If I accept the name, I accept the limitations.
I guess having Chronic Fatigue Syndrome renamed to Systemic Exertion Intolerance Disease has made me think a lot. Things like the fact that heart rate monitoring to stay within my energy envelope may not be a bad idea after all. Things like naps are okay, acceptable, even encouraged. I won’t miss out on anything while I sleep; it is okay to sleep enough. Preemptive rest is a strategy that seems to work for things like stressful days, birthdays, vacations, holidays, house-guests, and other events for certain SEID/ME patients. I don’t have a chance in participating in most of that stuff right now, but I’m trying. I’m saying yes more often, and really pushing myself to work as hard as I can to get this skincare business started.
On another note entirely, my business partner and dear friend, we will call her Kayla and her boyfriend Jeff, asked me to be the next in line to take care of their little man and raise him in case the unthinkable happens and they are not around. He’s my favorite little kid, I didn’t realize how hard I would fight for kids of my own until I met him. Kids of my own, by the way, is fully open to the notion that adopting counts. I just want to be a mom.
I ask Kayla all the time what each thing she does is, why she does it, learning, trying to osmos all the wonderful mom-intuition she has and the beautiful bond her child and she have, even at 7 months. I’m so beyond flattered that despite my being not well, and her fully knowing the details of that, she trusts my dedication to being a good mom. She and I both grew up with less than ideal adult support, to put it mildly. It is important to both of us that her son have a community to grow up in, who love him and are invested in his thriving. Being around him makes me feel alive, makes my pain decrease, so even though I can’t safely get pregnant for a long time, I am planning, learning, and readying myself mentally for what I consider the most important job of my life. I know it might not be the journey I expect and that is okay. At the moment, any plans for pregnancy are on hold; I have to keep in mind the drugs I am trying to get off which are severely damaging to fetal development. I have to consider danger to the fetus and myself if I have EDS type III, and I have to consider my own genes, how bad they might actually be, and whether I can let another human suffer like I do on purpose. That question is a heartbreaker for me. I carry things that only an insane person would try to have a kid knowing. On the other hand, I also know that with my spina bifida there wasn’t much chance that I would be a merit scholar, have perfect SAT’s and extremely good ACT scores, or be in the %99.9th nationally on standardized testing, but yet, that happened. I can’t rule out the possibility for a miraculous exception to the doom and gloom statistics that have been thrown at me.
Today, I am excited that now I get to be Aunty Jessi, and that just makes me heart siiiiiing. I never in my wildest dreams imagined I would go to sleep today feeling so loved and included by my friends, and feeling such a swell of love back in return. Talking to other bloggers always gives me that sense of wellbeing as well, but being asked such a huge question by someone I admire so much left me bawling happy tears for hours, waiting for my boyfriend to get home so I could tell him.
Oh! I folded towels without getting so dizzy I thought I was going to pass out. Super exciting, I know, but that’s a step up from the last few weeks, for sure. But I did wake up this morning and immediately start throwing up as soon as I took my pills, for at least the first half hour I was awake I couldn’t stop, or stand up. Not sure what’s up with that. Not too worried, either.
My body does weird stuff!
Expect the unexpected!
Something like that.
So much happiness gifted to me by my friend Kayla’s trust and confidence. So much work to go, yet, before I feel worthy of that.
I guess they can change the names all they want, but in the end, I’m not ready to give up or accept my limitations.
About Jessi Finds Out FibroHi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.
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