If there’s one thing I love, it’s organizing. I’m a big planner person, I love planner stickers, it’s a whole thing. And that organization has helped me a lot with managing my life with chronic illness. I figured that I would share my organization tips for chronic illness life. I hope that these organizing tips and tricks help you out!

I do want to say, though, that what works for me doesn’t necessarily work for you. And that’s okay! I have found that keeping things organized has made things a bit easier for me, but I’m just one person.

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To be honest, I had a whole plan for this post. I was going to talk about my planner and my experience with it and why I like it … and then I discovered that the company has an F rating from the Better Business Bureau, and they have a “no refund” policy (which WTF), and it’s a whole thing. SO. We’re not doing that, and I ordered a new planner which I’m SO excited about. (don’t worry, I was due to need to buy a new one within the next month anyway). 

Let’s talk organization tips for living with a chronic illness.

Why is it important, you ask? Well, in addition to normal life things, we have doctor appointments, medications to take, lifestyle changes to make, and more. Not to mention that we often have increased fatigue and brain fog! That’s why my organizational hacks are so important.

How Do You Get Things Done with a Chronic Illness? 

These are my specific tips for how to get things done with a chronic illness, and yes they’re (mostly) all organization-related because, well, that’s the theme of this whole post. 

To do lists – As I mentioned, something that a lot of chronic illness patients live with is brain fog.  Brain fog is “a term used for certain symptoms that can affect your ability to think,” according to WebMD (x). Brain fog gets its name because people with it feel like they’re in a fog. It’s a type of cognitive dysfunction involving poor concentration, memory problems, and an inability to focus (x).

Brain fog is a symptom of many illnesses and conditions including fibromyalgia, diabetes, Sjögren syndrome, ME/CFS, lupus, long COVID, and much more (x). A lot of people experience it, myself included. 

A big way that I deal with it is by making clear to-do lists. If my brain fog is particularly bad, I need to write everything down so I don’t forget it. This can be anything from “schedule appointment” to “clean bathroom”. I would rather write it down and not end up needing the reminder than not writing it down and missing something important. 

It’s not just about doing what I need to. It’s also about not worrying that I forgot something because I know I would write it down in my to-do list if I really needed to do it. 

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Phone alarms and reminders – I have so many alarms on my phone that don’t have a sound. They’re more like reminders, but I find that using the alarm app over the reminders app is more helpful for me personally. 

Asides from wake-up alarms, here are the alarms I have on my phone that go off daily: 

• morning medication reminder at 9:30
• afternoon medication reminder at 12:30
• dinner medication reminder at 7:00
• a reminder to update my planner at 8
• evening medication reminder at 9 

Sometimes, I need a reminder to go to bed because I get sucked into “one more episode!”, so I also have a reminder to go to bed at 11:30. I don’t have that on every day, but if I stayed up late one night I’ll definitely turn that one on the next night so I don’t forget. 

So why do I use these?

I’m pretty good at taking my medications in general, but aside from my morning medications, it’s easy to get distracted and miss a dose. Missing one afternoon dose isn’t the end of the world, but missing several over the span of several weeks does lower the efficacy of those medications. 

I also have that reminder for updating my planner (which also doubles as a journal) because that’s where I keep the majority of my daily to-do lists. I try to update it at the end of the day, regardless of if I updated it throughout the day. I want to take a minute to reflect on my day, write down what I’m grateful for, look at the next day, and update my weekly habit trackers.

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Planning ahead – As you can probably guess from this post, I’m a big fan of planning and working ahead. This helps when it comes to chronic illness because I can’t guarantee how I’ll feel on a particular day. I can’t guarantee that I’ll feel up to writing a blog post in addition to other things I have to do, for example. So by planning ahead, I’m not waiting until the last minute to do something because I never know if I’ll feel up to do something at the last minute. 

For example, while I do the majority of my blogging work over the weekend because I have another job, I like to do little bits and pieces of it throughout the week. This means that I don’t have to start a blog post from scratch on the weekend in case I don’t feel up to doing that work. 

What’s In My Tool Box for Dealing with Chronic Pain

Noting what is crucial – This is crucial for my physical and mental health. How, you ask? It’s important that I don’t work when I don’t feel badly, so it’s important that I’m aware of what is crucial so that I don’t push myself too much. For healthy people, pushing yourself a little bit is good. For me, it’s not. If I push myself, my body reacts badly. 

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Cutting myself some slack – It’s important to try your best, but it’s more important to give yourself grace. It’s okay to struggle, it’s okay to push through, but it’s more important to not worry about things too much if at all possible. You are a human being, and humans make mistakes. It’s not the end of the world if I’m not super organized every single day.

Self-Care Tips That Chronic Illness Patients Need

How Do You Keep Track of a Chronic Illness? 

The other thing about organizing with a chronic illness is keeping track of your symptoms, your family medical history, your medications, and more. I’m going to share a couple different strategies you can use to keep track of your chronic illness.

Journaling – When I say “journaling” in this context, I’m talking about writing about your symptoms. Maybe you write about how you feel physically or maybe how you feel mentally. Maybe you write it just for yourself, to help keep track of things or to express your feelings, or maybe you write it with the intention of showing a professional so they understand how your illness affects you. 

It’s totally up to you! 

I try to use my planner as a journal so that I have all of my thoughts in one place. It’s where I take notes before and during medical appointments. It’s also where I write to get my feelings out of my brain. 

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Habit and symptom tracking – This is the real key to keeping track of your chronic illness. If you have trouble figuring out what is impacting your symptoms, or you have no idea what is helping or hurting, tracking your symptoms can help you see patterns that you’re not noticing in your day-to-day experience.

Let’s say that you are all out of things doctors can do to help you; maybe your doctor can’t prescribe another medication for your symptom, or you can’t afford a therapy or treatment. Basically, you’re trying to know more about what is causing, hurting, or helping your symptoms. Tracking them can help you figure that out.

Let’s talk about different tools for managing your chronic illness, both ones that you buy and ones you can get for free.

MightyWell makes some incredible products for people with chronic illness … including an awesome planner and a med organizer.

Before we get into it, don’t forget to use KATEM10 to get 10% off your purchase! 

The Brain Fog Fix Planner is to help you plan and track, well, everything. It comes in 3 colors and is $12.95. Their website says, “With the Brain Fog Fix (BFF) planner, we hope to alleviate frustration and conserve your precious time and energy. This planner is more than just a reminder system. It includes space to track daily symptoms, hydration, thoughts and moments of gratitude amidst the daily challenges” (x).

They also sell what’s called The Mighty MedPlanner. This is an organizer that holds your medications, snacks, medical devices, and more. It’s easy to use and easy to travel with. The website says that it contains 7 pouches for you to put your medications in, 1 for every day of the week, and you can write on them with a washable marker. There is a reinforceable elastic loop “to hold diabetic supplies, EpiPen, inhaler, and other medical supplies,” as well as a back pocket to hold even more. Plus, and this is a big draw, it’s big enough that you can put an ice pack in if you have medications that need to be kept cold. It’s only $40, and it’s FSA/HSA eligible, so get it here. 

Looking for free tools? I’ve made a bunch of free downloads for you! Let’s talk about them.

Living Life with Chronic Illness: Common Problems & Their Solutions

Free Downloadable Chronic Illness Trackers

I have made several free downloads to help chronic illness patients stay organized. Here are 3, 2 that require you to sign up for my newsletter and 1 that doesn’t. 

Medical appointment freebie – This is the document I have used for all my medical appointments for the last 11 years. If you’re anything like me, the pages that doctors’ offices give you before an appointment don’t give nearly enough room for you to include everything you need to. I keep one copy in my wallet and I bring a new copy to give to my doctors when I see a new one. It’s much easier for everyone!

This document includes your DOB, past medical concerns (such as surgeries), current medical concerns, a table for all your medications, any dietary restrictions, a list of all your doctors, and family medical history. 

Sign up for my newsletter and get it here. 

My Chronic Illness Symptoms – This document has space for you to fill out in advance of an appointment. There are prompts to help you describe your sleep, your pain, and your daily life. There are also prompts to help you explain how your illness is impacting your life. Explaining “because I have this symptom, I can’t do this activity” can help medical professionals realize how our lives are impacted by chronic illness. 

Sign up for the newsletter and get it here.

4-week symptom tracker (no newsletter subscription needed!) –  This document is 4 pages, but I didn’t intend for every person who might want it to need all 4 pages. Maybe you’re special and all 4 do apply to you! Maybe they’re won’t. But all pages are designed for 4 weeks. A theme is definitely pain, but you could use it for other symptoms, too. 

The first page is for rating your pain and describing it. The second is rating your fatigue and tracking how many hours you slept. The third is rating your pain and tracking how many hours you slept. The fourth is rating your pain and listing the foods you ate, so you can see if there’s a connection. 

Again, you don’t need to subscribe to my newsletter to get it. Just click this link.

Why You Must Track Symptoms of Your Chronic Illness + Freebie To Help

What are your organizing tips if you have a chronic illness?

Like this post? Check out: 

What Is Self-Advocacy? An Answer + Strategies To Help, We Need To Talk about the “Disease Warrior” Model, The Impact of Chronic Illness on an Individual, Chronically Ill Tips: What To Do When a Doctor Isn’t Listening to You