As often happens here at Puttylike, some of our best conversations begin over in the Puttytribe.
Recently, some puttypeep got into a great discussion about living with chronic illness as multipotentialites–what it looks like day-to-day, and how to navigate having less energy or capacity than you’d like, especially when you have so many interests you want to pursue.
So, we had the idea of asking the Tribe for some thoughts and tips that might help others living with chronic illness–and here they are, organized into three loose categories. We hope they help you to take care of yourself, get a lot out of your projects, and feel that you’re not alone.
1. Manage your projects and your productivity expectations
A key point for anyone with chronic illness, but especially for multipotentialites with our many passions, is to not over-exert or over-commit ourselves at the expense of our bodies. The first step is to re-adjust expectations about what you can do.
In the Puttytribe discussion, Jeff wrote: “I need to be careful not to overexert myself or I’ll be done for the day and maybe the next day too… I can still pursue a lot of my focus points and projects, just not at the same level of intensity or as much. And not consistently from day to day.”
Sarah and Gabi had some great advice for managing different projects, starting with focusing on fewer projects at a time.
“One way to decide what to work on next is to weigh up how enjoyable, how difficult, and how useful projects are. I enjoy a challenge, and in the past often chose difficult things on purpose, but nowadays it makes more sense to pick easier things so that I can still work on them even when the dreaded brain fog sets in. I have to remind myself that just because I find something easy doesn’t mean that other people do or, more importantly, that it’s not of value.…
The worst thing about having such variable symptoms is that I just never know how I’m going to feel from one day to the next, or even one minute to the next… The best projects are by far those that I can do at my own pace.”
“Lately I have put some projects away in a place where I can’t see them. If I have too many things laying around telling me they need to get done, it plagues me. If I can’t see them, I know they are on a back burner and it’s okay if they wait. Occasionally something will get moved to the ‘I don’t really want to do this anymore’ pile and it is quite freeing to let it go… I still have plenty of projects in the active phase.”
Louise and Luke reimagined to-do lists, with some thoughts to help you feel you are doing “enough,” even on days when you aren’t feeling well.
Luke suggested: “Make a done list, not a to-do list. Bad-day done lists have things like ‘brushed teeth’ or ‘stayed awake for x hours’ on them.”
“I tend to write a to-do list before bed, but I don’t put a time frame on it so if it takes a day or a week it doesn’t really matter. It also helps listing small tasks that are easier to do when i’m having a bad day. As well as a ‘done’ list, I find it helps to write down at least one good thing about the day, a bit like a gratitude journal.”
2. Small changes in your environment can help a lot
Whether it’s a rough day or a good day, doing a few small things to enliven your environment can keep things fresh and you feeling more positive.
For one, as Luke recommended: “Get outside. Even if only to take the rubbish out. Or sit by an open window and let some natural light in.”
But even inside, there are other small things that can help change up your mindset and even your whole day.
Luke also wrote:
“For me, listening to some music helps, even the radio. If you can stimulate one or more of your senses then I find that it quiets the mind a little (negative thinking, racing thoughts, etc.).”
Several folks suggested podcasts or other similar media as ways to keep our multi-interested brains active and learning in a way that’s less taxing:
As Louise wrote:
“The worst thing for me to do is fall into a day of being mindless about my time, such as bingeing on Netflix. Instead I try to work on one of my for-fun projects if I can, or listen to podcasts or TED talks that at least are a bit more nurturing for my brain fog!”
3. Taking care of your mental health is crucial
One thing was highlighted in everyone’s advice: even if your chronic condition is primarily physical, your mental health is always affected as well. Taking care of yourself includes choosing to nurture your mind.
There are many different ways to adjust your mindset, or alleviate some stress — from mindful meditation to the occasional good complaining session!
“One way that I cope is through a meditation practice that I started a few months ago…. I find that mindfulness meditation and focusing only on the current moment of what I am doing is very helpful. It turns the volume down on the regret and disappointment and beating myself up for not being as productive as I feel I should be. It turns down the volume on all of the ‘shoulds,’ gives me more peace of mind, and helps me greet the day with more equanimity.”
“I find some interest in studying science and building lists of hypotheses about what might be going on [with my health issues and their root causes]. I try to accept the limitations of the moment and take care of myself in whatever way I am able…. I am also pretty good at complaining about how bad I feel, too.”
Perhaps the most important thing to do is keep finding peace with your body, and appreciating your capabilities as they are.
“It helps to remind myself that even back when I was healthy and living a so-called normal life, I still couldn’t do everything and had to choose what mattered most. In some ways things are not really all that different. It’s just that now it’s more vital than ever that I know–and remind myself of–what is and is not important to me.”
We hope a few of these thoughts from Puttytribe members give you some new strategies to try, or encourage you to show patience and care for yourself.
One thing not listed above, but which we know matters a lot, is having a supportive community around you. As Sarah wrote: “I often need a friend (or fellow Puttypeep) to remind me to be gentle with myself.”
You’ve got a community here at Puttylike, and there are even more great conversations like this happening if you join us over in the Puttytribe.
What works for you? How do you find a balance between work, play, and rest or care, and what are things you do on the days when you don’t feel well? Share your thoughts and advice in the comments!