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!
Month: October 2022
Navigating Halloween with Chronic Illness
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!
Video: Daily Mindfulness – 5 Day Meditation Challenge
More challenges coming soon
Meditation has been shown to help a lot with physical health and mental health. It can help with pain, anxiety, depression, ADHD, and more. It’s also difficult for most of us to get into a meditation habit. That’s why I created this 30 day challenge where we only practice for 5 minutes each day (and if you miss a day, that’s also okay). I’d love to hear how it goes for you and what you notice by the end. Full playlist here.
Just another way we can keep making the most of it!
My Favourite Self-Compassion Practices
We all struggle with self-compassion. I’ve written about it before on this blog, talked about it on the podcast, written guests posts on other blogs about it. I do self-compassion work all the time with my clients. And most importantly, I do self-compassion work all the time with myself. Self-compassion has been shown to lessen chronic pain, improve resilience, and keep us motivated – all of which are important when you have a chronic health condition. It can also help when experiencing trauma symptoms, anxiety, and depression. Being honest, while my pain is much, much less than it used to be, self-compassion has and continues to help me deal with it. More recently I’ve noticed the great effect it has for me during trauma triggers and anxiety. Self-compassion is also hard – at first – eventually it becomes a lot easier and more natural to do (though there is always effort to be put in). When I notice (using my mindfulness skills), I’m able to pause and ask myself what would be helpful now. More often than not I end up doing a self-compassion practice, which helps me regulate, centre, and continue on with my day.
There are tons of different self-compassion practices you can do. I do highly recommend the Mindful Self-Compassion Workbook by Kristin Neff and Christopher Germer. I bought it, used in on myself, and now use the exercises with my clients. Beyond the ones from the workbook, I have some other practices that I quite enjoy, use often, and really help. Without further ado, here are my 4 favourite self-compassion practices.
- Lovingkindness Meditation – this is actually a really old Buddhist practice that is used secularly now. It involves generating feelings of warmth and kindness towards ourselves and others (typically someone we care about, someone we feel neutral about, a difficult person, and everyone). We then repeat lovingkindness phrases, sending them first to ourselves, and then to each of the others. The reason I like this practice is because it is easier to send compassion to other people, and we still get to practice giving it to ourselves.
Typical lovingkindness phrases include:
May I be happy.
May I be safe.
My I be healthy.
May I be at peace.
But can include any phrases that resonate best with you.
Try it here. - Kind Hand – this is a practice I actually learned from a counselling textbook (ACT Made Simple) and find I use it a lot with myself because it’s such an easy gesture and quick way to offer myself compassion. (My clients tend to like it too). Basically you imagine your hand filling with the same kindness and care you offer others, and then place it on the part of your body you feel the most pain (emotional or physical) and let the kindness flow into it and then all around your body.
Try it here. - Heart Opening Yoga – this is working with the heart chakra, which helps with self-compassion and self-love. I’ve done this both as a vinyasa class and a yin class (I personally prefer the yin class, especially when I’m feeling anxious/activated because it’s more grounding). This usually includes a lot of chest openers, expansions and back bends to help us make room in the physical, emotional and spiritual bodies for compassion.
I personally recommend Yoga with Kassandra on YouTube for some great practices (I’ll be launching my own as soon as I finish my Yoga Teacher Training). - Compassionate letter writing or journalling – if you’re open to writing and/or like journalling, this can be a very effective practice. My former therapist had me do this once and I did find it helped (and of course, I’ve had my own clients do this as well). It can be quite difficult if you’re not used to giving yourself compassion, so I actually recommend trying any of the above 3 practices first. The formula for the letter is pretty simple:
-mindfully write what happened – being open, curious, and nonjudgmental about your experience, thoughts and feelings (who, what, when, where, maybe why).
-write some words connecting yourself to common humanity – we all experience pain, hurt, emotions, etc. and telling ourselves something like, “everyone feels this way sometimes” (etc) can help us remember that we are not alone.
-write something kind to yourself – imagine what you would say to a friend who was struggling. What kinds words would you offer? Just write those down, offering them to yourself.
Try it here.
Self-compassion is a powerful and useful practice. The more I integrate it into my life, the easier my life becomes. And of course I want the same for all of you, so that you can keep making the most of it!
Video: Cooking with Kels – Baking Substitutions for Physical & Mental Health
I love baking and cookies and rarely every do it. However, when I do I’ve found that it’s easier and easier for me to learn to modify recipes so that they more-or-less fit into the lifestyle changes I’ve made when it comes to food and nutrition (trying to be as anti-inflammatory as possible). While it does take some extra effort, I’ve found it’s worth it.
Here’s the recipe: https://thesoccermomblog.com/halloween-cookies/
Just another way we can keep on making the most of it!
My Top Resources for Chronic Pain & Personal Growth
Let’s face it, there are a lot of websites, books, podcasts, etc. out there that are resources for both chronic pain and/or personal growth. So many, that it’s hard to sort through to find the good ones. I have been on a personal growth journey for several years, and that journey started just over a year after my UCTD/fibro diagnoses. So for me, they are fairly tied together. While I recognize that is not going to be the same for everyone, I just want to show that it is possible to learn to cope with chronic pain and engage in personal growth and development at the same time. Which is a little different that say Maslow’s Hierarchy of needs, which states that basic needs – such as safety and health (I think chronic pain falls under these subcategories) need to be met before achieving self-actualization. If anything, it seems to align more with some schools of existentialism, like that of Viktor Frankl, who could find meaning even while living in a concentration camp (basic needs not being met).
All that said, here are some of my favourite resources for chronic pain and personal growth:
Websites
A Chronic Voice (blog) – I’ve actually guest-posted on this blog. Sheryl does an amazing job with blog and has a ton of informative and helpful articles and posts.
The Pain Toolkit (website) – Pete Moore is a person with lived experience who presented at the World Pain Summit that I attended in October 2021. His pain toolkits, workshops, and other resources are comprehensive and impressive.
Tiny Buddha (website) – This website probably falls under the “personal growth” category but because there is a ton of evidence of mindfulness helping improve the lives of those with chronic pain, you may find it beneficial as well.
Books
When the Body Says No – this book by Gabor Mate (MD) is quite informative about chronic pain itself, and includes real life stories about his patients over the years. It can be helpful for shifting perspective and gaining understanding of all of the biopsychosocial factors that affect pain and illness.
Full Catastrophe Living – Jon Kabat-Zinn (MD) writes about his mindfulness-based stress reduction program, research that supports it, and how it (and mindfulness more generally) helps with both physical and mental health. Definitely a read if you’re interested in mindfulness already.
Tuesdays with Morrie – this classic book takes us through several Tuesdays that author Mitch Albom spends with his former university professor, Morrie Schwartz, who is dying of ALS. It offers a lot of wise advice and can help with outlook and perspective in living with illness.
Podcasts
Admittedly I don’t listen to a ton of chronic illness/pain podcasts, but these are some with great overlap.
Unf*ck Your Brain – hosted by life coach Kara Loewentheil who has chronic pain and offers advice and coaching on a variety of topics. She includes a feminist perspective and some cognitive-behavioural inspired techniques.
Therapy Chat – designed for both therapists (and hosted by a therapist) and anyone interested in mental health, there are a ton of episodes on chronic pain because of the overlap of pain/illness and trauma (the hosts’ specialty is trauma). Not a substitute for therapy, but definitely a resource for psychoed.
The Happiness Lab – I think this is just a fantastic podcast for anyone because we all have misperceptions about what will make us happy, and we can learn a lot about what will actually make us happy from Harvard Psychology professor Laurie Santos and her guests.
YouTube
Okay, I’m actually just going to plug my own content here – don’t hate me for it.
Kelsey L Harris Meditations – I offer a ton of mindfulness and meditative-type exercises, many of them that work great with chronic pain, and most based on Acceptance and Commitment Therapy which has been shown to be helpful for chronic pain.
Aligning Mindfully – my other meditation channel which include a 5 minute meditation challenge (with more meditations and challenges coming soon!).
I hope you all find these resources helpful! If you have any others that you think should be on the list, please comment so I can check them out as well! Keep making the most of it!
Video: Daily Mindfulness – Compassion with Equanimity
This practice is particularly good for anyone finding themselves in a caregiving role. This may be as a healthcare practitioner, doctor, nurse, or as someone taking care of an elderly parent, a partner or child who is chronically ill, or really any other caregiving role. Sometimes the best thing we can do is offer compassion to another, while also taking care of ourselves.
Keep making the most of it!
Myths & Misconceptions about Glaucoma
The one chronic illness diagnosis I seem to talk about the least is glaucoma, yet this is the first one I was diagnosed with. I remember getting the diagnosis and being quite upset. Why? Because I was only 29 at the time. Both of my parents have glaucoma, and it runs on both sides of my family. My siblings and I have literally been tested for it yearly with our annual eye checkups since we were children (I am also the only one of my siblings that currently has glaucoma). Usually when I do mention that I have glaucoma a number of misconceptions come up for people. So, with some research, I thought maybe I could address those now.
But first, what is glaucoma? Glaucoma is a degenerative eye disease that causes damage to the optic nerve, which is required for good vision. Usually this is due to high eye pressure.
Now on to 5 myths & misconceptions about gluacoma!
- Glaucoma is only found in old people – so people are usually quite surprised when I tell them that I have glaucoma, and how young I was when I was diagnosed. The truth is that even babies can get glaucoma, and it can occur at any age (thus why I was tested since I was young). It does commonly run in families (often hereditary, but not always), and nearsightedness increases the risk of glaucoma (my current ophthalmologist told me I’m “extremely nearsighted” – this is true lol).
- If you have perfect vision, you can’t get glaucoma – not relevant to me, since I’ve wrn glasses since I was 8, and as I mentioned I am extremely nearsighted. However, upon doing some research for this post, I have learned that it doesn’t matter how your vision is. Glaucoma is known as the “silent thief” because there are no symptoms for early glaucoma. Due to that, it’s important for everyone to at least get a regular eye test (yearly) and definitely talk to your eye doctor about glaucoma.
- You will definitely have high eye pressure – I actually haven’t had high eye pressure since I was 29 (after a few treatments it’s been relatively stable). It’s still maybe slightly higher than most people’s but it’s very manageable. Apparently there are 2 types of glaucoma, when you have normal-tension glaucoma, you don’t have elevated eye pressure at all (perhaps another reason it’s called the “silent thief” as one of the main tests for glaucoma is to check eye pressure).
- Glaucoma always causes eye pain – I have actually never had eye pain from my glaucoma. To my knowledge neither have my parents (whose glaucoma is much more advanced than mine) – though I could be wrong so don’t quote me. While glaucoma can cause eye pain, symptoms do often vary from person to person so it’s not a guarantee.
- You will become blind – So my paternal grandmother did actually become blind from glaucoma (by the time she was in her late 80s – though she had poor eyesight for longer). Treatments, however, are much much better now. And according to ophthalmology associations, it doesn’t lead to vision loss for most people any more, especially those with “moderate” glaucoma (which I have a feeling I fall into this camp). Proper eye care (regular doctor visits) and treatment is important in preventing the disease from becoming worse.
So while glaucoma is definitely not fun and can have some not-so-great consequences, for most people – when they take care of their eyes – it’s not the worst diagnosis. For the most part I actually forget I have it. I hope this helps to clear up some myths and also, I hope this normalizes glaucoma for any other “young” glaucoma warriors out there! Keep making the most of it everyone!
Video: Values-Based Activities – Gardening
Another values-based activity that can be done with low energy is gardening. I’ll admit I have never really been into gardening but after keeping my flower alive (and I mean, also bringing it back to life during the heat waves this summer), I’m inspired to have more of a garden going forward.
Let’s keep making the most of it!
Chronically Living 