#self-care for chronic illness

[compassionmattersmost]

Managing Post-Exertional Malaise: Finding Balance and Peace in Life with ME/CFS

A Gentle Reflection on Pacing, Rest, and Navigating the Challenges of Chronic Fatigue Syndrome There are days when the body speaks softly, a whisper of weariness that hints at the storm ahead. And though we move carefully, mindful of each step, there are moments when the smallest effort—a turn of the mind, a spark of emotion—awakens something deeper. This is the dance with post-exertional…

[thepeacefulgarden]

[desultory-suggestions]

Sending love to everyone who has health issues or chronic pain in parts of your body that aren’t usually socially acceptable to talk about. It’s frustrating to feel like you can never explain your pain to someone because it’s TMI and to feel like you have to hide it. Your pain is nothing to be ashamed of. I see you, and I’m sending you support and strength.

[neuroticboyfriend]

it's never too late to start brushing your teeth again. i basically never brushed my teeth for a whole 10 years. a decade. A DECADE. i still struggle to brush my teeth once a week, but it all started with brushing my teeth once every few months. so i mean it when i say brushing your teeth once a week, a month, a year, or even a decade, is better than nothing.

and still, nothing is not shameful. it is not immoral to struggle with self care. and it is also not pointless to keep trying. anything you can do, even if its wiping plaque off with a towel, is enough. it is good to take care of yourself however you can, even if it's just trying to muster the will to. reading this post is good, too.

i believe in you and i am proud of you, even in the smallest of steps. it's okay. you can give yourself grace.

[spooniestrong]

Remember: being in pain uses energy. There’s nothing wrong with taking a long nap or sleeping in late after being in pain all day. If you need to rest, do it; don't let anyone try to convince you otherwise.

Listen to your body and its needs.

[furiousgoldfish]

As a person who spends a lot of time lying down and rarely does any kind of activities, I come off as someone who's taking a lot of 'me' time, or a lot of 'resting' time. However I have to assert that any time I spend recovering from an activity is not 'me time' or 'resting time', it's the time that is stolen from me. I can't do anything with this time. I am in pain, I can't move, my activities are limited to 'hopelessly distracting myself so that I do not experience the full horror of what's going on in my body right now'. I don't even get to have 'me time' because of how much of the time is stolen from me.

[cane-goth]

Pain is hard to deal with. It’s not wrong or bad or selfish to feel angry or depressed or to grieve.

You’re not a bad person for having a lower tolerance for things that annoy and irritate you when your pain is flaring.

You’re not a bad person for having little to no libido when your pain is flaring.

You’re not a bad person for expressing you are in pain and discomfort, even if you’ve done it “too much” according to the mean voice in your head.

Be patient with yourself and give yourself the space to safely experience the mental toll chronic pain takes on you.

[akindplace]

it’s okay if getting better is taking longer than you hoped to. if getting better doesn’t mean getting cured. if somedays are better than others. if others seem to heal faster. if it’s exhausting. if your illness is chronic and progressive. it doesn’t mean people won’t love you as you are, it doesn’t mean you don’t deserve help, it doesn’t mean that you can’t ever be happy. you still deserve care, love and kindness when you’re suffering, and i hope you find it within yourself to feel compassion towards your own body, even if some people might not, even if it doesn’t work in the way you wished it would, even if it’s different.

[study-diaries]

Reminder

Your pain (physical/mental/emotional) is valid even if nobody can see it

Your pain is valid even if you have no physical symptoms

Your pain is valid even if there is no physical injury

Your pain is valid even if others tell you it's not

Your pain is valid even if you do not have a life threatening disease

Your pain is valid even if you don't have a diagnosis

Your pain is valid even if you do have a diagnosis

Your pain is still valid even if nobody believes you

Your pain is still valid even if you are too "young" for the problem/issue

Your pain is valid even if the health care advisor/anybody tells you that it's in your head

Your pain is valid no matter what the conditions are

Your pain is valid.

Pain does not discriminate between age, gender, race, nationality etc. Just because you can't see pain, doesn't mean it's not there.

[insert-name-heres-things]

Happy Disability Pride Month!!!

Remember Folks:

- SELF CARE IS NUMBER ONE

- Use your spoons sparingly! Here’s some spoons to go: 🥄🥄🥄🥄🥄🥄🥄

- Clean your mobility aids! (Seriously dude when was the last time you wiped that shit down with an antibacterial?)

- Accommodate yourself, as others will follow.

- Make goals within your reach and abilities

- DO YOUR COPINGS SKILLS

- Remember to stay hydrated and take your meds!

- For my fellow heat sensitive homies, stay cool this summer! A cold rag draped behind your neck, airy clothing, a small portable hand fan, keeping ice packs ready, cold water and expecially cold electrolyte drinks, all do wonders!

- For my fellow autistic folks, don’t be afraid wear earmuffs, stim, use chew charms, whatever it is that helps you regulate. You don’t have to mask if it’s something that isn’t benefitting to your life.

- POTS havin mofos like me, salt the ever loving fuck out of your food. Try different foods with salt, such as fruits and vegetables! I’m currently eating a salty tomato. Drink lots of water, I’ve been aiding gateraid packets to my water and it’s made a HUGE difference, especially as someone who hates drinking water.

- Those with PTSD for whatever reason, I wish you safety and support as you learn to cope and hopefully heal.

- I don’t know exactly what to say to others with H-EDS, as I’m still understanding this disorder other then BE CAREFUL WITH YOURSELF THIS PRIDE MONTH. I swear to god we are the most accident prone mother fuckers lmfao-

- If your immune system is all fucky like mine, keep clean and be sanitary, communicate with others that if they’re sick you can’t be around them, and wear a mask if you feel like that’s the right option for you. In my hometown I’ve gotten yelled at more than once for wearing a mask post-covid, however you can’t let someone else’s ignorance result in your own suffering.

- Don’t forget to move around and stretch! A little movement can do a lot for your body.

- Check in with your disabled friends! Try and see if there’s any way you can help one another, see where both of your strengths and weaknesses lie, and swap some spoons!!

- Be aware of what triggers your disorders. Whether if it’s caffeine triggering bipolar episodes, the weather causing fibro flares, big changes causing meltdowns, overexerting your hypermobility, whatever it is, it matters. Listen to your body and mind.

- Don’t be afraid to call out that doctor who isn’t listening, dismissing your symptoms and medically gaslighting you.

- While it may not seem like a big difference for some, trust me when I say your appetite is so important! Remember if it comes down to it, that it’s better to eat something, ANYTHING, than nothing at all. 

- To that person who might be hesitant, ashamed or might be questioning wether or not they should use a mobility aid, if it’s the difference between you being stuck at home vs going out and living some life… USE THAT MOBILITY AID!!! Same goes for braces and any other tool that may help you live a better quality of life.

- Be accepting towards those with disabilities different then your own- remember this month isn’t a competition about who’s struggling the most, rather to understand that people of physical, psychological, sensory, neurodivergence, and even undiagnosed disabilities all share one thing in common.. WHICH IS BEING DISABLED!

- Doesn’t matter who you are, how young or old, black or white, thick or thin - the disabled minority is one you can end up becoming a part of at any time, and likely will if you live long enough. Disability doesn’t discriminate, so EVERYONE should be advocating for disabled people’s rights.

- And of course, have pride in being disabled. This shit is fucking hard, but if you’re reading this, you’re doing it. Just being here today and doing what you can handle or manage, is doing your best, and that’s enough. You don’t have to push yourselves to impossible lengths to be proud of yourself.

Here, have the disability pride flag:

[compassionmattersmost]

In the Quiet of Healing: My Journey with the Parasympathetic Nervous System

Healing Through Rest: How the Parasympathetic Nervous System Can Support Recovery from Chronic Fatigue Syndrome In the aftermath of the recent hurricanes, Helene and Milton, I’ve felt post-exertional malaise weigh heavily on my body. The fatigue has been more than just physical—it’s emotional and mental, a deep, enveloping weariness that reminds me how fragile recovery can be. As I continue to…

[fibromyalgicaf]

It's strange how, after a while of living with fibromyalgia, I have to regularly remind myself of what healthy actually feels like.

I have to remind myself that most people don't experience pain every day.

I have to remind myself that going to the park for an hour is not a big outing.

I have to remind myself that most people don't have to decide between cooking and showering.

I have to remind myself that most people can achieve more than one thing a day.

After 5 years, what I see as my baseline has distorted. It's so easy to slip back into old patterns, to try to do more than I have the capacity for, to get angry at myself, to push myself too hard.

So I have to remind myself to be gentle and patient, to pace myself, to set boundaries, and to ask for help.

[desultory-suggestions]

If you are technically capable of going out or doing something during a chronic illness flare-up, that doesn’t mean it isn’t debilitating. You shouldn’t have to push yourself through pain, and it's okay to say "I could but I shouldn't. I could but I don't want to."

[introvertedx10]

[neuroticboyfriend]

tip for people with chronic pain/fatigue: lay down occasionally. haven't laid down in the past 3-5 hours? do it (if you can) and see how you feel. i've found that i'll lay down in bed just to be in my room, but then i get hit with an instant wave of relief because just sitting on the couch was too much for my body, and i didn't realize it.

when you're in pain or fatigued for a long time, your awareness of your body may get wonky - especially if you already struggle w/interoception due to neurodivergency. so. test it, sometimes. you can apply it to other things too: sit if you're standing. stop doing a task if you've been doing it for a while. have a small snack to see if you're hungry. etc. etc.

[bardic-inspo]

*takes your face and holds it tenderly*

You were not made just to suffer. You are more. You are so much more than your hardest moments. 💜