There is a concept in the chronic pain/illness community called being a “spoonie.” It is something that I have been thinking a lot about this week in particular, so I thought I would spend a bit of time writing about it. I mainly need to write it out so I can convince myself that I need to pay more attention to it because I keep pushing past my limits and paying for it. This week is also the one leading up to my big appointment with a neuromuscular neuropathologist, so I should have been taking it easy on myself. Instead, I have been coming up with all kinds of excuses to push myself too hard.
What is a Spoonie?
Before I get too far, I should explain what a spoonie is, or at least my understanding of it. The basic idea is that people dealing with chronic pain or illness have a limited amount of energy that they can use up each day, which they refer to as their spoons. Some days, you start the day with more or fewer spoons, so they have to plan more than a normal person would about how they are going to use them. Unlike most people, a spoonie has to be very careful not to exceed their limits because it won’t just be a short-term feeling of getting winded or tired; instead, it might cause a flare-up of their symptoms. It is a very hard thing to be told by your body that you can’t do the things you used to do, or in the same way you used to do them, so there is a mental toll as well.
How Did It Start?
For me, this whole thing started back when I had that sudden ER trip with chest pain over a year ago. Ever since then, my body has had multiple odd symptoms that the doctors haven’t been able to match up to one thing. One of the biggest issues outside of the constant pain would be the tiredness. Ever since then, I have had days where just getting out of bed can feel like a struggle. I have had a lot of ups and downs in terms of how much my body can handle. I have had many days that have ended with me eating a small dinner before climbing into bed for the night, completely exhausted.
On top of what you force yourself to do, there are other things that take away your spoons. From what I can tell, my spoon count also seems to be impacted pretty significantly by the weather, which can be a real pain in the butt. The other big one is my emotions, which can also reduce my spoons. For example, having a stressful meeting or getting some bad news might mean that I lose a spoon or two that I didn’t plan on losing. All of this combined makes it a struggle to do the things you want to do when you want to do them. Especially when considering that on top of that, spoonies still have their chronic illness to deal with.
What Happened This Week?
Alright, now that we got the background out of the way, let me tell you what happened this week. It started on Sunday when my wife and I were getting really stir-crazy. My wife had just gotten her diagnosis for fibromyalgia the week before, and with that news in hand, we felt like we should start pushing ourselves a bit more. The doctors told her that she needs to start doing gentle exercises and stretching, but not to overdo it. We struggled to come up with something good to do since it is so hot outside, and we landed on going to a bowling alley to play a single game. We figured we would bowl really slowly and take lots of breaks. We were both pretty excited because we hadn’t been bowling since before we both got our illnesses. Plus, the bowling alley we found also had 10-minute escape rooms, so that sealed the deal because we love escape rooms, but knew we couldn’t handle a full hour-long one anymore.
When we got there, we started with the escape room, which went really well and didn’t involve much bending over at all, so that one wasn’t hard on us. In terms of spoons, it was like it didn’t drain any. This is still the confusing part for me because I only know when I am on my last spoon. Maybe I will get better at that over time…
Anyway, we did our game of bowling next and were both shocked that it wasn’t too bad. It did take spoons for sure, though. We both got a little dizzy and had to sit for a bit every few frames. The good news is that we did finish the whole game, so that was super exciting. We were both considering playing a second one, but we were smart and decided it wouldn’t be a good idea, so we ordered a little snack there and sat and ate for a bit. Good thing too, because the bowling caught up to us, and we both took a bit to recover. I guess the adrenaline wore off. We ended up sitting for quite a while, long enough that we decided to play a round of pool before we headed home.
Sunday went great, and we both woke up Monday feeling overall pretty good. A little tired, a little sore, but really not that bad. This is where we should have realized we needed to spend more time resting, but we didn’t. Instead, we decided that after a full day of work, we would go try to pick up a bit of furniture at Ikea. The plan was to go straight to the chairs we knew we wanted, try them out, then go to the pickup area. We know all about the shortcuts in Ikea, and we were going to get in and get out. Instead, we made it to the chairs to try sitting in them. First, I ran out of spoons and got light-headed, then my wife ran out of spoons and started to get really sick. We carried each other to the food court to get some water, and she needed some salt for her POTS. At that point, we were both shaking and not feeling very well, but also too stubborn to just give up and go home. So back into the pickup area we went.
The rest of the story is, luckily, boring because we made it back home. I dumbly decided to put the chairs together. So, of course, I went into a full flare that night and went to bed in pain that didn’t go away until Friday night. My wife’s flare was over by Thursday, so hers wasn’t much better. This, of course, led to us having a rough week because it’s hard to take care of each other when we are both in a flare at the same time.
Why Are My Spoons Leaking?
The “leaking spoons” thing is a bit of a joke that I have with my therapist. The problem is that I know I have limits, but I just have such a hard time figuring out what they are. I know I am tired and that I am running on empty, but I also remember times in the past when I just pushed myself to finish something. Like moving into a new house, you push yourself to pack up all the boxes, and you are sore for a week. You do it because you have to, right? I have that same mentality ingrained in me from growing up on the farm, but now it’s not a healthy habit for me. All of my doctors have talked to me about being careful, trying not to push too hard, and spending time to rest and recover. I am horrible at resting, though. I am the kind of person who goes on vacation to do things. I don’t get the people who go on a “relaxing” vacation. What even is that anyway?
I guess technically this is a three-day weekend for me since I am taking off Monday for my appointment with the specialist. Mainly doing that because they are out of town, though, but maybe I can find some time to relax in there too. We are going to stay in a hotel overnight nearby, so hopefully, it won’t be too stressful to make it to the appointment on time. I will try not to wait a month this time to write about how the appointment went. Got my fingers crossed that they can help me figure out what is going on. Bye for now!