One of the comments I hear the most from my chronically ill comrades is, “You’re so organized!” Its true that I love few things more than I love a good system. I love finding really good ways to do things, and evolving them as circumstances change. It gives order and predictability to some things in my life, allows me to feel like I still have some agency and control, and it makes it easier to bring others into my world as helpers and contributors. We don’t all have the same style of brain, cognitive capacity or tools, and what works for me may not work for you. But if what I’ve learned can help others get there more easily, I want to share. I’m based in the US, so my tools and recommendations are too.
Organizing Tasks and Activities
I am severely ill, and am my own task and care manager. It is very hard work. But I live alone and don’t have anyone else to fill those roles. In order to make things work the best I know how, I’ve devoted a lot of time and energy into exploring, trying and iterating systems to make things work as reliably as they can with the least amount of work.
Managing Space
Setting up your living space to support you is a key part of improving your quality of life as a chronically ill person.
Managing Medical Admin
The time, energy, organization and tasks around living life with complex medical conditions can be overwhelming and draining. Here are some things that have helped me.
Acceptance and Peace
Acceptance of a greatly changed reality is very difficult, but I also believe it is very necessary. We can accept what is true today (and that it may be true in the future), without abandoning hope for change or trying new treatments. I feel strongly that this is one of the single most important things that has affected my quality of life.