Why Chronic Pain Matters

I hope you all had the Christmas that you were hoping for, and even if you did not, I hope you found something in these holidays to be grateful for no matter what else is going on. My Christmas was full of many things, one of which was love, the other main component of which was pain.

Keep Holding On No Matter What

I tried to write this post before I took some real painkillers, and whoa, I am not proud of the original version, but it does convey accurately what living in non-stop pain is like, so it may yet be posted, despite my embarrassment.

Right now, instead of salvaging/editing that previous documentation of hopeless levels of pain, I am going to talk about why it matters that we keep track and research, why it matters that we keep searching for hope in any form, and why it matters that we are able to openly discuss pain with people who are educated about it. Not very long ago, less than two hours, I was sobbing uncontrollably every ten or twenty minutes, unable to walk, unable to shift to a position in bed that would alleviate it, unable to sit at my desk or concentrate enough to talk to my boyfriend at all. So I am grateful, very grateful for painkillers, painkillers which I have kept in a dark place hidden away from everyone since around last time this year when I knew I was not going to be seeing the same doctor any more and that meant I would probably lose access to much-needed medicine that helped me to function just a little bit. And I was right, the next guy was a complete asshole, and he basically destroyed my life in ten minutes because he was afraid to treat pain correctly. Thank you, fucked up system, thank you dick-hole doctor, thank you crippling grief for my boyfriend’s father and severe anxiety at the time that kept me from fighting back.

Even these secreted away painkillers are leaving me close to tears right now, precariously perched between a 7 on the pain scale, which is barely manageable, and an 8, which is less manageable. Earlier I was at an extreme 9, but refusing to give in. Getting just a slight reduction is everything in this game; I must remind myself constantly at the moment to accept that 10%-20% relief is still better than the pain just growing, spreading and getting brighter and sharper and more intense to the point that even my breathing was rationed out because it hurt my spine too much to flex with each inhale and exhale.

Nerd moment: I can accurately say that the pain pills decimated my pain, because the word actually means a reduction of 10% (deci-) or more, traditionally it referenced killing one person in every ten as a punishment for the group, usually in the case of soldiers on the losing side.

For me personally, 10% is not enough for me to even consider something on sale in a clothing store, and it honestly wouldn’t mean anything to me if I didn’t know from experience that a tenth less is good news here. Very good news. It means the world to be allowed out from under the crushing burden of severe pain just for a little while. This is what a 10% reduction in pain means for me:

scratch-made sweet dinner rolls

With that 10% reduction in pain, I have been able to make my own cup of coffee, walk up and down a half flight of stairs with a five minute break that I passed off as just a friendly chat with my downstairs roommates, and I popped some rolls in the oven that I made from scratch for Christmas and kept dormant in the fridge until this morning. Not much, not much at all really, but compared to having difficulty breathing due to pain, plus pain-puking which hurts even worse, it’s like magic. Doctors need to understand that non-stop chronic pain can kill, no matter what mood elevators I am on or regular dose of anti-anxiety medication, I am always shocked when the breakthrough pain and flare ups strike, often to the point of feeling helpless and hopeless against the severity of it. Sometimes depression is unavoidable at that point, at least for me.

Even if it only lasts for a few hours, the kind of depression that hits when I simply cannot cope with the level of pain that I am in, and when I know it will keep happening even if it stops for a little while, and nothing I try works even a little bit; at that point it is actually equal parts depression and desperation, and that is dangerous. It can be hard to keep a clear head when desperation enters the picture. With chronic pain, an episode of desperation and depression (both things most of us work very hard to keep at bay on a daily basis) can quickly turn into wondering why I am even here, wanting to escape my body by any means necessary, considering self-injury, wishing I could disappear, and a few times actively wishing to die without any set plans. I know many others spiral deeper than that through no fault of their own, and often because of misdiagnosis and mistreatment of their pain. Throw a little sleep deprivation/ painsomnia into the mix and a lack of understanding external support networks and all of a sudden you have a recipe for disaster. The data from a poll earlier this year, done by OHSU’s Dr’ Bennett, who is famous worldwide for his chronic pain research, found that a staggering 39% of Fibromyalgia patients have considered suicide. This is heartbreaking, terrifying data. More people with a disease that is supposedly not progressive or “dangerous” have considered suicide than those with Multiple Sclerosis or Lupus, which are traditionally considered much “worse” conditions to have. How awful.

Something needs to be done to provide these millions of people whose treatments are obviously failing them completely with a means of pain control that can allow them to see beyond this painful second into something a little better. I am so glad that I wisely hid away a few backup painkillers for breakthrough pain. Pain that my doctors keep insisting does not happen. I wish they could try living in my body for a week and then tell me how they feel about prescribing painkillers to chronic pain patients. We just need a break. I need a break in order to get to live my life a little tiny bit and most of all in order to get my shit together. When help is visible to me but I am not allowed to take it or ask for what I know will help me, it just feels like they’re being unreasonable and cruel. It’s terrifying to have your life in the hands of someone who does not know even a fraction of what you do about your body. It’s even more terrifying when the people who hold your life in their hands can be so openly hostile towards us when we need help the most.

We deserve so much better than the way that we are treated when we need help. I deserve better and more compassionate treatment than I am receiving and than I have received in the past. I certainly never want another pain patient to have to deal with the bully doctors I have been stuck with. I’m so tired of MD’s throwing their hands up in the air and saying they can’t help me when the answers are right there in front of them, and they’re afraid to prescribe it out of ignorance and pain-shaming. Whatever I was taking when I was still able to work part time in mid-2013, I need that all back in order to function and focus just barely enough to get to a point where my disability process is underway, my partner understands me and what’s going on with my body better, and all our paperwork is finally filed for all assistance agencies. Since 10% relief is a minor miracle during a flare up, I am no longer feeling desperation clawing at my neck, trying to burst out of my skin. But I know it’s lurking inside of me, waiting to strike in my next moment of pain and weakness. I know I can hold out time and time again, because I always have, but a part of me is scared of how bad I want out when it gets bad enough to make me vomit and sometimes go into shock.

I will do whatever it takes to keep holding on. This is just a bad day, it doesn’t mean I have a bad life.

Right now, I am looking to the humor and irony that coexist in how I have never been so uncomfortable in such soft, loose, comfortable clothing. At least there’s that! Amen for fleece. I never thought I would say that, but here we are, and I am wearing a fleece lined hoodie and fleece pants and it is pretty awesome.

🙂

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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 “Why Chronic Pain Matters”

  1. Moongazer says :

    (((((hugs)))))

    Like

  2. escharae says :

    I don’t suffer from chronic pain but I can really relate to this post. I unfortunately understand too well the connection between chronic illness and depression. Me, as an MS patient, I suffer with chronic fatigue that at times doesn’t let me get out of bed and most of the time doesn’t let me be the person I wanted to be. I was on meds for depression, but now I’m going to start on meds for fatigue, although they’re not guaranteed to work. I also understand what it’s like to not have the right treatment from doctors and generally the health system. Sometimes they dismiss your symptoms, sometimes they don’t give you the right treatment. I’ve been waiting four months to change my MS medication. It makes me feel helpless, furious, and it adds to the anxiety. This, in turn, makes me even more tired. It’s so important that we write and tell the world how we feel and what’s going on. I hope your pain levels improve.

    Like

  3. abodyofhope says :

    Firstly, thank you for saying that chronic pain can kill and purely acknowledging the fact that suicide is not giving up. That was really brave and something so simply stated, but unfortunately we don’t hear “depression kills” or chronic pain kills” enough when statistically, we know both do. So, thank you for making a choice to use those strong words.

    Your picture of baked buns took my breath away and swelled my eyes with tears. We say things like, “the meds barely touch my pain.” But you’re so right, just a small reduction allow us to do more LIFE. And you being able to illustrate that here was huge to me. Wonderful.

    Thank you for writing about pain medication and giving your voice to it in a time when everyone else seems to have a strong opinion on the matter except for those who are prescribing it and taking legally and regularly like chronic pain and terminal illness patients. I’m so sorry you are young, beautiful, and in pain… Finally a Dr saw through your exterior and is treating you properly like he would anyone with your disorder- any age.
    Wonderful post! Comfy fleece is so the bomb 😉 As are you ❤

    Liked by 1 person

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