How Did I Prevent a Flare?

Plus who is this blogger and why should you care what I have to say?

I think that I sometimes give off the impression that I’m 100% fine 100% of the time, which as anyone with a chronic illness or dealing with chronic pain knows, is simply not true. What is true, is that I’ve learned several strategies over the past 5 years to improve my well-being, even on my days of struggle. Let’s take this morning (Saturday) as a write this. I had some pain in my hips (both of them). I live alone and needed groceries and don’t have a car, so I walked to the grocery store. My arms killed on the way home because I accidentally bought more than I could carry. Then the apartment building door whacked my right hip (the less sore of the two) which obviously caused more pain. And then I became angry. Like swearing, yelling, grumbling, angry. I got text messages and was annoyed at the people texting me even though they weren’t saying anything bad. Then I noticed what was happening. Was this anger helpful? No, if anything it was making my pain worse. So I took a moment, watched my breath flow in and out of my body, and calmed down mentally… and then it helped my body to calm down physically.

These are my favourite days.

So… who am I? I’m Kelsey. I’m a person with lived experience. I have diagnoses of undifferentiated connective tissue disease, fibromyalgia, and glaucoma. I’m also someone who meditates daily (over 100 days in a row – my longest streak). I’m someone who has bad days, and good days. I make it my priority to have way more good days than bad ones. I’m a person who went to psychotherapy among other treatments (physio, chiropractor, naturopath, massage, etc.) and found it helpful for my anxiety and ultimately my pain. And then I became someone who went back to school to get my Masters in Counselling psychology, which I have now completed, despite the fact that I was working full time and in pain. I am someone who is committed to helping others who are struggling. And I am someone who wants to share what I’ve learned – and what I’m still learning – with all of you. I am me.

Just waiting for my final mark, but it looks like a therapist now!

Why should you listen to what I have to say? Well, there is no particular reason and it’s completely up to you! What I can say, is that I try to bring my personal, lived experience, with research (yes I actually do a ton of reading of scholarly journal articles for my posts) and clinical experience so provide you all with different ways to improve your well-being. Take me this morning for example. Would it have been helpful to stay angry all day? Likely I would’ve had to spend it in bed and probably wouldn’t have written this post. I’ve found this to be helpful for me, so it just might be helpful for you. Along with this blog, I have other resources too. Like my podcast and YouTube channel, which you should definitely check out if you haven’t yet.

On Halloween I was a badass like Buffy.

Okay, so I thought we’d end on a fun note. Two truths and a lie. I’d love to hear in the comments which one you think is a lie.
1. I have spent the evening hanging out with a celebrity.
2. I recently got a new puppy.
3. Pineapple is my favourite fruit.

My podcast topic this week was utilizing your authentic self, and next week is about evidence based treatments for chronic pain. My YouTube channel has a new video for building self-awareness (which is how I knew to calm myself this morning!). Until next week, keep making the most of it!

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Taking a Break with Family

As I titled this I realized some people might automatically read “from” family which is 100% not what I’m going for. Rather, taking a break from all of the other things in life to spend time WITH family, is something some of us probably need right now (some of you may have just spent the past 6 months locked up with your family and may need the opposite type of break)! I needed the break for a couple of reasons: (1) I live far from the rest of my family, (2) because of the pandemic this is the longest I’ve gone without seeing them, (3) work has been hella stressful (also due to the pandemic), and (4) while your support system can include many other people, mine also includes my family.

Me and the bros in Kalamalka Park, BC. Epic hike!

And so, I risked it and went on a plane, taking me from Ontario to BC. (To be honest the airlines are doing a decent job at making travel as safe as possible and all passengers seem to consider safety important). Both of my brothers live in BC with their partners, and it was my younger brother whom I stayed with. The trip itself was a mix of physical activity (hiking, kayaking, yoga – all my faves) and chill time (eating and drinking at wineries and pubs, and watching movies).

Yoga day at a winery overlooking Lake Okanagan.

There are two parts of my trip that I valued the most. One was hanging out with my younger brother, both the first day I got in when we just toured around town and caught up on what’s been going on with one another, and then when we binge watched three movies back-to-back on Sunday night because we both love movies. The other was when my older brother and his wife joined the other three of us on a hike, winery tastings, and dinner, allowing us all to spend some time together. Interestingly it is my older brother I’ve seen the most of during the past few years as his work often brings him to Toronto to visit. Because of Covid-19, his company has restricted travel until the new year.

How we do a winery!

Having a mental break and spending it with people I love was so important. I maybe pushed a bit too hard on some of the hikes but it made me rethink where I want to be in the near future, and to be honest, I never consider change a bad thing. We’ll see where the future takes each of us.

If I can also get some thoughts, prayers, whatever you personally do for Spike I would really appreciate it. He is at the vet, having been extremely sick over the past 18 hours.

When Spike was feeling much better on his 11th birthday a few weeks ago.

Keeping Track of Your Mental Health

As my many of my fellow chronic illness warriors know, mental health struggles such as depression and anxiety are real…ly common . Not that they are necessarily constant, though the can be. I actually do a whole episode of my podcast on mental health and it’s relation to chronic illness, so feel free to check that out for more info. For today however, I want to take a look at one element of our mental health, which is commonly experienced by everyone (seriously everyone) whether or not they have another underlying physical or mental illness. Negative automatic thoughts (or NATs).

Image from: https://www.cbtcognitivebehavioraltherapy.com/what-is-automatic-negative-thoughts-ants/

NATs are those subconscious thoughts that you don’t realize you’re having until you do (and even then you may not realize that’s what they are). It’s the thoughts of “I suck,” “how could I be so stupid,” “what an idiot I am,” “why am I dumb enough to say that,” etc, etc, etc. Are they accurate thoughts? Usually not. But we all have them from time to time (or more often, but we’ll get to that in a minute). These thoughts, according to cognitive behavioural therapy, can lead to anxiety and depression. Why? Because our thoughts cause our feelings. If we keep telling ourselves that we are “stupid” or “not good enough” or whatever terrible thing we say to ourselves, we will (a) start to believe it, and (b) feel upset about it. Makes sense right?

Image from: https://iveronicawalsh.wordpress.com/2012/03/18/the-vicious-circle-of-negative-auto-pilot-thinking/

If you’ve gone to a CBT therapist, you may have experience with thought records. Basically, this is a sheet (or note on your phone) where you record your thought and your feeling every time you have one of these negative automatic thoughts. The point is twofold. First, it’s to see how often you are having these thoughts and what emotions are connected to them. Second, it allows you the opportunity to begin changing these thoughts. If you can catch yourself saying “I’m stupid” then you can change it to, “you know that may have not been the smartest choice to make but I’ve learned from it so I won’t do it again.” Or more simply, “I’m not stupid, I’m smart, I just did a silly thing.” To be honest, this is a much harder skill to learn than it seems, but it can be done.

Image from: http://www.allaboutdepression.com/workshops/CBT_Workshop/CBT_12.html

Changing these thoughts into positive ones instead of negative is an ultimate act of self-love. To be honest, since I started to practice this a few years ago, I have less NATs than I did before. Yes, they still pop up, but I can catch myself and reframe the thought because I know that the thought isn’t true. I encourage everyone to try to keep track of your thoughts for awhile so you can catch these nasty little NATs and try to take some ownership of your mental health through self-love.

Practical Tips: The Thumper

Sometimes when we can’t afford to go to chiro or physio, or we just need to get by in between appointments, there are some awesome self-care items we can buy that will provide a ton of relief. In this week’s video, I tell you about one of my favourites. For more tips, check out my podcast – Chronically Living and how to make the most of it (available on Apple Podcasts and Spotify). The episode with Queenie Wu, and the upcoming one with Dr. Frank Nhan, will get you some more info on what you can do at home (as well as great reasons to check out physio and chiro as health options).

How’s Your Pain Today?

I always have a million topic ideas in my head (well technically I write them down on Stickies because I don’t want to forget them) but I often end up going with something currently relevant to me because, well, it just makes more sense to. As I’ve mentioned before, in addition to fibromyalgia (and maybe lupus) I also have a tear of the anterior labrum (hip) – I’ll throw in a picture of what that looks like). This tear is brutal. Initially my rheumatologist told me that it could be taken care of with physio and if that doesn’t work, then surgery. She asked me if I’d like a referral to the surgeon, to which I said yes. This was March 2020. About a week before Covid-19 really went for it and we started shutting everything down, including “elective” surgeries (because is a surgery that will take away pain really elective?).

Image from: https://eorthopod.com/labral-tears-of-the-hip/

Anyway, the pain has normally been around a 7 in my hip. I’ve been doing physio (virtual) since the end of March and while my physiotherapist is amazing (check out my podcast), it also doesn’t really seem to be helping with this particular problem. Fast forward to last week Thursday when I leaned against a counter at work while I was talking to my boss… and I happened to learn right against the tear. Talk about excruciating pain running down my entire leg – hip to ankle! But I sucked it up and stayed at work and powered through. The pain now around an 8.

Even with pain at an 8 I can still enjoy the great outdoors (Niagara on the Lake, Ontario)

Fast forward to Monday, when I’m doing my normal hardcore workout. It’s an upper body one, so I’m not too concerned because my hip is normally fine on these workouts (sometimes I have to adjust lower body and full body workouts to accommodate my hip). Well, as I moved to get out a position, I heard and felt a “pop.” This seemed like my hip popped in and out of place (though upon some research I read that’s not really a thing that happens, so I’m not sure what exactly happened). Now the pain is a 9. I went to work Monday and Tuesday, and then got a doctor’s note for a week off from today (Wednesday) through next Wednesday.

Spike is a good nurse.

So how can I still smile and laugh through all of this? First of all, that’s not always easy. I have to frequently change my position (standing, sitting, walking, lying) in order to feel comfortable because I can’t really be in any of them for too long. At the end of the day though, I can sit and feel sorry for myself (or be hard on myself because technically it’s my own fault it got worse) or I can (a) be productive and constantly call the hospital to see if they can do this type of surgery now, and (b) realize that pain, even chronic pain, is a temporary sensation. I can do meditations that focus on physical pain (which I did this morning), I can write a blog post, I can rest, and I can still have a life with this, because the other option is to not and I refuse to do that.

Upo reserch, this is the type of surgery that needs to be done. Image from: https://orthoinfo.aaos.org/en/diseases–conditions/slap-tears/

How are you all feeling about your pain today?

Also, if you haven’t yet checked out my podcast – Chronically Living and how to make the most of it (Apple Podcasts and Spotify), the latest episode is on Pelvic Health. I would really appreciate some reviews and ratings for it (plus I have a little promotion going for that – see my Instagram @janeversuspain for more details).

Convos and Massages

I can never express enough how beneficial I find getting a massage. For someone who has all over body pain, spending 45, 60 or in today’s case, 90 minutes having a RMT deep tissues massage you can completely change how your body feels. Normally, I have a massage very 2 months, for 45 minutes to an hour. Because of Covid, I haven’t had a massage since February. I also normally feel good but sore after a massage. Today I just feel amazing. My body needed it, and needed it more than I could imagine. Luckily, I have insurance that covers it. If I didn’t, I know I would find a way to work it into my budget. Finding an amazing RMT is also something I can’t emphasize enough. I told mine about my hip tear, explained what type of tear it was and how it was giving me referred pain in my leg. She not only worked the hip and the thigh, but made them feel so much better. I know it’s a bandaid of sorts but sometimes that is enough to get you through, when you have chronic pain (or rather I should say ME because I can’t speak for everyone).

Image from: https://www.wellness-within.ca/massage-st-albert

I also always have interesting conversations with my RMT. I know some people like to go and just chill and relax and not talk at all during their services. I get that, and I’ve been like that. I do strongly believe in relaxation and relaxation techniques. However, my RMT is hilarious, engaging, and a great conversationalist. So, I know that when I go for a massage, we will talk the whole time and it will be about very diverse topics. We covered a lot in our 90 minutes today. From systemic racism in the police force and amongst white people in general, to anti-maskers, to Hamilton as seen on Disney+, to the Netflix documentary disclosure and how trans actors should be cast in trans roles. (There were a lot of other subjects by the way, but I feel like this gives you a general picture).

Image from: https://rogersmovienation.com/2020/06/25/documentary-review-disclosure-charts-the-evolution-of-trans-representation-on-film-and-tv/

What I’ve found is that because she’s intelligent and does research, we have these amazing intellectual conversations that are good for both of our minds. I’ve been talking a lot of about self-care in school. I’m taking a group counselling course in my master’s program. Last week, a partner and I ran a group on self-care for a few of our classmates, and this week one of the group’s I’m participating in is on self-care. One of the aspects of self-care that can easily be overlooked is the psychological. We need to engage our minds, whether through reading or good conversation, in things that we don’t normally engage in. It helps with our overall well-being. Reading, writing, watching a documentary, going to therapy, or having these types of conversations can fuel your mind, taking care of it. So, we can say that today I have already done some physical and mental/psychological self-care and it’s only 1pm.

Image from: https://bccampus.ca/2020/06/18/why-self-care-isnt-selfish-caring-for-yourself-during-covid-19/

If you’re looking at increasing your self-care, look at these different areas:

Physical – healthy eating, taking your medications and going to appointments, exercise, massages, physical intimacy with your partner.
Psychological – listed in the previous paragraph!
Emotional – hobbies, pets, social activism, volunteering, being in tune with your emotions
Spiritual – mediation, yoga, forgiveness, church, being in nature.
Personal – setting goals, family time, reading, learning something new, spending time with friends
Professional – not taking work home with you, taking appropriate breaks, taking mental health days, taking vacation time, setting boundaries

Reference:
https://crmhs.org/mental-health-self-care-2/

Fighting off Depression for Chronic Illness and Non-Chronic Illness Warriors

I want to talk a bit about mental health today. A lot of people with chronic illness deal with depression and anxiety. During this Covid-19 post-lockdown period, a number of previously mentally healthy people have been also dealing with feelings of anxiety and depression because of their time in isolation and the different experiences this may have brought for them. While there are many different reasons for people to become depressed, there are some proven ways to combat it. The way I’d like to talk about today is behavioral activation.

Image from: https://www.psychologytools.com/self-help/behavioral-activation/

As I’ve mentioned before, I am currently doing my a Master’s degree in Counselling Psychology. Last month I took a course on Cognitive Behavioral interventions. Though I am not planning on specializing in CBT, I do find that a lot of the empirically supported interventions are worth integrating into my future practice. Anyway, I’ll digress. What is behavioral activation? BA is an intervention that suggests that doing something you enjoy and/or are masterful at and/or provides social interaction, will decrease your depressive symptoms and ultimately make you feel happy. Before you start to laugh, as I have mentioned, there is a lot of evidence (which I’ll link below) that supports this treatment for depression, including severe depression. If you find you’re feeling more depressed at a certain time of day, that is when you should schedule activities for. Remember, they need to be something you enjoy (or previously enjoyed before depression) or something you’re good at. So, for example, if from 3-5pm every day you feel really depressed, but you like to be outside and walk, then that’s the time you should do it.

Image from: https://www.psychologytools.com/self-help/behavioral-activation/

Here’s something I noticed during lockdown. Most of the people I know who sat at home and did nothing – just watched Netflix all day or played video games – felt depressed. I volunteer at a crisis text line and a lot of the texters felt the same way by just doing those things – movies and video games. Now, I have nothing against movies and video games and they can be things you enjoy, but not necessarily when it’s all you do all day every day. Those of us who kept busy (I studied, exercised, meditated, did my 30-day self-care challenge, walked, learned a new language, etc, etc.) did not feel depressed. Kind of interesting isn’t it?

Lockdown era city hike.

My suggestion is that if you’re feeling depressed, try to start scheduling some activities for yourself, or now that lockdown is winding down, start to see some of your friends again. If you’re severely depressed, I do suggest finding a therapist to help you as well, but don’t be surprised if one of the things they suggest is behavioral activation! Of course, for anyone with a chronic illness, we may not be able to do ALL of the things we could before, but that doesn’t mean there aren’t things you enjoy or are good at. Take a look at what you can do and go from there.

Happy Canada Day to my fellow Canadians!
Image from: https://www.albertaprimetimes.com/the-bright-side/canada-day-2020-20-facts-and-figures-to-celebrate-the-big-day-2527866

Here are some articles surrounding the efficacy of it.

https://www.verywellmind.com/increasing-the-effectiveness-of-behavioral-activation-2797597

https://positivepsychology.com/behavioural-activation-therapy-treating-depression/

https://www.redalyc.org/pdf/172/17220620045.pdf

https://pdfs.semanticscholar.org/ba12/5cb76b3baa12cc272d9c9bb95e3297eeee83.pdf

Hydroxychloroquine & Covid-19 Deaths…What Does it Mean for Us?

As many of you probably recall, hydroxychloroquine and chloroquine, both of which are antimalarials and often used in the treatment of lupus/SLE were being tested a few months ago as a potential treatment for Covid-19. US President Trump of course quickly jumped on this bandwagon proclaiming that it was a “game-changer.” This was said, of course, as testing was being started, not because of results of testing that had finished. As a result, I remember seeing many Spoonies, particularly those with lupus panicking because they couldn’t get their medications as quickly. And to be honest, I quickly went and refilled my own prescription. Though I’m only borderline for lupus, my rheumatologist kept me on the drug as it seems to have helped my symptoms over the past few years.

Now, results of the first study have been reported in the medical journal The Lancet. And those results aren’t exactly great… Of those patients who received hydroxychloroquine or chloroquine as a treatment, many of them ended up with heart problems and died as a result. So my question is, what does that mean for those of us who are regularly prescribed these meds? As North America starts to open up again (too soon here in Ontario given our daily cases, and WAAAAY too soon in the States given that they haven’t come close to flattening the curve, does that put myself and everyone else at a higher risk of death if we do get Covid-19?

Good thing I stocked up… bad thing it could be dangerous.

Unfortunately from what I read in news articles, I couldn’t find an answer. And no, I haven’t read the study itself in The Lancet (I can only read so many journal articles in a week and I have to read a lot of them for school), so I don’t have an answer. It does make me weary though. I didn’t want to get Covid-19 in the first place, but now I’m feeling more apprehensive about it. I’m very curious how my other Spoonies/Warriors are feeling about all of this and what precautions everyone is taking. Last week I was told to expect to be back at work in the next 2-3 weeks, and I work with the public. And while my company is providing masks to employees, we already know that is just to protect others, and masks don’t actually protect us, which means I have to trust the public to come in with masks as well (based on what I’ve seen, I don’t trust most people). At the same time, as a furloughed employee, I have to return to work when called in. Quite the predicament.

Image from: https://www.lehighvalleylive.com/acts/2020/05/read-my-lips-coworkers-create-clear-masks-for-hearing-impaired-manager-of-lehigh-valley-best-buy.html

Here is the link to a news article from the Washington Post about it:

Washington Post: Hydroxychloroquine Study

I’m hoping more information comes in about hydroxychloroquine and Covid-19, and what the hell that means for us. I’d love to hear your comments and thoughts on all of this, so please leave a comment, send an email (janeversuspain@gmail.com) or DM me on instagram (@janeversuspain). Stay safe.

5-minute meditation

Hey everyone! It’s a vlog post today. Come and meditate with me for 5-minutes and you’ll feel so much better!