Self-care is one of those internet buzzwords that people casually throw around, as if a coloring book or a kitty will solve all your problems. I’m not knocking coloring books and kitties, but generally I think that kind of advice feels like bringing a cup of water to a dumpster fire.
I have a lot to cope with, and if you have ME (or care for someone who does) so do you. On top of the challenges that all humans face, dealing with ME is a daily and difficult hill to climb. My symptoms cause physical misery. My significant physical limitations cause downstream physical and emotional difficulties. Just the supposedly simple task of making sure there is food in the refrigerator takes major effort (and that’s with grocery delivery). Getting through my best day requires delicate balance, and my bad days . . . well, those are ugly.
A coloring book is not going to fix ME, but without a treatment nothing else will make it go away either. What I have learned (the hard way) is that self-care is not about making it all better. Self-care doesn’t fix anything. Self-care is about restoring our strength – physical, emotional, and spiritual – so that we can continue. I have had to think deeply about how to make self-care work for me.
Foundational Self-Care
The first lesson is always to go back to the basics. Food. Fluids. Rest. Shower. Clean clothes. In the healthy world, these are all givens and completed without much thought. For people with ME (or other chronic/serious health problems), these basics can easily be our entire effort for the day or week. The severely ill need assistance with these basic activities. That sucks. It is not fair. Our lives were not always like this. And none of that changes reality. In order to keep living, we need nutrition, hydration, and hygiene.
After triaging these foundational needs of sustaining life, there are more basics to consider. I really like Jennifer Mulder’s suggestion that we identify the basic checklist of what we need to do each day to be ok. This could mean prayer or meditation. Some people might be able to go outside for fresh air. I recommend connecting with a loved one and talking about anything besides being sick.
The other basic category is identifying what you need to do to manage your health. This includes doctor appointments (do not neglect preventive care!), taking your medications and supplements, and eating whatever is nutritious for you. If it helps you to have a therapist, try to make that possible within your insurance and physical limitations.
One of the most common forms of self-care advice is physical exercise. Chances are that your healthcare providers – and/or your friends, family, and fellow chronic disease peeps – have suggested it. My personal feeling is that people with ME should do whatever physical activity they can do safely, and no more than that. The most severely ill may struggle to roll over or sit up in bed. Can you stretch? Walk around the room? Do one flight of stairs? Can you sit upright with your feet on the floor for awhile? People who are moderately ill may be able to tolerate careful and tailored physical therapy for core strength or neural glide. If you can take a short walk, do it! No one can tell you what or how much physical activity is safe for you, and it will probably change over time. Experiment carefully, monitoring how you feel in the moment and in the following days. We know that too much physical activity can be seriously harmful, and we are right to be cautious. Physical activity is important for our health, but stay within your safe limit and do not apologize for doing so.
Acts of Self-Care
Practicing foundational self-care is the limit some (or most) days. But if you can, look for ways to pile on the self-care. There are lots of ideas and tips out there. Check out this list or this one, both of which are drawn from people with chronic illness. Here are some other prompts for you to consider.
Environment: What can you change that would increase your comfort? At different times, I’ve tried: grocery store flowers, a window bird feeder, a different blanket, a new picture of my niece and nephew, a scented candle. Looking at something different has helped when I have been bedridden.
Entertainment: Can you listen to music? I realized that I do this when I am feeling ok but not when I’m crashed. Others need music when they are crashed. Can you listen to podcasts or audio books? Can you watch tv? Now that my husband and I are both disabled, we have gone through multiple binge watchings of things like the Great British Baking Show and Mystery Science Theater 3000. I love documentaries. He loves anything and everything in the Marvel Cinematic Universe. And sometimes, I just need to watch a woman spectacularly kicking ass, like Fury Road, because we are not things.
Hobbies: Most people with ME have lost the ability to engage in some or all hobbies from their healthy lives. I miss hiking, with a piercing sadness. But when I can, I knit or read. Playing the cello has become an act of emotional and spiritual self care for me. Can you adapt hobbies for your current limitations? Can you try something new? Creativity is essential for me, and I’ve written elsewhere about the power of taking even tiny steps along that path.
Emotional: Chronic illness brings on all the feels, and often not good ones. What helps you cope with unpleasant emotions? Can you connect with someone you love, or someone new? Can you cultivate gratitude? Can you find joy in new ways? I rely on Toni Bernhard‘s writing on coping with chronic illness, especially “weather practice.” I also rely on my faith, especially in my darkest times.
Laugh: Laughter – or even smiling – has a positive effect on your body, including your immune system. But when you are sick, it can be hard to find anything funny. Sometimes, I try to imagine that I have a Patronus to chase away the ME “Dementors.” Is there a memory you can draw on that makes you smile? My guaranteed smile generator is watching a video or my niece and/or nephew being unbearably cute. What triggers your sense of humor? I’m pretty snarky, so I’m more likely to watch MST3K than a romantic comedy. My friend Barb sends me cute/funny pictures of sloths, lizards, and kittens. My friend Joey and I exchange super obnoxious memes and gifs. Get laughs any way you can.
Self-care is about restoring our strength – physical, emotional, and spiritual – so that we can continue. Sometimes, a coloring book or a kitty will do the job. Sometimes you need to escape, and sometimes you need to turn inward and reflect. Just as our bodies need sleep and food, our spirits need comfort and sustenance. People with ME or other chronic diseases cannot afford to neglect any of these.
What do you do to restore yourself?
Thank you, Jenny, for this helpful and sound list about self-care. I will keep it and remind myself of what is important and what comes first! ?
What I do to restore myself mentally and especially physically is lie in bed for the entire day, with short trips to the kitchen to eat something, and read, read, sleep, read again. After such a day, my body is restored (most muscle pains have gone, energy has reloaded), and my mind was somewhere else instead of struggling with daily cares, worries, etc.
But this is ofcourse a luxury compared to people who have to take care of children or of people dependent on them….
That sounds like a wonderful way to restore, Bettine!
Jennie, thank you so much for your post! I tend to slip away from self-care, thinking it’s not worth the effort. But I know it is! You’ve given me some new things to try and some things to think about, and I appreciate that. ?
I forget or willfully ignore self-care all the time! I wrote this post partly as a reminder to myself.
Thanks for this post. Especially the part about the basics: Food. Fluids. Rest. Shower. Clean clothes. When I read that I realized that this was all I can manage most days! I hadn’t really thought about my limitations in a Maslow’s heirarchy of needs type of way. I think I’m going to make my own needs pyramid. My private disability was recently revoked because the insurance company determined that I am able to work in “any” job, not just the job I was in before I became disabled (technical editor for Silicon Valley computer companies). But I am bedbound 80% of the time with fatigue, pain, and brain fog, and I truly am reduced to the basics you list most of the time! I’m thinking that if I can illustrate that it takes all that I can give to cover just the basics (and not even that really, as I have a meal delivery service), it might provide some much-needed perspective. If not to them, than to myself and my loved ones.
Gentle hugs, Linda
It transformed my thinking to realize that some days, the basics are it for me! I eased up on some of my self-imposed expectations in other ways, but I am a work in progress.
You didn’t ask for advice, but speaking as a former attorney: I hope you have good legal representation in your dispute with the disability insurance company. Working with a good lawyer is another form of self-care.
Yes, violently agree, I have two attorneys: one that specializes in private LTD and one for SSDI. They take a significant chunk out of my disability payments, but with my brain fog, I’d be dead in the water without them. I literally can’t understand the paperwork. It’s quite frightening, actually…the loss of my ability to comprehend or retain things…
Linda,
I love the idea of a needs pyramid for yourself! I also second Jennie’s suggestion of getting a good lawyer. It will hopefully take the worry away from you.
Here’s to being kinder to ourselves!
So many great suggestions 🙂 When all else fails, I browse pictures of people’s pet rats on Instagram — super adorable and absolutely heartmelting! 🙂
For me, it’s Puppy Instagram! I need a daily dose of cute.
Awwh ratties, with their chuckling chuffle. Have to agree there, there is always time for a nawhh moment, pet memes always welcome. Mental cuddles and a smile.
Had a fun one this year, someone’s ostrich got loose on the streets around our property so the neighbours got together to do the traffic management around it. Most had never seen or heard an ostrich & some said it was like an old dinosaur. Thankfully council staff found someone who knew how to handle ostriches to shepherd it down the back streets & finally take it home.
Jennie you are on to a great idea; you starting talking about self care with an animal meme that helps provide some self caring mental cuddles.
Jennie,
Your posts are always so helpful. I don’t know how you manage it. But I’m so grateful. Reading posts like yours is something I do. Self-care is something I think about but also something that does slip though my fingers when I start feeling worse and I can’t take care of myself as well. One of the things that makes me feel good is driving or being driven. I know this doesn’t work when people are really sick, and I’ve certainly been too sick for this. But right now I’m at at stage where I’m well enough to be up but I’ve lost much of my mobility. So the car provides this wonderful feeling of movement that I can’t give to myself anymore.
Great points Tracy. Reading this blog is a form of self-care! And I’m with you on the driving. I moved to the beach six months ago (well, an army of family and friends moved me), and I still haven’t managed a walk on the beach yet. But I do drive down there and just meditate on the ocean, the horizon, the waves, the sounds, the birds. Even if I don’t have the energy to get out of the car, it’s feels so restorative to me just to be in that environment.
I write fiction.
Today I regained control of my files after a crash and a cross-country move. I am much happier today than yesterday because of it.
Check the link for the blog post.
Very good reminders. I do most of the things you suggest, not all. I do get fluids and food. It’s not always the healthiest foods lately because it’s hard to get fruits and vegetables if I’m not up to going to Whole Foods (3 blocks away). Using frozen food helps, but I’m not always up to using it.
Showers are infrequent if I feel awful unless it’s very hot weather.
I also lie in bed, read, watch TV and rest to revive myself. Often do this for a few days.
I just was added to a family video plan so it’s free for me. And I discovered “Bosch!” It’s addictive.
I love humor, read humorous books and watch sharp, funny political commentary on TV.
And I look at puppies, kittens and cute animal videos online. People post adorable pet videos on Facebook, which are so welcome. Nothing like seeing donkeys snuggle up to people or bray at people singing or playing musical instruments.
After 15 years of illness I have figured out that most doctors are useless for sick people. Their main purpose seems to be to sell vaccines and statins to mostly-healthy people, and to lecture them that their problems are their own fault.
I know this sounds extreme so here is a summary of a recent interaction with the medical industry. I was coerced into an appointment by the threat that the doctor would not renew prescriptions if I didn’t show up. I explained that travel makes my illness worse, but that doesn’t matter since The Rules are more important than the results. One might think that harming a patient would override arbitrary policy. Apparently not.
I told the doctor that my orthostatic intolerance is really bad recently. Sometimes my blood pressure drops to 80/60 after standing a few minutes and I now experience transient air hunger on standing, as well as near-syncope. His treatment? He said I should buy a cane. Honest to god. One can not make this stuff up.
He also wanted to order the standard blood tests that never show anything useful and I agreed. A few days later his nurse called to say my kidneys aren’t working properly any more and that I should drink more water. That’s it. No followup. No referral to a kidney specialist. Just drink more water.
So for me, staying away from doctors is self-care. Sooner or later I am going to die anyway. I often think that sooner might be better, but so far I am determined to be grit in the gears of the machine for a little while longer.
Get a new doctor. Some are much better than this, even when ME ignorant.
Belated Happy Birthday, Jennie. Just read on Cort Johnson’s Twitter that it was your 50th birthday last week.
Hope you had some fun and treats.
And thanks for all you do for the ME/CFS community. (I cite your blog as a source when I’m discussing data analysis and NIH funding.)
Thank you, Kathy! I had a lovely birthday.
Lol Mystery Science Theater 3000 & Marvel & quaint strangely therapeutic British TV shows… potentially involving food. Yes this does tend to cover my husband’s and my recent list with minor additions,… I add Zero Punctuation (a British/Australian game reviewer) for the gamer in me, (warning in case you look this up, there is no language filter to the cynicism and dick jokes are path of the course to many gamers), and he adds slightly saccharine and cynical cartoons like Bob’s Burgers, or Rick and Morty, (yeah he finds some that hit both ends for a nice rounded short tasting, like eating a bite size chocolate bar with nice roasted nuts, like a Whittaker’s peanut slab).
Nicely written post Jennie, cheers for the pick me up. Kia Kaha
Knitting is #1 for me. Restorative Yoga works well for me – anything more vigorous, even “Gentle Yoga” makes me crash. Meditation is great, too but I’ve found knitting to be a meditative activity that never lets me down. It’s rhythmic, gentle motion. I can sit with feet elevated, or lie down with my head propped on pillows. It’s tactile – I love soft squishy yarns – and although art (drawing, painting) causes crashes – even pre-printed adult coloring books can backfire on me – knitting feels like art to me. The colors I choose, the textures and shapes I achieve. It makes me feel productive and useful, knitting gifts for friends and family. It soothes me when I’m upset, it quiets me when I’m wired and jittery, it distracts me when I’m lonely and feeling useless. My brain feels clean and fresh after a good knitting session, just like it does after (some) meditation sessions, just like it feels after one or two restorative yoga poses. They’re all good for me. But knitting is the most reliable tool in my toolbox.
SAME!!!! Knitting is a key coping strategy for me. Studies have shown that knitting is very good for the brain, too. Are you on Ravelry?