Video: Values-Based Activities – Music

Even when we are limited in what we can do (because of our illness or pain) we should still live by our values and take actions that we can. If you play an instrument, that might mean playing your instrument! Or if you’re unable to play at the moment, maybe it means listening to some music that you love. What can you do to live by your values?

This is just one way to keep making the most of it!

How Accurate Are Media Portrayals of Chronic Illness?

Chronic illness representation in the media has grown dramatically in the past 35 years, which is probably a good thing, because the more we talk about illnesses, the less stigma there is, and hopefully, the more research gets funded so that one day they may not have to be chronic (I know that’s probably way too big of a dream, but hey, gotta be at least somewhat optimistic). I think most of us can probably agree though, that many of these portrayals aren’t very good… or realistic. The main problem that I see, at least in the world of fiction, is that the stakes are always super high – it’s life or death – which isn’t the case for most of us living with chronic illness, at least not on a regular basis (and of course, it does depend what illness we are looking at). There’s also always some kind of unrealistic love story surrounding the illness, which from those I’ve talked to in real life, doesn’t seem to be the case for most people. But, we can probably forgive Hollywood because at the end of the day they’re a business trying to make money. So let’s dive into some, perhaps more accurate or partially accurate portrayals in the following categories: fictional film & tv, documentary film & tv, celebrities, and music.

Me in “Hell-A” (2018) – hopefully you get the reference to the Bran Van 3000 song.

Fictional Film & TV
This is where most of the problematic portrayals are, but there are some portrayals that are better. I’m not going to get into an extensive list, but just highlight a few. For TV, I would say Degrassi – and I don’t mean just the most recent iteration of this 30+ running show, but going back to the beginning. In Degrassi Junior High/Degrassi High (1987-1991), Caitlin was diagnosed with epilepsy, and LD had leukemia. The original series was extremely realistic in a lot of ways, which probably lent itself to doing these story lines well. A more recent version of the show apparently did a good job with a cystic fibrosis storyline.
Movies wise, I though Love and Other Drugs did a good job with a young person who had Parkinson’s, and Brain on Fire, took us through the journey of a young woman being diagnosed with a rare autoimmune disease. This movie was based on a true story. Of course, there are a number of other good portrayals out there, sometimes we just have to sift through the not-so-good ones first.

Caitlin (portrayed by Stacie Mystysin) on Degrassi Junior High.

Documentary Film & TV
This is a way better place to find accurate portrayals of chronic illness, because we’re actually following real people in their real lives (I do want to say that even in docs some things are contrived. I’ve worked on a few in my previous careers and we’ve had people change their clothes, or pick locations we should do things to help move the “story” along, but overall they are still more accurate than fiction). TV wise, I found a show (on Netflix I think) called Diagnosis, about a team of doctors diagnosing people with rare illnesses, that had been unable to be diagnosed by any other doctors. It was pretty cool (there was one girl who was ultimately diagnosed with somatic symptom disorder, which may be controversial for some of you, just a warning). Other docs that I liked include Gaga: Five Foot Two, which highlight Lady Gaga’s fibromyalgia; and Gleason, about former NFL-er Steve Gleason who was diagnosed with ALS in his early 30s.

Celebrities
I know a lot of people find it annoying when celebs talk about their illnesses, because at the end of the day, they have a ton of money and can usually afford amazing care and things that the rest of us can’t. Here’s why I like when celebs do talk about it: (1) it gets the convo going, (2) they often use their fame to help generate fundraising, and (3) it normalizes illness for people with and without illness. Some celebs who have done a good job in this arena are Michael J. Fox (Parkinson’s), Selma Blair (MS), Selena Gomez (Lupus), and Sarah Hyland (Kidney Dysplasia).

Music
This is the other category I would say is “highly accurate” because often the singer-songwriters are singing about their own personal experiences with their illness. Music is typically quite raw and real (some genres more so than other), and many of the songs about chronic illness feel honest. A couple we could highlight (and really there are a ton I could put here but I’m just going to pick a couple) are Believer by Imagine Dragons (about ankylosing spondylitis), Caves by Jack’s Mannequin (about leukemia), and Head Above Water by Avril Lavigne (about Lyme Disease).

What are some of your favourite portrayals of chronic illness in the media? Feel free to comment on the blog or tag me on Instagram @chronically.living_
Keep making the most of it!

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10 Ways to Improve Your Mental Health When You Have a Chronic Illness

When I was first diagnosed with a chronic illness, my mental health started to suffer. I actually tried to hide that, even from myself, but my anxiety increased over the first 7 or 8 months until I started seeing a therapist (and thus my journey to becoming a therapist began). The thing is, I’m not alone as far as my story with my chronic illness taking a toll on my mental health. Many, many chronic illness warriors have been through the same thing. So, if you’re reading this and you’re struggling, know that it is normal and it is okay to struggle. Also note that change is slow. I can give you these 10 ways to improve you mental health (as I did a few weeks ago with physical health) but you aren’t going to feel better overnight, or after the first time you do these. It takes repeated practice and effort on your part (I still practice all of these!). If you’re ready for that commitment then let’s get into it!

How’s your mental health right now?
  1. Support and Connection – this is pretty much the opposite of isolation, which is common with chronic illness, and mental health issues such as depression and anxiety. Support and connection can come in the form of joining formal support groups (which are likely still mostly online due to the pandemic, but may be in person depending on where you live), or informally by talking with your family and friends, or connecting with others in the Spoonie community via social media. As we’ve seen from the pandemic, isolation is not good for our mental health so do what you can to stay connected. Check out this podcast episode.

2. Mindfulness – I know this comes up a lot but there are many, many studies showing that this has powerful effects on both physical and mental health. It can be formal meditations, but it doesn’t have to be. Mindfulness can be fully engaging in an activity, such as mindful eating or mindful walking. If you’re present you’re unlikely to be ruminating about the past (depression) or worrying about the future (anxiety). Take a listen to this podcast.

Being mindful take practice.

3. Assemble your healthcare team – that includes someone to help you with your mental health. If you can’t afford to see someone in private practice, check out community settings. I’m currently doing my internship in a community setting, where our services are free. There is a bit of a longer wait time, and is usually brief/short-term service, but it is definitely a good option for many people. Check out this podcast on depression and this one on anxiety.

4. Use holistic approaches – what I’m talking about here are approaches that utilize the body-mind connection. If you’re lucky you can find several practitioners that do so. For me, my physiotherapist has a BA in psychology so she always takes a body-mind approach (podcast with her here), and I also saw a naturopath before I moved, which is all about the body-mind connection. They can give you more ideas for how to take care of your mental health and understand it interacts with your illness. This podcast is with my naturopath.

Make sure your healthcare team is able to help you with all aspects of your health.

5. Get moving – movement, of any type, is helpful not just for your physical health but for your mental health to. There have been studies to show that exercise decreases depression. Even if you’re not super mobile, going for a walk, doing some yin yoga, or taking up Tai Chi (podcast here) are good options to increase those endorphins and other neurotransmitters in your brain.

6. Connect with your values – who and what is important to you? If you can figure that out, then try to brainstorm some ways you can continue to live by your values, even with chronic illness. I’ll give you an example from my life. It is important to me to have adventures. Obviously travel is harder with a chronic illness, but it’s not impossible. So my friend and I (pre-pandemic) went on an “adventure vacation” to Costa Rica and for every “adventure day” we did a “rest day.” Honestly, it worked out super well, and we both felt more mentally and physically healthy that trip then we had in a long time. Check out this podcast.

Connecting with my values and doing what matters to me.

7. Do what matters – this ties into this above, connecting with your values. Once you have done the brainstorming, it’s important to do the things that matter to you. So for me, it was travel. It might also be spending more time with family and friends, or being creative. Doing the things (what therapists call behavioural activation) actually decreases depression (lots of evidence here). Check out this podcast for more.

8. Find an outlet – this might tie in to doing what matters for you. My main outlet is writing (probably no surprises here), but I have other ones too, such as playing the piano and colouring. I know a lot of people use art or photography or music or dance. It doesn’t necessarily have to be a creative outlet, but creativity can be useful, because a lot like exercise, it gets those helpful brain chemicals to increase.

Being in nature also matters to me and is an outlet as well.

9. Distance yourself from thoughts, feelings, sensations, etc. that are “hooking” you – what I mean by hooking, is the ones that pull you away from your values, the ones you can’t stop thinking about and make your anxiety/depression/etc worse. If you think of it like fishing, when you cast, and then hook a fish, you immediately start to reel it in, and the fish struggles, flopping around. This is what some thoughts, etc. can to do us – make us struggle and flop around, doing things that are unhelpful. By putting some distance between ourselves and them can help decrease their power (this includes physical sensations of chronic pain).

10. Acceptance – whoa I know this is a big one because no one really wants to accept that they have a chronic illness. And yet this might be the most powerful part of the list for Spoonies. Not just accepting that you have a chronic illness, but allowing your to sit in the physical sensations of pain (without getting “hooked” by them), and allowing yourself to sit in feelings of sadness and anxiousness, etc. These are all adaptive for us. They are part of our evolutionary history. They are here for a reason, and we can learn to allow them to be without it stopping us from doing what matters.

Acceptance can feel peaceful.

I’m sure I’ve given you a lot to think about, so that’s all from me for this week. Keep on making the most of it!

And don’t forget, the self-care challenge starts for premium members on April 24. If you haven’t signed up yet, it’s just $5 CDN for 4 weeks of posts and check-in around self-care!

All the Cozy Things for Fall & Winter

This is a self-care type of post I supposed but in the past week of not being able to do much, I’ve been thinking about how, even during a pandemic, there are amazing, cozy, self-care activities… well, activities in general… we can do inside and at-home during the winter. I live in Canada, so winters are already long, and yesterday I watched a news report where experts said the “darkest” months for Covid will be January-March so I guess we should be prepared for the continuation of strict measures.

Image from: http://www.ottawafamilyliving.com/cozy-home-cozy-life-preparations-winter/

Let’s start off with some of my favourite things to wear. Pyjamas – because as spoonies we can’t have enough of these – and especially cozy ones like fleece or flannel. Who doesn’t want to lounge around in PJs all day, especially when it’s cold and gloomy outside. Sweaters are another one. Big, comfy, cozy sweaters. And for the holiday season, Ugly Christmas Sweaters (I have three Star Wars ones… I don’t think they’re ugly though!). Sweaters can also just make you feel warm and relaxed – at least I think so! Finally, slipping on some of those fuzzy socks, or a nice pair of slippers (my feet always get cold first… also I can’t get on socks at the moment because of my surgery, so I’m looking forward to 5 weeks from now when I can properly dress myself again).

New fall/winter sweater I ordered online.

Part 2: Delicious Drinks. Hot chocolate, coffee, and tea. All of these just feel warm and wintery. I maybe have hot chocolate once a year because it’s way too sweet. What I do like are some of Starbucks’ holiday drinks like the peppermint mocha (half sweet though) because it gives that combo of hot chocolate and coffee (best of both worlds)! Though if you have any local coffee places that make something similar, I definitely encourage you to support them instead! Or if you don’t want to go out, there are tons of recipes online to make them at home! Teas are all great. Usually in the winter I end up preferring black tea over coffee at some point and switch over in the mornings. I also love herbal teas. Peppermint tea is another great wintery classic.

Image (and recipe) from: https://bakingmischief.com/peppermint-mocha/

Finally, being creative. Baking, doing crafts, decorating your house, playing music, reading, and even some throw backs like playing board and card games (instead of video games) and doing puzzles can be great ways to get through the extra in door time. Varying up the routine to prevent boredom is essential (my parents used to tell us that “if you’re bored, you must be boring.”). These things all have a cozy, wintery feel to them (yes they can all be done throughout the year) and maybe that’s just some nostalgia from memories of growing up in a snow-infested, bitter-cold province.

Image (and recipes) from: https://www.chatelaine.com/food/kitchen-tips/baking-perfect-christmas-cookies/

I think my point here, is that we can help our health and our mental health by thinking outside of the box and making ourselves feel good with the little things. Because sometimes little things can have big impacts. Keep making the most of it, folks!

Mindfulness: Music Meditation

Something a little different this week. We’re going to meditate to classical music. Staying present and mindful, see what you notice, how you feel, and just let yourself stay with the music. Music has many of the same benefits as meditation does, regardless of genre. Combining the two seemed like a natural thing to do.

For those who would like to know the first song if Fur Elise (WoO 59) by Ludwig van Beethoven. The second song is Tarantella (from Studies, Op. 100, No. 20) by Johann Friedrich Burgmuller.

For more on the benefits of music for mental health, check out the episode of Chronically Living – Collecting Chronic Illnesses – where my guest performs for us, and also explains the powerful effects of music on the mind and body. Link to Apple Podcasts below. It’s also available on Spotify and everywhere else you get your podcasts. If you like Marisa’s performance, then give us both a shoutout in the reviews!

https://podcasts.apple.com/ca/podcast/chronically-living-and-how-to-make-the-most-of-it/id1521945719?i=1000493598325

Summertime Self-Care

Every time I say the word summertime I start singing: “Summertime and the livin’ is easy.” I think it’s from playing it in high school jazz band many moons ago, and actually when I pulled my sax out in the spring it was an easy song to get back into and play. Yes, here in Canada we are already half way through summer because let’s face it, summer is June, July, August, and if we’re lucky, September. That doesn’t mean we should talk about some summer-related self-care we are all hopefully engaging in, and if not, then it’s not too late to start!

IMG_7450Hot town, summer in the city.

Obviously this year is a bit different due to the pandemic which is spiking and second waving in certain parts of the world, while other parts (ahem USA) haven’t finished their first wave yet. But there are still some activities I’ve found to do this summer that have been great for my body, mind, and spirit – three important aspects of self-care. Personally, I think spending as much time as possible outside is really important for my mental health. If you live anywhere that gets a long, cold winter (Canada, northern US, Russia, Scandinavia, etc) then you understand how much needed the summer sun is. Whether it’s sitting in your back (or front) yard, on your porch, your balcony (apartment dwellers), a bench in a park, or wherever, getting outside for at least an hour a day can make you feel a lot better. And many other favourite self-care activities can be done outside – meditation, yoga, reading, etc.

IMG_7827Backyard chillaxin’ with Spike!

If you’re looking for something a little more physical, I’ve talked about hiking and kayaking, but really any outdoor sport you’re capable of doing is great, even just going for a walk. If it’s safe to do so, having dinner or a drink with a friend on a patio (social distanced of course) can be a good way to get some social self-care in, which many of us weren’t able to do (other than Zoom) during self-isolation. So if you’re in a place that is a little more open and not currently spiking, and you’re safe to do so, getting out with a friend or two might be a good idea.

IMG_7671I always aim to get a little movement in!

Whatever you decide to do for summertime self-care, just make sure you’re staying safe, wearing a mask, and continuing to social distance until the medical professionals tell us it’s safe to do otherwise. Yes, this year is different, but that doesn’t mean we shouldn’t still be taking care of ourselves.