I just can’t get over how talking to a friend from the same small town I am from reminded me of being a child and hearing all the times someone told me to eat right and exercise. And all the times I blew that off and ate a cookie or smoked a cigarette or decided not to work out. What made me react to perfectly good advice like a dumb-ass? Who knows! Who cares, kids don’t do everything with the same logic that adults do (not to say that their logic is less! It can certainly be more astute sometimes) and that is behind me now.
As an adult who suffers from chronic pain and has been through almost every treatment and test and minor procedure to attempt to lessen that pain somewhat, and who has taken every pill and every supplement and every “miracle cure” and hoped so badly that something would work, I am finding that all I am left with are lifestyle changes. Fortunately, they are lifestyle changes I have wanted to make for a long time, but have not had the courage to pursue. That’s changing now, I’m starting to realize that yes, my body does hurt every second of every day, and yes, I can still be happy for hours at a time despite that.
Being ill has taught me that all those things we shrugged off as kids, all the health-class reading and the boring PE classes; that stuff actually mattered. What the hell, right?! In all seriousness though, that is really the end-all-be-all of managing my chronic illnesses and pain. I’m not great at always eating the right thing, and I sometimes skip sleeping, eating, and working out, because of illness, but in between not getting it right, I have to keep trying. I’m finding as time goes on I get better at certain things, but my progress is almost so gradual that I miss it if I am only looking at the ground gained from one day to the next, instead of the big picture. Looking back I can tell that certain things have shifted, for good. For the first time since I was 13, I am avoiding frou-frou coffee drinks, and there is usually NOT ice cream in the freezer these days! I have been craving things like salmon, cabbage, tart cherries, and homemade low-sodium pickles. Weird, and no, I am not pregnant. 😦
Some of the other changes I have made are slowly incorporating a regular amount of movement into my days. I now know that I feel worse, not better, if I sit around all day long. Even if I’m not up to working out or exercising, I have to keep moving throughout the day to avoid making my symptoms even worse. When I am up to it, I split my work out time into two or three 10-15 minute sessions of stretching, very gentle yoga, and super light arm and ankle weights. I focus more on my breathing than anything, and at least six times a day, no matter how awful I feel, take a few moments to regulate my body by breathing deep and slowly into my lungs, focusing on my belly rising and falling instead of my chest. It helps with pain to breathe like that, but it also helps long-term too, by forcing more oxygen into my tissues, which is a major problem for people with fibro.
My morning coffee drink is no longer overrun with fake, bad-for-me ingredients and now I add organic milk and coconut sugar (try it!!! it is the only low-glycemic sugar that I have actually enjoyed more than raw can sugar because it isn’t quite as sweet but is full of flavor and essential nutrients like zinc, potassium and magnesium!). I do not bake as often which cuts out most of our sweets around the house, and I try to buy only whole foods. Recently I have begun to include a 100% fruit smoothie in my day as often as possible, instead of the dairy based smoothies I used to make. I take probiotics every night with dinner, and I will never stop taking them.
Most exciting of all, I have begun to get off of Lyrica. This means so much to me, I can’t even put it in words. I wish someone had warned me that women of a child-bearing age have no business being on Lyrica if they actually do want children. Which I do, and have for quite some time, and would have caused me to find something different to take instead of the Lyrica, had I been warned. Lyrica causes some severe neural tube defects, often leading to miscarriage or at the very least developmental delays. I am not dooming my future child because of my inability to deal with the severe pain I am in, it just is not how this is gonna go. So starting December 26th, I have gone from taking 3-4 of the 150 mg pills every day to only taking 3 of the 75mg! Down more than half from my old dosage, and ready to start taking just 75mg every twelve hours and seeing how that goes! I kept a diary for the first week as I started to get off of it and then trashed it because every day sucked, for the first two weeks. I allowed myself to level out to a place where I wasn’t throwing up every day again and didn’t have the pounding, blinding migraines and gnarly headaches, skin crawling and lots of increase in my neuropathy and radiating nerve pain from pinched and torn discs in my spine, but I’m gonna see this through this year. I do not want to live with the loss of short term memory and feeling of complete apathy that washed over me while I was on Lyrica. And yes, that means those things, my emotions and feelings and everything I had been shoving down successfully have bubbled to the surface, and I have been forced to actually deal with my emotions instead of pretending they don’t exist. This is all good, I believe, but it hurts, and it’s been rocky for both me and my partner. Poor guy has seen me go through every shade of depressed, hopeless, negative, manic, hyperactive, over-sharing, impulsive, and mostly whiny that I am capable of. He loves me still, so I think he’s a keeper! 🙂
Other weapons in my arsenal right now include affirmations, journaling with an actual pen and paper, being honest with myself and the people around me about what I’m going through and what helps vs hurts, and remembering that the way I feel detoxing is not the way I will feel forever. I just have to keep looking forward, and keep making these plans and dreaming again for the first time in ages.
The longer I have this much pain and sickness every day of my life, the better I learn to work around it and deal with it naturally or at least work with my body instead of just suppressing its natural instincts. I have realized that big pharma has only so much to offer me, and in many cases it isn’t worth the cost, both literally and figuratively, of taking a drug that only masks symptoms instead of treating the root cause. I know I’m not the only one who has really struggled going full circle from all-natural, all-homeopathic remedies as a young adult, to taking handfuls of pills every day a few years later, and back again to attempting to distance myself from harsh medications with a meditating, herbal-remedy-taking, eating-right-and-exercising lifestyle. Not that my doctors ever told me not to eat healthy or not to exercise, I’m just saying that offering a pill was usually their first line of defense. Then, when that didn’t work they would tell me to walk it off or to learn “self care” which I did not even understand a little bit at the time. It made me angry (to put it mildly) for over a year. Now I just gotta laugh, because I literally say to my friends and my boyfriend at least once a day “oops, I’ve been sitting for too long, I have to go walk around the yard or stretch now so I don’t get worse,” and I have noticed so many good changes in both my mood and my body as a result. Not that my symptoms are diminishing noticeably or that I believe I can be “cured” by my renewed interest in healthy living, but it is honestly the best and most hopeful treatment I have tried since receiving my first diagnosis over a year ago. Hope is everything when living in such overwhelming pain and with so many other debilitating symptoms running the show most days.
Tags: #smallvictories, ADHD, Big Pharma, Chronic Fatigue Syndrome, chronic illness win, chronic pain, detox, eating right, healthy living, homeopathic treatments, hope, lifestyle changes, Lyrica, movement and chronic pain, self-care, small changes add up, trying to be healthier when you are chronically ill
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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