Hey y’all, Derek here with a late-night post. Today, I’ll be talking about CFS and RA flares and crashes, and how I manage my crashes. I’ve also linked some products I use that help me exist while I’m flaring (Affiliate disclaimer: I am a member of Amazon Associates and may receive commissions on linked products). I’m writing this today as I’m recovering from a crash because a) it’s fresh on my mind and b) I hope it helps people.
Let’s get into basic definitions. I define a flare and a crash differently. Flares, for me, are longer-term and more painful than baseline. Sometimes, I can flare without crashing. But, I can never crash without flaring. A crash is a serious, rapid loss of energy and a significant pain increase. So, basically, a crash is a rapid onset flare.
Now, I can sometimes tell when flares or crashes are about to happen. If I can tell, I typically get the realization within 12 hours. If it’s an impending CFS flare or crash, my exhaustion levels will begin to skyrocket and I get a sinus infection, and at that point, I go “what did I do too much of” and track down the root cause (overworking on school because of ADHD hyperfocus is the most common). With RA crashes or flares, I get a lot more symptoms. The biggest one is probably an increase in aches and fatigue, as well as an increase in pain in typically managed areas (i.e hips). If I start to get achy, I know shit is about to hit the fan. Being able to anticipate them is a privilege because it allows me to do “crash prep”, and sometimes, I don’t have that opportunity and am rendered SOL (shit outta luck).
When I feel a flare coming, I instantly do two things: tell my mom and start crash prep. Crash prep, for me, involves moving essentials within arms reach of the bed. I have a queen-size bed, so it’s easy for me to work or migrate things to bed that I would otherwise do at my desk. I start by clearing my nightstand, which becomes my crash management center. I place my emergency and regular meds closest within reach, beside a beverage (typically a Mountain Dew because I need sugar and caffeine) and some cashews/salty food (because POTS). Then, my glasses, pens, and notepad go beside my lamp on the side closest to me. I sleep shirtless, so if I have non-reschedulable meetings the next day, I put a folded t-shirt on the other side of my lamp. Also on the other side of my lamp is my deodorant, a comb, and hair detangler spray for some basic self-care. On the floor by my bed, I unfold my “bed desk” (a nifty little laptop stand/table I got for Christmas) and put my laptop and mouse, as well as my heat pad on it.
If I’m anticipating a very hard crash, I turn on my out-of-office email “crash response”. I have a disability disclaimer in my email signature anyway (along the lines of “I am disabled and chronically ill, so please be lenient when expecting fast responses”), but when I’m crashing, I like to give people a bit more of an “I’m medically unable to be at my desk right now, I’ll get back to you as soon as I can” type response. I’ve put out the full texts of all my email disclaimers and the auto-reply here if you’d like to use them. I’ll also let my IEP case manager, teachers, college disability support specialist, professors, bosses, and colleagues know that I may miss deadlines or be doing a reduced amount of work until I’m back to baseline. Then, I sleep.
And then wake up and say “ow, fuck, I can’t move.” At this point, I tell my mom I was right, then tell my partner it’s gonna be a rough day, and take my meds. Since I did all the prep beforehand, I can manage most everything independently and be left alone (I tend to prefer being left alone when I’m crashing or flaring). But, there is still the inevitability I forgot something (today, it was ice), so I’m grateful I’ve got my mom around to lend a hand. If I’m up to it, I pull my desk up and my day basically looks like a light work/school day from bed with my focus being on emails. If not, I just mindlessly scroll Twitter and watch YouTube waiting on the pain to go back to baseline or my energy to return.
I acknowledge having access to a lot of the things I mentioned is a privilege. Not everyone will have $60 for a bed desk. Not everyone has access to meds that actually work for them. Not everyone has amazing bosses, colleagues, and support systems who care enough to pay attention when you’re sicker than normal and help in any way they can. But, I do, so I use them all. The biggest tips I can give you is to tell you to utilize your resources, and ultimately, it is okay to rest.
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