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!
Back in the summer and fall of 2016 I wondered how much I would be able to accomplish in my life. Can I even manage through the situation I’m in? Particularly with my physical health, having recently been diagnosed with an autoimmune disease, and then the mental health consequences (mainly anxiety) that had come along with it? My partner and I were fighting a lot, despite having only moved in together a few months earlier. What would happen to my dreams of being a filmmaker if I can’t be active on set for 12+ hours straight? My self-efficacy was falling and falling…
Self-efficacy is our beliefs in our ability to cope or succeed during a difficult situation. Those with higher self-efficacy, have higher beliefs in their abilities, and those with lower have, well, lower. I see this a lot within the chronic illness community, and it makes sense, because as the opening story pointed out, I’ve been there too. The pain, and discomfort or disability from having one or more chronic illnesses messes with one’s self-efficacy because of the drastic changes it makes to our lives. However, having high self-efficacy has been linked to better quality of life and less disability from illness, so it’s important for us to find ways to improve it. But how do we go about doing this?
I looked at a number of research studies to find some answers, because it is a good and important question. The studies were all from 2010-2021 and the illnesses included ranged from COPD to diabetes to people with multiple chronic illnesses. These are some of the ways to improve self-efficacy, which is directly linked to self-care ability, and you’re about to see why:
more physical activity – yes, this can be hard for people with chronic illness, which is why I recommend starting slow and building up, and working with appropriate professionals such as physiotherapists and personal trainers.
healthy eating – eating a nutritious diet can improve our ability to cope, but this can be a struggle if you’re not used to eating one, so take this slow, one meal at a time.
a lower emotional response to your illness – this is because of the mind-body connection (check out that podcast episode here). This can be accomplished with the help of a psychotherapist and by practicing things like meditations (like these).
having less perceived consequences from your illness – I think this is much more difficult to accomplish and can take much more time -change is slow! This will likely improve as other areas improve, and working with a whole team of healthcare professionals was helpful for me.
problem solving – our ability to problem solve is linked to self-efficacy in a variety of contexts. Working with appropriate healthcare and mental healthcare professionals on problem solving is a helpful way to learn to problem solve so that you can do more of it on your own in the future.
having more social support – build that network! I find that online support groups aren’t always the most helpful because sometimes it’s negative feeding negative, but if you find it is helpful for you then go with it. Also utilizing your family, friends, and any local peer supports you have is important.
having a good understanding of your illness – and this means not just the bad parts, the terrible outcomes, but also looking for success stories, as in people who have a good quality of life with your illness. The full range of human experience is important to consider. I call myself a realistic optimist.
having doctors who use person-centred communication – I’ll admit this can be hard to find, and if you have the ability to “shop around” for one that does use this then that might be a good idea. This type of communication includes fostering healing relationships, exchanging information, responding to emotions (yes, doctors should understand that you will have an emotional response to your illness), helping you manage your uncertainty about your illness, making decisions collaboratively, and enabling you to be able to self-manage your illness.
Cut to summer 2021 and my self-efficacy is high. I’ve traveled, both with others and by myself between 2017 and 2019. I exercise regularly, try to eat healthy, problem solve well, cope with my emotions, don’t perceive myself as having a disability, am always learning more about my illness, have a great support system, and while I don’t currently have a doctor because I’m going to be moving soon (for the last time for a while) I know that I can find one like the previous ones I had. I utilized a full team of healthcare professionals and took a lot of ownership over my own health in my journey the past 5 years. However, if you told me 5 years ago that I could get here, I probably wouldn’t have believed you. Change is slow. You can keep making the most of it though!
New (and much more refined) season of the podcast launched this week! Available everywhere you get them (here’s the web link!)
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I was doing a guided meditation through my meditation app (Calm) a few weeks ago and the concept of shinrin-yoku was introduced. This translates to forest bathing. I did a blog on nature therapy back in the summer I believe, and this kind of ties in with that, but I thought I’d like to explore this concept further because I find it really interesting. As someone who is not religious, and I usually say my spirituality revolves around the Force (for you fellow Star Wars fans), but in reality I find that immersing myself in nature can be a very spiritual experience. It can also be a very healing experience, more emotionally than physically (though depending on exactly how you are immersed it can be both).
The idea of shinrin-yoku or forest bathing, is to just be in nature. To come into contact with it in a mindful way, using your five senses. Anywhere there is a forest, you can do this practice. In a lot of ways it is similar to being mindful in other experiences. For example, if you take a mindful walk, even if you live in the city. The advantage of forest bathing is that you are removed from the hustle and bustle of city life, and can truly experience nature and its natural healing powers. I know this might sound a little woo-woo to some of you, but there is a lot of evidence for benefits to both our mental and physical health. Click this link for a study on how it can improve cardiovascular health. Not only can you do this practice in almost every country, you can do it in any weather (assuming you’re not opposed to certain weather).
Like I mentioned there have been shown to be benefits for mental health, and there are many nature therapists out there. Here’s a link to find them. Interestingly, that link also has another link to training in it for therapists so now I’m thinking that might be interesting for me to take. Of course, you can also just go and be in nature alone or with a friend. Looking back at my trip to Costa Rica, I realize that my friend Nikki (check out her podcast episode here) and I did a lot of this forest bathing there. Though there were times where we’d pull out of cameras and take pictures, or we’d chat as we hiked, there were many times where we’d just walk and experience nature (yes, using all five senses) in these amazing rainforests. That whole trip was extremely healing and amazing for me, but I didn’t realize until recently that (a) I was forest bathing for parts of it, and (b) that just being away from the city was so powerful for me (and this is coming from someone who LOVES big city life).
Here’s how to forest bathe:
go without technology, or at least, keep your phone/camera/etc out of reach (I have a small hiking backpack that is very useful for this)
you don’t have to have a purpose, the point is to just be. So walk, explore, enjoy.
take the time to really examine nature closely with your eyes
notice what the ground feels like beneath you as you walk, or even touch a tree and notice what that is like for you.
take some time to sit and listen to nature
also breathe it in, what does it smell like?
taste the air around you – likely it’s quite different than when you’re in the city
and try not to talk to anyone while you’re doing it
If you’ve done some forest bathing, I would love to hear your experience with it! Remember mindfulness leads to contacting the present moment, which has huge benefits on your overall health. Keep making the most of it everyone!