This is a metaphor I found at this website. I love what the writer of it did here. It’s an alternative to spoon theory, where the biggest different is that spoon theory only focuses on energy, and this metaphor – a knight in battle worn armour – looks at all aspects of having chronic pain/illness. At the end of the day, you can prefer whichever metaphor you do, but I like to bring some psychoeducation and alternative methods of thinking to you, because I like when they are brought to me! Stay strong and keep making the most of it!
This is not for the faint of heart. To be honest, this is great if you’ve been building up your exercise game and if you do some hiking already. I did a video post last year on more gentle hikes, which are a fantastic alternative to going for a walk. This is kind of levelling up those gentle hikes. Yes, I do this even with chronic pain. Why? Because I love hiking, and will take the time to recover (for example, the day after I did this I did a channel float where I sat on a tube for 3 hours and floated down a channel/river). Remember to please consult with your healthcare team before starting any new exercise. Alright, take care and keep making the most of it!
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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.
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.
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.
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!
It’s not really a surprise that Spoonies have more stress than healthy folks. Chronic illness and chronic pain warriors just have a lot more to deal with. Coming up with ways to relieve stress is important, and something I try to pay attention to. As stress accumulates it can lead to mental health problems, and quite often, especially with autoimmune diseases, flares. Today I thought we’d focus on some causes of stress and I’ll give some ideas (that work for me) for you to try out to see if they help at all.
First, I thought we’d start off with a few definitions. The reason I want to give these is that often as a therapist-in-training, I see that people don’t really understand the meanings of the words they use, nor are they aware of the difference appropriate emotional responses and ones that don’t fit the situation.
- stress – normal, physiological reaction caused by the fight-flight-freeze response in our brains, alerting us that something needs our attention. It’s neither good nor bad, but is a signal telling us that we need to act on something. podcast
- anxiety – “an emotion characterized by feelings of tension, worried thoughts and physical changes like increased blood pressure” (American Psychological Association). Anxiety is also not inherently good or bad. It’s another natural response of the fight-flight-freeze part of our brain. It’s also normal and part of what makes us human. There is no way to be totally free of anxiety. Fear, on the other hand can be extremely protective and it can be easily confused with anxiety. podcast
- Anxiety disorder: anxiety that is out of proportion with the situation, and is long-lasting and severe can indicate an anxiety disorder. Someone with an anxiety disorder has “recurring, intrusive thoughts or concerns” (APA)
- depression: an emotional disorder that can include feelings of sadness, loss of interest in pleasurable activities, and low energy and motivation. Sadness is a common emotion that is important to our functioning. Depression occurs when sadness doesn’t just “go away” on its own. Both anxiety disorders and depression are helped with psychological treatments. blog, podcast
- trauma – “an emotional response to a terrible event like an accident, rape or natural disaster. Immediately after the event, shock and denial are typical. Longer term reactions include unpredictable emotions, flashbacks, strained relationships and even physical symptoms like headaches or nausea” (APA). I’ve heard this one be misused often, so just be aware of whether you’re actually experiencing trauma. This can also be helped with psychological treatments.
Okay, now that we’ve got that out of the way. What are some common causes of stress in Spoonies?
- physical symptoms – flares, pain, and basically any other annoying and/or debilitating symptom that comes with your chronic illness. blog
- medical gaslighting – when a doctor or healthcare professional dismisses your pain and/or symptoms. podcast
- interpersonal relationships – difficulties with your partner, family, or friends often stemming from a lack of understanding of your illness. blog
- finances/insurance – even with insurance there is a cost of medications and other treatments that may not be covered or give you as much coverage as you need. blog
These are of course, just a few, and you may experience a lot of other stressors depending on your illness and overall life situation. The point out reducing stressors like this is to improve your overall quality of life. So, here are some suggestions that I’ve found to be helpful for each of these (I’m going to link some of my other posts and podcast episodes in case you want more in-depth information).
- Mindfulness, exercise, sleep, and diet. This means daily practice of whatever way you stay present. Getting whatever type of exercise is accessible during the day (even if it’s a short walk). Practicing good sleep hygiene. And eating as healthy a diet as you can. podcast, podcast, podcast, podcast (yes, one for each of these).
- Being a self-advocate when it comes to your health and knowing your rights. The medical gaslighting podcast episode I mentioned earlier goes into being a self-advocate. For disability rights check out this podcast.
- Effective communication and emotional regulation. We can’t control other people but we can definitely control ourselves, even if our emotions are high. podcast
- Budgeting, budgeting, budgeting. I am without health insurance for the first time in many years. And yes, I live in Canada where healthcare is “Free” (with the exceptions of medications, dentistry, and adjunct care such as physio/chiro/naturopath/massage/etc). Yet I’ve seen the chiropractor twice in the past 3 months (with another appointment today) and gone for a massage. I’ve very meticulously budgeted these in because they are so helpful. The blog post mentioned for finances incorporates budgeting.
On top of all this, practicing self-care (podcast) is very helpful. If you don’t like the term “self-care” because it’s been waaaay overused in the media than maybe think of it is as “ways to improve my overall health.” It includes domains of : physical, emotional, intellectual, social, spiritual, and work. It is also incredibly helpful in reducing stress levels. I’m going to be hosting a self-care challenge starting on April 24 on the premium blog. To sign up for the challenge it is only $5 and you get 4 weekly premium posts, motivation for the challenge, ideas and help with the challenge, and an opportunity to be featured on the blog and/or podcast! Stay tuned for more!
Until next week Spoonies, keep making the most of it!
Okay, so this is the first time I’ve ever made Eggplant Parmesan yet alone use this particular recipe. You can find the recipe I used here. By the way, this ended up being pretty good. I’m kind of hit-and-miss with eggplant but I liked this. I mean anything with cheese on it is good! That being said you could use dairy free cheese to make it, well, dairy-free. You can basically modify as needed, which is what I do depending on what I have in my house. Remember that healthy eating and nutrition is essential to our health (as in the podcast episode with Dr. Steph, which you can find here).
Let me know what you think of the recipe, and keep making the most of it!
“Positivity is not about how to maintain a positive attitude, but how to produce positive emotions.” – Frederickson, 2009.
“Research indicates that pessimism correlates with depression, lowered achievement, and health problems.” – Martin Seligman, 1998.
If you don’t know who Seligman is, that’s totally okay and to be honest totally normal if you haven’t studied psychology. He’s the founder of positive psychology (which does not say that positivity is the cure to mental health, just to be clear) and has done a lot of research in this area. For me, the interesting part of the statement isn’t the mental health aspects, which are a bit less surprising, but the physical health part, because what does that mean for people with a chronic illness?
Okay, so here’s a quick overview of some research of optimism vs. pessimism and chronic pain or illness. According to Forgeard and Seligman (2012) disease may progress slower for optimists than for pessimists. Optimists typically have better cardiovascular (heart) functioning and less heart disease, and they may have better immune functioning (though the research is more mixed on that the later). They also found that cancer patients had better survival rates one year after diagnosis if they were optimists, and that in general optimists are about half as likely to die from whatever disease they have than pessimists are. They do caution that some studies don’t show this effect and/or the results are negative, but it’s theorized that the stage of disease may play into this. They also theorize that unrealistic vs. realistic optimism plays a role. (I’ve often said that you can be – and that I am – a realistic optimist).
In terms of chronic pain, Ramirez-Maestre et al. (2012) found that optimism leads to better overall well-being and this might have to do with coping strategies that optimists and pessimists use. Basically, pessimists are more likely to use passive coping strategies such as avoidance and optimists are more likely to use active coping strategies such as acceptance. Active coping leads to lower pain severity, less depression, and better daily functioning.
I can hear some of you saying, “But I’m naturally pessimistic! I can’t help it!” Positive psychology actually shows that we can have learned helplessness and learned optimism – yes, I said it, we can learn optimism. It’s not necessarily a fixed part of personality and there is research to support that. Basically, if we learn to combat negative self-talk, we can become more positive. Pessimism is caused by selecting our attention to certain things as well as a lack of internal confidence in our abilities to control or change parts of our lives (learned helplessness) so when we fail at something, we blame it on something within us we can’t change. I hope I didn’t lose anyone during this.
If you want to be more optimistic here’s something things you can do, according to Seligman:
- utilize gratitude (maybe use a gratitude journal or write a gratitude letter)
- help others in need (by volunteering for example)
- challenge your negative thoughts and believes (what’s the evidence for and against them)
- tackle your negative self-talk (trying changing it)
In the Science of Well-Being course taught by Yale professor Laurie Santos, she explains that only 50% of our happiness comes from genes. So, if you’re still believing that you can’t change from being a pessimistic to an optimistic because it’s how you are born, then remember that. 10% of our happiness comes from our circumstances, and the last 40% comes from our actions and thoughts. Which means, you can still improve your levels of happiness (and thereby some aspects of your health) even if you’re not naturally inclined to optimism.
I hope this was helpful for some of you! Let me know how it goes with those four techniques to learning optimism! Keep on making the most of it!
Back after my hip surgery I wanted to continue to do yoga but had to be very careful. (Technically I still have to be careful, just not as). So I found chair yoga on YouTube and thought it was great for people with limited mobility. I modified a lot at the time, so I suggest if you’re going to try these out, you can modify so it’s safe for you to do depending on your needs. I’m a big fan of yoga practices because it has so many health benefits. Yoga falls into the category of mindfulness. You can check out my podcast on that topic here.
Enjoy your yoga today and keep on making the most of it!
I will admit that I haven’t had too many issues dealing with ableism. However, it’s an experience that everyone dealing with a chronic illness (visible or invisible) or a disability has had to deal with at some point. Emotions can range from moderate annoyance to incredibly frustrating depending on the situation. At work in the past I’ve been up front about my health, which also acted as a preventative measure against ableism. But ableism (like sexism, racism, ageism, and for forth) can happen anytime and anywhere. So how can we deal with it?
My recent experience actually happened at my apartment building. I was carrying three grocery bags and waiting for the one elevator in the building. Because of Covid it’s just one person in the elevator at a time (unless you live together) which totally makes sense. Now, I’m young and obviously my health issues are invisible, but also I was carrying three very full grocery bags and had walked ten minutes with them already. I live only two floors up so I do often take the stairs when I’m able. And the building is only four floors total. Well, this young guy comes in from outside, sees me waiting for the elevator and then says, “even if it weren’t Covid, I would take the stairs.” And then he proceeded to take the stairs. Now, there is a chance he wasn’t making a comment about me taking the elevator, but I certainly took it that way. I would say I was moderately annoyed, because again, even if I was totally okay I was holding groceries!
I feel like there are two approaches to take with this kind of scenario and it really depends on the specifics of the situation.
- I can let it go: This means realizing that while this guy should not have commented, he probably didn’t know any better. Does that make it okay? No, but sometimes there isn’t a chance to do #2. Part two of this answer is that I can regulate my emotions well enough to not be upset by one simple interaction. If I was running into this guy every day and he kept saying similar things, that might be different. I can choose to take this one incident to heart or not.
- It’s time to educate the other person: Again, this depends on the situation. Is there going to be enough time? Will the person be open to listening? Is the setting appropriate? And so on. However, I think this is an important thing to do when possible. “Sometimes people who look healthy have invisible illnesses or disabilities. How familiar are you with that?” I’m sure this is not the best worded example of what to say (feel free to comment better ones!) but you get the picture. Take back the power in a respectful way!
The truth is, any time of “-ism” will not disappear unless the community (both those directly effected and those not effected/allies) stand up to it!
I also, want to take a moment to let everyone know that I was recently a guest on a podcast called BeFun BeKind. Check out my appearance here, where I talk about self-acceptance. Until next week, keep making the most of it!
I know most of us are probably familiar with the phrase, “the pen is mightier than the sword,” and I definitely think that is true. Not just because I’m a writer (I love to write everything – this blog, self-help books, fiction novels and short stories, poetry, screenplays/teleplays) but because there is research that shows that writing (and very specifically journaling) is good not only for our mental health, but our physical health as well. This is one reason Chronic Illness Warriors might want to jump on the journaling bandwagon.
So the whole reason I wanted to write about this is because I was re-reading a textbook for my practicum (basic counselling skills, etc) and one of the interesting things that I read was that a researcher named Pennebaker found that people who record “troubling experiences in diaries showed better immune system responses and significantly better health than those who did not.” Now, I’m not saying I think that any kind of writing is going to suddenly magically cure any of us and we’ll just feel 100% better by doing so. The research though is super interesting. I think that most people can acknowledge the mental health is helped by sharing our story – through therapy, support groups, and writing/journaling. I personally find it just good for my mental health to do any kind of writing, including creative writing, whether or not it directly has to do with my struggles (let’s face it, every writer has a character who is more like them). It can feel good to journal because it can allow you to process, be reflective, and just get something off your chest, and it’s particularly effective if you are struggling with your mental health on top of your physical health.
In terms of physical health, researchers have found journaling to help with viral infections such as Hepatitis (so yes, potentially even Covid-19 as well). There was also a study that looked at gratitude journaling by those with heart failure, and found that morbidity was decreased and inflammation was reduced in the majority of patients. Now obviously more research always needs to be done but it is an interesting and promising start. How exactly does it all work? Well, that’s not 100% clear but journaling can lessen overall stress (for those reasons I stated for mental health) and stress and immune functioning are related, so it kind of makes sense that like some other mindfulness activities, journaling (or perhaps other forms of writing) can be helpful. I’m all about the “even if I just feel better today” (or for a few hours) attitude. Why not help ourselves in the present moment? All we really have is this moment, because the next one doesn’t exist yet, and the last one has passed. In this moment, if journaling helps me feel better and potentially helps my body and mind function better, than maybe that’s a good reason to make today the day you start a journal.
Have a good week and keep on making the most of it!
Literally my least favourite question when I go into any doctor or specialist appointment is, “what is your pain like today?” or “on a scale of 1 to 10, 10 being the worst ever, how’s your pain right now?” To someone with chronic pain, these are the most useless, arbitrary questions. Here’s the thing, I understand why doctors and other healthcare professionals ask the question. They want to get a gauge on if your pain is better or worse than it has been in the past. It totally makes sense. However, there are a few things about chronic pain (and pain in general) that aren’t taken into account with this questions.
- My perception of what a “10” is may be higher or lower than your perception of what that is.
- I’m not always entirely sure what number I should give. Like really, what is the difference between a “6” and a “7”?
- Often pain changes throughout the day, so just because I give it a “4” right now, doesn’t mean that it won’t be an “8” in half an hour.
And yet, this is always the first question asked at any appointment. Sometimes I literally just want to say “I don’t know.!” How many of you feel this way to? Plus, sometimes there is this need to want to give a higher number so that the pain is taken more seriously and not just dismissed. Here’s the thing that healthcare professionals often miss – there are better ways to describe pain than using a 1-10 scale. For example, “what type of pain are you experiencing/do you experience?” “What times of day are worst for pain?” “What activities or circumstances do you notice more pain or less pain?” “Are there any points in the day when you feel little to no pain?” And so on. These questions are easier to answer, and honestly, give a more realistic perspective of my pain than me guessing at a number to give my doctor.
The main model used in medicine (and psychology) right now is the biopsychosocial model (except sometimes doctors forget to use it when talking about chronic pain it seems). For those of you not familiar with this, it is the interplay between biological and psychosocial causes (or maintenance) of a medical (or psychological condition). When applying this model to chronic pain, we look at the biological causes of an illness or injury, and how psychosocial factors maintain or increase the physical sensations of pain. It’s that mind-body connection. Here’s an example: the hypothalamic-pituitary-adrenocortical (HPA) system in your brain has been associated with several chronic pain syndromes including fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, and MS. It is one of the biological causes of pain (though not necessarily the only). Psychological factors that can maintain or increase this pain include feelings of helplessness and hopelessness. Social factors and behaviours that maintain and increase pain include door diet and nutrition, lack of exercise, and substance use (including smoking). Stress is another major psychosocial factor associated with chronic pain. So, rather than asking what are pain is on a scale from 1-10, looking at these factors is likely more productive in both understanding and managing pain!
Let’s talk about pain management. Whether you do this on your own, or with the help of your healthcare team, here are some ways to improve your pain management (because let’s face it, chronic pain is unlikely to magically go away):
- medication compliance – taking all medication as prescribed!
- addressing psychological factors – such as anxiety – this could be through relaxation and meditative techniques or even exercise, or going to see a psychotherapist
- utilizing interdisciplinary healthcare teams – do you have a family doctor? A specialist for your illness or injury? A psychotherapist? A physical and/or occupational therapist? Anyone else who can help you with your pain? (I also have a naturopath and chiropractor for example).
For anyone reading this who is not a chronic pain warrior, please remember that pain isn’t in our heads, and telling us to just deal with it isn’t helpful. In fact it can be stigmatizing, and people with chronic pain always face stigma because of a lack of understanding. We may laugh, smile and have fun, and yet be in pain at the same time. The things are not mutually exclusive. I’m going to link a few episodes of my podcast that complement this post below. For now, keep making the most of it everyone!