It’s important to move our bodies as much as we can, even just to get the blood flowing! Sometimes chronic illness warriors find it difficult to get up and about, so this is an easy practice to get some movement in – either sitting or lying down – without putting too much strain on the body or taking too much energy. Plus it can be done multiple times per day if needed and only takes about 20-30 seconds each round.
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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!
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.
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.
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.
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.
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.
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!
These are the exercises I’ve been doing to strengthen my hip post-op. They were all given to me by my physiotherapist and chiropractor (please consult with yours before trying new workout routines). I’ve found them to be really helpful, especially when I was learning to walk again after my surgery. All the exercises are 10 reps per set and 2 sets. Check out my podcast interview with Trachele for how you can get your exercising started again when you have a chronic illness.
It’s not really a surprise that Spoonies have more stress than healthy folks. Chronic illness and chronic pain warriors just have a lot more to deal with. Coming up with ways to relieve stress is important, and something I try to pay attention to. As stress accumulates it can lead to mental health problems, and quite often, especially with autoimmune diseases, flares. Today I thought we’d focus on some causes of stress and I’ll give some ideas (that work for me) for you to try out to see if they help at all.
First, I thought we’d start off with a few definitions. The reason I want to give these is that often as a therapist-in-training, I see that people don’t really understand the meanings of the words they use, nor are they aware of the difference appropriate emotional responses and ones that don’t fit the situation.
stress – normal, physiological reaction caused by the fight-flight-freeze response in our brains, alerting us that something needs our attention. It’s neither good nor bad, but is a signal telling us that we need to act on something. podcast
anxiety – “an emotion characterized by feelings of tension, worried thoughts and physical changes like increased blood pressure” (American Psychological Association). Anxiety is also not inherently good or bad. It’s another natural response of the fight-flight-freeze part of our brain. It’s also normal and part of what makes us human. There is no way to be totally free of anxiety. Fear, on the other hand can be extremely protective and it can be easily confused with anxiety. podcast
Anxiety disorder: anxiety that is out of proportion with the situation, and is long-lasting and severe can indicate an anxiety disorder. Someone with an anxiety disorder has “recurring, intrusive thoughts or concerns” (APA)
depression: an emotional disorder that can include feelings of sadness, loss of interest in pleasurable activities, and low energy and motivation. Sadness is a common emotion that is important to our functioning. Depression occurs when sadness doesn’t just “go away” on its own. Both anxiety disorders and depression are helped with psychological treatments. blog, podcast
trauma – “an emotional response to a terrible event like an accident, rape or natural disaster. Immediately after the event, shock and denial are typical. Longer term reactions include unpredictable emotions, flashbacks, strained relationships and even physical symptoms like headaches or nausea” (APA). I’ve heard this one be misused often, so just be aware of whether you’re actually experiencing trauma. This can also be helped with psychological treatments.
Okay, now that we’ve got that out of the way. What are some common causes of stress in Spoonies?
physical symptoms – flares, pain, and basically any other annoying and/or debilitating symptom that comes with your chronic illness. blog
medical gaslighting – when a doctor or healthcare professional dismisses your pain and/or symptoms. podcast
interpersonal relationships – difficulties with your partner, family, or friends often stemming from a lack of understanding of your illness. blog
finances/insurance – even with insurance there is a cost of medications and other treatments that may not be covered or give you as much coverage as you need. blog
These are of course, just a few, and you may experience a lot of other stressors depending on your illness and overall life situation. The point out reducing stressors like this is to improve your overall quality of life. So, here are some suggestions that I’ve found to be helpful for each of these (I’m going to link some of my other posts and podcast episodes in case you want more in-depth information).
Mindfulness, exercise, sleep, and diet. This means daily practice of whatever way you stay present. Getting whatever type of exercise is accessible during the day (even if it’s a short walk). Practicing good sleep hygiene. And eating as healthy a diet as you can. podcast, podcast, podcast, podcast (yes, one for each of these).
Being a self-advocate when it comes to your health and knowing your rights. The medical gaslighting podcast episode I mentioned earlier goes into being a self-advocate. For disability rights check out this podcast.
Effective communication and emotional regulation. We can’t control other people but we can definitely control ourselves, even if our emotions are high. podcast
Budgeting, budgeting, budgeting. I am without health insurance for the first time in many years. And yes, I live in Canada where healthcare is “Free” (with the exceptions of medications, dentistry, and adjunct care such as physio/chiro/naturopath/massage/etc). Yet I’ve seen the chiropractor twice in the past 3 months (with another appointment today) and gone for a massage. I’ve very meticulously budgeted these in because they are so helpful. The blog post mentioned for finances incorporates budgeting.
On top of all this, practicing self-care (podcast) is very helpful. If you don’t like the term “self-care” because it’s been waaaay overused in the media than maybe think of it is as “ways to improve my overall health.” It includes domains of : physical, emotional, intellectual, social, spiritual, and work. It is also incredibly helpful in reducing stress levels. I’m going to be hosting a self-care challenge starting on April 24 on the premium blog. To sign up for the challenge it is only $5 and you get 4 weekly premium posts, motivation for the challenge, ideas and help with the challenge, and an opportunity to be featured on the blog and/or podcast! Stay tuned for more!
Until next week Spoonies, keep making the most of it!
First of all, I’m going to say that I’m pretty impressed with myself for writing a blog post just 24 hours after coming out of surgery. Also, this was my first ever surgery, so I thought I’d share some thoughts and feelings about the whole experience. If you’ve been following me for awhile you are probably aware that I was diagnosed with a labral tear in my left hip back in March (MRI was back in January). Of course, with Covid-19 any kind of surgical consult, let alone treatment was pushed back and back (also I was floated around to 3 hospitals because very few surgeons specialize in hip arthroscopy apparently).
I didn’t choose the surgical route lightly. Actually, I took advice from several physicians and healthcare professionals before making the decision. My rheumatologist (actually my rheumatologist was on mat leave so it was the one covering for her) diagnosed the hip tear and sent off for a surgical consult. She also told me to start physiotherapy for the tear as it is often helpful. Because things closed down because of the pandemic, I started virtual physio with my regular physiotherapist mid-April. Though exercise helped a bit, it was minimal. I added chiropractics, and massage back into my routine care (because of my undifferentiated connective tissue disease as well) in July, and then most recently started seeing the naturopath again at the end of September. All helpful, but not enough to take away the excruciating discomfort cause by the tear. They all also offered opinions, some differing, on whether I should have surgery. At the end of the day, with research done on my own, I decided that as my naturopath put it, surgery was really the only option to fix the problem.
Now, I actually wasn’t nervous about the surgery, especially after finally meeting with the surgeon mid October, and literally being booked for surgery less than a month later. He was confident, read me off the risks which were minimal, and again, I did some research on long-term outcome studies. Yesterday, after I had been checked in, and then taken into the pre-op area for some vitals and questions, I started to get nervous. However, the amazing healthcare team (all the pre-op, op, post-op nurses; pre-op and op anesthesiologists and assistants; and of course my surgeon and surgical team) made me feel at ease. According to my surgeon after surgery, it went “perfectly.” Also a relief.
Post-operatively not so fun. I wasn’t actually nauseous at first and the pain in my hip I rated at a 6-7 (for which they had me on morphine) after about 30-45 minutes later (really was out of it and couldn’t keep track of time) I rated the pain about the same, so they gave me oxycodone, which then made me nauseous. It took another 2.5 hours for me not to feel “as nauseous”… basically the least amount for me to go home (and my pain was also down to about a 4 at the time). Long day. Probably longer for my amazing friend, Mike, who picked me up from my appointment and then took care of me at home (even brought groceries, and Starbucks!). The nausea stayed until like 7:30pm. Honestly, I think food helped. And I was pretty out of it all day. Oh yeah, they gave me Gravol for the nausea which totally made me drowsy. But we had sushi, and watched Netflix until like 9, when I passed out in bed.
At this point I’m more annoyed about the post-op complications I guess? First, sore throat which apparently is common after coming off of general anesthesia, but I didn’t know that. I’m trying to drink a ton of liquids to help! Second, I have numbness in the groin area… maybe I’ll share more about that on a later post but let me say, not fun. Finally, living alone and trying to get around on crutches post-op is not fun. I have to ice my hip constantly, and then it took me forever to get coffee/breakfast ready for myself this morning. If it weren’t for the pandemic, my mom would’ve flown out to help me. Oh well, I suppose this is Chronic Pain Warrior life.
That was mostly thoughts… as for feelings, I’m tired and sore and frustrated (about the numbness) but also relieved to have the surgery over with, and hopeful that I will have significantly less pain in my hip. I mean, if I’m going to be a practicing therapist soon I need to be able to sit for long hours without looking like I’m in discomfort, so I can be present on focused on those future clients of mine!
If anyone else has an op/post-op experience they’d like to share, I’d love to hear from you. And remember, keep making the most of it. 🙂
I hope you’re enjoying the “stretch” series. This week we’re doing stretches for our back. I’ve added two more in addition to the cat cow. As always, please consult with your own professionals if you are unsure of how to do the stretches or don’t know if you should be. These were given to me by current and former physiotherapists and chiropractors. I personally find them to help alleviate some of my back pain. Enjoy! And let me know in the comments if you have some of your own favourite back stretches!
Hey Everyone! I decided to join this chronic illness blog linkup thing this month so I’m going to use their writing prompts for a few of my posts. Honestly, I think it can be helpful to use writing prompts from time to time. Not because I ever run out of topics to write about (I doubt that will ever happen) but because it causes me to think differently and even more critically. I decided to start with the topic of “switching” which can be anything that has switched up in our lives.
I recently left my retail job of the past 7 years. I was burnt out, had ongoing issues with a manager, anxiety about working with customers so closely during covid (so many anti-maskers and people just not understanding how to wear masks, and/or socially distance), and I wanted to concentrate on school. I am halfway through my third last course of my Master’s, and my Practicum Application Package is due November 1, so I basically have October to complete it (and trust me it’s huge). So, this means that I’ve had to switch a lot up in my life. But I view change as a good thing, and there are things about this change that can benefit my health.
First of all, my mental health has already benefited because there is one less thing on my plate. And, like I said, it was something that was causing me a lot of stress. My physical health is also benefiting. My labral hip tear was always made worse by standing for 8+ hours straight every day (okay there was a half hour break in there I guess). Now I am able to “switch up” (like what I did there?) whether I’m sitting, standing, walking, stretching, exercising, laying down, as much as I want! My hip pain has already decreased tremendously which is awesome. I will still likely need surgery but I don’t feel as desperate for it at the moment. My health is also benefiting because I have more time to schedule in appointments. I’ve already talked to my chiropractor about more sessions, and I can fit in physio, massage therapy, acupuncture, and psychotherapy much more easily because my time is flexible.
My daily routine is switching up in other ways too. I have more time to focus on my side projects – like this blog, my podcasts (I have two), some other content and merch I want to create. Plus integrating school into the mix, and finding time for other things I love like playing the piano as well. My routine isn’t the same everyday, though there are similarities – like I wake up and exercise or do yoga first thing. Change is a part of life, it is inevitable. Whether change is good or bad we have to embrace it. Yes, for me this change has been good, but even when change is not good (like the loss of my sweet Spike), I know that it is what we do with the change – the free will and choices we have and make – is what is important. I could have just filled my free time playing video games and watching movies (not to say I won’t do any of that) but instead I choose to be productive and creative with this extra time.
How are you switching things up this month? What changes are you encountering and how are you dealing with them? I’d love to hear from you in the comments, or via DM on Instagram (@janeversuspain).
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).
When it comes to work, a lot of people have difficulties setting boundaries. For those of us with a chronic illness, it becomes a difficult but necessary part of literally being able to work. Why am I bringing this up today? I have been off of work for the past week because of my hip tear, which seemingly go worse when I (a) accidentally leaned against it at work, and (b) my hip popped out of and back into place when I was doing an elevated pushup. Now I’m set to go back tomorrow but I will probably need some accommodations, because, despite the fact that I felt worse on Monday and now better today, I do a lot to mitigate the pain. The other part of this equation is that work has been so stressful since we fully reopened (limited customers) at the end of May, and I haven’t been able to set boundaries around that, I’ve become more anxious and had a general increase in body pain anyway. Now’s the time to make a change.
Even on the beach I had to change positions a million times.
So how do you set work boundaries? I mean, no boss or company wants to have to accommodate for an employee, right? Yet as much as I hate asking, I have seen some managers do it for others, and have had some managers do it for me. Plus, legally in Canada and some other countries, employers can’t discriminate because of (dis)ability. In the past I’ve always approached it with a very direct attitude. This is what I need, this is why I need it, and without it I can’t do my job properly. Direct works best. And when in doubt I have a doctor’s note as well (I currently have a few doctor’s notes in my file with no “expiry” date to them). Plus, I always tell my bosses that I will be flexible when needed (and I have been) because I understand the importance of the business (I work in electronics retail so it’s importance really depends on your own value to it).
What’s the difference now? Covid-19. As I’ve mentioned, we aren’t through it yet. At my work, we still have 18 staff members not back yet, we let limited customers in the store which is still too many at a time at times, and things are definitely not running as “normal.” What I currently need because of my hip: to be able to change physical positions as needed – sitting, sitting with my legs up, standing, walking, lying down. What I need because of stress: to not be the only person scheduled at customer service where I get long lines and yelled at by customers all day. Here’s the thing, I am scheduled alone at customer service for the next 3 days. The only other person scheduled for my entire department is collecting web orders, so literally nothing to do with directly dealing with customers. Therefore, I can’t just leave my post to change what position I’m in. I will stand for 9 hours with just my 30 minute break. Bad for hip and bad for stress. Do I need to say something? Yes. How will it go? I guess we’ll find out.
Being in nature is helpful for stress. Take a time out every know and then in order to heal.
I’m curious if any of my fellow Spoonies have been back to a work environment yet and what they are doing for boundary setting. This is a time where I wish I could work from home, but wishing isn’t going to make that happen at the moment. Please comment or DM me on Instagram and share your work boundary stories. Stay Safe.