That is the question.
I don’t like that I’ve become a person who requires so much help. I struggle with it, the idea that I am no longer the independent do-it-yourself kind of woman I kind of liked being for so much of my life. It always amazes me how many basic daily tasks are impacted by a lack of energy, balance, strength or coordination.
I struggle sometimes over which things are “worth” my spoons, and which are not. (For more info on this whole Spoon thing, go here: http://bethybrightanddark.com/2016/10/28/today-i-learned-about-spoons/)
I have this idea in my head that my energy, my spoons, should be wisely spent and not squandered doing dumb stuff. So if I need to carry a bunch of heavy stuff or do a bunch of banal chores, I tend to batch those things until I know I’m going to have some help around (thanks to my family, usually my nephew, who helps me out on the regular). This spoon conservation method seems like a wise choice, for the most part, but it has it’s downsides. Most of them are mental.
Asking for help, being helped, waiting for help – all of these things change the way you see yourself. They make you feel less than whole, unable, needy. I suppose there is a school of thought that if you are indeed those things (sometimes, I am all three), fighting that reality is a foolish quest. Accepting that you need help is part of being “disabled” and a harsh reality of having a degenerative disease. On the other hand, reminding yourself that you’re still you, the you you were before being slapped with the label “multiple sclerosis,” is pretty important, too.
It’s little things, mental things, things you think don’t matter that matter a lot, that can make the difference in a bright day or a dark day. Sometimes when you let yourself recover a bit by sleeping in until 1PM on a day off, you want to get out and do something normal that makes you feel normal. Just like other people who are…well, normal. (As if anyone actually feels normal! But that’s another post entirely.)
I got up. I threw on my weekend uniform. I gathered my things and ran some errands. Nothing huge. I had to ship something back from the holidays that needed to be returned. I had to get cat food. I was also hungry. So I needed some food.
After treating myself to lunch at Five Guys, I headed to Petco to get the cat food. I knew I could also use litter because, well, four cats pretty much means you always could use more litter. I hesitated…I had this giant bag of cat food. I had the paw friendly ice melter junk (it’s supposed to get snowy here tonight). Could I manage litter on top of all of that? Should I wait for help?
I decided I would get the litter, too. Hell. I was in the store! It seemed silly not to. I told myself I could leave it in the trunk and wait for help to get it into the house, later. There would inevitably be a visit or an opportunity to get my nephew over here this weekend when he could carry the heavy junk for me. I got three boxes of litter, loaded the entire mess into my trunk, walked a little extra back and forth to return my cart and get back to my non-handicapped parking spot. Then I drove myself home.
Sitting in my driveway, thinking about the stuff in my trunk, I was feeling like I needed to try unloading it myself. I needed a mental boost. I needed a bright day after a few that felt decidedly kind of dark-ish.
I took my time. Unloaded the cat food and the ice melt first, and left those on the porch. Then I got the litter – carried two boxes to the side door, went back to the car and got the last one too, and then went inside the house to drag them down the stairs to my basement – which I did, one-by-one, until the task was done.
I filled two giant contractor trash bags full of empty litter boxes and carried those outside to the trash. Then I went back outside to get the big bag of cat food still sitting on my porch.
I realize how boring this sounds. I realize that this isn’t such an interesting post and I’m not even sure why I felt the need to write about it at all. But the truth is, I needed that mental boost. I needed to do it myself.
I had to sit and rest when I was done. I chatted with my mom on the phone a bit. I fixed a chipped nail that had suffered damage from the chores (because it figures!). I took a handful of Ibuprofen. By that time, it was acceptable to me, in my head, to admit that I needed some spoon recovery time and I plan to lay low tonight, maybe snuggle up with my latest book (it’s a new-ish one from John Irving, my favorite all time author, and I am already engrossed).
For some reason, just doing that basic set of tasks, that to me felt anything but basic, gave me the mental boost I needed to allow myself the luxury of not feeling lame for having another rather low-key day. Kind of like changing that damn light bulb, yesterday. I need to push myself sometimes because not doing it kills my spirit more than doing it kills my body.
Oddly, it was my 76-year-old mother who taught me this lesson over this holiday break. We’ve been spending a bit more time together than usual because of the holidays and I’ve been watching her keep going, even when she’s in pain and struggling, because she knows that stopping would be worse. Watching her do things that are simple for many, but hard for her, made me understand this finally.
I know I need to be careful and not push too much. I know I need to be extra focused and diligent to make sure I don’t actually hurt myself. And don’t get me wrong! I’m not over needing help. I will always need help and I know to ask for it no matter how much I hate to do it.
But I’m starting to realize that taking my time, making many trips, slowing down and carefully doing the thing I think I can’t do is something my broken brain really needs. That seems like a good thing to use some spoons on, even if it’s not all that much fun or exciting.
It helps me feel “normal.” That needs to be enough.