The pamphlets and the wiki articles and the doctor advice all say that ALS is exhausting. Your muscles are working harder than normal just to keep you upright. Your body is burning massive amounts of energy just to BE. And then when you ask your body to actually do something? It’s like you’ve run a marathon.
It’s just under one mile to the bus stop from my house. It’s not a hard walk, it’s all curvy residential streets, there’s no sidewalk for a little of it, but it’s not that difficult. Google Maps says it takes about 18 minutes. It takes me about 25 to 30. Yesterday morning, I headed out to run a couple of errands, so I walked to the bus stop to head out. It was 58 degrees and overcast; I was dripping sweat by the time I got there. Everything is so much harder than it used to be, in the stupidest of ways.
That bullshit thing with the spoon theory and the budgeting of your energy? It’s not really bullshit, turns out. …Not that I thought that it was to begin with; I’ve had chronic headaches my whole freakin’ life and I knew how draining it is, to be in pain all the time, how it steals your energy and makes it hard to just be alive. The budgeting, though. Man. I knew nothing about the budgeting. I thought I did, but HOLY FUCKBALLS I had no clue. I HAVE SEEN THE LIGHT. AND IT HAS SPREADSHEETS AND SCHEDULES.
My errands yesterday were *supposed* to be simple. Take the bus up the road to the post office to mail something, then head back home and stop at the store on the way to pick up my new, smaller prednisone scrip. Only…the post office didn’t have an actual COUNTER open, like they used to, it was just a machine that prints shipping labels, and it didn’t do international. I had to take a different bus to the main post office to mail it instead, which was about an hour away after waiting and bus ride and walking. After accomplishing that, I should have come home, but I was on a mission for little shelves for my apothecary bottles, anyway, so I walked about a half mile to the mall, and wandered a home goods store, but they didn’t have anything shelf related but DID have socks with lobsters on them. So I bought those. I got some lunch, then went to the beauty supply store nearby cause I’m out of top coat, then to another store in that same parking lot that might have shelves but didn’t, and then to the bus towards home. I hit up the store on the way home, got my scrip, and then wandered around a little while looking for various things (shelves, cute socks), bought some cleaning supplies, and walked the mile home. My backpack was full; not really heavy heavy, but it had some heft to it.
It was 64 degrees, 4 PM, and I was panting like I’d run home.
Out. of. goddamned. spoons.
And that budgeting thing is for REAL REAL because at the end of the night last night, I had to stop every other step when I brought up a laundry basket. I was just done. Stick a fork in me. This morning, I found myself pulling myself up by the rails going upstairs, because there wasn’t strength enough in my feet to get me there by themselves. I am bringing laundry upstairs by setting the basket on the stairs, walking up to it, set the basket up two more stairs, lather, rinse, repeat.
That will teach me, right? I mean, I KNEW it was stupid to do so much, but my stupid brain was all “Hey, we used to do this all the TIME, man! Just..take the bus out, walk around, maybe buy some stuff, maybe not, but just have a day wandering around. Good times, man.” and my body was all “Dude we’re not in college anymore, go home and sober up, Brain. And stop peeing in my bushes. I WILL call the cops, asshole.” “Douche. You used to be cool.” “Yeah that was back before you made us walk all the fuck around the city to prove to yourself that we still could. Turns out we CAN’T, asshole. Now seriously, I wasn’t kidding about the cops.”
It’s taken some getting used to. I’m having to relearn some behaviors, but they’re not all bad. Asking for help comes easier, which was a hard lesson. I’m a fiercely independent person; I can’t stand bothering other people for things I should be able to do myself. For the whole first YEAR of my ten-year relationship with the boy, I STILL asked for rides to places, to the point where he told me, “I will DRIVE you to the store, woman. Just tell me you need to go get groceries and we’ll go. You don’t have to ASK every time.” But I did. Now, though, there is no more demurring when there’s an empty seat on the bus. Before, my social awkwardness would make me just stand there the whole ride, even though all I had to do was ask someone to move a little so I could sit. Any more, ‘Excuse me, may I sit?’ is easily out of my face if I don’t just brush them aside gently and plop myself down.
I’ve learned to stop denying myself an easier time because I didn’t want to ask for it.
I’ve had to swallow my own advice to friends in need – there’s no shame in asking for help. There are people around who love me, people who want to help me. A ride to the fucking store may be the only way they can help, but IT MEANS THEY CAN HELP. And I should let them. There will be time for independence, time when I can’t do things for myself, but I don’t need to refuse a hand now to prove to myself that I don’t NEED help. I can ask for it anyway. Even if I can still do it myself. It’s breaking me in, for a time when I can’t. When asking for help will be mandatory and not a luxury, when my pride writes checks my strength can’t cash.
Besides, sweating is gross, and if I don’t have to, then why the hell should I?