This post was originally published on my personal blog site.
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A spoonie is someone who deals with a chronic condition that frequently or randomly takes away their capacity to live life how they want to. If someone says, "I'm low on spoons," it means they probably don't have the energy to do something specific. This doesn't mean they don't have energy for anything.
Being a spoonie is a balancing act. We have to be picky about what we spend our spoons on. This is where the tweet comes in. It's hard to figure out the balance of what you want to do, what you need to do, and what you should do.
You may want to go out to dinner with your friends because you cancelled the last time. You may need to do the dishes or some laundry because it's piled up over the past few days.
But what should you do? Are you in pain? Are you tired? What are your limits?
I haven't always been a spoonie.
For 13 years, I played soccer nearly all-year-round. I quit after my first year of college. Rose-Hulman is an extremely fast-paced school, all the time, and I couldn't keep dedicated 3-4 hours a day to soccer and not get any playing time in return. This was a really hard change for me, emotionally and physically.
That last season, I was in my second car accident. The impact passed from my foot on the brake, up my leg, and into my SI (sacroiliac) joints. This is where your spine connects to your pelvis. Since then, I've had a lot of inflammation and pain in the area.
Two years prior, in my first accident, the vehicle I was driving rolled on its side after spinning out on ice. I never really got a full diagnosis from this, but had back spasms on the lower-right side of my back briefly treated by a chiropractor.
Just last year, I found out I have a slipped disc in my lower spine. It was a relief finally having an answer to all my back pain, but I was still sad about all the time I'd lost to the pain preventing me from functioning. I'd gained a lot weight because I couldn't exercise (and lots of college stress).
Aside from my back problems, I also started getting migraines very regularly my freshman year. I was taking "as needed" medication every single day. I ended up going to the ER for the first time due to a migraine a couple of years later. (2017, I think?) That's when I finally got real treatment for them. I saw a neurologist and a found a GP experienced with treating migraines.
I took a lot of medication after that which, thankfully, slowed down all the migraines. Not thankfully, I had about every side effect in the book for some medications. I couldn't hold conversations, my face and fingers were going numb, and I felt like a zombie.
This is when I truly realized I couldn't keep doing all the things. Something had to give. It couldn't be school; I was already past the "normal" 4 years. I just needed to finish college. So, I stopped doing anything else. Some days, it was literally all I could do to drag myself to classes and group project meetings. I ended up missing a lot of classes. My grades in some of them suffered beyond repair. (I made it out though, woo!) My mental health suffered greatly too.
If anything good has come out of these experiences, it's that I've learned a lot about self care.
This is a summary of the tweet thread I made in response to the one above.
I usually have no idea what a day will be like until I wake up and get moving. Sometimes, I'll wake up with a migraine. If I have it all day and fall asleep with it, I will probably wake up with it the next day too.
My back doesn't bother me as much anymore, but I'm usually pretty stiff when I first wake up. The chronic pain typically is in my legs. On the bad days, it feels a bit like growing pains I guess. Like a heavy ache from my thighs through my toes.
My advice is to know your limitations. I'm pretty upfront with employers about the conditions I have. Some are judgy about it, some are fine. My current job has unlimited PTO and I can also work from home from time to time. Both of these are super helpful for me.
For example, if I have a migraine, it's helpful for me to work from home so I can minimize my environment as much as possible. Driving to work, walking through the city, and working in an open office layout with fluorescent lights only exacerbates migraines. At home, I can find a comfy spot to sit in with my laptop, turn off some lights, and close curtains to block out more light.
As for the unlimited PTO, that mainly eases my fears of being judged for "needing a day." Whether that's for resting because of pain or taking a mental health day.
Spoiler alert: you probably won't need as many mental health days if you work in a supportive environment.
But let's talk about the other times where these things aren't applicable. If you have to go to work, try to express to your team if you're not operating at 100%. I hope they understand that. (Is anyone ever at 100%?)
Once you're home, use your remedies! I have 3 or 4 things I try before declaring my migraines as "impossible." After that, all I can do is lock myself away and sleep. That seems to help some of the other conditions too!
Just take a break. You are one person and can only do so much. Don't overextend yourself. You and your work will suffer.
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