chronic illness and personal time
When I have a random flare up of my chronic illnesses (or my treatment stops working), my free time is no longer something I have much control over. It's constrained and controlled by illness management. Most of it is dedicated to doing the bare minimum, getting myself through the day, distracting myself, managing pain, and resting - it's what I have to do to either endure it or not worsen it. That's a very common experience for basically all chronically ill people.
From the outside it looks like self care, like some really good me-time: Taking baths, napping, scrolling, getting massages, immersing yourself in something easy you can handle right now, for hours a day, weeks, taking it slow and not doing much. Like retreating into your own cocoon. People in your life are waiting on you to reemerge better and ready to go; you got your fill of lonesome me-time after all.
From the inside, it's different: You feel limited in what you can do and how much of it, so the things you do are the only things you can do, but not necessarily want to do. Lying in bed (usually a nice activity) suddenly isn't a voluntary choice, it's forced upon you, and maybe it's in a hospital, too. It doesn't feel particularly replenishing when it's most of what you can do. Maybe you wanted to do this other thing for four hours, but only got to do it for one. This flare up broke your routine, and you wanna get back to it when you finally can. This or that hobby has to pause until you feel better, and no hot bath can change that. You're falling behind in the things you need to do. It's not really feeling like self care, it feels more like a prison sentence, and things keep piling up, both physically and emotionally.
In other people's eyes, once this silly flare up is over, they expect that you are finally available again and have time for them - to go out, to engage in hobbies together, to spend more time actively doing something instead of them just taking care of you or waiting for you. They too may have kept a backlog in their head for what they wanna do with you once you're well again.
For the chronically ill person, the list of things they want to do has been piling up over weeks as well; and once they feel better, they're invested in getting their time back and finally getting to do the things they enjoy or that they were prevented from doing. Maybe that means doing more things more intensely to make up for the weeks they couldn't.
Yes, that may include other people too, like being happy that you are finally well enough to go to that meetup or make it to the concert with your friends, but more often than not, it also includes very isolated hobbies that can be done independently, often at home - they're most suitable for chronic illness, after all.
In my case, that may be things like exercising, or studying for more hours and catching up on the study load I had to drop, writing blog posts for a couple hours, finally taking on more cases for my volunteering position again, working away on my reading backlog, playing games for longer, and more. This results in possibly not getting my attention for basically the entire day, if I don't catch myself and make a dedicated effort to reach out to people, take breaks, and actively choose to spend time with my wife even if I have a list of other things in my head, for example.
It's kinda terrible, because for quite a while, you might not be able to do much of anything at all while the people in your life are patiently waiting. Then when you can, you feel like you have to use these precious good illness days and first pour into yourself, while possibly neglecting others who had hoped that finally, you'd be open to more time and activities together... with the full you, not the brain-fogged, dimmed version of you.
Being aware of this is the first step, but it's hard to manage the different expectations and find a good balance, especially if the hobby can't just be shared, needs quiet or focus, or can't easily be done in just small chunks.
It's difficult for me because I really need to immerse myself and end an activity when I feel like it, not because of external constraints. Stopping prematurely or being interrupted makes it hard for me to emotionally regulate or focus on anything else. I also have enough stuff to do to just fill an entire day and more. I'd just keep going if unchecked, and my hobbies and interests are really independent.
Chronic illness can be weirdly selfish... and maybe, that is somewhat unavoidable. One week it's about what feels good to you right now during all the pain, another week is about what you can or cannot do in this limited state and full of no's, the next week is all about what you want to do now that you're feeling good. It's just us, us, us and our needs. It looks like we spend our newfound energy running away from everyone. That can be especially painful to people that actively take care of us.
Some weeks, our own plate is so full with illness-related things that we have a hard time checking in with anyone about their lives and problems or helping them with anything, and then the other weeks, we're too busy by ourselves playing catchup with our goals and desires that fell by the wayside that we once again don't do it. That cycle may repeat.
It's easy to be almost completely unaware of this recurring pattern, but it deserves to be addressed and talked about. There needs to be some understanding by the a chronically ill person's surroudings that once things are going well again, there is a strong desire to finally make up for lost time, even alone, and that the sick time was not fulfilling me-time at all; but there also needs to be awareness on the side of the chronically ill person that it's easy for them to lose sight of others when constantly managing something so personal that puts their own needs front and center.
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