I just came back from a beautiful week in California. I was so proud of myself for taking that step – which just a few short months ago would have literally been impossible. I did agonize before I got on the plane but I busted through anxiety. I packed for every possibility. I brought every single supplement and prescription. I was super mom. I monitored my sleeping habits, my food intake. I avoided risks that might lead to symptoms, I checked in with myself daily to navigate the midway between the peaks and valleys of my energy levels. I had a structured schedule from morning to night, and I didn’t miss a beat. It was incredible.
The thing about autoimmune disease is that there’s an inevitable crash. A bust. It doesn’t necessarily have to be a negative thing if you simplify it with input-output-balance terminology, but it’s hard to see it like that when you are the one that feels like your world is being taking away from you – even if it’s just for a little while.
When I stepped on to the return flight, a voice deep in my bones said ‘It’s ok now’, and I started crying. The walls came down. I could feel myself draining. The next day my mood was hyper-pendulous, swinging to extremes of sadness and laughter. My pain – which I’d fought so hard to keep minimized until everyone had gone to bed – started spreading like a wildfire in my lower back. I kept pushing ahead, clinging to the achievements of the last week. ‘Remember how well you did? Remember? You were ‘on’ every day and you didn’t even flinch! There was even a day that I walked around an outdoor mall for 2 hours with the kids and I only used my cane! I was doing so well. Why? Why does it always have to end?’
My parents and Cap saw the start of the spiral. Even my kids saw it – and they all saw it before I did. They stepped in to help before I even needed it, giving me a few days to reset and I was so grateful. Well, actually I was belligerent; then swung over to tearfully grateful; then swung back to a kind of grudging and guilty acceptance. I knew that in and of itself was a sign that I needed help. I tried to concrete a positive outlook.
‘This is great. I’ll do the laundry, set up the kid’s rooms, figure out the expenses from the trip…’ but in the end, I didn’t. I felt like I went from this amazing pillar of strength, to a slug. I couldn’t think straight. I couldn’t plot my next steps. I still felt the echo of the energy that flowed through me only a few days ago. The surge of all those possibilities bombarded me. I tried to be realistic but frustration seeped through the cracks.
‘You are the same person you were in California. You were managing your pain and your condition there too. You had symptoms, but you worked through it… why can’t you do that now?’
I had no answer. I just lay there watching Buffy the Vampire Slayer, waiting for it to recede pleasantly into background white noise so I could be productive or jump into an appealing task, bolstered by the unstoppable butt-kicking happening on screen. It didn’t happen. My brain raced in circles trying to find the way out. It never did.
I bargained with myself. ‘This free time is stretched out before you… people are giving you this gift…for God’s sake, do something!’
Season 6 had just begun and Buffy was clawing her way back into the living. I lay there watching her attempts to reintegrate with the Scooby Gang. I tried to rally myself, to push – but I wasn’t accomplishing anything. There was no schedule to be on time for; there was no reason to be at my best.
Of course intellectually I saw the humour in the whole situation. I knew that the very thing I was fighting against, the thing that I was agonizing over – this free time – was actually time where I was allowed to free fall. But I didn’t want to. I wanted to be Super Mom again. I wanted to be Super Kat. I wanted to- I didn’t even know what I wanted but I knew I was busted.
‘You should be able to hit the ground running,’ said my heart.
I bargained with my body.
“Stop being so hard on yourself. Enjoy right now. Everyone needs time to reset. Everyone. Babe. You have a condition. You need this time more than anyone else and everyone knows it. You know it. So stop feeling guilty about it, would you? There’s no reason to-“
Cap was aiming for a breakthrough, bless him.
“BUT I SHOULD HAVE SEEN IT COMING!” I screamed at him. Somehow I’d switch gears so that was good. Only now I was enraged. For a split second the world was blazing and there was some electric feeling that revved each time I slammed my fist down on the table in emphasis.
It was injustice.
It was anger.
It was the Not Fair Demon.
It was the ever-present Why.
Why me. Why this. Why now. Why these symptoms.
All those questions I couldn’t answer. The ones I can never answer.
But something happens with the Why’s. As soon as they escape, I hotwire myself into action.
Enter Berserker Kat.
‘I see Cap’s face. I feel the woodgrain against my hand. I hear my ragged breath…’ The anchor of my mindfulness unleashed even more guilt. My hand was still slamming on the table and I started to cry. And it wasn’t enough. I needed more anger. Because it was a close second to the energy I had last week. And I wanted that energy back. I could feel a kind of psychic lava burbling forth. I could feel the heat. I could feel the frustration. And I could feel the fight. I still never know if it’s a good fight or a bad fight. It is what it is, each time. And this time I was fighting against my body. I was fighting against it all.
‘…And how would Joss Whedon resolve this one?’, a distant part of me wondered.
I ranted. I pushed Cap away from me in a shower of self-loathing. I could feel the anger fuel me. Another burst of molten, irrational energy surged through and then all of a sudden I felt the cool cotton of the bed spread under my face and I realized I’d galloped upstairs. I started taking huge gulps of air and screaming into my pillow until my ears rang. Repeatedly, I unleashed a wounded cry to challenge the muffle. It felt like a song that went on forever, in the same key each time.
And then it just stopped. And I was lying there with that note just hanging in the air. No further ahead than I was at the beginning of it all. Still grappling with reentry. Still trying to acclimatize to self-care. The world grew still and very quiet.
“Wow. Taking the stairs two at a time! That’s pretty amazing.” It was Cap. There was a box of tissue hovering magically in my face.
“Thanks,” I said weakly. I was still in a ball on the bed.
“I mean, damn. You are really getting your strength back.” He was smiling.
I laughed. He sat down on the bed beside me and stroked my back. “You know this happens every time you have a win, right? It’s like you have to fight for the memory of it so you can move ahead. But you don’t have to. This part of it is ok too. This broken and crying part of it…it’s just as important in some ways. It doesn’t have to be perfect you know. It doesn’t. You just have to-“
“I know. I just have to breathe.”
“No. You just have to live.”
How do you surf the wave of your energy? How do you manage your ‘spoons’? Have you found a way to coast? Can you relate to the frustration of the boom and bust cycle? Let me know your story in the comments.
XO Kat (aka The Autoimmutant)
PS. This post’s featured image is a screenshot from Buffy the Vampire Slayer, Season 5, Episode 22,” The Gift”.
“You have to take care of each other. You have to be strong. Dawn, the hardest thing in this world… is to live in it. Be brave. Live. For me. ” – Buffy Summers