Video: Yin Yoga for Hips (mini class)

In this 25 minute mini yoga class, I take you through a sequence of hip openers, which have helped me with my hip pain (and anxiety) over the past several years.

I hope this helps you to keep making the most of it!

How to Discuss Chronic Pain/Illness with a New Partner

For this post I really wanted to draw upon my personal experience. From October 2016 to August 2022 I was single. Yep, six years. A lot of dating, some friends with benefits (though there was a 2+ year period starting before the pandemic and lasting until last year that I did not have sex outside of masturbation). Wow, this topic got personal fast, I hope you’re all in for the ride. In August of 2022 I met my current partner and we have an amazing relationship that continues to grow. Something I struggled with while dating many people over the past several years was when and how to tell them about my pain and diagnoses and what that would mean for the relationship.

My partner and I took a trip in November to a cabin on an island and spent the entire time building emotional intimacy, including talking more about my illness and pain.

I’ve had conflicting opinions about this. I have done everything from reveal it on a first date so that if it was an issue at least we didn’t have to go on subsequent dates, to not revealing it at all over 4 or so dates and then never having the relationship develop anyway. Plus whatever is in between. I’ve also read other peoples’ opinions and even found a study on the subject of chronic pain/illness and dating and disclosure. From what I’ve figured out is that the timing and your particular reasons for it may not matter. We know ourselves and what we’re looking for, best. In this relationship I mentioned it maybe 4 or 5 dates in. We were starting to create a bit of emotional intimacy so I let myself have the first of many moment of vulnerability, and honestly I think it helped deepen the relationship, allowing both of us to take opportunities to continue to be vulnerable with each other. This kind of vulnerability is a requirement for emotional intimacy.

How did I do it? You might be wondering. The first time I mentioned it, I did so fairly casually. I can’t remember the exact conversation we were having, but I mentioned that I had chronic pain. In a conversation on a subsequent date I revealed a bit more about the pain and my illness diagnoses. Again, more in conversation, not in some kind of grandiose we need to have a big discussion kind of way. However, what I did that I think was particularly important and helpful was open it up to being more of a conversation by asking her if she had any questions and letting her know if she does she can always ask. She has asked questions along the way and I’ve always been open with answering them. And I’ve been open with communicating how I’m doing (physically and emotionally) as well. My hip hurts during a walk, I mentioned we need to walk slower because it hurts (we are typically both very fast walkers so it’s also kind of obvious when I’m in pain).

My tips:

  1. Be open and honest – this may mean having a big sit-down conversation or it may be a more casual approach like I took, either way, it takes some courage and vulnerability.
  2. Invite your partner into the conversation – make sure they know they can ask questions and you’ll try to answer them to the best of your ability.
  3. Ask them what their concerns are and thank them for their vulnerability as you navigate it together. Sometimes you’ll be able to put their mind at ease, sometimes they’ll be able to put your at ease, and sometimes you might agree to figure it out as you go.

It takes a lot of trust, emotional intimacy, and vulnerability to have this type of conversation. If you want to deepen the relationship, and create more intimacy, I believe this is a necessary step for anyone with a chronic illness or chronic pain. Though we may have beliefs that there is no one out there for us (I had a previous partner put that belief into my head for quite awhile), if we are open to some of the uncomfortableness that may come with dating, we can also find a partner who is the right fit for us.

I hope this helps you to keep making the most of it in your dating and relationships.

Video: Why Are You Using So Many Bandaids for Your Pain?

We all use “bandaids” in the forms of distraction and avoidance of our difficult thoughts and feelings (emotional and physical) and we often wonder why it only works as a short-term solution and never fixes anything. Then we get frustrated and keep using them, using all that precious warrior energy… is there a better way?

I hope this helps you to keep making the most of it!

How to Have Fun Indoors

Whether you’re stuck inside because of terrible winter weather (I’m looking at you rainy Vancouver), or because of your illness/pain, having some indoor activities that bring enjoyment are essential. There are literally hundreds of activities that you or I could name. Lists can come up on the internet. Rather than just randomly pull from a thousand sources I thought I’d share some of my favourite indoor activities – some for when I’m feeling great but am literally stuck inside because of the weather, and others that I do when my physical (or mental) health isn’t as great.

Cooking with my family over the holidays was tons of fun!

Solo Activities

Watching TV – standard I know but I actually enjoy watching some streaming – be it television or movies – alone. This can also be a good partner/group activity (I even have one friend I do it with over Skype every week). I thought I’d put it on the list and get it out of the way. Finding something I love to watch (new or old) can always put a smile on my face.

Playing an instrument (or listening to music) – I play the piano. I have since I was a kid and I absolutely love just sitting down to play for no one but me. It brings me great joy, and if I want, a challenge. It’s an indoor activity all about the me and the music. If you don’t play and instrument then listening to music (maybe even dancing along or singing along) is a great alternative.

Color or do some art – I’m not a good artist in that I can’t draw or paint or sculpt (but if you do then those are amazing indoor activities). I do enjoy colouring though. I tend to buy horror-themed colouring books because that’s my jam, and colouring in general has been shown to help with relaxation.

Read (and take a bath) – I personally prefer to read in the bathtub. I can read anywhere and I will read anywhere but my absolute favourite spot is when I’m in the bath. The bath itself helps with my physical body and is relaxing. Reading is fun and/or stimulating (depending on what I’m reading) and just another indoor activity that I look forward to doing.

Group Activities

Board Games (or card games) – this is the one that has been introduced to me the most in the past few months (mostly because my partner loves board games). I grew up playing Crib and it’s my go-to game (in general) but playing any game in a group or with a partner is a great way to spend some time indoors.

Cooking (or baking) – this is just so much more fun with another person (hopefully someone you get along well with). I’d much rather do it as a group activity than a solo activity any day and seeing how our creations turn out is just another fun part of the experience. We also tend to throw on some music and have a kitchen dance party in the middle of it all.

So these are just a few of my favourite indoor activities. I would love to hear what yours are as well. Keep making the most of it!

Video: Daily Mindfulness – Clouds in the Sky

One way to create distance between us and our thoughts is to help move them along (which in turn changes the way we perceive our thoughts) so that we don’t get hooked by them. This is done through a visualization, imagining you are looking up at the clouds drifting by and you can just place your thoughts onto them.

Keep making the most of it everyone!

Top Post of All Time (So Far): The Feeling of Frustration When New Symptoms Appear

This post was back from February of 2018. I was recently looking at some stats for this blog over time and I was actually a bit surprised this was the top post as I knew there were several others that I’ve noticed get a lot of hits. That being said, maybe it’s not surprising because many of us with chronic illness – diagnosed or undiagnosed, and regardless of our current health status – often deal with new symptoms. So here’s a repost of that post. No, extra commentary added (as it’s also interesting to just see where I was at physically and mentally at that time).

Me in February of 2018, the month and year this original post was written.

I’ll admit that I’ve been pretty lucky in the sense that my symptoms have remained the same over the past few years. Chronic, widespread pain (joints, muscles, nerves) and fatigue (yes I like to be in bed by 9:30 at the latest, though I do try to get up early). The catch-22 is that it’s hard for any official diagnosis to be made when new symptoms aren’t popping up… that leaves the question, is it better when they do?

I’m a sun bunny. Which is not good if I really do have lupus. AVOID THE SUN! Is what is preached as it exacerbates symptoms and can lead to rashes. I spent all of last summer, and the summer before out in the sun, just here in Toronto, but still. Too much sun and yes my joints maybe hurt a bit, but literally only if I was lying on the beach. If it was combined with some sort of exercise, then not so much. Fast forward to last week, which I spent in Arizona. Above average temperatures all week lead me to hiking, swimming, the hot tub, and patio lounging. All of my favourite things. Oh yeah, and it lead me to these little tiny white bumps on both my hands – a sun rash.

And while the optimistic part of me took a picture so I could show my rheumatologist (my next appointment isn’t until May). Maybe they can officially say it’s this or that! The realistic part of me says “oh fuck, now I can’t go out in the sun.” Segue grumpy face. I don’t want to wear long sleeves, as was suggested to me on Instagram when I posted a picture of my hands (also not sure how I’m supposed to cover my hands in the summer anyway). So, I’ve decided to take my psychotherapist’s advice for now and be grumpy about it. It’s impossible to be happy and positive all the time (even though that’s my preferred mood). I’m going to be grumpy and frustrated and sit in that emotion for awhile, until it’s time to not do that anymore.

If anyone has any advice for sun-lovers, stories, or anything else they’d like to share, feel free to comment or email me.

So that was that. And now it’s 2023, almost five years later, where I can give so much more of what I’ve learned and try to share that with all of you.

Keep making the most of it everyone!

Video: Values-Based Living – New Years Message for Spoonies

This year, let’s focus on living by our values instead of setting goals. Connecting with our values is one way to improve our lives with chronic pain and illness. Check out the video below for more on the difference between values and goals:

I hope this helps us all to make the most of it in the new year!

How to Set a (Spoonie) Goal This New Year

It’s ALMOST 2023! I can’t believe it because it feels like the last 3 years took a hundred years and yet also flew by. So weird. Anyway, everyone jumps on the goal setting band wagon in the new year and this post isn’t exactly that. I usually do a post of this sort in January for two reasons (1) many of you may be looking for help with goal setting, and (2) it gives me a chance to talk about values vs. goals (guess what I think is more important and beneficial in the long run?). I have nothing against goal setting. We need to do it to accomplish things in our lives. So let’s just jump into how to set a goal – for everyone really – but especially if you have chronic pain or illness.

One of my new year goals is to increase my hiking ability.

SPECIFIC
What is it exactly that you want to accomplish this year (or day, week, month, etc.). Be as detailed as possible. I’ll use my hiking goal as an example (it’s really ambitious goal for a spoonie but I have incredible support team – my physiotherapist, other healthcare practitioners, and my very avid-hiking partner). Specifically I want to be able to do a hike that is 40+ km and/or 2000m in elevation. Currently I can do about 8km and 800m elevation. Being a specific as possible helps us know what we’re going after.

Meaningful
Why is this goal important to you? What values does it connect with? Values are qualities of action, or how we treat ourselves, others and the world. If the goal isn’t important to you and doesn’t align with your values it’s unlikely you’ll hit it (and if you do you are very good at finding motivation elsewhere because often our motivation comes from our values). Using my hiking goal, this is important to me because it aligns with my values of adventure, health and fitness, and connection (with my partner). I suggest writing down your values when you set your goal.

Adaptive
Your goal needs to improve your life in some way. Again, this is useful for motivation. Why do something if it doesn’t help you? Think about ways your goal will make your life better. Hiking will make my life better because I will feel physically healthier, and I’ll get to have new experiences. Write down how your goal will improve your life.

Realistic
When goals aren’t realistic we don’t hit them. Often, especially in the new year, we make goals that are waaaay off what is actually possible for us. We want to cut out all sugar immediately or run that 5k tomorrow or double our income in 2 months. This causes us to get frustrated and give up. Is my goal realistic? Well, I planned it out with my physiotherapist, based on my current ability, how my body is currently doing, and by breaking it down into smaller chunks so that I gradually increase distance and elevation each month. This all said, as a Spoonie, I know that I may have to adapt or change the plan in the event that my health suddenly isn’t doing as well (and due to weather, like what happened in November and December in BC). Basically you want to be 7/10 minimum in confidence that you’ll hit your goal. Are you?

Time-Bound
Knowing when we will hit our goal, the exact time frame, helps us to reach it. Is this a goal for the end of the week? Month? 6 months? Year? Can you break it down into smaller chunks if it’s one of the longer ones? Can you make it time-bound within the day or week (ex., yoga 3x week on days X, Y, Z for X minutes)? As I mentioned I have broken down my goal by month so that each month I have to hit X distance and X elevation, with a slight increase each month until I hit my goal by the end of the summer. What are your time-frames?

So, all written out your goal will look something like:
I will hike 40+ km and/or 2000m elevation by the end of August, 2023 by gradually increasing my distance and elevation each month, hiking weekly or biweekly depending on the weather. The goal is important to me because I will be engaging in adventure, healthy living, and connection with my partner. It will improve my life by increasing my overall fitness and letting me experience new things.

What does your goal look like? Feel free to share! And keep making the most of it!

Video: Holidays & Spoonies

Just a little message of hope this holiday season so that we can all keep making the most of it!

The crisis line in Canada is: 1-866-585-0445

The text line in Canada for adults: text WELLNESS to 741741

The text line in Canada for youth: text WELLNESS to 686868

How to Navigate Christmas (or whatever you celebrate) with Chronic Pain

The holiday season is a stressful time for most people. It’s often financially draining. Physically draining when trying to attend all of the events. And for many people it can be a lonely time or a triggering time or a time when there is more sadness or anxiety than the rest of the year. When I lived in Toronto from 2015-2020, I spent 1 Christmas with just my partner at the time (and my dog), followed by 2 Christmases with just my dog, followed by 2 Christmases with a friend and his family, and then finally a Christmas with my parents. Last year I was with my brother and his wife and stepkids (and my SIL’s brother and his family). This year I get to spend it with my parents, other brother and his wife (and 2 dogs). I know what it’s like to have a lonely Christmas. I also know what it’s like to have a busy Christmas. I spent many years (including with chronic pain) working in retail and working 45+ hour weeks throughout December, doing a lot of standing and running around. This year I’ve gone to so many holiday events already that even though I feel a lot better physically (and emotionally) than I have in the past, I still notice a bit more pain than I had. How do we navigate all of this?

I’ve had many different types of Christmases over the years (2018)

Emotions: Loneliness, Sadness, Anxiety & Stress
First, I think that recognizing what you’re feeling is important. I’m a big believer in not trying to repress emotions (while also not getting swept away by them). Making some room for this experience is actually okay. You’re not alone in any of these feelings and remembering that is so important. Giving yourself a lot of compassion can help a lot. Also trying to connect with others as much as possible – even if its short durations, or online instead of in-person can help ease a lot of these feelings. If you can muster up a gratitude practice, I find it can be helpful. Of course, reach out to local helplines for support if you’re in crisis. Maybe try this self-compassion/Christmas gratitude practice I released last year.

Pain and Other Symptoms
Noticing your triggers for pain – as I’m sure many of you are aware – is important. There’s no point pushing yourself to the point of exhaustion. Taking breaks and pacing is extremely important, even if you’re “in charge” of buying presents or cooking meals (actually this is when it’s most important). Think about who you can share some of these responsibilities with and ask for help (making room for uncomfortable feelings that may come with it). Try not to schedule too much for yourself in one day and keep all the days with as equal amount of activity as possible. I know that the amount of events I’m attending is actually winding down over Christmas and all of the cooking is shared between myself, my parents, and my brother and SIL. My New Years’ plans are pretty chill – my partner and I are just going to a brewery (just us). Maybe try some relaxation practices throughout the holidays when you’re taking breaks. Something like yoga nidra.

All in all, just doing what is within your control to make this a good holiday and allowing what is not in your control to just be there, without it overtaking you. I know from experience that this is easier said than done. Just keep on making the most of it everyone!