Yesterday was boring.
By that I mean, ordinary.
It was an ordinary Saturday. Like the weekends I remember. From our life before.
Here’s how it went:
We woke up early.
Noted that the #3 kid will likely have purple hair the next time we see her, based on the state of the bathroom.
Went back to bed.
Woke up later. Drank tea and bone broth. Put together a menu plan for the week (using the Healing Kitchen our new favourite cookbook). Wrote grocery lists.
Did house stuff.
I went to yoga. Matthew did the first wave of grocery shopping.
We made brunch. Here it is:
The teenager awoke: purple hair confirmed.
She went out.
We made tea in go-cups and drove to the beach. Watched the water and talked about nothing in particular.
Did more grocery shopping.
Bought water containers at Canadian Tire for our update-the-emergency-kit project (because Fort McMurray).
Came home. I filled up the containers with water and stashed them.
We made supper. Here it is:
While eating, we watched the new episode of Peaky Blinders.
Played scrabble with the #3 kid when she got home.
Went to bed.
Are you still with me?
After 28 months on the AIP, Matthew went back to work. After 29 months, we had our first boring day.
It was wonderful.
Matthew returned to work this week.
When he took disability leave at the end of 2013 we thought he’d never work again.
At that time, he was taking 6-8 hydromorphone painkillers a day, as well as a high dose of Methotrexate by injection weekly.
He had developed severe and disabling nausea that no one could diagnose.
Now, the pain and nausea are manageable and he is medication-free, except for a few Tylenol Arthritis a week.
That sounds dramatic, and it is, but there were many times during the past 28 months when his health didn’t seem to be improving at all. And times when it was definitely getting worse rather than better.
But all of his autoimmune symptoms have gradually improved, and he is now in better health than he has been in eight years.
Back to Work
We honestly weren’t sure how the back-to-work experiment would go.
When he initiated it, he was partially bluffing. Continue reading
Many people who improve their autoimmune symptoms want to share what they have learned, so others can benefit too.
Most people just start a blog.
Vivek Mandan is creating Autoimmune Citizen Science, a free site that will enable anyone with an autoimmune condition to track personalized data to support their healing process.
Vivek and his team are looking for testers for the beta launch of their site this Spring. I’ve already signed up. Anyone else who is interested in the potential of measurement as part of their recovery will want to scoot over to Autoimmune Citizen Science to sign up as a beta user, too.
Consider this post to be your personal invitation from Vivek!
This month, I interviewed Vivek, who is 24 and lives in Ohio, USA, to find out more about his experience with autoimmune disease and about his vision for how Autoimmune Citizen Science could change the way we research and treat complex chronic health conditions. Continue reading
Matthew and I started measuring because we didn’t know what else to do.
We didn’t know we were measuring his recovery, because his health hadn’t started to improve yet.
Research and evaluation are part of my trade, and Matthew has a background in Continuous Quality Improvement, so when we’re in doubt: we measure!
And we were in a lot of doubt.
Why Measure Health?
Measurement can seem superfluous when you are really close to your experience.
Especially if the numbers don’t change from day to day.
Or if they swing around wildly for no obvious reason.
But if you stick with it, measurement can be incredibly useful as a way to discern trends and track progress over time. In fact, measurement can be a way to begin the process of recovery. Continue reading
I have a new crush.
I get them. Big intellectual crushes. On people who are doing really innovative work in the field of measurement.
I have a long-standing crush on Michael Quinn Patton, originator of Developmental Evaluation.
My new crush is Dr Skye Barbic, who has created the Personal Recovery Outcome Measure (PROM). I spend a blissful hour and half this week learning all about it.
The PROM questionnaire is designed for people who are recovering from mental illness. But it can be used by everyone.
In fact, I think it should be used by everyone.
The World Health Organization (WHO) defines mental health as “a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community.”
Clearly we don’t need to be recovering from a debilitating mental illness to be pursuing improved mental health. In fact, the WHO definition for mental health could be the definition for purpose in life.
The PROM questionnaire is designed to help anyone realize their potential and cope with stress. Continue reading