I don't know how to balance my craving to do more with my body's limitations. is this the boulder I will push up the hill for the rest of my life? I felt SO GOOD, mentally and physically, for what felt like weeks (I have no concept of time, it was probably shorter). I thought the flare was over? easing? I was getting to a new normal, at least. and then I absolutely stumbled, tripped, and fell into a crash last night. I felt it coming, but I was fighting it.
I made a mug of coffee, took maybe two sips, but I could feel that I couldn't keep my eyes open. it was only 4pm, so I laid down for a nap (which I never do bc then I usually can't sleep at night) bc I was afraid I was going to fall asleep holding my coffee. it was the kind of tired you feel in your chest, pulling the air out of you. not tired, FATIGUE. I feel like fatigue people know what I mean. there's a difference between the two. I was out lightning fast. and when I woke up it was 10pm and my dad was getting ready for bed.
so I had a cigarette, took my night meds, and got back in bed. I was out before an episode of a show was over I think. and slept until 8am. I think it all rounds out to 15ish hours of sleep. and honestly, I could absolutely have kept sleeping this morning. but I feel bad about making my dad stay quiet in the morning when he only has so much time before he leaves for work. so I pried my eyes open.
I can feel the fatigue in my chest today too, sitting heavy on my sternum and across my breast plate. it tugs on my eyelids too, I can never seem to keep them all the way open when the fatigue hits. it's always another round of mini-mourning when a symptom that had eased off for a while comes back. it's always straight to self-blame, you feel like it's a punishment for something. for living life. even if what you were doing wasn't particularly fun or enjoyable, but just meeting requirements for being alive or obligations you didn't ask for.
I wasn't going to leave the house today, I was going to rest and maybe push it with some enjoyable low-energy art things. but I got squeezed in for a blood test I have to do for a new medication, so unfortunately Sick Admin takes priority. it always takes priority. people tell you not to make being sick your whole personality, but tell that to the appointments made out of my control that have no concern for my schedule. tell that to my knees that scream with pain when I stand for too long, which prevents me from going to all of the cool events I just get to see pictures of on instagram after. tell that to my body, that decided I NEEDED to sleep last night, despite having planned in my head that I was going to finally go see this band play last night despite my screaming knees- but doors were at 8pm and I woke up delirious at 10pm.
this month is so busy & I was optimistic bc I had been feeling so much better mentally and physically. but as it's ramping up I am starting to crack. unfortunately we are not even at the busiest part yet. so, all I can control is the mental. I am practicing combating negative self-talk with speaking to myself like a small, soft creature. it has pretty good results if I can stay on top of it. I have to remind myself that all I can do is work with what I can control, and the rest I have to go loose. move with what we can't change like it's a current, don't thrash against it- that's how you drown from exhaustion. it's fine if things move too fast, too slow, things will move as they move. you can only do what you can with what you have, and if stuff doesn't happen- it's okay. things are unfair, they are, and so you have to just do what you can- and that is not only enough, it's spectacular. because when things are stacked against you, getting it done in any fashion is worth being celebrated. you're okay, even if things are out of your control and it's scary, you have what you need in this moment and for right now, it's okay. for right now, don't think about the future so much. just be in the moment, and take the time to feel okay.