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.

Stock-Image-Separator-GraphicsFairy11

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:

grape seed oil love

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.

#spooniestrong

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About Jessi Finds Out Fibro

Hi, 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.

3 responses to “Things Have Been Moving Really Fast Around Me”

  1. Moongazer says :

    Hiya! I’ve been wondering how you are. Now, first of all, stop getting all down on yourself for not keeping a post upbeat. You can only be upbeat when you are feeling upbeat, and you have so many things to cope with, and you’re tired from your busy week.
    I’ve gone into ‘mum mode’ a bit here LOL, so bear with me, but whilst reading your post a few things occured to me. first off (((((hugs))))) for the tooth problems. I am suffering right now with one that needs to be removed. I have only to wait until wednesday now, but I spent most of today with my head on my heat mat trying to ease the pain. Tooth problems are pants!! But if you are not eating properly, you could well be missing nutrients. I am pretty sure that a sore tongue is an indication of vit B shortage. But could you also be rubbing your tongue over the tooth and making it sore that way?
    But also – from my own tooth problems, my glands are up, and my throat is sore – because of the tooth, not because of allergies.
    I am wanting to feed you here – things like home made mashed potatoes and chicken soup.
    Try and make sure you take a high strength vitamin and mineral supplement. You need it anyway with FM, but especially if you aren’t eating properly. But make that tooth a priority because I bet the other probs are at least in part due to it.

    Liked by 1 person

  2. abodyofhope says :

    Hey girl. I’m so happy you were able to get through your mom’s wedding reception. I can only imagine how stressed you were leading up to that event. I’m sure it took a lot out of you, but I hope it leaves you with memories that last you a very long time. I know she appreciates that you were there.

    I’m sorry about your teeth and mouth issues. That is really frustrating! I’ve got some teeth stuff going on, and like you, I always had perfect teeth before so I understand how worrisome it is to think about the money and the thought of finding someone who is knowledgeable in dealing with the nerve issues and kind of complex disorders we face. It feels impossible to go to the dentist, but also impossible to let dental issues go. Uggh!

    The facial products you are making sound awesome! It’s fun to hear about the natural products you have been cooking up.

    I hope you are able to get some food down soon so you don’t get even more weak. I hate force eating, too.

    It’s good to hear what you’ve been up to and how much you’ve been working on. Sending you lots of love and big hugs xxo

    Like

    • Jessi Finds Out Fibro says :

      I had to totally abandon the small business idea when my business partner decided she really didn’t want to work with me after all. That’s fine, I just wasted a lot of spoons and time and money that I shouldn’t have wasted (although that last person I expect to understand is her because she’s of the “if you want to get better you get better” school. The school I want to punch in the throat. And then she followed up dumping me with a bunch of insulting “pep talk” type shit, like “now it’s time for you to see what you’re made of” and “I can’t believe you’re taking more medications and pitying yourself so much” etc. Wow. Yeah, That’s when I started on this whole ableism sucks thing.
      I found out about five days before my mom showed up. Now I’m recovering from the ten days she was here, but it’s like looking down the long barrel of a rifle pointed at my face. I can tell I took a major setback, and then relationship stuff has been a factor too. literally 72 hours after she left I became sick with several infections (ear, lung, sinus and skin) and a cold virus that I’m fighting off still. 72 hours is generally when everything catches up to my super delayed-reaction-prone body and all the pain and fatigue peak, so this has just been extra fun! The facial pain is just getting more consuming and violent and wide-spread. The accompanying headaches have been ramping up in severity too, but that is nothing compared to IH, and I know I’m lucky that I can still tolerate small movement despite them (not too much or vomiting is starting to be a regular problem with the pain that comes from motion, especially bending forward or standing up) but the worse my head is tortured and the more I must limit and be deliberate in my movements on a whole new level from before, the more I think of you, the more all of your words surround me in comfort, and find me at a time when I need them. I know what I’m experiencing is likely not permanent and even if it is, I would rather not know just yet, and keeping that mantra helps, but I also understand we don’t have control. We can do everything right and awful things still happen to the best of people. That’s not very hopeful sounding, I know, but what I get out of it is that the lack of control means I also don’t need to harbor so much guilt for living with illness. I’m a survivor, and you are too, and this thing, whatever is really at the bottom of everything, it has me in its grasp but I won’t let it win. Not that it won’t force my body to submit, because that is not a choice that I get to make. It is not a choice that you were given either. Instead, not letting it win means something totally different, thanks to your wisdom and how much you’ve taught me about resiliency and what comes after fighting with all your might. I will keep calling this physical weakness, pain flare, and the cognitive struggles a small setback that I can and will recover from, but I am leaving the definition of setback and recovery pretty loose now in case things change again, as they have a habit of doing.
      One thing that has come to my attention is that I am the worst at being an adult, at prioritizing and organizing my life, and at responding to crisis. I would like to blame things that are wrong with me for that, but unfortunately I’m gonna have to figure things out pretty soon here or face a whole new set of problems that are too scary to even talk about. Taking responsibility for myself. I don’t even know what it means now in the context of my new normal, but I know that I’m hardcore failing at it. I feel so trapped by money and my body and brain and energy limitations, and expectations on me because I still look so different from how I feel.
      I did put my foot down, finally after two years of “discussing it” casually, about needing a cane and it not being something that can just keep being ignored and that it will give me back some freedom and help me conserve energy and i know he heard me, but I doubt he’s okay with it. Even though he keeps telling me to not care what he thinks, he doesn’t think very highly of my mental illnesses and my coping techniques and how I spend my time while I’m awake just trying to get through days that seem unbearable. I tried to explain that I thought I knew what pain was before I got sick, but I didn’t. I can’t compare what I’m experiencing now to anything I experienced when I was younger because pain never came bundled with so much other horrible stuff. I hope there will be a way to get a cane, but it probably won’t happen for a long time. I am just glad I was outright about it because it’s no longer up for debate.
      Unfortunately, it’s recovery time whether the people around me understand or not, and even though they want me to do more right now, I have to disappoint them until my body (not to mention my brain….) will let me do all these things I’ve got to do to change my situation. hopefully taht will be soon so i don’t keep pissing everyone off and feeling like such a selfish asshole who just makes everyone’s lives difficult and ruins dreams and has no work ethic and is apparently supposed to be cheerful no matter what hell is going on and never need reassurance. ugh. ugly ranting, I will stop now. this brain fog is so dense, I doubt any of that makes any sense and I’m hitting post right now anyway.

      Like

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