If you haven’t heard of Spoon theory, it’s definitely a great metaphor for chronic pain and illness. It can help you understand yourself better, and prepare to do helpful things like pacing. It can also serve as a great way to educate your friends and family on what it’s like to have a chronic illness or pain so that they can understand and support you better.
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!
Enjoy Halloween but don’t have a lot of Spoons this year? That’s okay, because this week I’m taking us through how to have a fun Halloween regardless of how much energy you have (and of course, I’m also talking about pacing!). Hope this helps you to keep making the most of it!
I LOVE Halloween. I literally call October Halloween month (despite the fact that in Canada we also celebrate Thanksgiving in October). And while I’m in remission right now, I have had several Halloweens (including last year) when I wasn’t. Yet I’ve always managed to have a blast on my favourite holiday! For this post, I thought I’d chronicle my last several Halloweens, and then follow that with some tips for enjoying this particular holiday when you have chronic illness/pain.
2015 – Pre-diagnosis but pain was existent – I was in a new relationship at the time (technically we weren’t even official at that point). Since I did not know better I celebrate “as normal” – big street party, dressed up (Alice from Resident Evil). Paid for it the next day. 2016 – After initial diagnosis (lupus, fibro), still in lots of pain – I did a cool haunted house attraction with a friend a few days before Halloween. It was a fairly slow walk through, so totally manageable. She also knew about my illness and was accommodating. Halloween itself was quite chill, I dressed as a Jedi (including at work) and then my dog and I watched horror movies in the evening. 2017 – After actual diagnosis (UCTD, fibro), still in lots of pain – leading up to Halloween I actually did a lot of stuff. Rocky Horror Picture Show screening with a friend (we both dressed up). Haunted house attraction with coworkers. Dressed up for work (Casey Becker from Scream) and did the street party. However, everything was paced out and I made sure I had “recovery time” the next day. 2018 – slightly less pain – I did a solo trip to LA mid-October for the purpose of going to Universal Studio’s Halloween horror nights (and of course I did a bunch of other stuff while in LA). Also in October my friend and I did the Rocky Horror Picture Show screening again (dressed up again). Halloween itself was the street party (dressed up as Elle from Kill Bill). Again, paced and did things with people who were more than willing to help accommodate my needs (or by myself and I knew how to accommodate for myself). 2019 – slightly less pain again, last Halloween before the pandemic – October included pumpkin patch day and pumpkin carving with a friend, annual Rocky Horror screening with another friend, Halloween Jack & Jill (wedding fundraiser) with friends (I dressed up as Ellie Sattler from Jurassic Park – and my friend was Alan Grant). On Halloween itself I did a haunted walking tour with a friend. Paced. Helpful friends. 2020 – less pain again, pandemic Halloween – Again, I did a pumpkin patch, followed by pumpkin carving with a friend. Dressed up as Buffy the Vampire Slayer and had a horror movie night in on Halloween. 2021 – less pain again, literally finished moving – I was actually exhausted last Halloween. I had moved across the province (after moving across the country 10 months earlier). Moving + unpacking my new place. I wore my Hocus Pocus sweatshirt and had a horror movie night in while Skyping with a friend from Toronto. Definitely not paced and not enough Halloween in my opinion, but there was no way around that one.
From all of those experiences, here’s what I learned:
Pace yourself – spread out activities, allow for “recovery time,” and only go at speeds you’re comfortable with. If you need to take breaks in the middle of activities, take them. It will be more fun if you’re feeling okay.
Go with your support system – I have only done things with friends who are supportive and understanding. They are willing to pace, accommodate, and be helpful when needed.
Wear a comfortable costume – admittedly not all of my costumes were, but I learned as I went. Definitely avoided high heels (other than for Rocky Horror, but my friend was helpful and I eventually learned to bring a change of shoes). Cool costumes are great, and I’m known for being able to inexpensively assemble a wicked costume, however, if they aren’t comfortable or accessible, you’ll have less fun.
Mostly, if you enjoy Halloween, then do as many of the Halloween things as you can! All in the effort to keep making the most of it!
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.
There is a Taoist parable that tells of an old man who fell into a river that swept him toward a dangerous waterfall. There were people watching who feared for the old man’s life. By some miracle, the old man came out of the water at the bottom of the falls completely unharmed. The onlookers asked him how he managed to survive, and he replied, “I accommodated myself to the water, not the water to me. Without thinking, I allowed myself to be shaped by it. Plunging into the swirl, I came out with the swirl. This is how I survived.”
If the old man had struggled against the water, he may not have survived the fall. At least that’s how he sees it and is what the parable is suggesting. This is non-contention. I came across the parable when I was… well if you read this blog regularly then you can probably guess it… meditating. I was doing a guided meditation and at the end, the meditation teacher told this parable. It really spoke to me because I have heard this idea spoken in many different ways already, and it’s something I have been practicing for sometime. I notice that in my day-to-day life, when I am swept up by my pain or symptoms of my illness or thoughts about my pain or emotions such as anxiety that arise, when I struggle with these things, it just makes the day worse. It makes the pain (physical and emotional worse) and I feel less resilient. When I do the opposite – accommodate – then my days are pretty good. Thankfully I’ve gotten good at accommodating.
While I’m sure some of you are also good at accommodating, there are probably many of you who are not. It takes a lot of work and practice to be able to do this. It’s way more natural for our minds to struggle because our minds think that it’s the best way to survive – I mean, thousands of years of evolution have told them this. Yet in modern times, the struggle often ends up being less helpful (but try telling that to the primitive part of your brain). I find that meditating is helpful for accommodation but I totally get that it’s not for everyone. I also find similar mindful practices like body scans, observing-breathing into-making room for-and allowing my feelings to also be helpful. And engaging in those values-based behaviours that I love. That doesn’t mean I push through my inner experiences. There is a delicate balance between pacing and going to my edge. And on days that I go to far and do too much, I offer myself some compassion because it is hard to be human, and it is hard to be a human with a chronic condition.
So, here’s what I suggest:
try out some mindfulness practices, like the ones found on my YouTube channel
incorporate more self-compassion into your life: kind words, soothing touching, remembering that it is human to have pain
engage in values-based activities that allow you to pace and don’t take you past your edge
seek mental health (and physical health) help from a licensed professional as often as needed.
Let’s face it, we all stress through the holidays. It’s rarely an “easy” time of year for anyone. Over the years I have spent many holidays working in retail; I have had to share time between families (back when I was married); I’ve had to spend some Christmases all alone. And then there’s all the things we normally have to do like cook, and clean, and buy gifts (sometimes with limited money) and almost always with limited spoons (for those of you who use Spoon Theory). How can we be expected to manage all of this? And many of you may not handle it well. So, here’s what I’ve learned.
The most important thing to do is PACING. For those of you unfamiliar with my blog post on Pacing earlier this month, it basically comes down to doing the same amount of activity every day (so no over-exerting) regardless of how you feel. What usually happens, especially at this time of year, is we have a good day so we go ham and do as much as possible on that day (cooking, cleaning, etc) and then we end up not being able to do anything for day(s) after. If we do just 1 activity on that “good” day and then also do just 1 activity the next day, regardless if we feel better, the same, or a little worse, we will more easily avoid a string of “bad” days.
The other most important thing is setting boundaries. Who says YOU have to host dinner? If you do host dinner, then maybe you don’t need to be the one to cook (can everyone bring a dish?) or clean by yourself (if you have a partner, can they help with the cleaning and prep). When shopping for presents, have you done it online? If you do have to go to the store, just use that as your 1 activity for the day (and wrapping the presents being an activity for another day). Tell your support system what you can do, and what you need help with. Stand up for yourself and don’t let them bully you.
If you don’t have a strong support system, which I know sometimes happens, then again, revert back to pacing, and say NO if you can’t do something (again, this could be hosting dinner, cleaning, etc), and see what other help you can get. Maybe there’s a neighbour or friend you can pay to help you cook or clean (that way it’s less expensive then hiring a professional). We need to use some flexible thinking and get outside the box.
The holidays are stressful, so we need to do what we can to manage our stress levels and take care of ourselves, while still living by our values (and hey, self-care may be one of your values). Have a Happy Holidays and keep making the most of it!
If you’re thinking about exercising to help with your chronic pain or overall health, it is important to consider two things: (1) pacing – so that you don’t over exert yourself one day and pay for it the next; and (2) action planning or goal setting so that exercise is realistic for you. Also, remember to always talk to your healthcare team before starting any new exercise routine! If you’re having thoughts about your ability to exercise that are causing you distress, check out this podcast episode.
When I moved across the province at the end of October, I did NOT do a good job pacing myself. Granted I had help for the physical moving but not the packing or unpacking or the putting together of furniture – that was all on me. I started out with the best intentions. I actually started packing by pacing. It was more the last minute stuff, the physically carrying items in the truck, and then everything after that was a disaster. And of course, that caused a flare (luckily it only lasted a week or so). However, that’s not what I normally do. Normally I pace myself, which is part of the reason why I can consistently be as active as I am.
What is pacing? Pacing is doing the same amount of activity everyday – whether it’s a “good” day or “bad” day. Now, this doesn’t mean you’re not listening to your body. There are of course days that Chronic Illness Warriors are going to need more rest. What it does mean is not over-exerting yourself on the good days and therefore creating more bad days. For example, I go for a walk everyday. It’s about an hour long. Even on days where I feel a bit more tired, I get my walk in. I also try to do some yin yoga everyday. It’s definitely movement that is easy to get in on days I don’t feel as good, because it is slower movements and stretching. But let’s say that I didn’t go for a walk today. Maybe I cleaned the house and did laundry instead. It’s about the same amount of activity – and maybe it’s more necessary or I have the thought that it’s more reasonable, depending on how I feel. Get what I mean?
There is A LOT of evidence that pacing works. Not just for me, but from other chronic pain and illness warriors. I’ve interviewed a ton of people on my podcast and have noticed that many of them use pacing. I attended the World Pain Summit earlier in the fall and 2 of the presenters, who were both people with lived experience (not healthcare professionals) talked about pacing and how it’s helped them. Heck even look at these search results on Google Scholar and you can see all the academic journal articles written on the subject. Pacing works – even with fatigue.
But how do you figure out what your pace is? Here are some key suggestions when it comes to pacing:
Plan your day. We all have an idea of how we’re feeling when we get up in the morning, so having a plan of what sounds manageable for the day is a good place to start.
Break up your activities and alternate at rest. For example, if you decide to clean the house, just do 1 room at a time and take a short break (30 minutes) in between.
Prioritizing your activities. I align this with Values-Based Living. What is most important for me to do today? Why is it important? For me, my health is important (yes, even having a chronic illness) so doing some kind of movement that will keep me active and ultimately decrease pain (I’ve done many posts on movement for pain management) is essential.
Even if you’re having thoughts that pacing seems impossible, just note that those are just thoughts. There are many people who can help you get started with pacing (occupational therapists, psychotherapists/counsellors, physical therapists, etc.) and the whole point is to improve your well-being so you can keep making the most of it!