In Full Flare

Currently I am working on not thinking things like “I want to disappear” “It would have been better if I had never existed” and several others super-negative self-reflections. I had stopped doing this, years ago, and thought these passive suicidal thoughts would not follow me into adulthood, but that wasn’t supposed to be my story, I guess.

When I am this miserable and at a peak flare up, and have dealt with weeks of unbearable pain already, it makes it so that it takes hours just to write one tiny post, my eyes at tiny slits, neck stuck in an odd position, lights and sound being overstimulating and making me feel like ants are crawling all over me and I’m going to have to get up and run out of the house naked if it doesn’t STOP.

And then, joy of joys, this new and beautiful cluster or occipital headache that will not quit. All I can say is, they aren’t commonly referred to as the suicide headaches without good reason.

I am surrounded by things I use to ward off pain, from rubs and tinctures and vitamins and supplements to prescriptions, massage neck rest, crystal piezo pen, DaVinci tool, back buddy, steaming mug of chai replacing my usual coffee, extra ginger and cinnamon, please. There is a bag of tart cherries next to me, a electronic devices all in one place, my contoured foam pillow, heating pads (yes, TWO), and a blanket all within easy reach too. Even some water and a raw food bar just in case I feel a sudden ability or need to put food into my body.

One whole side of my face throbs and twitches with this headache, it feels like snakes writhing around under my skin, biting and pulling apart my muscles and ligaments in my neck and the base of my skull, one snake curled around my eye, with his teeth sunk into my temple. Sometimes they migrate, to the strangest places in my body, if I move the wrong way or don’t rest often enough. The worst pain is a high spot on the back of my head on the right side that sends pain down my arm, into my face, up my skull, around and in my ear, teeth, and jaw, and straight down my neck and shoulder into my low back, causing my legs to just give out from underneath me with the aggressiveness of the pain. So I just keep repeating that i want to disappear, knowing I shouldn’t talk like that to myself and doing it all the same because it’s true. There is no happy thought for this kind of pain. I thought the broken rib feeling I have been dealing with for two weeks was bad, and that is not gone at all, but this is so, so, so much worse. It makes me want to rip my face off.

Here’s a pretty good illustration of that, and I wish I knew the artist:

Occipital and Trigeminal Neuralgia

I wish I could just take it off.

What do you guys do when you find yourself talking negatively to yourself or being unhealthy even though you know better? I try not to feel even more guilt about it, because I’m not gonna be perfect at managing this, ever. It’s not that kind of pain, it does not want to be “managed”. All I can do is hold on through the worst storms, and keep aiming for a month that is better than last month and the month before that, and hopefully when I look back, each year will be better. But right now, there is nothing better about this. There is only beautiful, high walled, fiery, unmoveable, vast oceans of pain. And I am out there, drifting in it. Just pain. It hit so suddenly, I didn’t have time to meditate, visualize, stretch, or treat it. What do you do when your doctor won’t treat your breakthrough pain or flare ups or even regular pain, you really don’t want to kill yourself, but you find yourself thinking about it because it would be nice to get away from the pain? I’m not this upset unless I’m in this much physical pain, I wish my doctors could see that first comes the pain, then comes the much more severe than usual desperation, anxiety, depression. It would be nice to think positively right now, but I’m not sure where it would get me, you know? Nice thoughts don’t make the pain better and I already took care of myself to the best of my physical abilities and it’s not enough. Berating myself for not thinking positively definitely doesn’t help. I just hold on, I guess, and try to not worry too much about the dark places my mind is going, knowing full well I don’t have the ability to act on those thoughts. This is just not… healthy. Not ideal. Not okay. I wish I could get the treatment I need.

What do you do when your pain makes you feel like you’re losing it? I am out of ideas, and have so little energy to try anything new that I almost feel stupid asking. Somehow I gotta get through this one, though, and I don’t know how.

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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.

12 responses to “In Full Flare”

  1. lifeinslowmotion says :

    I wish I knew the right thing to say. Reading your post, I am just sad and hurting for you. Mourning with you in all of your pain. When the worst of flares come, it feels like it will literally never end. That is the greatest fear – maybe this time it won’t end.

    And I have to agree that being positive isn’t the answer and just doesn’t fix things. I find positivity helpful when the pain dies down – it helps me focus on the good in the midst of the bad. But when the pain is at its worst, positive thinking does nothing for me. When I feel like I am loosing it, the only thing that gives me hope is to delve deep into my faith. I am not saying that to press my own beliefs onto you, but only because that is where my thought process goes and because it is the honest answer, for me, to your last question.

    Thinking of you in your pain. We both know there are no easy answers to pain at its worst, so I am just sitting here thinking of you, hoping you can feel a little less alone.

    Liked by 3 people

  2. Moongazer says :

    Oh Gods, sweetheart (((((hugs)))))
    You know I understand this one. You were there for me the other night xx
    Do you not have any form of pain relief at all? This is where we are lucky to have the nhs in the uk, I guess because we can go to A&E for help at times like you are describing and it’s free. They would only give morphine mind you, but at least that allows you to sleep through the worst of it. Is A&E not an option for you at all?
    You need a few nights of good sleep, dont you, to escape the pain and allow your body to heal a bit. Ambien?
    But to hell with positive self-talk. I defy anyone to be actively positive under such an assault. Its ok to cry.
    But try to tell yourself “this will pass”. The peaks of the flares always do. They pass.
    I wish I could be more use 😦 I wish I had more suggestions.
    But I can send lots of ((((hugs)))) and encouragement to help you until this passes.

    Liked by 2 people

  3. escharae says :

    I don’t have tips for you, but I certainly know where you are right now. Usually when depressive thoughts arise trying to fight them right in the moment doesn’t work for me. It takes a little distance to see all the things I’d miss if I just gave in to illness. I really wish there was something I could do to make you feel better. I’m sending you healing virtual hugs.

    Liked by 2 people

  4. merbear74 says :

    I cry. And take it a second at a time. Then I cry some more. I’m so sorry you are suffering. *hugs*

    Liked by 2 people

  5. abodyofhope says :

    Jess, I’m so sorry you are in this nightmare of pain. This is a monster I know and despise. This is the worst pain monster in the universe and my heart goes out to you for having to fight this beast.
    I’ve never been able to describe my nonstop stroke-like migraine, daily clusters and Trigeminal Neuraligia caused by build up of fluid pressure around my brain (IH). I can explain all of my other pain but not this pain- for the reasons you spoke of today. Yes, to remove it would be a dream. But unlike my leg or arm, I can’t even daydream to remove my brain. That is a perfect image you chose.
    I’m so so sorry you are in a flare and feel so much pain in your head. I wish this kind of pain on no one. It destroys the mind and eats away at the will. I know you want to live your life and push through this!! But I do understand, every day I understand Jess. We want to end the pain so deeply, not to end ourselves.

    I’m so thankful that you wrote this as I have felt so silenced by this pain and chronic illness, IH.
    It takes away so much to just literally survive it every moment, that to then give it a voice instead of distract away from it- is unbearable. Feeling that you understand not only the pain but the deepest lows is something I thank you for, but also my heart breaks for you all at once.

    After my head has been like this every day for three & 1/2 years, I find going into a trance, visualizing I am somewhere else helps take me away for short periods. For the emotional part, I pray. It helps me feel I’m not alone in the darkness.

    This must have been very difficult to write, not only emotionally, but through your pain.
    Thinking of you and sending strength to endure ❤

    Liked by 1 person

    • Karen says :

      So much empathy! I also manage this pain! It’s a real nightmare! I also pray and listen to Christian songs on low volume, stay in the quietest place possible! Starting to bible journal also. Sometimes heat, sometimes ice. Nerve blocks, essential oils, chiropractor,and worst of all flat on my back! I’m tired!! Wish I could find a cure! I feel like a burden to everyone! I like to be with God and myself at this time, it’s all I can tolerate!! I’ve decided to use humor as a coping skill! This helps me a lot! Check out my Pinterest at knbaker25. Pin all you want! Keep prayer and laughter and remember you’re not alone!😍. Karen

      Liked by 1 person

  6. painkills2 says :

    Jessi, I can’t tell you how many times I’ve wished I could cut off my head. They say the average head weighs about 10 pounds, but I think mine weighs about 50.

    I also think that TMJ and TN are very similar, involving the same nerves, especially the facial, jaw, tooth, and ear pain. Seriously, I had a hard time reading your post — your description of the pain is so raw (and similar to mine).

    I just find it so frustrating that any pressure on my head, even on my pillow, is uncomfortable. And oh my god, during a pain storm, parts of my face swell, the throbbing is so bad… those are the times that I’m glad I hate guns.

    And yeah, crying is great, except for people with facial pain. And it doesn’t matter how hard I try to stay in a good mood, to distract myself from the pain, I usually cry at least once a day. Like Holly Hunter in Broadcast News, I let myself have that cry once each day, and the rest of the time, I try very hard not to. (I’m not always successful, but it’s a goal, nonetheless.)

    As for the suicidal thoughts… They used to scare me, but I’m used to them by now. I’m not crazy — I’m in pain. In my mind, it’s only rational to want to end the pain, especially when you have no pain medications to manage it. Sure, life is sacred, blah, blah, blah, but no one should have to live with this kind of pain. We don’t let animals suffer like this…

    All that said, I’ve been in constant pain for almost 30 years, and it’s only since I was recently able to medicate with cannabis that I’ve found some hope. You’re so young and you have a lot to learn about managing your pain — but it’s a continual process… what works today might not work tomorrow. You’re on the right track with distraction therapies, you just need to find a lot of different kinds.

    It’s a good thing you’re smart, huh? 🙂

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      Oh my, thank you for such a sweet and thoughtful comment! I totally know what you mean about *any* pressure at all is just awful on the jaw/face/neck/skull area when it’s in flare. I feel bad that the description triggers pain responses in readers, that’s no good on my part.
      Your comment makes me giggle now that I’m slightly less pain because it’s so true, every sentence of it, but you have such a great way of presenting the negative facts in a way that is both relatable and hilarious.
      I totally understand where you’re coming from, I almost typed that line into the post; that if I were an animal, someone would have put me down by now, but I realized I was just feeling like lashing out and didn’t really mean it. It’s sadly true, but not something I should be writing down or dwelling on. I think it’s funny that you said what I was thinking and couldn’t write, though!
      The facial pain does make crying a bitch, especially with my skull/nose/eyes healing from my fall still, even blowing my nose is a painful experience for a little while longer. I can tell it is healing quickly though, score for arnica montana. I’m a big fan of cannibinoids as medicine too. I have some nifty tinctures that are literally magic for moderate-severe pain. After you hit an 8 or so, they just barely take the edge off, but still a good tool in my kit that I would never be caught without!
      I’m so glad that so many chronic pain patients are quick to defend my thought process as normal, because I really thought I was the only one, it was some personal weakness that I needed to figure out how to “fix” or recover from. Everyone who responded took that pressure off me. I can have these thoughts, I can endure them, they are normal after a certain point of pain, and I will still be here later when this passes, no need to worry too much about “getting rid” of those thoughts. Living with is fine, I can do that.
      Haha, I too set aside time to cry when things are tough, for me it’s before my boyfriend gets up in the morning (drinking coffee and crying time), and limit it to that unless I skipped it and something happens that I was therefore already too overwhelmed to deal with.

      I do need more distraction…. I try a lot harder now with it than two years ago when I was just staring off into space, every day and most nights. Now I am busy, busy, busy I feel like, even without a job or the ability to leave the house very often, almost to the point of overdoing it even, but I need to learn to be occupied while I rest proactively and let my mind rest as well. I do have a LOT to learn though, and that is encouraging for me and for others who are new to Painlandia. I learn new things every day, mostly via intelligent writers like yourself who so helpfully share news and scientific studies that keep all of us updated when we can’t pursue as much research ourselves. Thank you for that! I admire you greatly for it.
      And thank you so much for the compliment, I’m beyond flattered. I think I’m more of a smart-ass than actually smart, but that’s just me! 😀

      Liked by 1 person

      • painkills2 says :

        You’re very kind to notice my attempts at educating pain patients and their friends and families. And don’t worry about the descriptions of your pain — they are important, not only to educate others but to release the information from your brain.

        Sneezing… that’s what I hate. I hope you don’t have allergies like me, which makes the facial pain worse. But as you get older, you may develop them, so that’s something to watch out for. Not like you can do much about allergies, but treating them early is important.

        I’m so glad you’re getting benefits from cannabis — as I said, you’re smart. And you’re on the right track, Jessi, so knowing that must feel good. Seriously, it took me ages to figure out distraction therapies… it’s not something you learn from the medical industry.

        Thanks for putting your pain on public display. I know it’s not easy. And keep up the good work 🙂

        Liked by 1 person

        • Jessi Finds Out Fibro says :

          I keep thinking about this comment, about being on the right track, and I think it may be the first time someone has said that to me, or there’s the possibility that someone else has said it but I needed to hear it again, or perhaps I needed to hear it from someone as intelligent and with as much experience with chronic pain as yourself. Whatever the reason, hearing that I am on the right track, from you, is helping me every single day. I know I will learn everything I need to know from other pain patients, not from doctors, big pharma “breakthroughs”, or anyone in the medical field.
          I just wanted to let you know what kind of an impact your words have had on me, because I think it’s so easy to forget to thank someone for words later on, to claim those words as your own and run with them, but it’s important to remember where that strength came from, too, and who was actually around to lend it to you when you needed it.
          I finally sent you a reply email, I am so sorry it took so long, a dear friend since high school passed away after a year and a half long battle with stomach cancer, and it is wrecking me, missing her laughter and bright bright light.
          Thank you again for being so supportive. ❤

          Liked by 1 person

          • painkills2 says :

            Got your email, J, and will respond shortly. I’m sorry about your friend — does she live on somewhere in the cloud? I mean, did she have a blog? Did she send you funny memes that you could share?

            Wait, I think I hear something… what is that sound… I know, it’s laughter from heaven. Your friend and Robin Williams are getting along famously. 😀

            And thanks for letting me know how much my words have helped you… gives me a reason to get up in the mornin’. 🙂

            Liked by 1 person

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