Overdrafting the Energy Bank
A while back, I talked about the MS Tax, the price that people with Multiple Sclerosis often pay for being active. More and more people I know have begun to grasp the idea that I may be out of commission the day after doing my best impression at being normal. However, many people still don’t realize just how long it may take me to pay up, or what the consequences are. I’m here to remind folks that the “day after” being active might actually turn into multiple days and have a huge impact on my day to day life. Facing the prospect of paying up for several days can make decisions to leave the house quite difficult.
Of spoons and banks
Life with MS is taxing, especially once you’ve had the disease for a while. People love to use the “spoon theory” (where each minor action is a spoon and you have a finite number of spoons to use each day) to describe what life with MS is like. Whether you think of it as spoons or as simply a bank of energy, we do seem to have a limited amount on most days. Picking and choosing how to use that energy can be extremely difficult. I often feel like on most days, if we are leaving the house or even being especially active around it, we end up borrowing from our energy stores for the next day. That leaves us in a spot where we may get something done one day, but we have to pay it back the next. Borrowing energy from tomorrow can lead to then borrowing energy from the day after that, and so on. It doesn’t take much for this cycle to put you in a hole, where you’re left with not much energy to do anything at all.
I think some folks don’t quite understand how little I actually leave my house. They see posts on social media or see me in person and I look fine. If I’ve left my house though, I’m probably already borrowing spoons from the next day. Just showering, taking care of my dog, and well, just generally taking care of me depletes me. By the time I’m out of the house, I’m likely already on borrowed time, meaning that the next couple of days are probably going to necessitate me laying on the couch or even in bed. This is another big reason why I rarely travel places in what might end up being multi-day trips.
Extra critical of what I choose to do
All of this makes me extra critical of what I choose to do and when. I’ll have friends reach out to me about an impromptu dinner or happy hour and have to come up with an excuse to say I can’t come out. Usually, I say I’m not feeling well. The truth though, is that I may be feeling fine, but I have to think ahead. Do I have plans several days from now? Going out today will certainly have an effect on those plans. I even have to think about the little things, like will I need to shower before I go out? Will I have someone to walk my dog tomorrow morning (if I don’t, then I can’t risk going out, for his sake)? For me, spontaneously making plans is pretty much a no go. I’ve got what may seem like the most minute plans set for my week.
Small actions can have big consequences
The key to all this, that I think people grapple with or forget, is that small actions can have big consequences for someone with a chronic illness. The minor, everyday tasks that most people take for granted are the ones that steal most of our energy. Those are the reasons you probably don’t see us as much as you’d like. Those are the reasons why we end up canceling so often. Sure, I can probably make it out and have a quick beer with my friends, but if I do that, who’s going to feed my dog tomorrow? Who’s going to feed me? How will the trash get out? The dishes done? There is no such thing as a minor chore for many people who have MS or other chronic illnesses like it.
Do you struggle with insomnia?