This past week has been really tough.
On a typical day I get about six hours of activity before I am reduced to a lump of cells, sinew, and exhaustion watching YouTube videos in bed. But this week, oh this week, I have been waking with low spoons (read more about the Spoon Theory here) and I haven’t once made it out of the house with enough spoons to get through an entire day (which is already a modified I-get-maybe-six-hours-of-activity-per-day day).
I’ve been reading a lot of “What I Wish Others Knew About My Chronic Illness” type articles, but the truth is: I don’t have the energy to break it down to those around me. Not in the moment, at least. In the moment I can’t say “So, when you say [enter whatever here] to me, it makes me feel [whatever] and I’m already grappling with feeling [that thing] on a daily basis so if you could please just be more aware of that, it would help me not feel so [that].”
Everyone I know, myself included, who lives with a chronic illness already feels an immense amount of self-reproach. Whether it’s for the things we can’t do or the person we no longer are. We know. We agonize over it. We make ourselves sick agonizing over it. We push ourselves. We extend lot of energy to be present in our daily lives. And then we spend days on end with a nasty flare up and more guilt. It’s super vicious and never ending.
The thing I wish people knew about my chronic illness is that I have a lot to work through every day and, for the most part, I get through it. It’s deeply exhausting and I don’t truly have the words to describe the toll it takes on me. I’m fighting, every day, just to stay on top of life. I want to mourn for the active person I used to be, but that doesn’t help me. Yeah, I used to be able to [insert stuff here], but I can’t any more. All I can do is accept that.
Help me accept who I am now. You can do it. I believe in you.