Things Have Been Moving Really Fast Around Me
But I have (mostly) managed to keep up, which is no small thing to me at all! With all the pushing myself I’ve been doing, I’m ready for the much needed rest I will be taking starting today.
This week has been action-packed for me, although for a healthy person it certainly doesn’t sound like much. I got to spend a whole day out of the house at my mom’s wedding reception, and then made it all the way to the teaching hospital and back two days later with her help, and then on a very short grocery shopping trip later that night with my boyfriend (where I was so out of it that I bought pretty much only chocolate, hahahaha). Two days later we made smoked pulled pork, homemade macaroni salad, and dinner rolls from scratch (all incredibly cheap but incredibly perfect for sharing with a crowd, which we have gotten smarter about now that we are super broke!). We took the food all the way from our house to the part of Oregon I grew up in, which is about an hour drive, and I did not collapse or fall asleep somewhere during that trip last night, but I had to sit out the games because of how unstable my joints are and how bad my head and neck are already hurting. I have been using the preemptive rest method to gain some strength ahead of events I know are going to sap me of energy or take a great deal of time and probably a bout of extra pain to recover from. It’s difficult to recover from that much activity while I am still steadily decreasing my dosage of Lyrica (down to 1x 75mg pill per 36 hours!!!), but I will recover. It will take a while, but I had fun this week and saw my mom and even my extended family, so it’s worth it!
Resting consciously, including not overdoing it mentally and avoiding sensory overload, has really helped me this month, but it has meant that I cannot do nearly as many things as I would usually force my body to do, especially when it comes to gardening and housework.
The next step which I will start along with the rest is adding more stretching and walking for five to ten minutes at a time back into my schedule, but seriously every part of my legs hurt right now, my feet feel bruised from standing yesterday, and my knees are throbbing, none of my joints want to stay in their sockets and none of my muscles want to help them out.
I had a pretty extreme limb tremor last night in my right leg that lasted for almost twenty minutes, and that twenty minutes of having a rapidly spasming/twitching/bouncing leg has left even my fingers exhausted and all my joints stiff from trying to force my muscles to relax and stop freaking out, which ironically made me tighten up even more throughout my entire body. The tremors aren’t really painful or a problem in and of themselves, they are just not my favorite to deal with in public, and it does make my leg prone to giving out on me if I have to walk while it’s happening.
My real problem is my mouth, I have severely swollen gums and an impacted molar on my right side as well. I have an unusually small mouth and have no idea how I never needed braces growing up, but my teeth have always been very straight with no gaps and only some flouride damage to deal with. In the last several years, things are different, and the overcrowding is causing problems left and right, and could even be contributing to my TMJ disorder, migraines, and neck pain. I don’t even have enough room for all my normal molars to come in, so I have been dealing with the pain of teething for as long as I can remember. I not only need my wisdom teeth removed (holy hell, I need them gone so badly), but I also need some of my molars to be taken too, especially this very swollen and impacted one that has finally poked most of the way through my gum but is now pushing the molars in front of it sideways. Getting all those teeth out may even help with the severity of my jaw clenching issues, which when tested at PT have ranged between 7x and 30x more tense than an average person’s jaw, and that was while using every last relaxation technique and cognitive behavioral therapy.
The challenge will be finding someone who is skilled at dealing with patients with severe TMJ, and then I magically have to be able to afford it. The jaw pain has been getting worse and worse, and to have an impacted or worse molar is excruciating, especially that close to all those sensitive nerves in the back of my jaw. I’m used to my face hurting pretty awfully because of Trigeminal Neuralgia, so I am able to tough it out most of the time but sometimes I just want to rip my teeth out myself they hurt so badly. Now is one of those times. It’s even affecting my ear on that side.
To make my time eating even more fun, because TMJ disorder and dislocations and messed up teeth weren’t enough, in the last month or so I have developed some awful and nearly constant food allergy reactions. I have sores on my tongue and a sore throat that never fully goes away, and my lymph nodes are angry at me after every meal. I only eat once a day, and I have cut out a bunch of foods including all acidic fruits (goodbye homemade marinara sauce, goodbye morning smoothie, you were nice while you lasted) and anything with vinegar (goodbye kombucha and all my favorite homemade salad dressings), beer/cider, yogurt and sour cream; seriously so many things are gone from my diet, that’s not even close to the list!!! And even cutting all this stuff out, I’m still having issues every day with these horrible sores on my tongue and throat. I obviously need an allergist as well as a dentist at this point, but I can’t afford it with my insurance deductible not being met yet.
Basically my mouth is full of fire and I have no appetite and I am having trouble eating even when I want to, so maybe I will finally be losing some weight until I can see a few doctors? That’s the most optimistic thing I can think of right now, because seriously, this sucks. I need medical help. I have needed it several times in the last month and not been able to go because I simply owe too much money to everyone after three years of not being able to pay my bills. There is no hope for money coming in, and I am just in too much pain to brainstorm ideas or set up a kickstarter or re-apply for disability again. Blegh, so instead of thinking about any of it, I’m gonna go back to resting and reading. I am way too overwhelmed, and I know part of that is just sheer exhaustion and needing to recover from the constant setbacks of over-activity every few days for the last week and a half. I will regroup and hopefully have a plan of attack… although right now I’m very much stumped.
Days have been slipping past at alarming speed, and I’m constantly confused about what day/time it is and even where I am, but I’m learning to let go, or at least I’m trying to learn. Right now all my body needs is for me to respect it, listen to it, and try to figure out what the hell I’m allergic to on my own. Worrying about my memory is just going to stress me out even more.
On a lighter note, my psychiatrist says I am making progress lately, and that fills me with hope and even a little pride and self-love. She also complimented me on my skin and hair, which I really have been taking much better care of now that I’m using a homemade grape seed oil, baking soda, dead sea salt and epsom salt scrub with calendula petals from my garden. Grape seed oil is the queen of all lightweight skin moisturizers for sensitive and/or oily skin, and no weird reaction after I put it on like when I use any store bought lotion, no matter how “organic” or skin-friendly. I get a 16 oz bottle for $7 using the Amazon subscribe and save program, I really like this one from NOW Foods:
For my hair I made up a dry shampoo in about 30 seconds from equal parts bentonite green clay, indian red clay, and arrowroot powder, and it helps keep my ridiculously long locks from tangling, or looking limp and lifeless between showers. My scalp seems to really appreciate it, too. I love having both recipes on hand, but it would still be nice if I could shower more than once every three or four days. Working on that, though. I think if I just get a big fluffy bathrobe and put it on as soon as I get out of the tub and go lie down for fifteen minutes, I would probably be dry by then, and maybe saving the energy on drying off would allow me to get clean more often. Oh, spoonie problems. I’m past the point of pretending now. I’ve realized it’s entirely necessary that I make some changes to my lifestyle in order to retain what independance I have. Ignoring things that would make my life easier is no longer an option. Now it’s just a matter of finding enough money to make the modifications I need, and figuring out what actually helps me live a better life.
All I have kept down today is coffee, water, and crystallized ginger, and barely on all three. Even the ginger can’t save me from this nausea, pain, and extreme fatigue, coupled with dizziness and eye issues. See, I tried to be positive and distract myself from the reality of chronic illness, but then I took it right back to how bad I feel because it’s literally all I can focus on right now. I’m just getting through one hour at a time right now until my body catches up. I know others can sympathize with that sentiment, but I would never wish it on anyone. Nobody should have to understand, because no one should have to deal with this all the time.
Tags: #ButYouDontLookSick, #fibromyalgia #chronicfatigue #chronicpain #chronicillness, #PainWarriors, #practicingpositivity, #smallvictories, adjusting to life with illness, avoiding cfs/me crashes, being grateful, being kind to myself for a while after this, but you don't look sick, CFS/ME, chemical sensitivities and chronic illness, chronic badass, chronic fatigue, Chronic Fatigue Syndrome, chronic illness, chronic illness win, chronic invisible illness, chronic pain, Chronic Pain Awareness, diy hair care and beauty, family, Fibromyalgia, findingoutfibro, flare up, making progress, pain warrior, preemptive rest for chronic fatigue syndrome, recipes for diy dry shampoo, recipes for diy salt scrub, recovery from overexertion can take a while, relationships, self-care, sensitive skin, spoonie, staying strong, support network
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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