Note – this isn’t as polished as a piece that I post on purpose… because I’m going through the ups and downs. I do plan to come back to edit/improve for the future.
The unpredictability of chronic illness may be the most difficult aspect for me to wrap my mind around.
I also believe it is the most difficult for others to understand as well.
If you see someone, and they look “fine” it is hard to understand that they may not be. We try to hold everyone to the same standards, typically our standards. If we are capable of something, they must be, too.
We don’t know anyone’s capabilities. Sometimes, we don’t know our own.
Before Chronic Illness
Let’s be clear that I’ve probably had my chronic illness my whole life, I just never knew it was the cause of my issues. I’ve always needed more rest than I felt like other people did. The symptoms I am having now are just much more exaggerated. There were plenty of times that I told my husband, “no I’m not going to sleep, my eyelids are just tired and need to shut,” that I now realize was the same thing that happens to me now.
That being said, my ability to “do” was a mental game, not a physical one. When I say mental game, man do I mean game. I was constantly mapping my ability to get things done, to what I wanted, and finding ways to do it with the least effort.
This honestly has helped me now, but the problem is I don’t often know the game pieces I’m playing with.
Now with Chronic Illness
I literally wake up every morning and have no idea how my day is going to look. I can try to plan—and I do!
Now planning looks a little different because not only am I looking toward the event that I am planning to engage in, I also have to plan how to prep and recover. Days when I am recording a podcast usually have plenty of time blocked before and after so I can rest.
If I could predict my bad days, I would engineer an optimal schedule. Unfortunately, that’s just not an option.
This is my biggest barrier to working. How can I expect an employer to hire me full time in a “traditional” role when I can’t figure out when I will be doing well or not? When I can show up to meetings or not. Yes, sometimes I am productive, but other times, I can’t do a thing.
Today is a perfect example
This essay is going out shorter than intended and, frankly, unfinished because my day turned out to be more challenging than I thought it’d be. I’ve slowly worked on this today and will probably revisit this essay to improve it, but I thought there’d be some kind of… transparency, in posting it now, as I am struggling with the ups and downs.
One nice thing—even if today is hard, it does mean that there is always hope for tomorrow to be great.