, a spouse, a friend, and of course a sick person. It also includes our self-evaluations, so whether we describe ourselves as smart or dumb, happy or sad, fun or boring, and so on. What sometimes happens is that we get fused with one (or a few) of these aspects of our identity. In other words, we hold it tightly, are attached to it, and in the long-run doing so usually causes us more problems.
Now this attachment to the conceptualized self can happen to anyone, and we often see it in depression and anxiety as well as chronic illness and chronic pain. There has been some research suggesting that our illness self-concept is a predictor of our adjustment to chronic illness. When we are attached to the identity of being ill we tend to have a lower overall quality of life. I talked about the use of language once on the podcast, and you should listen to that episode if you haven’t already. I want you to think about these pairs of phrases:
- “I am anxious” vs. “I am experiencing the feelings of anxiety.”
- “I am depressed” vs. “I am experiencing the feelings of sadness”
- “I am sick” vs. “I am experiencing the symptoms of lupus” (or whatever illness you have)
- “I am in pain” vs. “I am experiencing uncomfortable sensations”
You’ll likely notice that you attachment to that identity changes. And when we aren’t overly attached we actually can take better care of ourselves (health behaviours, self-caring, etc.) and our quality of life improves because we find we are able to do more values-based activities that we enjoy (yep, even with illness and pain). When we remove the attachment to our conceptualized self we are more willing to allow our experiences and see them as passing.
There’s a few ways we can learn to do this. First, we can just start to notice and name are thoughts and feelings – “I notice I’m having the feeling of an uncomfortable shooting sensation in my hip” or “I notice I’m having the thought that I’m always in pain.” There are tons of ways to create some space between us and our thoughts and feelings when we are attached to them. This is just one way. The other process we can use to change this attachment to the conceptualized self is to develop self-as-context. This is what is also referred to as the noticing self. The part of us that just watches and notices all our experiences: what see, hear, smell, taste, touch, think, feel, do, etc. It’s a part of us that never changes. It’s like the sky and all of the thoughts and feelings and sensations are like the weather. The sky sees the weather but the weather cannot hurt the sky. And if you go above the clouds, the sky is still there, even when it can’t be seen. I’m going to encourage you to follow along with the video below to get an idea of what it is like to experience the noticing self.
I personally find this really helpful (and so do many of my clients) in creating a new relationship with my thoughts, feelings, and sensations, and forging out new identity, where I’m not limited by any of these things because I can notice them. They are not me. I am not chronically ill, I have the experience of having a chronic illness.
Keep making the most of it!
Pain – both physical and emotional – are parts of life. They are also inevitable with chronic illness and chronic pain syndromes. The more we try to fight or resist our pain, the more it comes at us. So, let’s talk about why that is and what to do about it. Because, really, we can’t keep making the most of it if we struggle. Check out this podcast episode for more about this.
Keep making the most of it!
We can begin to learn to become more willing with different sensations and emotions by practicing with our breath. As we learn to make room for urges, emotions and sensations, we offer ourselves more choices in life to live by our values. Please read the disclaimer at the beginning of the video. Only participate if it is safe for you to do so. If you are unsure, please speak with your physician.
Keep making the most of it!
I’ve been eating a lot more plant-based lately and it seems to be helpful fr my digestions, so I decided to share one of my favourite recipes with you. The recipe was also shared by my guest, Kathy A. Davis on my podcast. Listen to it here.
Until next time, keep making the most of it!
I decided to do a 4-part series on some of my favourite pain coping skills. They are all either my favourites because I have found them to be particularly useful for me, or that reason plus I have seen them be useful for other people. I will also add that I always double check to see if there is any scholarly literature on the subjects I write about, and there definitely is for all of these coping skills. So, without further ado, lets start off with self-monitoring.
You might be asking, what is self-monitoring? It is a part of our awareness (executive functioning in the brain) that we all have, that tracks our behaviours and the impacts they have on us and our environment so that we can alter our behaviour in the future if we choose to. We all use this pretty often. For example, adjusting to social norms would be using self-monitoring. So would reviewing your work for mistakes (because ideally you won’t want to make the same ones in the future). We can break self-monitoring down into two types. Qualitative – or what I’ll call subjective monitoring – which is how our emotions, sensations and behaviours change throughout the day and during different situations. Then there is quantitative – or what I’ll call objective monitoring – which is the frequency, duration, and difficulty of our behaviours.
What the heck does this have to do with chronic pain? Sometimes people with pain over-self-monitor in that we overthink our pain and our behaviours which is typically not helpful (I’ll get to that in a minute). When done properly, self-monitoring can be used to help us accept our emotions and sensation, create some distance between us and our thoughts about pain, and get us to do behaviours/actions/set goals/whatever you want to call it, that will improve our lives or just in general fulfill us! And this is what I see is often difficult for chronic pain warriors. For example, if I notice that a certain activity causes me more pain than normal, I would mentally note that as well as the frequency, duration and difficulty of the activity so that I can make adjustments in the future (i.e., not to the activity, do the activity for less time, do the activity less – or more, depending on the situation – often, or do a similar activity that is less difficult). A few years ago I did a pole dancing class. Super fun and a great workout. However, I did notice that my hip pain increased, especially after the class was over. I decided that while though it was fun, the friend I went with and I have lots of other activities we can do together and I exercise in other ways, that maybe this wasn’t the workout for me. I adjusted. Another example is hiking. I know how long a hike I can do (about 75-90 minutes max.) before I have expended too much energy and/or crossed my pain threshold. What does that mean? I still hike because I LOVE hiking, but I do it for 90 minutes or less, followed by rest.
Earlier I mentioned that when we over-self-monitor we often do things that aren’t helpful. This also happens when we don’t self-monitor our pain at all. Let’s tie it into that pain cycle I wrote about a few weeks back. In the pain cycle we see that being less active leads to a loss of fitness, weak muscles, and joint stiffness. If you self-monitor and notice that if you lay on the couch all day this happens but if you go for a (short) walk it doesn’t lead to these specific symptoms, that might lead you to do the walking. Pain cycle again says that then we create lists of “no go” things we cannot do, and this leads to sleep problems, tiredness, and fatigue, which also leads to stress, fear, anxiety, anger, and frustration. Okay, so doing less isn’t necessarily helpful even though our brains say it will be. We can also skip ahead in the cycle and go to negative thinking and fear of the future and how that leads to depression and mood swings. Monitoring our thoughts is helpful at this stage. And then there is time off work, which inevitably causes money worries and often ties into relationship concerns. And then everything leads back to more chronic pain. I want to point out with the activity portions of the above paragraph, that pacing is essential and I did a whole post on that a few weeks ago.
What can we do to start self-monitoring in an effective way? First thing is to keep track of your pain. This can be mentally, but if you have brain fog or just tend to forget it can be more effective to write it down in a journal. There’s a few ways you can track it. Just a general 1-10 score for the day and a list of what you did during the day. Or, if you want to be more effective with your activities, you could write a score before and after each activity you did to track changes. That will also tell you when there was no to little change so you know if you can keep doing the activity the same way, for the same amount of time. The other important thing to track in the journal can be other triggers to pain. For this one, I would suggest tracking emotional pain (sadness, anxiety, anger, etc.) as much as physical pain. Why? The body-mind connection. Often the more depressed we are, the more pain we have (and vice versa). Same with anxiety. It’s easier to make adjustments when we know what’s going on.
Okay, longer post than I anticipated but I hope that it’s helpful for all of you warriors! Keep on making the most of it!
Making room for our emotions (like our sensations) can be difficult to do, mostly because we spend most of our time doing the opposite – pushing them away. If you watched my video from January 9 on The Struggle Switch, I explain how doing the opposite – allowing/accepting/making room for difficult thoughts, feelings and sensations – actually makes them less powerful and have less control over us. This meditation is one way we can learn to do it.
Let me know how it goes and keep making the most of it!
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The chronic pain cycle is essentially what happens to us when we are in pain and let it consume us. First off, this is normal! I totally remembering being there myself. Usually we try to address only part of the cycle, without managing the whole thing (i.e., we like those prescribed medications from our doctors but still get frustrated when they don’t fix everything). I thought today we could talk about a few different versions of the cycle, and address a few ways to address them so that pain is less consuming and we can get back to a life that is closer to what we want.
First off, some of the examples of the pain cycle are pretty basic. Pain leads to sleep problems leads to mood problems leads to decreased activity leads to low energy leads to decreased pain. Or pain leads to muscle tension leads to reduced circulation leads to muscle inflammation to reduced movement leads to pain. And any case, you can start pretty much anywhere in the cycle, but you always end up with more pain. A more comprehensive version of this cycle is shown in the diagram below.
Here’s the problem: our brains tell us that we shouldn’t move, we shouldn’t be active, that things will never be good for us, that we will never have normal lives, etc., etc. because they are trying to keep us safe. Unfortunately, all the research shows that our brains are incorrect and that these thoughts really don’t do us any service. They keep us trapped in the cycle. I remember when I first decided to start making changes for myself. I took myself to physiotherapy (physical therapy for you Americans), the chiropractor, the naturopath, massage therapy, and psychotherapy, because I wanted some relief. What I was encouraged to do was break the pain cycle. How?
- Psychoeducation/Health education about chronic pain. I know most of you won’t read scholarly journal articles (as I do) about all of this and that’s fine, but there is a wealth of information on the internet (think clinic websites: Mayo Clinic, John Hopkins, etc.). Also, if you talk to health care provides (your specialist, or any of the above that I’ve mentioned) they will be happy to provide you with the knowledge you need to start making different choices. You just have to be open and willing to listen.
- Increase fitness and exercise. This might be as simple as stretches and easy exercises given to you by the physiotherapist, chiropractor or massage therapist. It might also include actual cardio and/or strength training. This should of course be paced, and you should come up with a plan with your healthcare specialists. I went to the gym and got a personal trainer who had worked with people with autoimmune diseases before.
- Take your medication. Inflammation in particular is often best addressed with some sort of medication. Of course, there are alternative ways to address it as well, such as through diet or supplements. I like the approach of doing both. I take my medication as prescribed and then balance that with diet.
- Address side effects of medication, such as weight gain or others. This might be with your doctor – adjusting doses or which medication you take – or it could be done holistically through other therapies (as mentioned above), exercise, and diet.
- Address the cognitive issues that arise. This means anxiety, depression, sleep issues, stress, fear, frustration, anger, negative thinking, rumination, etc. While these are normal experiences, they can make it harder for us to make changes. These can be addressed through sleep hygiene, meditation, and psychotherapy.
Where am I in the pain cycle? Look, to be honest, some days it’s not perfect and I fall right into the cycle. However, most days I can openly and curiously acknowledge and accept my pain, breaking the cycle before it begins. I use all of these tools and healthcare providers because it helps. I know from experience that chronic pain does not have to be life consuming.
I’ve linked episodes of the podcast and my meditation channel throughout this post if you want more information. Until next week, keep making the most of it!