As often happens here at Puttylike, some of our best conversations begin over in the Puttyverse.
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 ‘verse 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 Puttyverse 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.
Sarah wrote:
“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.”
Gabi wrote:
“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.”
Louise added:
“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!
Jeff wrote:
“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.”
Darren wrote:
“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.
Sarah wrote:
“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 Puttyverse 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 Puttyverse.
Your Turn
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!
Doing/being/exploring ALL THE THINGS is easier with a community!
Did you know we have a private community of hundreds of multipotentialites from around the world? We support each other, share advice and cheer each other on as we building lives and career around ALL our passions.
Learn more about the Puttyverse and get notified next time we open the doors:
Wow!
I suffer from a sort of chronic fatigue and some other issues after a TBI. I’m already applying all of these techniques but the done list! Next step, definitely.
But I wanted to thank you because reading about you, reading that I’m not alone and that I’m already doing well gives me support and a sense of peace.
Maybe it’s helpful also to add this: once I was healthy, I was very busy, maybe too much, hyperactive, not constant, I didn’t have any patience and wanted to achieve everything immediately or even before ?. But now my attitude has changed. I know that there are more difficulties, I’m more patient, constant, able to focus, and maybe I achieve also more (of what really matters to me), so the process hasn’t be only negative, the opposite it’s true. Evolving is always the best chance we have! And it can be done almost in every condition. Thank you very much to everyone of you.
Thank you again from my heart! 😀
This is so on point! One thing that I have found I need to do – even though it is very difficult – is to stop spending my time with/around critical people.
I have so many interests and projects that I enjoy and make me feel good. But, it would seem that a lot of people only look at the things I’m not accomplishing (and comment on it) instead of everything I HAVE accomplished. This is a mental beat down.
It seems to me that non MP’s think it is a failure if a project or hobby is not completed or experienced at a certain level. I don’t believe that. Just experiencing so many things – even at a beginner level – brings me joy.
Bottom line – and I think we all know it – we have to surround ourselves with positive, uplifting people. It is very hard to distance myself from critical people that I love – but, I have to work harder at this for my own mental health.
Hey, I totally agree. I am so glad I discovered that I am part of a unique set of people. I experience the exact same thing especially from my parents. It goes like this, I’m a single mum to 3 boys, I have found jobs in and around being a mum and studying this course and that course. I have achieved so many things but hey Ibhavent for a husband or a 4 bedroom house or 2 holidays a year or a car! Those things which are important to my parents and not so much to me. I would rather take a job I totally love for basic pay than a stressful out of town job with a draconian boss breathing down my neck for a good salary. No thanks.
So when I achieve yet another accomplishment it breaks my heart when I don’t get the reaction I thought I would get, such as “well done, that’s great”, I just seem to get a flat response or one where some says “you can’t open a barber shop when you just qualified” but guess what, I did! Stuff ’em Mickey and keep doing what makes you happy x
This article is beyond helpful, and I am so appreciative! I have had arthritis since childhood, and now that I am in my late 40’s, things have become even more challenging … My typical M.O. is to push through, drag my body along, keep going, prove my worth, be productive (and I really do love physical work, despite the pain it tends to cause). Last year I had a lot of ‘sofa days’ before finally figuring out that chiropractic care would help. I have learned that ignoring the cues from my body is in itself extremely counter-productive, and yet my mind wants to be so judgmental, wanting to convict me for being so ‘lazy’. But I have to question whether that judgment is really my own or if it is perceived from a culture that seems to push for constant motion, expectation, and achievement. The suggestions offered here make me feel really understood and supported (and not alone). Thank you (all) so much …
Robin,
I feel you. After a lifetime of priding myself on pushing myself and achieving very demanding projects, now that I have a chronic illness I just can’t do that anymore. It’s a big change not just lifestyle-wise, but core identity too.
Jeff
Yes …. “a big change not just lifestyle-wise, but core identity too.” Yes (thank you). 🙂
I also have taken up the ideal of “progress = success” – at least it is a touchstone to which I can return when expectations become unruly … this was inspired by another article I had read here that talked about how success does not always have to mean ‘completion’, and how MPs may view success a bit differently than others: where success might mean ‘having gotten what you came for’. I feel this with regard to a job I left this past year and academic hoop-jumping that, while inspiring on many levels, became tedious and unfulfilling. So now, everything worth doing at any given time comes back to the “is this a fulfilling activity at this time” and also the “progress = success” models.
What has helped me most in living with chronic pain is sinplifying my life & creating flexible expectations. My filters for deciding where to invest my energy & effort are my goals & my values. I’m getting better at setting boundaries & saying no to requests that aren’t in alignment with what matters most & practicing acceptance instead of FOMO
Hi Diann,
How well written and so clearly expressed!
I really need to do a lot more of what you are doing. Thank you for your comment!
I tend to do the same. Here is how I do.
Now that I’m over 50, I appreciate space and the feeling of freedom when I start a day as a new one, in which I am free to begin any new activity :). THAT is such a great pleasure!
But as every day I have many tasks set before, I try every day to choose the ones I’ll have to finish this very day : dishes cleaning, laundry (sunny day!), professional… and the rest is free. I outline two or three things in my list, NO MORE, and I usually have accomplished them in the evening, because I didn’t bite off more than I could chew.
So in the evening, when I see my duties done on my list, I can justify to my own “inner boss demanding productivity” that everything is OK.
It took some years to be able to lower the number of “obligatory” things to do, and I’m even able sometimes to do something really important (administrative things for example) without “participating with heart and joy and curiosity and expectation of pleasure”.
I have learnt to LOOK FROM A HIGHER POINT and see how doing this administrative thing will enable me to go on with all the little passions thats put flowers in my days.
This was really timely for me – I’ve been struggling with my health recently, and haven’t had the energy to work on my projects as much as I’d like to – I’ve had a lot of bare minimums days recently. It’s started to get in my head – how will I ever accomplish anything if I spend hours resting every day?
This really helped remind me that every small step is still a step forward. And the Done List is brilliant! Even when I’m healthy I find myself frustrated at the things I haven’t done, despite all the things I was able to do!
The most frustrating thing is what to do when nothing works. What do you do when everything you’ve ever done just stops working, but there is no proof but mere conjecture? What line delineates the difference between sheer determination and obstinate stubbornness?
You’ve got to stop thinking of yourself as the expert of everything, even if it’s your own life and body. It does stuff that you have no control over, whether or not you’re even aware of that particular function. It’s about being open and receptive to the help of others. Who has your best interests at heart, who is trying to help you and what are their motivations? We have to learn to live with love and trust in our hearts, that’s for others and for ourselves. Making sure you live the life you want to be remembered for, because no matter how well you look after yourself – we all still die anyway (accidental or degenerative, they both end the same way).
I’ve been dealing with chronic illness since the beginning. It all started with physical limitations due asthma, eczema, allergies, and insomnia. Each one dealt with by itself is actually not so bad. But the combination of all 4 made many of my interests having to do with physcical workouts or games nearly impossible. But me, coming from a background of strong people, did not immediately give up and found a deep interest in weapons training. To give an example, I like to spin a staff. This particular activity is not particulary demanding which meant it would not trigger asthma. Also because it is not a heavily aerobic activity, it does not make me sweat as easily which can trigger eczema. Also, if I am tired from insomnia, by spinning the staff at reduced speeds, I can still have fun without overextending my body. Also it’s not a food, so no allergies 🙂
As time passed most of the aforetomentioned struggles decreased in severity except the insomnia. While this left a little more leeway to experiment with new physical activities, I found my mind becoming increasingly challenged. Now because of the aforetomentioned struggles, most of my interests had become mental in an attempt to adapt to my circumstances. Things like programming and building robots or mathematics and the sciences had not become some of my main focuses. Nevertheless, chronic fatigue set in and made a morjority of these things quite difficult.
In order to try to adapt to this, I would watch a multitude of videos on subjects I was interested in or used to practice. For instance: Great courses has a “great course” on oceanography which not only served as a great passtime, but was also quite relaxing due the the calm and reverberative tone of the professor.
Lessons from my journey
The main thing I learned was to never ever give up. I had projects that I had to put on hold due the strain is was causing me. If I had given up, I would have never seem them become reality, and that is a major way to challenged an already strained mental state. For instance, I wanted to make a robot. I simple little remote control driving robot. I had studied more months. I had assembled all the parts required to build the unit. But certian mental roadblocks had made finalizing the project almost impossible. Long story short, I came back to the project after about 6 months, having watched lots of videos and kept my mind undeterred. I finisehd the project in 2 days and learned a great deal in a short amount of time.
Another thing I learned is to keep the mind busy. There will be times when focusing is nearly impossible. But I have learned from experience that letting the mind slip into stagnancy due to failed expections or the like is dangerous. It makes getting back into things difficult and it makes dealing with things like fatigue very difficult. I found that in combatting fatigue, boredom, or temporary multipotentialite indecisiveness, reading up on old interests or reading about something new keeps even a mind stimulated and in a better state.
One more thing I learned is not to compare yourself to other people and to relinquish self judgement. As a multipotentialite or a person with many interests. It is highly likely that you will not achieve things like everyone else. This means that you may not progress as quickly or even as thouroghly in the same topic as someone else. But it really doesn’t matter if you are achieving your goals. For instance. Learing to program is an extensive subject matter with many things to learn and wide gaps between levels of competency. Someone who sets out only to be a programmer is going to probably begin to accel after a while simply because they are dedicating a mojority of their mental resources to learing programming. But someone like myself, who learned programming becuase he wanted to learn robotics, took a little bit longer to reach level of competency I was comfortable with since I had to diversify and learn more topics to achieve my goals. I could have judged myself an inadequate learner since it took me a while to go from learning how to having a finished product. But such a judgement is not completely applicabler or, in a sense, fair for the simple reason that me and the other persons learning styles are not directly comparable.
In Conclusion.
I think a big part of working through mental illness is staying consistent in positive thinking. There will be lots of negative inputs all around because you are not matching societies standard of output. But that information is simply unhelpful to meditate on as it does not help you deal with “your” situation. In fact, it’s best purpost may be to help remind you, that you, for whatever reason, are now a custom case and must therefore treat yourself with extra care to insure that you are in a healthy mental state. Why? Because with chronic illness, that is where the real battle is.
To anyone who may have actually read this far, I just want to say thank you, I hope this may have been of some insight, and God bless you.
TL;DR
The best ways to deal with chronic illness from my experience is to never give up, to keep your mind busy and positively stimulated, and to do one’s best not to compare (Especially as a disversified multipotentialite) and to be kind and fair in self judgement.
Thank you.
Stay focused on your goals. Realize your pipe dreams and let them go up in smoke. You’re chronic illness is not going away. There’s always the positive side to capitalize on.
I know how tough it is to put all projects in active mode and to work on all simultaneously. People often suggest doing the priority one. But for me my all projects are important and I don’t weigh my work on the basis of money or toughness or anything else but all my projects are near and dear to me. So every time I feel exhausted even though I do very less.
Some time Pressure is so much that I feel like I could have 2 brains and ten hands. To cope with this pressure I usually do small things like.
1. Feeding wild birds. I have a habit of watching birds after lunch.
2. Sometimes I get up and start cleaning and organising my desk as my desk usually have a lot of clutter like papers, markers, notebooks,books and pens used to be all over the table. I organise my table when I feel exhausted although it comes in its cluttered form within minutes again.
3. Multipotentialite usually work in a FLOW and their efficiency is good for a particular work when they are in flow but other active project creeps in and everything halts. So to deal with it they should stop doing anything or think about anything when are in a FLOW.
This is such a good article because there are so many of us trapped in chronic illness by our bodies, when our minds are buzzing round, trying to do lots of things!
I’ve lived with bipolar disorder type 2 for over 20 years. For so long I tried to ignore and deny that I have special needs as someone with a disability. I’ve had to learn was to acknowledge and forgive myself for my limitations, and celebrate and capitalize on my many strengths. Definitely going to be on the lookout for other articles like this one to provide guidance as I press forward.
I love the idea of the don’t want to do this anymore pile. I always feel so guilty when I abandon a project. This seems so much less harsh! Great article and lots of great tips. I use the done list myself and agree with Luke that even on bad days, you can find positive things to put on them – got dressed, brushed hair, talked to somebody … Thanks for addressing the issue!
Hi guys,
Get yourselves a cup of tea or coffee – this is a longie.
I’m Jo, and I always refer to myself as an artist, writer, traveller, mental health advocate, wild west and ghost nut intrigued by science and a renaissance soul with a potty sense of humour.
I couldn’t indulge in much of this because of the depression and anxiety I’d suffered after two bouts of post natal depression. I managed to be an artist and writer for much of the time because creativity IS me and I sold art and anecdotal articles.
But I found it hard to indulge in my wild west hobby (www.kitty-le-roy.co.uk) in which we joined living history camps as Kitty and Jack Coltrane (JC)- a sharp shootin’ prospector cowgirl and a quack doctor – because of depression and anxiety. But my Facebook group Kitty Le Roy’s Wild West Saloon and my wild west website helped a lot!
Travel is difficult to do with young children in tow. ( I’ve knocked up twenty countries now which I’m rather proud of and really enjoyed! Husband wants to beat that…).
Then there are all the other things I want to do: Archery. An archaeological dig. Be a film extra. Snorkel the tropics. See Alaska, south America, Australia, India…
And so on and so forth!
Five years ago I began complete recovery from thirty years of this, the catalyst being a medication crisis. At the time the situation was horrendous, and my brilliant soulmate husband, who has cared for me all these years, lived a nightmare situation for several days.
Miraculously – and it was a miracle – we were introduced to a brilliant mental health team who, over a period of three to five years, with a medication combination and cognitive behavioural therapy, brought me to now, when I’m better than I’ve ever been. Ever.
Much of my depression had been caused by my upbringing, which I had to deal with and sort out. But today I’m now starting to indulge in all those things I’ve always wanted to do.
Travel – obviously. I’m slowly returning to archery, I’m creating more, including running my blog (Creating My Odyssey, which is chronicling my wellness journey). Husband and I are going to do Steampunk (yay!). I’m still doing wild west and I’m finishing the first parts of an epic western novel I’ve been writing forever – Alias Jeannie Delaney is the life story of a devastating cowgirl who’s the fastest gun in the west and also bisexual.
Husband and I enjoy our traditional Canadian canoe, I now enjoy our narrow boat (I loved it but couldn’t enjoy it).
One of my aspirations is to be a bit of a role model for the over sixties (I hate ageism!) and I now consider myself to be a mental health advocate for those who suffer similarly.
So there you have it. I’ve found, over the years, that being a renaissance soul/polymath/scanner is what I am, and I’m really proud of that. I’ve found groups who cater to it, including Puttylike, who have tips on managing life as a renaissance soul (which I badly need because I couldn’t organise a piss-up in a brewery, as my dear old dad used to say).
If anyone fancies joining or following me, that would be epic, because I often feature creatives, renaissance souls and mental health sufferers on my blog.
Thanks so much for reading all this!
Jo Hampshire UK
Creating My Odyssey – Liberating the Real Me After 30 Years of Depression and Anxiety.
http://www.jo-b-creative.blogspot.co.uk
I love the idea on a “done list”, I feel like this is a more strength based approach, one which eliminates guilt. Thank you!
EFT ( emotional freedom technique ) tapping is a savior for me, it helps ground me in the moment and changes the channel of my mindset to a more positive place. I love all the suggestions given here, thank you!
Also, in general….Being kind to myself, eliminating comparison to others and my “old self”, having a very active gratitude practice. In addition, finding anything that brings a sense of joy or laughter every single day, this helps keeps me grounded. My wife and I have 2 solid practices that help keep the positivity flowing….a game of having to find something to share that is called “good news good news ” and “changing the vibrational channel of our emotions” ( meaning when in a funk, do something different, anything, just change the vibrational channel of your present state of being…. take a walk, take a shower, listen to music, call a friend, do some deep breathing, meditation, yoga, Watch a funny cat video… Whatever it takes, and keep changing the channel until it works ! ultimately it always does!
I needed to read this today. I’m going to change the channel right now and keep going until it works. Thank you!
Hi everyone,
I’d like to just say a word or two about how the phrase Chronically Ill strikes me. For some years I had chest pain when I exerted myself. It stopped when I slowed down or reduced my efforts.
I was this way for YEARS and despite telling my doctor about it, it was not properly investigated and more or less shrugged off by him as some kind of asthmatic problem.
Turned out that when I saw another doctor and got sent to the hospital, it was a stable kind of angina, and tests determined I needed a stent fitted in an artery that fed the heart.
Now I have a big bag of medications and I’m considered to have ‘chronic heart disease’.
But I feel more capable than I did when I thought I was healthy!
I do not feel chronically ill, yet that is the way I am viewed by the medical establishment, and that is the way I have to consider myself now. Vulnerable. More at risk than others.
It’s a bit of a mind scramble, tbh, and I’m still coming to terms with it.
Thank you so much for sharing your story! <3
Hi all.
In a world dominated by superlatives, I have found it helpful to embrace the notion that any gain is more than zero. Over many decades and various interests, I have learnt to focus on my process (the journey) rather than the product (the outcome). Every step, or line in a story is a win. On a good day, hyperfocus and flow* “buy me” a space where dis-Abilities/pain recede; on a bad day, even intervals of a few moments of respite is welcome.
“Intrinsic motivation is when you do something because you love it. Csikszentmihalyi said the highest intrinsic motivation is a flow state where self-consciousness is lost, one surrenders completely to the moment, and time means nothing” (2013).
* https://positivepsychology.com/mihaly-csikszentmihalyi-father-of-flow/accessed 3-11-2023
Flow: The Psychology of Optimal Experience Book by Mihaly Csikszentmihalyi. Harper, 1990.
Imagination is a powerful tool that can benefit in myriad situations. On bad days where the physical is heading towards impossible, or a sensory disturbance rules out lights (screen time), imagery can substitute for movement or VR.
https://appliedsportpsych.org/resources/resources-for-athletes/sport-imagery-training/ accessed
3-11-2023.
Cheers
from South Australia
Also useful since Long Covid:
How to Be Sick (Second Edition): A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers Kindle Edition by Toni Bernhard, Wisdom Publications; Revised, Updated edition (25 September 2018) accessed 3-11-2023.
About to read:
How to Live Well with Chronic Pain and Illness: A Mindful Guide Kindle Edition
by Toni Bernhard, Wisdom Publications (6 October 2015)