10 Lessons Chronic Illness Taught Me That Actually Help In Daily Life (Even on Low Spoon Days)

Chronic illness is the worst teacher with some of the best lessons. Imagine not knowing how to swim, and deciding to go on a cruise. That cruise ship has an issue, and for some reason you have to evacuate to the lifeboats. But, you have to swim there. You'd figure out how to at least keep your head above water pretty fast, right? Welcome to chronic illness. It's not a course that shows up with a syllabus. It crashes through the door wearing yesterday's clothes, holding a bag of flaming hot cheetos and an energy drink, and shouting "Surprise!!! You're about to learn everything the hard way, partner!"

You learn to pick up some tricks, truths, and tiny life hacks along the way. Things to at least help me show up for myself a little more gently.

So, whether you're newly diagnosed, deep in the trenches, or just here for the cozy vibes and maybe some disability humor, here's one chronic illness taught me, one "I'm gonna sob on the floor" moment at a time.

Number 1 - Rest is NOT a Reward, It's a Requirement

I don't know about you, but I don't have the chance to believe in hustle culture. I've been living in survival culture for way too long. That means that rest isn't something that I deserve after doing the task, but rest is a task in and of itself. A non-negotiable one. Like drinking water. Or not eating something you're allergic to.

If I don't prioritize rest, my body will do FOR me. Loudly, dramatically, and probably painfully. Usually in the middle of something inconvenient like when we're eating dinner out or walking through a grocery store. Lord knows that walking through Costco alone can give me a flare up!

Number 2 - Sit Down Whenever and Wherever You Can. No Exceptions!

Do you really think I can stand during an entire hot shower? Sweetie, no. I perch. Perch like a fragile little Victorian ghost. We often call it "gremlin" pose, where I sit in a deep squat onto my legs, without letting my behind touch the floor.

Chair nearby? I'm in it. If there's no chair nearby? I'm the chair now. I will sit on the floor, the curb, the grass, a friendly dog, we do what we gotta do. If you don't feel like you can sit? You lean on anything you absolutely can.

Number 3- Spoon Theory? Real. Helpful. Vital.

We've talked about the spoon theory quite a few times on this blog, but it really is a daily part of my life! I really use that EVERY DAY to measure how much energy I have to get things done through the day. Luckily for me, I'm one of the few that a singular 12oz RedBull doesn't bother my POTS a lot, (I try to stay under 150-160 mg of caffeine to stay away from any anxiety or heart palpitations!) and since I don't always drink them, they give me a small burst of extra spoons that usually helps me hold on for another few hours! The Spoon Theory taught me how to pace myself and how to explain my energy to people who don't get it. It helps explaining how I feel easier to others! It's not about being lazy- it's about being strategic. Ten spoons a day means I can work or clean the house. I can't do both. Pick your battles. Clean up the important things and clutter, then relax and at least get some creating done if I can. Do whatever I was planning on tomorrow. It'll still be there.

Number 4 - Routines Are Love Letters To Your Future Self

When you're chronically-ill, routines aren't boring, they're life saving. Having a go-to cozy outfit (or style of outfit in different "fonts"), a repeatable breakfast, and a "bare minimum" version of your skincare routine isn't lazy. In fact, it's brilliant. It's kindness in advance for the days when you're running on 3% battery and no charger is in sight.

I will give you my routine for an example!

First up- Shower. No matter how I feel, I am one of those people that HAS to shower every day. I feel nasty and gross if I don't, and if it's not in the morning I'm completely thrown off and moody all day. I have the same shower routine, but the biggest difference is that I never shave when I'm having a flare up, the temperature of the shower is always lower, and I will happily sit through a shower if I need to.

Secondly- Get dressed. When I'm having a rough week, you will more than likely find me in a pair of leggings or shorts that are legging material, and an oversized shirt or hoodie that's either mine or Jared's. That's about it. Most of my family will know that it is about 90% of my wardrobe at this point.... not like I mind!

Next Step is - Hair and Skin Care. I have natural 2B-2C hair (is that 2B+?), but if I don't style and diffuse it, it'll dry pretty soft and tame with a slight wave in it. This is much preferred when I'm not feeling good, for sure, because my wavy hair routine takes about 30 minutes in itself. So, frequently, I will spray some leave-in conditioner in my hair, and then throw it into a messy bun or ponytail for the day. If I want some wave, but don't want to diffuse, I will use some of my wave cream and mousse, and then just a little bit of spray gel in it, Usually that means I'm going to be working from home most of the day, so I will be able to scrunch out the cast with oil when it's fully dry later! As for skincare, I always wash my face in the shower, but when I don't feel like I have a whole lot of spoons, I will just moisturize and put some SPF on, and call it a day!

Then I focus on getting some sort of food into my system, and taking my medication! I kind of have to eat whatever just sounds good at the moment because I have a lot of stomach issues, but if I don't eat at some point before noon, I will have really bad blood sugar issues all day.

These few little things of consistency help me take care of myself, at the very least. Even when I don't have the energy to take care of much of anything else.

Number 5 - Boundaries Keep Me Alive (and Mostly Sane)

Saying "no" doesn't make me difficult it makes me functional. Sometimes it makes me controversial at family dinners, or my grandma gets a little frustrated that I'm not allowed to drive as far as I'd like to anymore, but hey- that's a different blog post. If I have to choose between pleasing someone else and listening to my body, more likely than not? my body will win. Every time. Even if that means that during or after the fact, I'll be wrapped in a heating pad and sipping my electrolytes like a hamster out of their little water bottle.

My body doesn't exactly let me choose when I want to hang out with my friends or my family. If there's something planned? I have to know as far in advance as I can, in order to prepare my body and rest before I have the event. For example, Jared and I will be going on a short trip with friends in the near future, so the entire 2 weeks before that, I will be planning ways to preserve my energy, get the house clean and prepared for us to be away, and make sure we have everything that we need packed and ready to go.

Number 6 - Hobbies Are Not Optional!

Crochet, for me, isn't just a business. It's a sensory balm. A grounding ritual. A way to remind my body that it's still capable of doing something on the days that getting out of bed feels like a million pounds on my feet. It reminds me that there's soft things that can be brought into and change the sharp and painful world. Crochet isn't just about selling my items or showing off what I've made to me. It's honestly just my way of proving that I have the ability to be something great, even when my body doesn't always want me to be anymore.

Number 7 - Time is Flexible, Not a Straight Line.

I used to believe that productivity looked like the exact same schedule, the exact same product, and the exact same consistency every day. High energy processes and quick turnovers turned into dreading nightmares and pushing myself way too far. Now? If I can finish all of my blogs in three days, rather than all 5, I basically feel like an icon. A hero. Like I've changed the world with my fingertips, somehow. (Though, I know that's highly unlikely).

Chronic illness stretches time. It's teaches you to slow down and pace yourself, but still finding ways to work around the hard days and days of inability. There's plenty of days that I can't crochet. There's plenty of days that I can't write, There's plenty of days that I don't feel like working on social media posting at all. But, If I can't crochet that day, I get one of those things done because they're still important, they still have to get done, but I can sit in bed on my small laptop and do them too. Everything can be transferred one way or another!

Number 8- You Don't Have to be "Fine"

I feel like it's human nature for most people to respond "Good! How about you?" to the "Hey how are you?" that we get in passing. We all know that "good", in one way or another, is probably a lie. Personally, it's usually code for "I didn't cry today, I remembered to eat, I feel like a damn super hero". But there's an acronym that my wonderful grandma taught me one time for the word "Fine". She used it to get me to stop saying "I'm fine" to all of her responses, but now that I use it on her, I think she regrets it a tad!

The acronym is

F - Frustrated

I - Irritated

N - Neurotic (Neurosis is defined as a mental condition that is caused by organic disease, involving symptoms of stress. Neurotic essentially is a fancy way of saying my body feels so stressed that I feel like my brain is genuinely changing because of it.)

E - Exhausted

Either way, you don't owe anyone a shiny version of yourself. You can be soft. Honest. Half finished. That's still you. And you're still loveable.

Number 9 - The Block Button Is Free. Use It.

From unsolicited health advice to guilt-tripping messages from people who "just don't understand" I've learned to curate my peace. And aggressively when needed. I've been known to pop off in a comment section or two to defend a creator or myself about actions that shouldn't be hated on or talked poorly about, and I will continue to do that. And if I really don't like the things that is said by someone? I just block them! It keeps me from ruining their day with whatever I'm doing to ruin it, and it keeps them from ruining my day with comments. You can't heal in a space that keeps opening a wound. and that applies to people, apps, and facebook groups with really mean Karens.

Number 10- Comfort is Sacred, Not Silly.

Soft things matter. Comfy clothes matter. Low simulation days with no big lights really matter. Cozy isn't just an aesthetic or a way of being lazy, it's a way or survival. The world wants you to preform, push, be perfect. But if chronic illness teaches you anything, it's that comfort is revolutionary.

We deserve ease. Not after we're "better" or "less stressed". Now.

All of this to say, chronic illness will flip your life upside down. But it'll also show you just how much wisdon lives in rest, how much power lives in boundaries, and how much beauty can bloom when you give yourself permission to live differently.

So here's to the daily hacks, the cozy snacks, and the permission slips. Here's to building a life that fits your body... not the other way around.

Peace, Love, and All the Above,

Ella Marie <3