First of all no I’m not talking about my dry skin, so don’t worry…yet. The flakiness to which I’m referring has to do with all the cancelled plans, no shows, skipped appointments, and rain checks that often accompany the lifestyle of the chronically ill. Given there have been many times that getting to the fridge is an all day outing, I’m all too familiar with the cycle of anxiety, relief, guilt and isolation that comes from cancelled plans. All of this leaves me feeling like that lil croissant: the flake, the one that always bails, that people can’t count on. And although flakiness is a beloved quality in French patisserie, not so much in people ya know?
I do feel incredibly lucky to have the absolute best people surrounding me through the absolute shitshow that is life in your mid-late 20s. I am also very grateful to still be able to work, for the most part. This lends my everyday life a tiny bit of normalcy that lets me pretend sometimes that I am not in fact quite ill. It’s those times I’m reminded and have to bail, stay home, go to the doc, the ER, or take time off work, that *poof* all that pretend normalcy just is gone.
Anyone who has interacted with me longer than a month knows any plans we make always have that little asterisk referring to the fine print, that states the plan is 100% dependent on how I feel in the moment. On one hand it’s wonderful to have such understanding friends but on the other having that caveat and their flexibility never seems change how I feel about any of it. I still have the same cycle of anxiety, relief, guilt and isolation.
It always is going to suck to have to send that text saying, “sorry brunch is a no go today, having a flare.” The anxiety that leads up to it, the mental math of energy allowances, dreading cancelling yet again. Don’t even get me started about work that’s a whole other animal. But, as soon as you hit send you can melt back into bed, turn up the heating pad and it is a huge relief albeit bittersweet.
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8 days! I had 8 glorious days of no appointments, treatments, doctors or hospitals. It was a much needed break as I’m still stuck in this flare! But today I’m back to the grind because I’ll be in and out of Mass General for the next few days. I just hope I’ll be able to make it to every appointment. It can be so frustrating sometimes when my body fails on me but I am blessed that I have family and friends to transport me to and from MGH. • • So today I’ll meet with my new endocrinologist and my GI team, in preparation for my upcoming total pancreatectomy with islet autotransplantation and partial gastrectomy. I’m excited because I have so many questions I need to ask, tbh they’ve been driving me crazy! • Goodluck to all the #chronicillnesswarrior s out there fighting endless battles. You are not alone. 💜. • #professionalpatients #asecretspoonielife #livingwithchronicillnesses #chronicillness #chronicpancreatitis #acutepancreatitis #gastroparesis #chronicpain #exocrinepancreaticinsufficiency #epi #acf #aip #mecfs #autoimmunediseaseawareness #gastrodiseaseawareness #pancreaticdiseaseawareness #spoonie #spoonies #spooniesupport #spooniearmy #spoonieproblems #spoonielife #codepurple #tpiat #butyoudontlooksick
No matter how understanding those in our lives are, how many times I hear “don’t worry about it,” I’m still going to worry about it. Rescheduling Christmas morning because you’re having a flare is a huge bummer, no matter how you slice it. Those moments where you have o politely excuse yourself and find a dark room to sit in because your body is freaking the fuck out about nothing is isolating. It takes its toll.
Sure I love cancelling plans as much as the next millennial. Especially when I’d rather be in my jammies watching Netflix, but this? This is a whole different beast.