I'm a disabled artist with CFS/ME, a complex nuero-immune metabolic illness that causes me to be limited to my house and often my bed. Explore my life making art with CFS/ME through my blog and videos!
Nov 25, 2018 | Posted by Zeraph
For the second time this year, I challenged myself to blog daily about my experience with ME/CFS, while also trying new things to improve my symptoms every day! I did this over at my Instagram, under the tag #14DayMEChallenge. You can view my posts here.
“Challenges,” whether 7, 14, or 30 or more days, are popular right now. They often involve doing something every day for a period of time, and they can be a good way to improve a skill, build a habit, or improve yourself or the world in some way. Some people take photos daily, or draw something daily like in #Inktober; other people focus on self-care or health.
My goal in doing a ME/CFS challenge was twofold: I wanted to create a form of accountability for myself, and I wanted to benefit from a focused attempt to rest more often, which is one of my self-care goals. If you don’t know, I follow a strategy of resting throughout the day and also taking periodic rest days in a patient-developed treatment protocol called aggressive rest. Aggressive rest just means that you rest before you’re forced to by your illness.
One of the biggest changes I implemented throughout my 14 Day Challenge was to get serious about completing my daily checklist. I use an app called Streaks to manage 12 daily self-care tasks. Streaks is an iOS (iPhone/iPad) app developed by the folks at Crunchy Bagel, who by the way are super nice and have had meaningful email exchanges with me about how to improve their app. The app is a one time fee of $4.99 (I get it, that’s steep for an app) but it’s really helpful to me and it does exactly what I want it to do.
I also started using Downtime on my iPhone and other Screentime features meant to help you manage and limit your phone use.
However, I found quickly that these features don’t work that great. Screentime is super inaccurate and Downtime (a scheduled time when your phone stops letting you use apps) is just too inflexible for me. Currently, I only use the feature that limits my time on game apps and social media apps, as these seem to work well enough.
The next idea I started exploring was this idea of doing “10% better” at resting and self-care. I generally had been pushing myself to do a lot better with resting, and to be honest, I was failing… or felt like I was failing… often.
Spending time doing nothing is super hard, even if it sounds nice to think about. And I’m a very motivated person with a lot of projects going on, too.
When I was younger I was actually a trained volunteer HIV and sexual health educator, and among people who do that sort of education, there’s this idea of harm reduction. That means, basically, “We understand that human beings are gonna be human beings, and probably do things that might cause them some harm. So instead of telling them to just stop, which won’t work, we’ll give them tools to do it more safely.”
So what if we apply this idea of harm reduction to resting and pacing with ME/CFS? That’s where I came up with the idea of doing “10% better” in my efforts at healing. It’s a series of little improvements that I hoped would add up over time.
But I would have to see what happened over the course of the challenge.
This kind of led into thinking about new ways to rest that weren’t so drastic and weren’t so impossible-feeling for me. I know that resting works for me already— but I just couldn’t MAKE myself do it!
One of the things you learn with chronic illness, and with life in general, is that you can’t fight your body and win. You also can’t fight your mind. It’s kind of a “flow-with” situation. How can you accept and flow with your current mind and body in a way that supports your eventual goals?
Out of these thoughts came a new strategy of resting that I call 1/2 Hour On/Off. This means that after doing any activity for 1/2 hour, I rest for 1/2 hour. Both activity and rest are defined by me, the individual.
For me, activity might mean typing, light cleaning, using my phone, and any kind of work.
Resting meant listening to an audiobook, watching videos, or lying down doing relaxation or meditation. I found it was really helpful to give myself options. When I get antsy during a planned 1/2 hour rest period, I can switch activities as much as I need to.
For someone who is more mildly affected with ME/CFS or more severe, the meaning of rest and activity will change.
Toward the end of the challenge, I started using Flaredown app, which is a multi-symptom tracker for iOS and Android. It allows you to graph different variables against each other, including symptoms, treatments and special factors that may come up in day to day life. It’s for a huge range of chronic illnesses and conditions.
For me, the jury is still out on Flaredown. It very much feels like it will be what you make of it. It’s up to you to make sure you’re tracking the right variables and that you’re accurately recording your symptom severity.
I am always pretty unsure if I’m recording things correctly, as they may change throughout the day and I can only enter my answers once per day.
Short answer: Yes.
The challenge actually helped more than I thought it did. I had hoped to use it to build good habits and find new ways to manage my illness, but I also had a secret hope that I didn’t say much about: I wanted to improve my baseline. This is a really elusive and important goal, and one of the hardest to achieve. But without changing the baseline itself, recovery is not possible.
Mostly, I have moved my baseline through medication. I’ve stabilized declines simply through my behavior, but it’s rare to raise my baseline permanently just through my own actions. I hoped that the challenge would actually help me do that. After all, if I am going to recover, I need my baseline to improve regularly.
Through the gradual and small improvements in the challenge, I gained new tools that helped me do a little bit better every day,and over time these changes added up. In the few weeks since I did the challenge, I’ve had more energy than I have had in the last year. I’ve become accustomed to having productive time every day, and it doesn’t build up fatigue until I crash. Instead, I am mostly still fine. This is a great indicator of a shift in the baseline.
I still need to stay attentive and keep doing “10% better” (harm reduction) and doing 1/2 hour on/off days (aggressive rest). But I’m feeling more energetic than I have in a long time. I’ve had days where I’ve cleaned, organized, painted AND worked on the computer in the same way — an impossibility for over a year now.
Thanks for following my healing effort – by following my blog, Instagram or Facebook, you’re literally a part of my healing team. It wouldn’t be possible to do the 14 Day Challenges without a community of people caring, encouraging, and learning along with me.
If anything I tried in my challenge appeals to you, let me know! I’d love to know what you are trying out for yourself.
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