I was listening to a podcast called Therapy Chat, on an episode about therapist self-care. The guest talked about 2 different types of self-care: macro and micro. While this certainly applies to me and other healthcare professionals, I think it also applies to everyone else, including my fellow Chronic Pain Warriors and Spoonies. Self-care is important and I’ve talked about it on the blog many times before. More recently the self-care posts have been about Activities of Daily Living. This post (and the next one) is going to broaden the definition of self-care beyond our ADLs (though I still firmly believe that ADLs is the best place to start).
What is Macro Self-Care? As an adjective, macro means “large-scale” or “overall.” So we’re looking at big ways to engage in self-care. These ways tend to be more time consuming and more expensive that micro self-care. They are usually things we can only do for ourselves on occasion – a few times a year, maybe once a month depending on your income. Though they tend to be fewer and further between, they have the ability to really help us reset. Sometimes we need to fully disengage from other parts of our life in order to come back to our problems and difficulties feeling refreshed.
Examples of macro self-care include going on a vacation, getting a massage or having a “spa day.” Spending a weekend away with a partner. Taking a class that’s of interest to you (like an art or music class). Going on a retreat. Recently I went on an 11 day trip to Turkey and Egypt with my parents and a good buddy of mine. I hadn’t taken a vacation (other than my brother’s wedding) from work in a year. I also hadn’t travelled outside the country since 2019. It was much needed macro self-care. I also spent a “long weekend” (as in we both took off Friday and Monday) with my partner in a cabin. Another great way for me to get some macro self-care in. I definitely do try to prioritize some of this. Again, sprinkled throughout the year in different forms. It decreases my stress overall and helps me reconnect with the people who are important to me.
All of these things require planning and some money. This is what makes macro self-care important but unsustainable. Which is why next week I’ll be writing about micro self-care and how we can engage in that throughout our every day lives.
My AI disease has more or less been in remission for about 6 months (the doctor officially gave me that status in July). As such, I was very optimistic about my travel plans to Turkey and Egypt for November. I mean, I would have gone on the trip regardless, there was just less planning around how to manage than there would have been before (I almost wrote worry instead of planning, but truth be told I am able to limit my anxieties around travel because it is a values-based activity for me). Travel for me, means going on adventures – doing as much as I can, eating whatever I want, and just having as amazing an experience as I possibly can…
And I did. I ate my way through Istanbul. Did 2 walking tours, climbed a tower, went on a boat ride down the Bosphorus, had drinks on a rooftop patio looking out at the Galata Tower. In Egypt I went on a Nile dinner cruise, saw the Great Pyramids of Giza, had an authentic night out with friends (1 of which is a local) in downtown Cairo, went to the Citadel, the Egyptian Museum, Temple of Karnak and Luxor Temple, Valley of the Kings and Queen Hateshpsut’s Temple, and did a hot air balloon ride over Luxor. Literally packed so much in. And then came home to some body aches and pain, an upset stomach, and a cold.
To be fair, the cold could’ve been (a) because there is one going around that I’ve been told about many times, or (b) because I was up for almost 36 hours (minimal plane sleep due to crying infant) and had to run through an airport in order to catch my last flight home. However, what is important for me to remember is that remission could go away if I’m not careful. So, here are three lessons I’ve learned when travelling while in remission from AI.
Getting enough rest. Sure, if your vacation is all about laying on a beach, it’s easy to pace, get enough rest and enough sleep. If you’re like me and prefer an adventure vacation, then it’s important to not overdo it. To be honest I think I overall paced well. Only 1 (maybe 2) activities per day – until the last day, in which I crammed more in. I struggled with the sleep part, again, particularly at the end of the trip. Being awake for 23 hours before boarding my first flight was perhaps not the greatest idea. And while I don’t regret the activity I did that sacrificed sleep, I think that squeezing in some rest/nap time, as impossible as it seemed, would have helped me a lot. So don’t forget to (a) Pace your activities, (b) rest between activities, and (c) get 8ish hours of quality sleep every night (and don’t stay up too long!)
Watch what you eat. I had cut out dairy and gluten and meat last fall, which has really helped me a lot. On the trip I ate a lot of dairy, gluten and meat. It is possible to have limited some of this (the gluten would have been hard). And I did have days where I limited the meat and dairy in particular because I could tell it was rocking my body in all the not good ways. While I think it’s important to always be flexible (including with diet), flexible doesn’t mean swinging to the opposite extreme. Lesson learned.
Keep stress low. Theoretically my vacation was relatively stress free. At least the vacation part of the vacation was. The travel part was not. Pretty much every plane was delayed, and/or we were running through airports to catch flights. Much of this was out of my control, of course, and yet taking more time to meditate, ground or recharge (on the flights for example) would likely have helped me get my stress levels back down much faster. I did keep up my meditation practice (for the most part) throughout the trip, which was likely helpful as well.
Staying in remission is a delicate balance. I got here through a change of diet, consistent exercise, and stress reduction, so it makes sense that changes away from those things that have helped me could lead back to AI flares. As Alanis Morrissette once said, you live you learn and that’s all any of us can really do. I’m going to continue to pay attention to and honour my body in anyway I can (at home and while travelling) – and I hope you do too – so that we can keep making the most of it!
On my professional blog I wrote about how hugs can benefit mental health, and basically, why we can always use more hugs. (If you don’t like being hugged, self-hugs also totally count, as do cuddles with pets). There are a lot of physical health benefits I outline in the post as well, including decrease in blood pressure, improved heart health and decreased pain.
I feel a little bit of unease writing this post because I don’t want to give the impression that I think it’s completely possible for everyone to do this. In fact, prior to my own personal experience, I thought this was highly unlikely if not nearly impossible even though I’ve read about others doing similar things (reducing ANA, reversing illness, stopping illness progression, etc.) through a lot of the same methods I’ve used. I only started with lifestyle changes in order to reduce symptoms and general distress so that I could do more values-based activities. All of what I did was with the guidance, help and advice of amazing holistic healthcare professionals – my naturopath, my psychotherapist, my physiotherapist(s), my chiropractor(s), and my massage therapist(s). My primary care/general practitioner/family doctor (however you want to say it) and my rheumatologist(s) supported my lifestyle changes but never advised me on them. They deal with medications, and frankly that’s fine. I also want to say, my intention has never been to go off any medications. I like an East-meets-West approach to healthcare. All that said, here’s what I did (in order of appearance):
Stress Reduction – I learned a lot of coping skills to reduce my stress from my psychotherapist and have had regular acupuncture sessions with a naturopath for several years (minus 1 year where I didn’t have benefits).
Tied in with the above, regular meditation and eventually yoga practice. I continued to reduce and manage stress through these means. Mindfulness in general can really help with anxiety, depression, and has been shown to reduce pain in many, many people, across many, many studies. I currently meditate 20 minutes (minimum) per day and do yoga 4-5x/week (between 20 minutes to 1 hour each day).
Exercise – my exercise routine began with some work with a personal trainer who worked with autoimmune disease in the past, and then going to the gym 3x/week. When the pandemic hit, I began working out at home with some basic body-weight strength training exercises. I currently alternate strength-training with exercises given to me by my physiotherapist and chiropractor. On top of that I walk around 10,000 steps per day. I find that it works best if I pace by splitting it up with breaks and doing the same amount of activity each day. My physiotherapist and I are working on building up my strength so I can do more and longer hiking (currently I can do up to 1.5 hours, once or twice/week).
Stretching – I’m giving this it’s own category because it’s not ‘exercise’ and yoga, while can be a great stretch, is much more than that. I do several stretches daily that have been given to me by personal trainers, naturopaths, physiotherapists, chiropractors, and massage therapists. I stretch every part of my from my jaw to lats to wrists to legs to back to toes. I probably spend about 15 minutes just on stretches each day.
Diet/nutrition – this is something I struggled with for a very long time. I was recommended paleo diets and AIP protocols and this and that and I struggled to stick to any of them. So I made my own protocol/diet by just paying attention to how I was feeling after eating different foods. Then I eliminated what doesn’t make me feel good. I describe my current diet as “gluten-free pesca-vegan” because I mainly eat fish/seafood and then a vegan diet (no dairy) and gluten-free. (I probably should cut down sugar more and reduce alcohol a bit more but I’m getting there). I’ve been on this “diet” since last November. What’s made it easier for me to stick with is actually that I’m cognitively flexible with it. What I mean is, if I’m out and there are no (or very limited) options for this way of eating, I just eat whatever. If I’m at someone’s house and they serve meat or gluten or whatever, I eat it. This happens at most once/week and often less than that.
This is just my experience. I’ve been able to go off of one medication entirely, one medication was reduce to “as needed” (granted I supplement CBD instead daily – 10mg), and my rheumatologist reduced one medication a few weeks ago from 2000mg/week to 1400mg/week. Despite my lower ANA I do still have some symptoms – a bit of inflammation, some pain, but overall it’s a lot better than it used to be.
Have any of you found a difference with lifestyle changes?
Keep making the most of it everyone!
Always seek help from qualified healthcare professionals before making any lifestyle changes.
This week I thought we’d examine the Greek word/philosophy of sophrosyne and how it applies to living with a chronic illness. The word was first introduced during a daily post on my favourite mindfulness app. I did some subsequent research and really felt it aligned well with many of my personal beliefs and values, as well as research I’ve read in other areas concerning both physical and mental health. So, I’m bringing this concept to all of you, because I think we can all learn from it and apply it to our lives in meaningful ways.
Let’s start with the meaning of the work. Sophrosyne was a Greek goddess of discretion, temperance, and moderation. Many people really hone in on the moderation part of this, and it’s sometimes considered “mindful moderation” when talked about currently. In Greek times, it also meant “excellence of character and soundness of mind” which is what created a “well-balanced” person. Moving forward in time, there are ties to Catholicism, in which moderation is considered the final of the cardinal virtues. Jumping ahead again, Nietzche considered moderation or self-control a virtue which could be extended to self-knowledge. It is the perfect union of self-knowledge and self-restraint, thus the moderation bit. And now, as my parents have always said “moderation rules the nation,” where they referring to sophrosyne? It would appear so.
Why is this important, or rather, how can it help Spoonies and Chronic Illness Warriors? Well, lots of ways actually. Moderation generally requires us to be mindful of what we’re doing. We can moderate our food intake, for example, if we pay attention to how many chips we just ate, or with drinking as in how many beers we just drank. For chronic illness, this type of mindful moderation helps with self-care (which if you’re a premium content subscriber you know has benefits for physical well-being, emotional well-being, intellectual well-being, social well-being, spiritual well-being, and even work well-being). It also can help with medication management (because we know if we took our medication/properly), with emotional regulation (how we deal with our emotions so they are effective), and can decrease stress (we’re not putting ourselves into stressful situations and can recognize when we are in them, giving us the opportunity to turn away). On top of this, the mindfulness piece has a number of benefits for mental and physical health, many of which I’ve blogged about – but you can also listen to on this podcast episode.
So, how can we practice sophrosyne in our lives? Moderation isn’t always the easiest thing to do, especially if it’s not something we’re used to. Here are three ways:
Practice regular mindfulness – this could be formal meditation, mindful eating, mindful walking, or really doing anything while being fully present in the moment.
Relaxation – using techniques to help keep us calm make it easier to engage in mindful moderation. Again, formal meditation works, as does breathing and progressive muscle relaxation exercise, journaling (I like the gratitude journal personally), or going to therapy to talk about our problems.
Emotional Regulation – by learning and practicing emotional regulation skills we become less likely to be impulsive, and therefore, more likely to be able to engage in moderation.
I started a meditation and mindfulness channel on YouTube that currently has meditations, relaxation exercises, and grounding techniques. I will be adding more informal practices in the coming weeks. You can check out the channel here. Like and subscribe so I can keep bringing more content to it.
I’m going to continue to try my best to live the ideal of sophrosyne because I can see the benefits it can have and does have on my life, including my chronic illness and my mental health. I hope it can do the same for you, as you keep making the most of it!
I will start off by saying that a “top 10” is no way a comprehensive list, because there are lots of ways you can improve your health (or at least keep it at base line) when you have a chronic illness. A lot of this I’ve learned through my own trial-and-error, through my studies and work in psychology/psychotherapy, and from conversations with other Spoonies and healthcare professionals. So, this is basically my Top 10 list, and I’m hoping you can pull a few things out of it if you haven’t been doing these already. I’m also going to link some of my blog posts and podcast episodes if you want to have a deeper dive into these topics. Also, I couldn’t determine an order for these, so they are not necessarily in order of importance (assuming there is one)!
Eating healthy. This is so important and often overlooked. Eating food that is organic and free-range is ideal, though if you’re like me this might not be affordable. If that’s the case, throw in some of that where you can and otherwise focus on the food groups, especially lots of green veggies. Limit your red meats, and of course limit any food that makes your symptoms worse (for some people that’s gluten or dairy). Be open to trying out different diets (Paleo, Keto) or fasting – but always consult with your healthcare professionals first. Check out this blog post on eating healthy, and this podcast episode on living with allergies.
Drink lots of water. 6-8 cups a day is ideal. I’m currently doing a challenge through Shape and Foster and part of that challenge is drinking 1.5L of water per day. Honestly, some days I really struggle but I also notice that the days I drink that much water, I drink less other stuff (that’s not healthy) and I feel the best. Water is important for our overall health and can’t be overlooked! I’ve got a blog post about it, and it is an essential of health which I discussed on the podcast.
Take your meds! Medication management can be super annoying but you’re being prescribed them for a reason, and there is typically a lot of science around them. I sometimes forget to take my meds (not going to lie) but again, I do feel best when I take them as prescribed. This doesn’t just go for Western medication either, try out some Eastern ones (head over to a naturopath, chiropractor, or other practitioner) to get some holistic care going. I’ve got a blog post about health management, and a podcast about holistic options.
Sleep hygiene. It’s so important for our physical (and mental) health to get a good sleep. Our bodies need to feel energized and rested when we wake up. Spoonies definitely have extra challenges with sleep. I often toss and turn because I’m never comfortable. However, doing proper sleep hygiene can at least minimize some of these problems and get your a better sleep. When I have proper sleep hygiene, I notice a 50-80% improvement in my sleep! No jokes! Check out the blog post and podcast episode for more.
Exercise. Yes, exercise definitely helps with pain reduction, and can increase things like mobility. There is a ton of science behind it. That being said, you have to be careful not to go over your limits (i.e., just push yourself to your edge but not beyond it) because you don’t want to hurt yourself. Low impact is recommended for chronic illness (walking, swimming, etc). If you’re not exercising, then just experiment with small amounts and gradually work your way up. This is another area that it is important to consult with a professional on. I do an exercise vlog post every 3 weeks, and I did a full podcast episode on exercise too.
Spend some time outdoors. Interestingly I just did a post on this last week that got very few views despite the fact that there is again science supporting how much this can benefit both our physical and mental health. Step away from the city if you can, even if just a few hours. Take the opportunity to breathe in fresh air. Tie it into exercise by going for a walk. Tie it in to stress reduction and just let yourself be. Though I don’t have an episode specifically about this, there is a podcast on holistic approaches that ties in nicely.
Reduce your stress. Being calm, and having as little stress as possible (which I get it, sometimes just having a chronic illness is stressful!) is so important. Stress is a common cause of flares in many autoimmune diseases and in generally, always manifests into nasty physical ailments of one kind or another. This is a good reason to learn some mindfulness skills (which I do a vlog post on once a month). I did a whole podcast episode on how stress and anxiety manifest in the body as well – find it here.
Get involved in your care. This often means we have to be our own advocates for our health. That can include being a little “pushy” with our doctors (I mean it’s ridiculous that we have to sometimes but medical gaslighting is a huge problem). It also means that you may have to create a healthcare team for yourself. I’ve found this to be extremely beneficial for me. For more on getting involved check out this blog post and this podcast episode.
Self-care. There are 5-6 dimensions of self-care (depending on who you ask) and physical self-care is one of them. A lot of the things from this list apply to physical self-care, but you can also add a lot more, depending on what you like – I like Epsom salt baths! I also mentioned that challenge with Shape & Foster earlier which this month is putting an emphasis on physical self-care. Hear more about them on the podcast. I do monthly premium blog posts for self-care which you can sign up for here.
Goal setting. No one can be expected to make any changes to any part of their life – including the physical aspects – overnight. That’s why setting goals can be really helpful. If you’re not currently exercising, then committing to 3 1/2 hour walks per week might a good place to start. Or increasing your veggie intake four times a week. Or spending time outdoors once a week. Whatever it is, make a plan and make it one that is challenging and yet you can stick to. I recently did a blog post on goal setting. This is the podcast episode it ties most nicely in with.
Okay, this was a longer post than normal but I hope you have a few takeaways! Keep making the most of it everyone!