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.

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!

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!

Video: Cooking with Kels – GF Butterscotch PB Marshmallow “Squares”

I love holiday baking. These treats are something that I grew up on and it’s great to know I can indulge as an adult with an AI disease and a modified diet. You can make these vegan as well by replacing the marshmallows and butter with vegan alternatives.

Recipe:
1/4 cup butter 3/4 cup peanut butter Melt in pot over low heat. Remove from heat once melted. 1 bag of butterscotch chippits Stir into butter/PB mixture until melted. 1 bag of mini marshmallows (coloured or white) Pour into large bowl and pour liquid mixtures over top. Stir until well mixed. Cool in fridge until hard.

Hope you enjoy! And keep making the most of it!

How Can Magnesium Help My Physical and Emotional Pain?

It’s not a secret that I like natural methods for helping physical and mental health. I’m not against medication – I take it for my AI disease and additional for pain as needed, and I often encourage clients to take it for their mental health issues if needed – I just prefer a combination of Western medicine and natural healing. People see me as a clinical counsellor because they want coping skills for their mental health. Coping skills are a natural way to heal. Sometimes supplements can also be very helpful, especially ones that tend to help both physical and mental health. So this week I thought we could talk about the benefits of magnesium (something I take) for our holistic health. Did you know that approximately 50% of Americans (likely Canadians too) don’t consume enough magnesium (Centre Spring MD). “Enough” magnesium would be between 300-420mg per day and up to 600mg per day.

Mental Health & Magnesium
Magnesium is something I typically take around my period. I tend to get bad cramps and it helps to relieve them (particularly the type of magnesium I take) and I’ve also noticed a lot less PMS-type symptoms since doing this. While the research doesn’t mention PMS, it does talk about depression and anxiety. According to research by Botturi, et al. (2020) magnesium has been shown to reduce depressive symptoms and even reduce the risk of developing a depressive disorder, if taken orally. Low magnesium levels can also be a cause of anxiety (or worsen anxiety) and cause difficulty with sleep (which often overlaps with anxiety and depression) (Ferguson, 2020, Healthline). It seems magnesium plays at least a partial role in the onset and/or maintenance of anxiety and depression (in some people at least).

Physical Health & Magnesium
As I mentioned magnesium has helped me with pain. The type I take (glycinate) is a muscle relaxant. In general people with low magnesium have been shown to have more muscle pain then those with sufficient amounts (Ferguson, 2020). There is also research to support that magnesium plays a role in the “prevention of central sensitization and in the attenuation of established pain hypersensitivity” (Na, Ryu & Do, 2011). Many of us with chronic pain are (or become) hypersensitive to pain. This seems to suggest that increasing our magnesium intake can help with the reduction of pain. These researchers also looked at certain types of pain such as perioperative pain, neuropathic pain, dysmenorrhea, tension headaches, and acute migraines and found that increasing magnesium helped with these.

How Can We Get More Magnesium?
I was listening to a podcast that suggested even using lotions infused with magnesium is helpful. However, most of the research seems to say that we need it orally – either as a supplement or as part of our diet. Some ideas of foods to eat include leafy greens (i.e, spinach and kale), avocado, dark chocolate, legumes, whole grains, nuts and seeds. Personally there are lot of things on that list that I eat regularly and enjoy consuming. If you don’t like those foods (which have a lot of other health benefits that I’ve blogged about before) there is always the supplement route!

Do you take magnesium? Have you noticed a difference with your physical or mental health? I’d love to hear your thoughts. And everyone, keep making the most of it!

Sources:
https://www.ncbi.nlm.nih.gov/books/NBK507245/
https://centrespringmd.com/the-benefits-of-magnesium-for-mood-mental-health/
https://www.healthline.com/health/magnesium-anxiety
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7352515/#:~:text=Some%20epidemiological%20or%20observational%20studies,symptoms%20%5B50%2C51%5D.

Video: Values-Based Activities – Why Try Yoga?

Yoga has a lot of different benefits for chronic pain and chronic illness and can be worth trying out. If you’re hesitant, I totally get it, I was for the longest time as well.

Keep making the most of it!

Video: What is Spoon Theory?

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.

Keep making the most of it!

Lessons Learned Travelling While in Remission

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…

Great Pyramids of Giza

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.

  1. 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!)
  2. 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.
  3. 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!

Video: Daily Mindfulness – Embracing Pain

Acceptance is hard. Embracing pain is hard. Especially for those of us who experience chronic pain. And yet, there is a lot of research that shows acceptance practices can help us manage pain much better. I have used many meditative (and non-meditative) acceptance practices on myself over the past several years and it has really helped me cope.

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

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.

My 2018 costume (Elle from Kill Bill)

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:

  1. 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.
  2. 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.
  3. 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!