Video: Daily Mindfulness – Compassion with Equanimity

Added from the work of Kristin Neff.

This practice is particularly good for anyone finding themselves in a caregiving role. This may be as a healthcare practitioner, doctor, nurse, or as someone taking care of an elderly parent, a partner or child who is chronically ill, or really any other caregiving role. Sometimes the best thing we can do is offer compassion to another, while also taking care of ourselves.

Keep making the most of it!

Myths & Misconceptions about Glaucoma

The one chronic illness diagnosis I seem to talk about the least is glaucoma, yet this is the first one I was diagnosed with. I remember getting the diagnosis and being quite upset. Why? Because I was only 29 at the time. Both of my parents have glaucoma, and it runs on both sides of my family. My siblings and I have literally been tested for it yearly with our annual eye checkups since we were children (I am also the only one of my siblings that currently has glaucoma). Usually when I do mention that I have glaucoma a number of misconceptions come up for people. So, with some research, I thought maybe I could address those now.

But first, what is glaucoma? Glaucoma is a degenerative eye disease that causes damage to the optic nerve, which is required for good vision. Usually this is due to high eye pressure.

Now on to 5 myths & misconceptions about gluacoma!

  1. Glaucoma is only found in old people – so people are usually quite surprised when I tell them that I have glaucoma, and how young I was when I was diagnosed. The truth is that even babies can get glaucoma, and it can occur at any age (thus why I was tested since I was young). It does commonly run in families (often hereditary, but not always), and nearsightedness increases the risk of glaucoma (my current ophthalmologist told me I’m “extremely nearsighted” – this is true lol).
  2. If you have perfect vision, you can’t get glaucoma – not relevant to me, since I’ve wrn glasses since I was 8, and as I mentioned I am extremely nearsighted. However, upon doing some research for this post, I have learned that it doesn’t matter how your vision is. Glaucoma is known as the “silent thief” because there are no symptoms for early glaucoma. Due to that, it’s important for everyone to at least get a regular eye test (yearly) and definitely talk to your eye doctor about glaucoma.
  3. You will definitely have high eye pressure – I actually haven’t had high eye pressure since I was 29 (after a few treatments it’s been relatively stable). It’s still maybe slightly higher than most people’s but it’s very manageable. Apparently there are 2 types of glaucoma, when you have normal-tension glaucoma, you don’t have elevated eye pressure at all (perhaps another reason it’s called the “silent thief” as one of the main tests for glaucoma is to check eye pressure).
  4. Glaucoma always causes eye pain – I have actually never had eye pain from my glaucoma. To my knowledge neither have my parents (whose glaucoma is much more advanced than mine) – though I could be wrong so don’t quote me. While glaucoma can cause eye pain, symptoms do often vary from person to person so it’s not a guarantee.
  5. You will become blind – So my paternal grandmother did actually become blind from glaucoma (by the time she was in her late 80s – though she had poor eyesight for longer). Treatments, however, are much much better now. And according to ophthalmology associations, it doesn’t lead to vision loss for most people any more, especially those with “moderate” glaucoma (which I have a feeling I fall into this camp). Proper eye care (regular doctor visits) and treatment is important in preventing the disease from becoming worse.

So while glaucoma is definitely not fun and can have some not-so-great consequences, for most people – when they take care of their eyes – it’s not the worst diagnosis. For the most part I actually forget I have it. I hope this helps to clear up some myths and also, I hope this normalizes glaucoma for any other “young” glaucoma warriors out there! Keep making the most of it everyone!

Video: Passengers on a Bus (Dealing with Chronic Illness Thoughts)

Our difficult thoughts and feelings are like disgruntled passengers on a bus that we are driving. What do we do with those passengers? Is it working? What can we do instead?

Working with our thoughts is one way to keep making the most of it!

Myths & Misconceptions about Fibromyalgia

A few weeks ago I wrote about the myths and misconceptions about UCTD, one of the diagnoses I have. Another diagnosis I have is fibromyalgia. This is because some of the pain I’ve experienced is not joint related, and the best explanation that could be given for it is fibro. While there are a ton of misconceptions about UCTD, I think there may be even more about fibro, particularly from the medical/healthcare community, which is unfortunate. So I wanted to see if I can help clear some common ones up.

  1. It isn’t a real illnessalso known as “it’s all in your head” or “you’re just depressed” or “you’re just tired.” In actuality it is a real diagnosis as designed by the American College of Rheumatology. Though it can be summed up as chronic, widespread pain, there are actual diagnostic criteria for it. Part of the reason people think it isn’t real is that the cause of Fibro is mostly unknown, though there have been some fascinating studies recently about possible markers found, and there are many theories (such as those by Dr. Gabor Mate) that suggest that it is at least partially trauma-related (think biopsychosocial approach – biological causes, psychological causes, sociological causes to illness). While there are many associations between fibromyalgia and depression (fibro can lead to depression, depression can also lead to pain/fibro), there is nothing to suggest that pain isn’t real or that it’s depression or general tiredness. (It also doesn’t lead to depression in everyone, nor does everyone that is depressed have fibro).
  2. It’s a catch-all diagnosis – on a related note, many people just assume that if a symptoms can’t be explained, then it has to be fibro. While I mentioned some of my own symptoms weren’t explained by UCTD, that doesn’t automatically mean they are from fibro. There are actual diagnostic criteria such as: (1) pain and symptoms over the past week, based on the total number of panful areas out of 19 parts of the body plus level of severity of fatigue, waking unrefreshed, and cognitive problems; (2) symptoms lasting at least three months at a similar level; and (3) no other health problem that would explain the pain and other symptoms. (American College of Rheumatology) More info. Interestingly, my previous rheumatologist told me that about 1/3 of people with SLE, RA, UCTD, etc. also have fibro.
  3. Tender points are needed for diagnosis – on the final related note, this is old news. While the diagnostic criteria does state that there are 19 areas checked, and doctors may look for tenderness, that has been removed from the diagnostic criteria (see the above more info for that too).
  4. It can’t be treated (or just take some medication and you’ll be fine)also known as “alternative treatments don’t work,” “you can’t do anything about it,” and “you shouldn’t exercise.” Apparently medication for fibro only works some of the time (I’ve read between 20-40%) so while it may be helpful it isn’t the best bet. I was put on Lyrica/pregablin for fibro symptoms, and I would say it helped some. You know what helped more? All of the alternative treatments and exercise I did – massage therapy, naturopathic medicine, chiropractic adjustments, physiotherapy. In fact I managed to get off of Lyrica because of exercise. I’m not the only one either. There are tons of reports of these things being helpful. And please note, I’m saying helpful, not a cure.

Hopefully this helps you feel better about your diagnosis, and/or this is something you can show friends and family who maybe have trouble understanding what you’re going through. And most importantly, keep making the most of it!

Video: Daily Mindfulness – Your 100th Birthday

This short guided meditation can be a useful way to help clarify your values. Having chronic pain and illness sometimes interferes with us living by our values, or even remembering what they are. I find it useful to re-clarify what they are for me so that I can keep making the most of it, and I hope you can too!

Also, I just launched a side-business as a meditation teacher. If you’re interested in 1:1 classes online and self-paced programs online, check out my website – Aligning Mindfully. I also started a second YouTube channel for Aligning Mindfully with 5 minute meditations on it.

Video: Daily Mindfulness – Long Body Scans

One of the most effective practices I do in order to better cope with physical pain and other sensations of chronic illness is the body scan. The research also supports it being helpful. Interestingly it’s also been used as a meditative practice for hundreds of years (possibly longer) to help cope with physical sensations. While it can be a bit scary for chronic pain/illness warriors to go inside, the benefits can be well worth it. This practice is also great because you can totally do it lying down (as long as you’re not at risk of falling asleep). This versions is half an hour long, so if you’re not quite up to doing it that long yet, check out my meditation channel for the shorter version.

Keep making the most of it!

How to Improve Your Health through Sleep

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!):

How to Figure Out Your Values When You Have a Chronic Illness

Which would you rather do – something (a behaviour) to give yourself short-term symptom relief or something (a behaviour) that aligns with your core values, even if the goal isn’t to bring you symptom relief? The first option, by the way, isn’t necessarily connected to your values. There was a time for me that I probably would’ve done the later. Hell, I did do the latter! I definitely acted in ways that weren’t indicative to what was important to me at all but did help me out in the moment. Things like lying in bed, avoiding exercise, asking my partner to rub my back or just stay near me for hours, missing work, and on and on and on. And I’m not even saying that any of these are bad things. They were just bandaids that made that moment better, but didn’t help my pain long term and ultimately had a lot of costs (like the end of that relationship, feeling physically weak, and making work more difficult). Over time, reconnecting with my values became a much more viable response – and in some ways, even helped to decrease my pain.

What are values? They are our principles or standards of behaviour that we want to engage in. They represent what is important to us. Some examples are:

  • acceptance
  • adventure
  • assertiveness
  • authenticity
  • caring/self-caring
  • compassion-self-compassion
  • cooperation
  • courage
  • and on and on and on

Different values can also show up in different areas of our life, like work and education, relationships, personal growth and health, and leisure. Values often motivate how we behave in different situations. Sometimes we just live by our values without thinking about them. However, sometimes, when we find ourselves dealing with chronic pain and chronic illness, we can get removed from our values, like I did. There are two things we can do to figure out if we have been removed from our values while dealing with the terribleness of chronic pain and illness.

  1. Figure out what our values are – using a checklist and/or a bull’s eye.
  2. Figure out (nonjudgmentally) what “unworkable action” we are engaging in that is acting as a “bandaid” but isn’t really lining up with our values and how we want to be long-term.
Unworkable action occurs when: (a) the solution is short-term, and (b) the behaviour takes you away from your values.

Okay, but why should we do all that? You might be wondering why not just stick wth the bandaid solution. And you can. But typically we have better overall quality of life if we live by our values. We engage in behaviours that are more fitting to the person we want to be and the life we want to live. And, what research finds (plus just looking at my own life and the lives of my clients), is that pain and other symptoms bother us less. It doesn’t mean they go away, they just don’t really interfere with our lives anymore. The research finds that our self-care for our illnesses and pain improves when we are motivated by our values (everything from self-direction, pleasure, and health to responsibility and socialization). We become more willing to “make room” for our difficult sensations (and thoughts and feelings) when we live by our values.

There are many ways we can live by our values. For example, when I travel I balance the adventure/activity part with rest.

I’ve shared in a number of posts different ways that I live by my values. Here are a few consistent ways I do in my life.

  • Presence (aka mindfulness) – I meditate daily, do yoga several times a week, and just try to fully engage in as many activities during the day that I can.
  • Fitness/health – I eat healthy (gluten-free, dairy-free, meat-free – though I do allow myself some cheat days) and I exercise daily (walking and/or strength training, and/or physio exercises)
  • Creativity – I’m writing a book, I play the piano, I write screenplays with a friend
  • Adventure – I travel (looking forward to getting back to that), hike, kayak, try new restaurants, meet new people
Actively living by my values doesn’t take the pain away, it takes the hold the pain has on me away.

And those are just some ways I live by my values even with an autoimmune disease and chronic pain. It took a lot of work to get here though, so be kind and patient with yourself (hey, that’s the value of self-compassion). I hope this helps you to make the most of it!

Video: How to Survive in Quicksand

This may seem like an odd topic for a blog about chronic illness and pain, but trust me it’s relevant. The same way you survive quicksand is the same way you can learn to thrive with chronic pain. And no, it’s not an easy process, nor is it something you can learn to do in a few days or weeks, but take it from one warrior that it is possible.

The metaphor and skills are based on Acceptance and Commitment Therapy.

Keep making the most of it!

Why Are You Attached to Your Illness Identity?

How many times have you said, “I am sick” or “I am a Spoonie” or “I am in pain” or “I am depressed,” and so on? And how often do you feel that is really so? That is what you are? If your answers to one or both of those questions is “a lot,” then know you are likely not the only one answering that way. I rarely use those phrases for myself anymore because I find them unhelpful, but before you run away I want to explain why they are unhelpful. Not just from my perspective from my lived experience, but also what theories in Acceptance and Commitment Therapy (ACT) and related research suggests, particularly when it comes to chronic illness.

First I think I need to introduce you to a few terms. The first is event centrality. This can be described as the degree to which a person perceives an event (often traumatic but can also work for being diagnosed with an illness) as central to their identity. In other words, being a sick person is who you are because of your diagnosis. The second concept is the conceptualized self. This refers to who we think we are (in fancy ACT terms we call this self-as-content). The conceptualized self can take on all the identities we have such as being son or daughter, a parent, a spouse, a friend, and of course a sick person. It also includes our self-evaluations, so whether we describe ourselves as smart or dumb, happy or sad, fun or boring, and so on. What sometimes happens is that we get fused with one (or a few) of these aspects of our identity. In other words, we hold it tightly, are attached to it, and in the long-run doing so usually causes us more problems.

How do you conceptualize yourself?

Now this attachment to the conceptualized self can happen to anyone, and we often see it in depression and anxiety as well as chronic illness and chronic pain. There has been some research suggesting that our illness self-concept is a predictor of our adjustment to chronic illness. When we are attached to the identity of being ill we tend to have a lower overall quality of life. I talked about the use of language once on the podcast, and you should listen to that episode if you haven’t already. I want you to think about these pairs of phrases:

  • “I am anxious” vs. “I am experiencing the feelings of anxiety.”
  • “I am depressed” vs. “I am experiencing the feelings of sadness”
  • “I am sick” vs. “I am experiencing the symptoms of lupus” (or whatever illness you have)
  • “I am in pain” vs. “I am experiencing uncomfortable sensations”

You’ll likely notice that you attachment to that identity changes. And when we aren’t overly attached we actually can take better care of ourselves (health behaviours, self-caring, etc.) and our quality of life improves because we find we are able to do more values-based activities that we enjoy (yep, even with illness and pain). When we remove the attachment to our conceptualized self we are more willing to allow our experiences and see them as passing.

We want to have room to engage in values-based activities, because that’s what makes life meaningful.

There’s a few ways we can learn to do this. First, we can just start to notice and name are thoughts and feelings – “I notice I’m having the feeling of an uncomfortable shooting sensation in my hip” or “I notice I’m having the thought that I’m always in pain.” There are tons of ways to create some space between us and our thoughts and feelings when we are attached to them. This is just one way. The other process we can use to change this attachment to the conceptualized self is to develop self-as-context. This is what is also referred to as the noticing self. The part of us that just watches and notices all our experiences: what see, hear, smell, taste, touch, think, feel, do, etc. It’s a part of us that never changes. It’s like the sky and all of the thoughts and feelings and sensations are like the weather. The sky sees the weather but the weather cannot hurt the sky. And if you go above the clouds, the sky is still there, even when it can’t be seen. I’m going to encourage you to follow along with the video below to get an idea of what it is like to experience the noticing self.

I personally find this really helpful (and so do many of my clients) in creating a new relationship with my thoughts, feelings, and sensations, and forging out new identity, where I’m not limited by any of these things because I can notice them. They are not me. I am not chronically ill, I have the experience of having a chronic illness.

Keep making the most of it!