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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Eye Health

I truly hope most you haven’t and don’t ever experience problems with your eye health, because those just additional chronic illnesses that no one needs (not that anyone needs ANY chronic illness in the first place, but you know what I mean!). Eye health problems usually become more frequent as we age, so typically you see people fifty and older with them. I have always laughed because whenever I have seen my ophthalmologist, I’m always the youngest person in the waiting room (I’m sure my younger brother feels the same way too). Now when I talk about eye health, I’m not necessarily meaning poor eyesight and thus needing to wear glasses. That’s quite common. What I mean is having some kind of eye disease or illness – cataracts, glaucoma, diabetic retinopathy, etc.

IMG_7994 2My glasses prescription is also pretty strong but I typically wear contacts so you’d never know.

To give you some context, both of my parents have glaucoma. My paternal grandmother also had glaucoma and was legally blind for several years before she died. My father has had surgery on his eyes, and both my parents have had laser treatments and eye drops. They were also both diagnosed older. However, because glaucoma is hereditary, my brother and I have always seen an ophthalmologist so that we can be tested yearly “just in case.” For me, just in case turned out to be an actual thing shortly after my 29th birthday. My eye pressure in both eyes was too high, and I subsequently had laser treatment to bring down the pressure. I ended up having the treatment twice that summer and then it became suitable.

IMG_7995 2How I learned the basics of glaucoma back in the day – informational posters at the ophthalmologist’s office.

Now, in the 6 years since, I have not had high eye pressure again, though it continues to be monitored yearly. Cannabis has shown to have mixed results in studies using it for glaucoma but using it for chronic pain is one of the lifestyle changes I have made in the past four years. Is this helping keep my eye pressure down? I don’t know but it’s interesting to consider. Like all other aspects of my health, keeping on top of it is something I do, which is as simple as making sure I see my ophthalmologist as frequently as she suggests. Understanding anything you are predisposed to is also an essential part of taking care of your health, so getting tested regularly for those things is something I highly recommend!

IMG_7996 2Getting tested regularly for any health issues is an essential part of being a chronic illness warrior!