When you have a chronic illness like Fibromyalgia, you have a limited amount of energy, and it doesn't always get replenished in the time-frame or in the ways that you think it will. The Spoon Theory is a really helpful tool to help us describe to non-Spoonies how it can feel like energy is a finite and rare resource for us, and even further, helps to explain that we do not wake up with the same amount of energy every day and that all tasks do not require the same amount of energy to complete. Some days we have more, some days we have less, and some days our energy is squandered far more quickly than we think it will be- and there isn't anything we can do about it.
All in all, this adds up to an equation for Spoonies. A decision that we have to make before doing or committing to anything at any time. It's something we do both unconsciously and consciously throughout every day of our existence. We have to decide if we have enough energy to perform a task, and then decide if we will have enough energy left over to do the rest of the things we need to do that day if we DO decide to preform the task in question, THEN we decide whether or not doing the original task is worth it or not. Because of this, tasks and goals are constantly prioritized, reprioritized, put on hold, and sometimes taken off our to-do lists for good.
A couple weeks ago I had to travel for work, and I worked pretty hard (and put in some long hours to boot) on this trip. I'm sure it doesn't surprise my fellow Spoonies to hear that when I got back, I promptly got sick. It started with a sore throat the morning after I got back, and before 24 hours had elapsed, I had a full-on Summer cold. Boo!
It's unfortunate that most Spoonies tend to have a higher chance of getting sick when they push themselves too hard, but the fact that getting sick makes our other symptoms worse seems just downright rude. Being inhibited by the limitations my Fibromyalgia symptoms place on me is bad enough (I'd much rather be able to work and have adventures without worrying about getting sick and/or a possible flare), and let me tell you, being a sick exhausted mess is NOT how I wanted to spend the last two weeks!
As one of the approximately 12,000 people in the USA with Fibromyalgia, I can personally attest to the need for accessible places. Most of the time, I'm pretty able-bodied and can get around fine, but not everyone is, and frankly, when my symptoms start acting up fatigue and muscle weakness become very serious issues, and my abilities to walk, carry things, etc. need to be ascertained/addressed from moment to moment in times like this. Now for me, walking isn't always easy or reliable when my symptoms flare, but staying home and binging Netflix isn't always what you want to do (or the healthy choice). Having accessible places that you know you can go is really important when you may not necessarily be as able-bodied as other people or don't know how you'll feel from one moment to the next, and fun fact: not knowing places that are accessible for you can be SUPER depressing.
Now personally, I love nature. I love a garden, a nature walk, a hike, etc- but these types of places are not always great when you're symptoms are flaring, walking is difficult, or if you rely on a mobility aid- which is, as you can imagine, just a total bummer (to put it lightly). Now, being a Star Wars fan, I wanted to see where they filmed Endor, so I definitely wanted to go to Muir Woods, a national park about an hour away from me, so you can imagine how happy I was when I saw that Muir Woods was totally wheelchair accessible as they had a boardwalk path serving as the main path of the park.
This meant, no matter how I was feeling, I could enjoy a pretty epic National Park- and this isn't always the case, so I was super stoked! Gardens, a lot of the time, will have some paved/firm paths, lots of benches and fairly close parking, but nature reserves/national parks and hiking trails are not always the most welcome let alone the safest choice when you're flaring or don't know how you'll feel from one moment to the next but NEED to get out of the house, and a set-up like this park had totally gave me the warm and fuzzies.
So I've been really, really tired for about two weeks now (like really struggling tired), and what little energy I have gets used up pretty quickly because, you know Fibro-fatigue is weird. Well today I finally got the energy to go out and grab some lunch (I love eating lunch on a nice sunny patio!) and up to that point, everything was going great. I got myself together, drove myself to the place, and had some lunch. So far, so good. Then, still feeling alright, I decided to pop in the shop next door, then, as I was looking at the scarves, I was suddenly so tired all I wanted to do was lie down right there in the store- not exactly an ideal situation.
Sensory overload is a common symptom of Fibromyalgia, and for me, sensory overload is worse than my chronic pain. I mean, being in pain all the time sucks, but frankly I think being completely overcome by your senses is worse, even if it doesn't happen to me as often. Hell, just being overwhelmed by one sensory system sucks let alone more than one at the same time!
Now most people with Fibromyalgia have multiple symptoms, and while I think there is a lot of discussion out there about how difficult it is to manage many symptoms, I don't think I've hard anyone say that they struggle with certain symptoms more than others, and I think it's time to add some nuance to the conversation- so I'd like to say that out of my many symptoms, I think I struggle with my chronic nausea and sensory overload the most- specifically when it comes to noise and smells.
Like a lot of people, I traveled to see family for the Thanksgiving holiday. I flew from the rain and fires in California to the cold and possibility of snow in Detroit, Michigan.
This is required some preparation as I don’t don’t do well in cold, but so far wearing four layers seems to be working- but it’s supposed to snow on the day I leave so keep your fingers crossed for me!
As much as I love to travel, it isn’t easy with Fibromyalgia. Being cramped in a plane and sleeping on air mattresses or sofas or lumpy hotel beds isn’t exactly ideal. Plus, there’s activities and lots of action you don’t want to miss out on, so you try to force yourself to do more than you generally would, but don’t want to overdo it because you have to get back to work and life after the vacation is over and don’t want to work yourself into a flare- it’s a difficult rope to walk.
Fatigue is a symptom I suffer with, and I suffer with it often, but for the last few weeks my energy levels have been lower than usual. I'm just tired after being tired, while being tired. With chronic illness, we’re constantly walking the tightrope between what we want to do and what we have the energy to do- and it's not a fun place to be.
As much as I hate to admit it, I can't do all of the things I'd like to do. I've been seeing doctors about chronic pain and other discomforting symptoms since I was 14 (my Fibromyalgia diagnosis came about 13 years later), so the disconnect between what my mind thinks I can do and what my body thinks I can do has pretty much always been there- but it doesn't make it any easier to manage. In this side-hustle/all-go-no-quit/glamorize-the-grind culture, it's not always easy to say, "No, I can't take that on, I need to take it easy for my health right now," and in this economy, it's not always possible. This the rock and hard place I find myself in this week.
Have you done a mental health check-in lately? In light of the news of Kate Spade’s, and now Anthony Bourdain’s suicides this week, I’d like to encourage you to check in with yourself. How are you doing? Do you need a self-care day? Someone to talk to? Help? A change?
People with chronic illness tend to struggle with depression and other mental health issues more than those who don't have health issues, and I'd like to encourage you to check-in with yourself today. There is a stigma surrounding mental health, but as this is something that affects our community I'd like to share my story with you in an effort to help normalize conversations around mental health.
So I spent most of my 20s as a burlesque dancer, and stopped a few years ago because 1) the pain and fibro fog were getting really bad and the troupe was getting more popular and keeping up with the schedule was getting too difficult, and 2) my ex (who I was with at the time) wasn't in love with the idea of a burlesque dancer helping to raise his son or have pics of me in costume/lingerie on the internet. (Ugh. Terrible right?)
I still go back and dance occasionally because I love it, but I also know that I'm not as good as I once was- my extensions aren't as good, my flow isn't as clean, etc.- and most of this is because of pain and the new limitations my body has, and part is because I just don't dance often as I used to so I don't have the strength and stamina.