Response to a Petition Against the NICE guidelines

Okay so I’m going to acknowledge that this blog post might be a little divisive. But if I look around at our society right now, most issues regarding health are. This is probably more of an opinion piece than many of my posts, which I do research (yes, I read scientific journal articles to make sure I get the facts as straight as possible for all of you). I did a post (and a podcast episode) about the guidelines that came from NICE in the UK regarding the treatment of chronic pain awhile back. These guidelines were controversial within the medical community itself because, well, they recommend against the use of pain medications due to a lack of evidence that they are effective AND that many of them can be addictive. Doctors, of course, like to prescribe medications.

The recommendations for the treatment were: (1) exercise, (2) acupuncture, (3) cognitive behavioural therapy, (4) acceptance and commitment therapy, and (5) anti-depressants. I recently saw a post on Instagram that linked a petition against these guidelines. The reasoning behind the petition was that it makes it harder for people to get the treatment (i.e., medications) that they need to manage their chronic pain. Much like doctors, most patients also feel like medications are the way to go (which is a fairly western version of pain management – check out the podcast episode with Dr. Richard Harris for an East meets West version of pain management that tends to work better). Now, I’m not saying that pain medication doesn’t work for anyone ever. And I don’t think that’s what they guidelines are saying either. They are saying that the evidence-base isn’t strong for most of those medications, but it is strong for these alternative treatments. The other argument in the petition is that the alternative treatments are expensive and not covered by insurance. I’m going to break each of these arguments down a bit further.

Me during a hike this summer.

So first, whether or not people will still be able to access pain medications. Regardless of these guidelines I find it very hard to believe that most Western doctors will stop prescribing pain medications. Like I mentioned earlier, most doctors were upset by the guidelines in the first place. Also, doctors are trained to prescribe medications, they aren’t trained (literally almost no training) on prescribing alternative treatments. It’s more than likely they’ll go with what they know. They might though be more willing to recommend alternatives as adjunct treatments. This is actually what my rheumatologist did. She recommended that in addition to the medications she prescribed, I seek out alternative treatments such as physiotherapy and naturopathy (and I did and they were helpful). I get why people are upset about the guidelines, especially if they mostly rely on medications. The guidelines do state that for some conditions (mostly CRPS) pain medications do work best (it’s best just to read all the guidelines – AND all the hyperlinks that give fuller explanations yourself – available here).

The second point that alternative treatments are expensive, is true and not true at the same time. Exercise is technically free. I exercise at home – both cardio (walking) and strength training (body weight) and have spent $0 on it since the pandemic started (I did go to the gym before that). But a lot of people with chronic pain are hesitant about exercising (check out the podcast episode with Dr. Frank Nahn). Acupuncture can be a bit pricey depending on where you live, but it is sometimes covered by insurance. I had insurance through work that covered my naturopath, who did acupuncture, for up to $500 a year. That’s about 6 sessions. I’m not saying it’s always covered, but it might be. CBT and ACT, the two psychotherapies listed are along the same lines as acupuncture. They might be covered or they might not be. In the province (Canada) that I live, it is covered up to a certain amount by provincial insurance, or short-term therapy is also covered by the provincial government. There are also self-help versions of these available at bookstores and online. Finally, anti-depressants, again may be covered by extended health insurance if you have that. Also, wouldn’t a better petition to be to try and get governments (or insurance companies) to cover these services for chronic pain and chronic illness patients? Just a suggestion…

As a therapist who went into the field to help people with chronic pain and illness (and their co-occurring mental health issues I decided to primarily use ACT with my clients due to its large evidence base).

I guess what I’m saying is that if you dislike the guidelines because you only rely on medication but also haven’t tried or even looked into these alternatives, then it makes sense that you’d be upset. I would be too! I started using some of these alternatives (exercise, acupuncture, CBT/ACT) long before these guidelines came out and I saw how much they improved my well-being, well over and beyond what my medication has ever done. I also find it interesting that I often see posted online people complaining that their medications aren’t really helping. It’s easy to have some cognitive dissonance here. We want to believe medications will solve all our problems even when we’re acknowledging that they’re not. I’m doubtful that I’ll change too many minds with this post, but my hope is that we at least get thinking about using both holistic approaches (like in NICE’s guidelines) and are medication together so that we can get the best results.

Okay, that is all for this week. Keep making the most of it everyone!

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Daily Stretches: Shoulders

This week I decided to share with you some stretches that I like for my shoulders (that also give a bit of a stretch in the upper back and biceps). Stretching is so important, so I encourage you all to incorporate more of it into your lives. As always, please consult with your healthcare professionals to ensure you are doing stretches properly and safely.

Take care and keep making the most of it!

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How Do I Become a Castle with My Boundary Setting?

A lot of people struggle with boundary setting in their relationships. I often see people complain that their family members don’t treat them well, that their spouses don’t, and it seems all the worse for people with chronic illnesses. And actually, that is part of what Gabor Mate says in When the Body Says No. Boundary issues are common within families, and perhaps are part of the “social” part of the biopsychosocial aspect of disease.

And look, I’ve been there. Though I have good boundaries with my family members, it’s often because I set them. For example, I tend to not talk politics with some of my family because our differences in views were causing me stress (and stress is bad for chronic illness!). I do sometimes still struggle in romantic relationships and friendships. Setting a boundary means being assertive, and sometimes that pisses other people off, especially if they’ve gotten a way with violating that boundary for a long time. As chronic illness warriors we need to get good at setting boundaries as part of our self-care. Here is one way of thinking of boundary setting.

De-stressing does not just mean bubble baths…

Imagine that you are a castle, and the boundary is the personal space that you are placing between yourself and other people. The walls of the castle show that personal space. The moat lets other people know how close they can get to you, and in this case it can change size depending on the person and/or situation. The draw bridge itself is what allows people to get in, and keeps people out. This draw bridge helps us to feel secure. The castle guards are the actual skills we have to protect our boundaries. They can also help us when someone crosses our boundaries. And it’s important to remember that boundaries can be verbal, physical, emotional or spiritual.

This is the image my practicum site gave clients when we gave psychoeducation on boundary setting.

So how do we exactly do this? Well, short answer is to say no, resolve conflicts, follow our values, be assertive, and express our needs. But that is easier said than done. Saying no and being assertive both require practice, and if we’re nice (which most of us with chronic illness apparently are), it’s super difficult to do these two things. If you have a therapist, then that might be where you practice these skills. Otherwise, it’s easiest to start with boundaries that aren’t going to upset the other party as much. The other pieces of this: resolving conflicts, following our values and expressing our needs can be handled with some self-exploration, by answering the following questions for ourselves:

  • Who are the most important people in my life?
  • Who is there for me when I’m struggling?
  • What are these above relationships like for me?
  • What are the positive things I get from this other person?
  • What are the negative things this other person says or does? And how does that affect me?
  • What do I want to get? And what am I willing to give?
  • What have I tried already in regards to boundary setting and how has this worked for me?

Once we’ve done this, we have three options:

  • Leave or end the relationship.
  • Stay and live by our values: change what we can (remembering that we can’t change other people’s behaviour) and make some room for things that we may not like (that aren’t in dire need to change)
  • Stay and give up acting effectively – which is all to common an occurrence
How I look when I set some boundaries…

The more you practice setting boundaries, the easier it will be. It will also start to reduce your stress, which means you may start to see an improvement in your symptoms (be it physical or mental health), and are more likely to improve your well-being. Let’s keep making the most of it everyone!

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Daily Exercise: Mini Golf

Sorry about the sound quality. It was raining and the mini golf course had a fountain nearby.

Who says mini golf isn’t exercise?! Any kind of movement, especially if you haven’t really been doing any because of your condition, is good movement! So let’s keep it fun and easy and just take our exercise regimes one step… or one put… at a time. Please consult with your healthcare team before starting any new exercise. If that made you laugh, then check out this podcast episode on how humour can improve your well-being when you have a chronic illness. And of course, keep making the most of it!

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Book Review: When the Body Says No

If you haven’t heard of this book and you have a chronic illness you need to get in the know. And to be fair, and I hadn’t heard of the book until about a year ago, and I didn’t actually read it until recently. The author I had heard of. Dr. Gabor Mate. He has written several books over the years on topics ranging from chronic illness to substance abuse to ADHD, and he’s quite well-known in both the self-help and medical communities. So, now that I’m done reading this (must-read) book, let me share some thoughts and opinions, and hopefully help encourage you to also give it a read.

It’s available at all major book sellers
(I got mine from Amazon)

First, for those of you unfamiliar with Gabor Mate, he is a Canadian (now retired) doctor who spent his career in family practice, palliative care, and working with people who use substances in Vancouver’s East End. And he’s touted as being an expert in these areas. The book, When the Body Says no is about how “stress” influences chronic illness. Now, stress encompasses a lot of things here, which is why I put it in quotations. It includes life stress, attachment, coping styles, trauma, adverse early childhood experiences, adult relationships, and so on. Basically a lot of stuff, though Dr. Mate posits that it’s our early life stresses that have the greatest impact on us. The book takes a biopsychosocial approach. This means it includes biological, psychological and sociocultural influences on health and illness. This is the approach that science is backing when it comes to both physical health and mental health (literally my first class in grad school was “A Biopsychosocial Approach to Mental Health”). What’s interesting, if you go online to research most illnesses (come on, we’ve all googled our actual illnesses, as well as other potential ones) usually only biological causes are listed. And I will agree with Dr. Mate, that biological causes don’t tell the whole story (and neither to strictly psychological or sociocultural). For example, he writes (based on scientific research) that some people with biological markers for illnesses never actually develop one. Why? If it was strictly biological then everyone with the biological markers would clearly develop it. Again, there is more to the picture.

Like I said, I agree with a lot of the content in the book. I mean, many autoimmune diseases are diagnosed after a person has gone through a stressful experiences. It makes sense that the body would take on what our minds don’t want to – such as a repression of emotions. And clearly trauma can manifest in many, many ways (illness, substance use, psychiatric disorders, etc.). Many people will read the book and find themselves very well represented for whatever illness they have (and he covers a lot of illnesses from cancer to a variety of autoimmune diseases to Alzheimers and so on). My only problem with it is that he asserts that attachment issues (to parents) are the #1 determinant of illness, and that virtually all people with illnesses have more than one of these issues. And this is where I didn’t find myself represented. My attachment style with my parents has always been healthy. My early childhood experiences were really good. In fact, the first trauma I suffered was ongoing between the ages of 8-13 (being bullied at school). At the time, yes, I did probably repress a lot of my emotions, but as I got older, and certainly by the time I was diagnosed with my illnesses, and I was not repressing emotion (at least as often) anymore. Now, that being said, maybe all it took was that experience to account for the psychosocial part of my illness. I can’t say either way, but regardless I don’t feel I perfectly represent the picture Dr. Mate paints in his book, though I can appreciate that a lot of people do.

My brother and I, circa 1988-89.

All of that said, I do highly recommend reading this book if you have a chronic illness OR if you have a loved one with a chronic illness. It gives insight into the causes, which some people find helpful. And if you’d rather live in the here-and-now, rather than try to decipher what caused your illness, the last chapter is called the “Seven A’s of Healing” and it really resonated with me, because for the most part, it is exactly what I work on with clients, and it is strongly evidence-based. So, go read When the Body Says No, it’s definitely worth it.

My podcast episode this week is on Creative Hopelessness, so if you’re finding it difficult to make changes in your life and/or you’ve been feeling hopeless, please check it out. Until next week, keep making the most of it!

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Daily Mindfulness: Self-Compassion

One thing most of us don’t seem to do enough of is self-compassion. As children we are taught to be compassionate to each other, but rarely are we told to turn that compassion inwards. In this practice, we use our hands to help draw some kindness, compassion and love into ourselves. We truly can never be compassionate to others if we aren’t compassionate to ourselves first.

Be compassionate to yourself this week and keep making the most of it!

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Was My Hip Surgery Worth It?

This is a bit more personal of a post than I’ve written for awhile, but I thought it would be important to share my thoughts and feelings about the subject. As some of you may know (if you’ve been a reader of this blog and/or have followed me on social media for awhile), I had a hip arthroscopy to repair a labral tear on my left hip last November.

Post-surgery selfie.

The surgery lasts for about 4 hours, is totally laparoscopic. I was extremely nauseous coming out of the anaesthesia which is no fun. And then there is the recovery period. The first 6 weeks you can’t put any pressure on that side (so again, for me it was the left) so I had to use crutches to get around (which was exhausting, especially because I live alone – though I did have some friends come to help throughout). You also can’t bend at more than 90 degrees during those first six weeks, and obviously, no exercising that hip. (I found some chair workouts to at least get some upper body exercise).

My very tiny scars have faded quite a bit since the surgery.

Then after the 6 weeks, you can start walking again and bending, but no “exercise” for 6 months. And by that I mean there are some physio-approved exercises including light walking and recumbant bicycling as well as specific strength exercise for it, but overall it is pretty limited. And for me, well I help my other UCTD and fibro symptoms with exercise, so being limited is not overly helpful.

Me trying to walk for the first time in 6 weeks.

Recently someone posted in an online group that I belong to, that she was diagnosed with a labral tear and was still undergoing testing for autoimmune diseases. She was asking questions about the tear and treatment options including surgery. Someone else responded to her post saying that she was told by her rheumatologist that labral tears (which can occur in almost any joint) are common in people with lupus and other connective tissue diseases. (Mind you my rheumatologist and orthopaedic surgeon said nothing about this). In my own research I had found that people with fibromyalgia tend to have much longer recovery times from the surgery. In my own experience, I realized over the summer that the pain in my left hip had returned. Not nearly as badly as it used to be, I mean I can sit (including cross-legged) for much longer than I used to be able to, but it was back nonetheless. This leads me to believe that (a) I re-tore the labrum, or (b) it just never healed properly. So that’s what I responded to this other woman’s post.

Still wondering how I survived on crutches for that long.

So, was the surgery worth it? Would I do it again? I don’t know to be honest. Perhaps not. At this moment if someone said to me, well we can go in and fix it again, I would definitely decline. So what I learned, and I suppose what this post is about, is to do A LOT of research before committing to a surgery that some doctors think will help. Unless they are making specific connections to your illness overall, something like this which is elective (because the other treatment option is physical therapy), I would say do not jump into it. I thought I had done my research but I probably didn’t do enough. That being said, I am self-compassionate and acknowledge that I made a decision based on the information I had, and that’s okay. And I choose not to forget that it perhaps did improve the quality of my life in the long-term (remember, I can sit longer now, and as a therapist that is super important). Just many things to consider.

Thanks for reading everyone, and keep making the most of it!

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Daily Yoga: Hip Openers

This week we’re doing some more yoga postures that I absolutely love for the hips: reclined butterfly and a butterfly forward fold. I find they help with a nice stretch in my hips, which is something I need. As always, please consult with your healthcare team before making any lifestyle changes, such as adding yoga. If you already do yoga, I’d love to hear if you like these poses or what poses you do. Until next week, keep making the most of it everyone!

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What’s the Matter? —> What Matters to You?

When you have a chronic illness, there is always something that is the matter with yourself. I have chronic pain every day, throughout the day, that ranges in intensity from a 1 to an 8 (though it rarely gets to an 8 nowadays). I can get tired easily, have the occasional brain fog. All that kind of stuff that comes with having UCTD and fibro. I also have to wear glasses or contacts, and not use cold medications when I have a cold because of my glaucoma. But I feel like I have choices. Give in to all of this stuff that is “the matter with me” or do what matters to me. I’m not saying that this is always an easy choice to make, and sometimes we do have to “give in” in the sense that we have to have balance where we take care of our needs, though I posit that doesn’t necessarily mean fully giving up on what matters to you.

Spending time with family is definitely important to me.
(Vienna, Austria, 2017)

What this is called is values-based living. You’ve probably read this on this blog before, and heard about it on the podcast if you listen to that too. It really has two parts. First, values. Second, committed action, which yes, even as Spoonies we can do (it’s about allocating the spoons wisely if you like that metaphor). I read a post in a Facebook group recently about someone asking how others with autoimmune diseases manage to go on vacations. They had recently gone on a weekend trip with family and really struggled. I replied that I have gone on trips with my family (Europe), friends (NYC, Europe, Costa Rica), and 2 solo trips (LA, Vancouver), since being diagnosed. Travelling, and adventure/exploration are part of my values, so I’m not letting my illness dictate this part of my life. However, I do plan appropriately, alternate high activity days with low activity days (think going ATV-ing one day, and then lying on the beach the next), and I only go with people who are considerate about my illnesses. But let’s back up for a minute.

ATV-ing in Costa Rica (2019) aligns with my value of adventure!

We need to start by clarifying our values. “Values are words that describe how we want to behave in this moment and on an ongoing basis. In other words, values are your heart’s deepest desires for how you want to behave – how you want to treat yourself, others, and the world around you.” (Russ Harris, ACT Made Simple). I have many values including compassion/self-compassion, trust, loyalty, health (I know that may sound weird to say considering my health conditions, but taking control of them as much as I can falls into this for me), and so on. There are lots of ways to figure out your values. I often give my clients values checklists with a list of ideas. You can also think about your character strengths:

  • what strengths and qualities do you already have?
  • which ones would you like to have?
  • what does all of this tell you about what is important to you?

I also like the magic wand question:

  • Let’s say I have a magic wand and when I wave it all of your painful thoughts, feelings, memories, and sensations stop being a problem for you. What would you do with your life?
  • What would you start, stop, do more of or do less of?
  • How would you behave differently?
  • How would others know (i.e., what would we see and hear) that things were different for you?
Image from: http://blog.theaawa.org/3-steps-to-finding-your-orgs-core-values/
I would add authenticity, challenge, contribution, creativity, determination, friendships, growth, happiness, kindness, meaingful work, optimism, openness, resilience, and self-respect to the list I’ve already mentioned for myself.

Once you figure out what’s important to you, you can move on to the committed action piece of the puzzle – doing what is important. “Committed action means taking effective action, guided and motivated by values. This includes physical action and psychological action. Committed action implies flexible action: readily adapting to the challenges of the situation and either persisting with or changing behaviour as required. In other words, doing what it takes to effectively live by your values.” (Russ Harris, ACT Made Simple). I think the last part of this – the flexible action part – is really important for Chronic Illness Warriors. There are often ways we can adapt in order to live by our values, sometimes we just have to be creative. Some of this action might actually be uncomfortable for you, at least at first. It might challenge your thoughts and feelings about your illness, perhaps even your sensations. When I was in LA on my solo trip, I decided to take a surfing lesson because I had always dreamed of doing so. Surfing is super hard! And I wasn’t very good (granted it was just one lesson) and I hit the ground under the water so many times. It was such a challenge to keep going and I was super sore after. But… it was worth it. It falls into my values (adventure, challenge) and while I may not be super keen to jump on it again (I declined taking a lesson in Costa Rica) I’m so glad I did it, and yes, it was worth being sore and tired afterwards.

Post-surfing I was sore but happy. (Los Angeles, 2018)

How will this improve your wellbeing? Feelings of accomplishment, of doing what we love to do, and keep busy with activities that engage in our values have been shown to be helpful for our mental health. And a lot of research in this area has been done with chronic illness and chronic pain. I’m not saying it’s easy, but it is worth it.

Keep making the most of it everyone!

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