There are a few different types of self-care, and reading self-help books actually hits two categories of self-care. Reading is a form of intellectual self-care – it’s good for our brains. Self-help (in the form of books, podcasts, Youtube videos, blog posts, etc.) is a form of emotional self-care. So self-help books are a form of intellectual and emotional self-care. And I’m here for it. Let me know what some of your favourite self-help books are! And keep making the most of it!
Hello Readers, Warriors, Spoonies! I appreciate your support on this blog which I’ve been running (and writing) for several years. I’m going to take a small pause on new content (other than a few Sunday videos which were prescheduled) as I worked on a few other projects (new podcast) and focus on work, which is starting to pick up again. I also find these breaks really important for my mental health.
If you have ideas for content you’d like to read about on here (or see videos for) comment on this post as I’d love to hear from you. The podcast I’m starting with my friend and colleague is on personal growth, and I’ll definitely give more details in the near future. You can always follow Chronically Living on YouTube and follow me on TikTok @kelseyleighharris for coping skills. I hope to be back soon.
As always, keep making the most of it!
Video: Name Your Pain (a quick coping skill)
In this brief coping skill, we can externalize (or defuse from) our chronic pain. I’ve used this technique many times with thoughts, and recently someone suggested using it for pain. It can totally work for physical pain or emotional pain. Of course, it’s not perfect and won’t work for everyone, however, it can be worth giving it a try so that we can keep on making the most of it!
Top Post of All Time (So Far): The Feeling of Frustration When New Symptoms Appear
This post was back from February of 2018. I was recently looking at some stats for this blog over time and I was actually a bit surprised this was the top post as I knew there were several others that I’ve noticed get a lot of hits. That being said, maybe it’s not surprising because many of us with chronic illness – diagnosed or undiagnosed, and regardless of our current health status – often deal with new symptoms. So here’s a repost of that post. No, extra commentary added (as it’s also interesting to just see where I was at physically and mentally at that time).
I’ll admit that I’ve been pretty lucky in the sense that my symptoms have remained the same over the past few years. Chronic, widespread pain (joints, muscles, nerves) and fatigue (yes I like to be in bed by 9:30 at the latest, though I do try to get up early). The catch-22 is that it’s hard for any official diagnosis to be made when new symptoms aren’t popping up… that leaves the question, is it better when they do?
I’m a sun bunny. Which is not good if I really do have lupus. AVOID THE SUN! Is what is preached as it exacerbates symptoms and can lead to rashes. I spent all of last summer, and the summer before out in the sun, just here in Toronto, but still. Too much sun and yes my joints maybe hurt a bit, but literally only if I was lying on the beach. If it was combined with some sort of exercise, then not so much. Fast forward to last week, which I spent in Arizona. Above average temperatures all week lead me to hiking, swimming, the hot tub, and patio lounging. All of my favourite things. Oh yeah, and it lead me to these little tiny white bumps on both my hands – a sun rash.
And while the optimistic part of me took a picture so I could show my rheumatologist (my next appointment isn’t until May). Maybe they can officially say it’s this or that! The realistic part of me says “oh fuck, now I can’t go out in the sun.” Segue grumpy face. I don’t want to wear long sleeves, as was suggested to me on Instagram when I posted a picture of my hands (also not sure how I’m supposed to cover my hands in the summer anyway). So, I’ve decided to take my psychotherapist’s advice for now and be grumpy about it. It’s impossible to be happy and positive all the time (even though that’s my preferred mood). I’m going to be grumpy and frustrated and sit in that emotion for awhile, until it’s time to not do that anymore.
If anyone has any advice for sun-lovers, stories, or anything else they’d like to share, feel free to comment or email me.
So that was that. And now it’s 2023, almost five years later, where I can give so much more of what I’ve learned and try to share that with all of you.
Keep making the most of it everyone!
Video: Your Mind Thinks It’s a Mind-Reading Machine
We tend to believe everything our minds tell us. This is completely natural. However, our minds are not actually great mind readers. Watch the video for more on that.
As always, keep making the most of it!
Why Are You Attached to Your Illness Identity?
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!
Video: How to Deal with Emotion & Pain Sensation Storms
It’s common to get overwhelmed by your emotions, and equally common to get overwhelmed by sensations when you have chronic pain or chronic illness. I know, because I’ve been there with you. Today I’m giving some psychoeducation on these storms and one way you can learn to deal with them so you don’t get swept away.
Keep making the most of it!
Critical Coping: Problem-Focused vs. Emotion-Focused
I used to always use problem focused coping. Like 99.9% of the time. And it usually served me well, but not always, and certainly not always after my chronic illness snuck up on me. Then I started to use more emotion-focused coping, a totally different coping style. And here’s the thing, I now use both and you probably need to as well. But hold on! What the heck are problem-focused and emotion-focused coping anyway?
Problem-focused coping is typically used for solvable problems, ones that can be fixed, and make the problem go away. For example, if we lose our job due to company restructuring (this happened to me back in the day) then we would use problem-focused coping in order to find another job and make sure we can support ourselves in the meantime.
Emotion-focused coping is what we use when the problem can’t be fixed, and the problem will not go away. It is dealing with emotions that arise from an unfixable problem. Kind of like what happens when you have a chronic illness.
Both of these skills are necessary in life, but the problem is, most of us are taught more about problem-focused coping that emotion-focused.
Let’s look at problem-focused in the context of chronic illness or chronic pain. What are some solvable problems or areas in which we would use problem focused coping? Well, lifestyle changes are one area. We are told or we read up on different “diets” or exercise routines or incorporating meditation, etc that will help us with some of our symptoms. Or maybe it’s just taking medication as prescribed. We would use problem-focused coping because lifestyle changes and medication adherence are fixable problems. We’ll likely use SMART goals (specific-measurable/meaningful-attainable/adaptive-relevant/realistic-timebound) or other techniques to make these changes. And, while nothing is a guarantee, there is a lot of evidence supporting that certain lifestyle changes will help with symptoms, essentially “fixing” (I use that term loosely) the problem.
How about emotion focused coping in the context of chronic illness or chronic pain? While, chronic disease distress, anxiety and depression are all common in those of us with chronic illness. Our illnesses likely won’t go away and our emotions – well, we’re meant to have them. So with this I see a lot of acceptance practices being used and needed (here’s a link to one of my favourites). Self-compassion is another area where we are utilizing emotion focused coping (here’s a link to one of those practices). We have to learn to live with difficult emotions that come and go, and difficult sensations, such as pain. If you’re not good at this, I want to normalize it for you – most people aren’t! This is a skill set most people need help with.
Who can help you add these skill sets? Well, there are lots of places to go. A counsellor/therapist or health coach is one place. I would say the health coach would help more with problem-focused and therapist with emotion focused (as well as problem-focused). You can also look in the self-help section of your local library or bookstore. Those meditations I linked are another place, and I’ve done a number of episodes on these in my podcast (check out this episode on acceptance for example).
Once you have and start using both types of coping skills, you can start making the most of it!
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Daily Stretches: Shoulders
This week I decided to share with you some stretches that I like for my shoulders (that also give a bit of a stretch in the upper back and biceps). Stretching is so important, so I encourage you all to incorporate more of it into your lives. As always, please consult with your healthcare professionals to ensure you are doing stretches properly and safely.
Take care and keep making the most of it!
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How well do our pain medications work?
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?
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!
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.
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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