The Day After

This is the day after. I planned and prepared for a day out, with people and things I love and dinner after. I laid my clothes out the night before, I packed my purse with the things I need, and the things I might need. Antihistamines, Tums, my epipen, pain meds and creams and the cane and parking placard and heated gloves and extra batteries. I knew I was going to be around animals, so the day of I made sure to take what I needed to prevent a reaction. Had good, homemade food before I left, drank lots of water and electrolytes and spent a quiet morning preserving my spoons.

I had great fun! I got to spend time with people I don’t get to see often enough. Took some photos, talked to kids about reptiles – a passion of mine still, even though I no longer own any. Snuggled with a sloth and croc and spent time getting to know these animals just a bit more, and then headed out for dinner with some amazing people. I was having fun, even though I could feel the flaring start. I’m home so much, and it was so nice to be out, and my energy was gone but I wanted to squeeze in every awesome moment I was able.

I knew the next day I’d feel awful. That day is today.

I feel like I’ve been plagued by a flu.
My guts are flipping over and angry, swollen and burning.
My lips are aching and chapped.
My head is stuffy and clouded.
My ears are screaming and feel plugged.
My eyes are sore and leaking and heavy.
My vision is blurrier than usual.
My face is numb and tingly and swollen and uncomfortably warm.
My throat is scratchy and dry.
My nose is running and sore, like a canker sore on the inside of my nostril.
My skin is itchy. All. Over.
All the things hurt. Everywhere. My hands are stiff, my hips feel like they’re on fire, there’s a dull, pounding ache at the back of my head.
It feels like someone is standing on my chest.
My knees are buckling.
My neck is stiff.
Talking is horrendous, because I just can’t seem to form words well, or remember them.
I feel like I have to pee nonstop, but there’s not much there.
And my breath – dear god, what kind of rotten triceratops did I eat?! There’s a horrible layer in my mouth I can’t get rid of, with a terrible taste.
Getting up takes longer than usual, and it usually takes a long time as it is. Walls are suddenly best friends that keep you standing when you’re vision goes black and breath turns deep and legs give out because you’re too lightheaded to stand on your own.

And, as usual, the exhaustion is thick – but this a different breed of exhaustion. This is exhaustion like falling asleep typing, or waiting for the kettle, or just eating breakfast. This is exhaustion so thick that functioning is harder than ever, and you don’t know which animal gets which food, and you forget where you put the fork you’re holding, and put your milk in the cupboard instead of the fridge, and can’t remember what you were doing while you’re in the middle of doing it. And all of these things are just a 5 minute window of your day. This is exhausted to a level that’s dangerous. It doesn’t take much to forget to turn the stove off, or trip down the stairs, or burn yourself because you DID forget to turn the stove off, or brushed your teeth with hemorrhoid cream instead of toothpaste. Thankfully, I haven’t done (most of) those things. I’ll let you speculate which ones I have. But they’ve all come incredibly close.

And this is just how it is now.

I knew this would happen. I’m not actually sick with a flu. But this is just what happens when I go out and overspend my spoons, which really doesn’t take much.

It’ll probably take me until Wednesday to feel back to my regular tired but functional self.

Worth it? Would I do it again?

Absolutely, because cabin fever and depression isn’t worth feeling just ok most of the time. Because that’s the option. Stay home all the time and feel ok, but the depression is thick, and that’s what happens when I DON’T make the effort to go out, even just occasionally. It’s not worth avoiding life for. This isn’t something I can do regularly, and I have to plan carefully, knowing there’s a possibility I’ll have to cancel if I’m not up to it, especially knowing how I’ll feel after the day is over. I have to plan enough to build my spoons up before going, because if I use them all up before I go out I just won’t have the energy to go out at all, nevermind recover after.

This is why I don’t go out often. It doesn’t take much to bring on a flare to begin with. A whiff of exhaust or perfume, certain foods, animal dander, temperature fluctuations – which happen ALOT right now because of the insanely cold weather. I advocate myself as much as possible, but there’s only so much I can be accommodated, and there are certain things that are simply unavoidable. I do my best with what I’ve got.

This is my new normal. And I’m learning to live outside of my box again.

I see a rheumatologist at the end of the month. Maybe there will be some answers? But then, maybe not, and I’m not going to stress too much over it. We’re making things work the best way we’re able. And I’m so, so grateful that we’ve got the support to make things work.


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