Spoonie Stress

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!

Pain Scales – The Enemy of Chronic Pain Warriors

Literally my least favourite question when I go into any doctor or specialist appointment is, “what is your pain like today?” or “on a scale of 1 to 10, 10 being the worst ever, how’s your pain right now?” To someone with chronic pain, these are the most useless, arbitrary questions. Here’s the thing, I understand why doctors and other healthcare professionals ask the question. They want to get a gauge on if your pain is better or worse than it has been in the past. It totally makes sense. However, there are a few things about chronic pain (and pain in general) that aren’t taken into account with this questions.

  1. My perception of what a “10” is may be higher or lower than your perception of what that is.
  2. I’m not always entirely sure what number I should give. Like really, what is the difference between a “6” and a “7”?
  3. Often pain changes throughout the day, so just because I give it a “4” right now, doesn’t mean that it won’t be an “8” in half an hour.
Hm… I’m smiling and happy in both pictures and yet my pain is a “0” on the left, and a “7-8” on the right.

And yet, this is always the first question asked at any appointment. Sometimes I literally just want to say “I don’t know.!” How many of you feel this way to? Plus, sometimes there is this need to want to give a higher number so that the pain is taken more seriously and not just dismissed. Here’s the thing that healthcare professionals often miss – there are better ways to describe pain than using a 1-10 scale. For example, “what type of pain are you experiencing/do you experience?” “What times of day are worst for pain?” “What activities or circumstances do you notice more pain or less pain?” “Are there any points in the day when you feel little to no pain?” And so on. These questions are easier to answer, and honestly, give a more realistic perspective of my pain than me guessing at a number to give my doctor.

Just gonna throw in the random deer visiting a retirement home across the street from me.

The main model used in medicine (and psychology) right now is the biopsychosocial model (except sometimes doctors forget to use it when talking about chronic pain it seems). For those of you not familiar with this, it is the interplay between biological and psychosocial causes (or maintenance) of a medical (or psychological condition). When applying this model to chronic pain, we look at the biological causes of an illness or injury, and how psychosocial factors maintain or increase the physical sensations of pain. It’s that mind-body connection. Here’s an example: the hypothalamic-pituitary-adrenocortical (HPA) system in your brain has been associated with several chronic pain syndromes including fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, and MS. It is one of the biological causes of pain (though not necessarily the only). Psychological factors that can maintain or increase this pain include feelings of helplessness and hopelessness. Social factors and behaviours that maintain and increase pain include door diet and nutrition, lack of exercise, and substance use (including smoking). Stress is another major psychosocial factor associated with chronic pain. So, rather than asking what are pain is on a scale from 1-10, looking at these factors is likely more productive in both understanding and managing pain!

Image from: https://www.practicalpainmanagement.com/treatments/psychological/biopsychosocial-approach
The paragraph on the biopsychosocial model is cited from this article.

Let’s talk about pain management. Whether you do this on your own, or with the help of your healthcare team, here are some ways to improve your pain management (because let’s face it, chronic pain is unlikely to magically go away):

  • medication compliance – taking all medication as prescribed!
  • addressing psychological factors – such as anxiety – this could be through relaxation and meditative techniques or even exercise, or going to see a psychotherapist
  • utilizing interdisciplinary healthcare teams – do you have a family doctor? A specialist for your illness or injury? A psychotherapist? A physical and/or occupational therapist? Anyone else who can help you with your pain? (I also have a naturopath and chiropractor for example).
Make a therapist part of your healthcare team! We’re here to help!
(just noting that I’m a therapist-in-training right now)

For anyone reading this who is not a chronic pain warrior, please remember that pain isn’t in our heads, and telling us to just deal with it isn’t helpful. In fact it can be stigmatizing, and people with chronic pain always face stigma because of a lack of understanding. We may laugh, smile and have fun, and yet be in pain at the same time. The things are not mutually exclusive. I’m going to link a few episodes of my podcast that complement this post below. For now, keep making the most of it everyone!

Mental Health and Chronic Illness

The “I Suck” Feeling

Locating Our Inner Strength

How Stress and Anxiety Manifest in the Body

Holistic Approaches to Chronic Pain

Self-Development

Normally at this time of year I do a yearly recap and/or setting goals for the new year, but seeing as 2020 did not turn out how anyone expected, it seems unnecessary to recap and hard to want to set goals since we have no idea what’s coming (not that we’ve ever had an idea but there was more optimism in the past). By the way, if you want to watch an extremely funny take on the past year check out “Death to 2020” on Netflix – satire at its finest. Here’s the thing though, I don’t think personal development has to stop because things aren’t going well in the world. At least it doesn’t stop for me. Sure, some things were completely derailed because of the pandemic, and some more so for some people than others but I don’t want to stop living to the best of my abilities, do you?

I read an article on Global News this morning, indicating that 40% of Canadians have been struggling with mental health and/or substance abuse issues since the beginning of the pandemic (and about 30% with weight gain). Interestingly the normal yearly prevalence rates for mental illness in Canada is about 20%, but the lifetime prevalence is 50% (Canadian Mental Health Association, 2020). Our yearly rate is definitely up, and only time will tell how the lifetime prevalence will be affected. I think it is safe to say that this year we all should focus on our mental health. Whether that means going to therapy (check your area for free counselling options or therapists will sliding scales), utilizing crisis intervention services, or just enhancing our self-care practices to try and keep ourselves as feeling as good as possible, we all need to do something. In terms of substance abuse, it’s important to monitor how much you’re drinking and do the occasional detox/cleanse is probably a good idea. Finally, if you’re concerned about your weight, try to come up with ways to exercise at home (I’ve done a lot of this and post a workout video every 3 weeks on this blog).

At home exercise can be as effective as at the gym exercise.

So, in a sense, we kind of do have some goals for this year that are totally realistic, regardless of what the year has in store for us. For chronic illness warriors, I’m adding one additional, totally realistic goal as well. And trust me, I’m going to do these with you as well.

  1. Prioritizing our mental health: therapy and/or crisis intervention services AND self-care (if you can subscribe to my premium posts, they are all about improving self-care).
  2. Watch how much we are drinking: go a week here-and-there without drinking at all; monitor what you do drink; and try not to drink too much. I find tea in the evening is a good substitute for a drink.
  3. Keep in as good of shape as we can: my chiropractor told me he thinks my recovery from surgery has gone so well because I was in good shape before my surgery. Eat healthy and find creative ways to exercise at home!
  4. Continue to monitor and prioritize your illness: go to your doctor appointment (virtually if necessary), take your medications, utilize any other health services you have, and rest as needed.
Self-care can be anything you enjoy doing, that makes you feel good, and it is essential for mental health.

I’m going to link some podcast episodes for you to listen to when you get a chance in order to help you with these goals:

The best goals are SMART – specific, measurable, attainable, relevant and time bound – so remember that when actually making your goals for the year. For example, my goal for mental health is: Do one self-care activity every day for at least 5 minutes, 7 days a week for the whole year. If you need help creating some of these goals, feel free to reach out.

Take care of yourself this coming year, and keep on making the most of it.

Surgery & Post-Op World

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).

My sexy hospital bracelet.

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.

And my sexy post-op selfie.

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.

Is everyone else singing, “Vanilla Ice, Ice, Baby…”

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.

I’m quite impressed with my breakfast abilities this morning!

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. 🙂