3 thoughts #2: On lived experience, my album and pacing
Read or listen to my three thoughts of the week
Hi there! How is everything?
(If you’re new here I have a special welcome for you at the end).
Here are my 3 thoughts this week. You can choose to listen to it or read it.
More and more patients are writing about their experience of living with illness, we have the possibility to know much more about patient’s inner lives, what it means to live with illness, how patients manage their bodies and emotions, than we have done before, but how many of these accounts are actually read by doctors?
I’ve spent the last three years recording my album from bed and my reclinable wheelchair, and I only have one song left to record (I’ll give you a longer update on the album once I’m through recording). I’m elated!
Pacing is not just about managing your activities, it means managing your thoughts and emotions, too, because they, too, require energy — imagine stopping all thoughts, stopping all emotions, because your body has reached its limits for the day.
What about you?
Let me know what has been going on in your life — large or small or even tiny?
What do you do to find purpose in your life, despite limitations?
What is the most difficult thing you find about pacing, and if you don’t need to pace, do you have any questions about it?
I’ll see you next Wednesday with a brand new article!
Are you new here? Welcome!!
I’ve gotten a handful of new subscribers lately and I’m SO happy you’re here. Welcome welcome welcome!
Here’s what you can expect from this newsletter:
Every second week you get a blog post where I share:
The ups and downs, struggles, insights, breakthroughs on living with a chronic illness
Writings on navigating chronic illness through a feminist and anti-ableist perspective — which counters wellness culture’s incessant focus on the individual and instead looks at the systemic biases and power imbalances that prolong illness and cause stigma and trauma
Every other second week, you get a three-sentence update from me about what I’ve been thinking about, experiencing or feeling.
This is a safe space and I welcome both joy and sorrow, happiness and sadness, elation and grief as well as everything in between. Nothing is too dark or too bright here. I hope to see you in the comments.
Thank you for showing up with your wisdom as you can Madelleine. Managing emotions is a whole side of pacing I keep being blindsided by, I am mostly good at managing the emotions of being ill, after 15 years of chronic migraine, but managing the emotions of life events as well can swamp my energy reserves right when I need them most. Which creates more emotion - so unfair!
I love that more and more of us are writing about the reality of life with chronic illness. It’s a great question to ask re how many accounts are being read by doctors. One big thing I’ve noted now I’m as well as I am is that there’s been little to no medical interest in my wellness. Leaving me wondering how they can tell us what is or isn’t possible for us outcome wise? Meanwhile I’m still told that what I’ve achieved is impossible. Yet if there is no interest, how can they possibly say this with any clarity? When one of my clients reversed diabetes in 14 months the doctor simply turned around and said “I don’t know how you’ve done it”. No questions, exploration or anything. Something I hear of often in one form or another. Something that has given me a strong sense of purpose is my writing. I started this from a place of severe pain where I could only write one word at a time. Which built to posts every few weeks, now weekly blogs alongside writing books. As challenging as this has been on many levels, I feel this is the fastest way to share the kind of messages and insights we have that will help so many who are suffering and struggling. I’m really grateful for our connection and to have met on here🙏🔹