I love a good system. I love finding really good ways to do things, and evolving them as circumstances change. Here are some ideas that could help improve your quality of life. I’m based in the US, so my tools and recommendations are too.
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.
Setting up your living space to support you is a key part of improving your quality of life as a chronically ill person.
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 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.