I LOVE WALKING. Truly. I aim to walk 10,000 steps every day (give or take 1000) and will often end up on a hike that pushes me past that. Walking is something that I believe has really helped me move from being in a lot of pain and more ill, to being in remission. It’s not the only factor of course, but it is a very big part of my lifestyle. The easy part for me is that I actually enjoy walking. I’d rather walk than take transit (if I’m going somewhere “walkable” – 45 minutes or less). I even have friends that live nearby – transit takes 30 minutes to get there, walking takes 35 – easy answer for me. That being said, I know that not everyone actually enjoys walking. However, if you can get yourself to do it (or any other mild to moderate exercise), especially if you have pain, you also might start to see the benefits.
Selfie with headphones (and/or a hat, and/or sunglasses) = me on a walk.
There is a lot of researching showing that the greatest benefits of exercise, including walking, on chronic pain are mid- to long-term. So we can’t expect immediate results (as with many things). These benefits include reduction in pain, improvement in quality of life, less fear avoidance, and a decrease in disability. Some of the reasons that these results occur are due to movement promoting healthy nutrition of the cartilage (connective tissues) in our body, and engaging with the endogenous opioid system and other parts of the brain known to decrease pain. Basically all of our bodies natural pain killers are activated, which I think is pretty cool. Walking and exercise also decrease stress, and stress is a trigger of chronic pain and illness flares for many people.
As far as mental health goes, in addition to decreasing stress, study after study shows that walking and especially aerobic exercise (like jogging) can decrease anxiety and depression/improve mood. There are some other benefits such as improving self-efficacy (our belief that we can do things), improving social interaction (especially when walking with others), increasing our self-esteem (we feel better about ourselves), improving our overall cognitive functioning (memory, concentration, etc.), and improving sleep (being outdoors and exercising are both on sleep hygiene recommendations). A benefit that is good for both physical and mental health is weight reduction – though this certainly doesn’t have to be the goal/intent. There are a few reasons all of this happens: walking and exercise can serve as distraction from thoughts and feelings, and I think more importantly, it gets a lot of those natural happiness boosters activated, like serotonin.
Of course, make sure you talk to your doctor before starting any new exercise plan, including walking (and your physio/physical therapist, etc. as well). Start slowly and work your way up – even if this means just walking around the block once! Make sure you have comfortable shoes, possibly a friend to go with, and water to drink. And try to make it fun! Take different routes, listen to music or a podcast, or try some mindful walking. With all the benefits, it’s worth at least giving it a shot so that we can all keep on making the most of it!
So I write a lot of blog posts for my clinics that are really relevant to all of you as well. As a counsellor I specialize in working with people with chronic pain and chronic illness and concussion. As someone who has chronic pain and illness I know how difficult having these conditions can be. I also know how difficult it can be to get a good sleep… but also how important a good sleep is to improving our health. Quite a conundrum. Check out this post I wrote about sleep hygiene and its benefits for our overall health, as well as some sleep hygiene tips that are totally applicable to spoonies (I use them myself!):
If you’re a regular reader of this blog, then you know that I’m always looking for new ways to improve my overall health (and that I love to share my findings with all of you)! This week I want to explore a few items that can potentially help with sleep and relaxation. Sleep is incredibly important for your physical and mental health. Good sleep hygiene, in particular, can impact the quality of our sleep and improve our day-to-day functioning. However, what happens if your sleep hygiene is good but you’re still not getting a good sleep? Additionally, relaxation is important for Chronic Illness Warriors because if our mental health deteriorates, our physical health will as well (the body-mind connection). Pain increases with anxiety and depression, and there are lots of studies to support that, so relaxing (which helps anxiety) is another piece of the puzzle.
My parents dog was very relaxed there (and having a good sleep!)
I’m going to start with a product that I am currently using, which is the memory foam pillow. I first used one when I was visiting a friend awhile back and she had one. I found the pillow to be much more comfortable than what I was currently using. A few weeks ago I bought a memory foam pillow off of Amazon. Now, there are a ton of them on there. I bought a shredded one (again, going with what my friend had) but I imagine they have similar effects.
My memory foam pillow
What I like about it: It is extremely comfortable when lying on your back and the right balance between soft and firm for me.
What I don’t like about it: I’m a toss-and-turn sleeper, and it is much less comfortable when sleeping on your side and stomach (yes, sleeping on your stomach is bad and I try not to)
Would I recommend it?: Definitely if you sleep on your back, otherwise I’m 50/50 on whether it improves sleep.
The second product I want to talk about is the body pillow. I don’t have one but I’ve done reading on them and I’m convinced I want one. Also sometimes I line my spare pillows up next to me and use them as body pillows. They are apparently good for side sleepers, help back pain, and possibly release oxytocin in your brain (according to one article I read but I’m not 100% convinced by that). Apparently you have to be careful and get one that is the correct height for you. If someone uses one, please comment and let us know what your experience is!
The third product is weighted blankets. This is another product I haven’t tried but have heard amazing things about. I know a few people who use them and describe them as a “hug” and report that it does help their sleep. The thing to consider here is the weight of the blanket because you have to get one that is appropriate for your height/weight so you don’t get crushed but is also not just like a normal blanket. My former roommate had one that was too heavy for her so she gave it to her brother, whom it worked well for. Not only are they supposed to be helpful for sleep but also stress and anxiety, as they have some relaxation effects. If anyone uses a weighted blanket, a comment on this would also be lovely.
I have a birthday coming up so I’m likely going to buy myself either a weighted blanket or a body pillow (I’m not sure which one yet), so I’ll keep you posted on what I find. For now friends, keep making the most of it!
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.
Stress is an evolutionary response.
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.
Understanding mental health concepts can be helpful for managing it.
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
Side effect from my hip arthroscopy that definitely caused me some stress.
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.
There are lots of ways to decrease stress. I enjoy some light exercise in nature.
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!
I will start off by saying that a “top 10” is no way a comprehensive list, because there are lots of ways you can improve your health (or at least keep it at base line) when you have a chronic illness. A lot of this I’ve learned through my own trial-and-error, through my studies and work in psychology/psychotherapy, and from conversations with other Spoonies and healthcare professionals. So, this is basically my Top 10 list, and I’m hoping you can pull a few things out of it if you haven’t been doing these already. I’m also going to link some of my blog posts and podcast episodes if you want to have a deeper dive into these topics. Also, I couldn’t determine an order for these, so they are not necessarily in order of importance (assuming there is one)!
Are you ready for my Top 10?!
Eating healthy. This is so important and often overlooked. Eating food that is organic and free-range is ideal, though if you’re like me this might not be affordable. If that’s the case, throw in some of that where you can and otherwise focus on the food groups, especially lots of green veggies. Limit your red meats, and of course limit any food that makes your symptoms worse (for some people that’s gluten or dairy). Be open to trying out different diets (Paleo, Keto) or fasting – but always consult with your healthcare professionals first. Check out this blog post on eating healthy, and this podcast episode on living with allergies.
Drink lots of water. 6-8 cups a day is ideal. I’m currently doing a challenge through Shape and Foster and part of that challenge is drinking 1.5L of water per day. Honestly, some days I really struggle but I also notice that the days I drink that much water, I drink less other stuff (that’s not healthy) and I feel the best. Water is important for our overall health and can’t be overlooked! I’ve got a blog post about it, and it is an essential of health which I discussed on the podcast.
Eat healthy, drink water.
Take your meds! Medication management can be super annoying but you’re being prescribed them for a reason, and there is typically a lot of science around them. I sometimes forget to take my meds (not going to lie) but again, I do feel best when I take them as prescribed. This doesn’t just go for Western medication either, try out some Eastern ones (head over to a naturopath, chiropractor, or other practitioner) to get some holistic care going. I’ve got a blog post about health management, and a podcast about holistic options.
Sleep hygiene. It’s so important for our physical (and mental) health to get a good sleep. Our bodies need to feel energized and rested when we wake up. Spoonies definitely have extra challenges with sleep. I often toss and turn because I’m never comfortable. However, doing proper sleep hygiene can at least minimize some of these problems and get your a better sleep. When I have proper sleep hygiene, I notice a 50-80% improvement in my sleep! No jokes! Check out the blog post and podcast episode for more.
Take your meds, get some sleep (or end up looking like this!)
Exercise. Yes, exercise definitely helps with pain reduction, and can increase things like mobility. There is a ton of science behind it. That being said, you have to be careful not to go over your limits (i.e., just push yourself to your edge but not beyond it) because you don’t want to hurt yourself. Low impact is recommended for chronic illness (walking, swimming, etc). If you’re not exercising, then just experiment with small amounts and gradually work your way up. This is another area that it is important to consult with a professional on. I do an exercise vlog post every 3 weeks, and I did a full podcast episode on exercise too.
Spend some time outdoors. Interestingly I just did a post on this last week that got very few views despite the fact that there is again science supporting how much this can benefit both our physical and mental health. Step away from the city if you can, even if just a few hours. Take the opportunity to breathe in fresh air. Tie it into exercise by going for a walk. Tie it in to stress reduction and just let yourself be. Though I don’t have an episode specifically about this, there is a podcast on holistic approaches that ties in nicely.
Exercise and spend time outdoors (my solo trip to LA, 2018).
Reduce your stress. Being calm, and having as little stress as possible (which I get it, sometimes just having a chronic illness is stressful!) is so important. Stress is a common cause of flares in many autoimmune diseases and in generally, always manifests into nasty physical ailments of one kind or another. This is a good reason to learn some mindfulness skills (which I do a vlog post on once a month). I did a whole podcast episode on how stress and anxiety manifest in the body as well – find it here.
Get involved in your care. This often means we have to be our own advocates for our health. That can include being a little “pushy” with our doctors (I mean it’s ridiculous that we have to sometimes but medical gaslighting is a huge problem). It also means that you may have to create a healthcare team for yourself. I’ve found this to be extremely beneficial for me. For more on getting involved check out this blog post and this podcast episode.
Reduce your stress and get involved in your care (and no this is not actually how I meditate lol)
Self-care. There are 5-6 dimensions of self-care (depending on who you ask) and physical self-care is one of them. A lot of the things from this list apply to physical self-care, but you can also add a lot more, depending on what you like – I like Epsom salt baths! I also mentioned that challenge with Shape & Foster earlier which this month is putting an emphasis on physical self-care. Hear more about them on the podcast. I do monthly premium blog posts for self-care which you can sign up for here.
Goal setting. No one can be expected to make any changes to any part of their life – including the physical aspects – overnight. That’s why setting goals can be really helpful. If you’re not currently exercising, then committing to 3 1/2 hour walks per week might a good place to start. Or increasing your veggie intake four times a week. Or spending time outdoors once a week. Whatever it is, make a plan and make it one that is challenging and yet you can stick to. I recently did a blog post on goal setting. This is the podcast episode it ties most nicely in with.
Spend time on self-care and set some goals (my goal to be a llama – jk!)
Okay, this was a longer post than normal but I hope you have a few takeaways! Keep making the most of it everyone!
I can’t overstate how important sleep is to daily functioning. For everyone, and definitely for those of us with a chronic illness. I know I’ve written about sleep before, and honestly, that is because it is that important. I wish I was one of those people who could function after 4-5 hours of good sleep. How amazing would it be to go to bed at midnight and wake up at 5. All the things you could do with the day. Alas, that is not the case for me or probably most of you, so I suppose it is not worth dwelling upon.
Spike was a pro at sleeping.
I will admit that I have not been sleeping well lately. And by lately I mean since my hip arthroscopy four weeks ago. Poor sleep is something I’ve experienced before. Waking up in the middle of the night because of pain, or not being able to get comfortable during the night because of pain. Anyone else with chronic pain experience this? I’m betting I’m not alone. The past four weeks have been slightly different. Yes, initially there was some pain from the surgery, and my hip was swollen, so it was difficult to shift around at night. I like to switch sides during the night, and occasionally sleep on my back or stomach as well. Immediately following surgery I could only sleep on my back. Then about two weeks later I could also sleep on my right side. The past few nights I can get onto my left (side that had the surgery) but only for short periods before I get uncomfortable. Technically my sleep has been improving the past few nights, but not to where I’d like it to be.
This giraffe looks like it’s in sleep mode!
Why is sleep important? Well, for one it can actually help with chronic pain. The better the sleep you get, the less pain you can experience during the day. It also helps with fatigue. That’s not to say your illness won’t make you tired during the day, but at least you won’t be starting off the day exhausted. And of course it is important for your mental health. You’ll be more alert, feel more positive, and likely have at least a bit of extra energy to do some of the things you enjoy during the day (self-care!).
Napping outside it always good! (as long as you’re wearing sunscreen).
So how can we improve our sleep, especially in situations where we are limited in how we can sleep (i..e, position)? I think the best way to go about it is just to make sure our sleep hygiene is as good as possible and that we are taking care of all of our medical needs. Sleep hygiene means we don’t drink anything 2 hours before bedtime (except for sips of water), drink caffeinated beverages after 2pm, exercise at night, do anything in our beds except sleep or have sex, and try practices such as meditation or having a hot bath in order to relax at night. As far as medical care goes, have we taken all of our medications as prescribed and at appropriate times? Have we taken any alternative medications (like marijuana or CBD oil for example) that can help with sleep? Can we sleep in if we need to? I know the last one is hard, especially if we have other responsibilities. Initially post-op I gave myself permission to sleep in (basically up until two days ago when I started setting an alarm again). Give yourself permission to do what is best for you and your health needs, because you can’t take care of your other responsibilities if you don’t!
As much as I like hammocks, I think just relaxing in them works better for me than sleep (Costa Rica throwback).
I would also add that consulting with your healthcare team might be useful as they might be able to suggest other strategies, techniques, supplements, etc to help you. Personally I would be wary of sleeping medication as it can be addictive but ultimately that choice is your own. I hope your sleep improves if you’ve been struggling. Feel free to share your own strategies, by commenting! Keep making the most of it everyone!
Chronically Living 