Pain, pain. Go away.

I can’t believe it, I wanted quiet to soothe my pounding head and I actually got it…. for the next half an hour, my house is still and pensive, just waiting for our downstairs neighbors and their three year old and my boyfriend and his best friend to all fill the walls and ceilings with voices and laughter again.
Right now all I can think is that I need to find a way to climb out of this flare up. I am not living, stuck at a 7 on average on the pain scale for almost 10 months, a screaming 8 today, and that’s with all the medication I am allowed to take at one time and all the meditation, biofeedback, and visualization that could possibly be squeezed into my day. Doesn’t my agony warrant some kind of pain relief, or am I not deserving of that for some reason? This week has felt like I am being tortured, I cannot think to save my life. Even the weight of the hood that protects my neck from the cold wind is compressing my neck and causing fiery misery. I am mixing up words, my face is slumping on the right side, non-stop colored lights and floaters in my vision, my pain is bouncing around from minute to minute, from an 8 through a 10 and back down to a 7 again, but we will call it an 8 because I don’t like to admit it’s any worse than that. Totally random things, a thumb, then a shoulder, a kidney, then an eyebrow, a hip, an armpit, a shin, then my thigh, abdomen, toe, face, then my other shoulder. It’s just madness. The pain is making me feel crazy, like I need to rip the offending body part off of me, or like it is being ripped off. The headache is getting worse day by day, and at this point ignoring it is no longer an option. Not to mention I threw my low back out (thankfully not the most painful of all the times this has happened, but out enough that I can’t bend over and have to shuffle around with my knees pressed together). My neck/skull on the right side are in the 9-but-I’ve-learned-how-to-make-it-seem-like-an-8-because-it-never-goes-away range. It’s really that flu-like ache that is so all-encompassing, just like when a healthy person has an actual virus, that it’s impossible for me to go about a regular day no matter how willing I am to push through the pain aspect of my illness.

I want so much to be able to use my Saturdays for something fun. I feel so bad for my boyfriend who has been every bit as profoundly impacted by these conditions I am dealing with, and I feel particularly bad today that he had to run all the errands himself. I am not the same kind of girlfriend that I was to him before the car accident. Then again, I also feel bad for myself, never getting to go thrift store shopping, see my friends, take walks, practice yoga or make everything from scratch with love, and on top of that feeling like a burden. I miss being the old me. The competent, smart, working, thriving me that was stolen away when I started to get really sick and the chronic pain became constant chronic pain from which I could seemingly find no relief.
Don’t take your health for-granted. If you can walk up and down the stairs and you can do it without fear of terrible pain, you should celebrate that fact right now! If you can cook dinner or pursue your hobby or your career, hug those abilities close and thank your body for making it possible. If you work out, even once a month, and get sore afterwards, soreness is so pleasant compared to how I feel even on a really good day!!! Rejoice in feeling sore and that you can work out, because both mean that you are in much better health than I am.

Happiness is a state of being, but that doesn’t mean that having good health doesn’t help, and that it isn’t incredibly difficult (ah, but not impossible, and that’s what this blog is really about) to be happy when your body feels like it’s being tortured.  I usually try to end all my posts on a more cohesive, happier note, but sometimes that’s just not a part of today’s story. Sometimes I am angry at the pain, and sad for what is lost, and there is momentarily no solace except that this too will pass. Tomorrow is always a new, hopefully better day.

Thank you to all the sweet and lovely people who read my rants, who respond when it is hard, and who reach out when they are under a mountain of health concerns of their own. I am so very grateful to the beautiful souls who have graced my life throughout sickness and health. Again, I’m not sharing the  way my pain gets to me so that others feel sorry for me, I know my pain is not as bad as it could be and I know I don’t manage it perfectly by any means. I am sharing this because maybe someone whose sister, husband, daughter, wife, mother, uncle, etc has told them they are ill or in constant pain, and who nodded but had no idea what that meant, maybe they will read what it is like to be traveling in the land of chronic illness. Maybe this information can be used for education, to bridge the gap between the land of the healthy and the land of the sick so we don’t have to travel alone so often.

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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.

9 responses to “Pain, pain. Go away.”

  1. lisasretro says :

    10 months at 7, sounds like you need different meds.

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      Wow, yeah, now that you put it like that, I really do. I just can’t get anyone else to agree.
      I need to keep fighting. Who knows for how long, but being housebound every day and unable to drive or see friends or exercise is not the future I want to resign myself to, when there are things that can give me a semblance of a life back.

      Liked by 1 person

      • lisasretro says :

        What does your Dr think? It took me ages to find a Dr who listened properly and thought about my symptoms beyond the surface. He then sent me to a new rheumatologist who is also a thinker. After 4 years of seeing other Drs and a different rheumatologist I found the right ones for me and got the right diagnoses. Now I’m trying new medication and have a better outlook. You are right, keep fighting, keep searching for what works for you.

        Like

        • Jessi Finds Out Fibro says :

          I have a great primary who is a thinker, but she has run every test she can think of and can only come up with guesses still as to what is going on, she is also my specialist in the rheumatology department at the teaching hospital here in Portland, but she is a nurse practitioner and her other clinic where I see her as a primary care made her sign a contract that states that she will not prescribe benzodiazapenes (I need them, she agrees, my psychiatrist agrees, all doctors I have ever seen agree that clonazepam is the only medication that works for me, I have tried more than twenty others, but they have all made me worse) or narcotics of any kind except for tramadol. So I’m stuck with Lyrica, tramadol, and a muscle relaxer. Before I was on Ritalin, Oxycodone, Morphine, Neurontin, Cymbalta, Skelaxin, Clonazepam, Hydroxyzine, and Diclofenac and I could almost, almost function. I could do the laundry, I could drive, I could walk around the block and work four hour shifts three times a week. I even went camping twice during that period!!! I still was constantly in a flare up from pushing myself so hard, but I was living!!! I miss it so much! I want to live, not survive! But in the mean time, survival is what I’m doing, and fighting, yes, always, for what I need to keep surviving and functioning at the very low level I have been able to maintain right now through sheer willpower. I no longer have the doctors who took care of my pain, one has moved across country and the other got worried about regulations and told me that she thought it was all in my head and she couldn’t help me anymore. So…. I’m back where I started as far as getting adequate help. I am daunted, to say the least. All that work, just to have it all taken away without any warning whatsoever. I don’t even go the ER anymore… I have just lost all faith in doctors. The last MD that my nurse practitioner sent me to was supposed to be a thinker, but he pronounced after hearing about my sickly childhood that I must have PTSD, my pain must be the result of a conversion disorder, and only a psychiatrist could help me. I agreed to see a psychiatrist, but not to go back to that MD. The psychiatrist was so blown away by the way I’ve been treated, and I looked her dead in the eye and said “you’re young too, if it happened to you tomorrow, you’d have a hard time convincing people you weren’t crazy, you’d have a hard time getting the help you needed, and you wouldn’t fare that much better than I have.” and she was kinda taken aback, but she agreed with me. The system is broken. I’m too young to be taken seriously. There is no lab test I can show them to make them believe.
          But I will keep trying, there definitely isn’t any other option!
          Thanks for the encouragement and the reminder that I should be getting better help, and that it must be out there somewhere.

          Liked by 1 person

  2. lifeinslowmotion says :

    Wow, I can’t even imagine. You are incredible to still be moving forward for this long with that much pain ❤

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      Thank you so much, you as well, dear! Your words of wisdom constantly inspire me and console me. Not moving forward was what I did for too long and I can’t do it anymore. Sometimes I falter and start and stop, but we spoonies always have to keep going eventually, no matter what. I know of people in much more pain than I am who do much more with their lives, and I am striving to get from here: slightly stuck but realizing where I need to be, to there: the place where the true warriors against pain, like yourself, have made their stand. ❤

      Like

      • lifeinslowmotion says :

        The feeling is mutual! I think we all inspire one another back and forth in different ways and at different times. There are times when I am stuck with you! I definitely spent the last month feeling stuck, and I am just coming out of that in the past week or so. It is an up and down process, and hopefully we can both move towards a place of being stuck less and less.

        I sometimes feel the same way – that others in more pain are doing more than me. I am learning that those comparisons are not helpful, because how can you ever truly know who is in more pain? And even if this was an objective measurement, we all have different gifts, strengths, and abilities when it comes to fighting pain, and that is ok. It does not make one person better than another, it is just the strengths and weaknesses we are born with. We move forward as we can with what we have been given.

        Praying you have strength today ❤

        Liked by 1 person

  3. Mac says :

    Man, I’m not a spoonie but I do have chronic illness and I feel you SO MUCH here. Sometimes it’s hard to be thankful when I’m really sick, but you’re right about thinking in perspective. Even when my blood sugar is on either end of the spectrum I can still manage to walk down the stairs. It may be difficult, but the difficulty is momentary.

    I keep thinking about you and Cassandra a lot, and I hope you guys are able to make it through everything to the other side. You both have been fighting so hard to just to just exist, and that’s completely absurd to me that you have to do that, even though I have to do the same sometimes.

    It may not be enough, but you’ve come a long LONG way. I know it hasn’t been easy, but you’re still here. You’re still fighting. You can do this.

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      You have no idea it meant to read this, I’ve got tears streaming down my face. Thank you. Thank you for reaching out when I know it’s really hard to say anything to someone who is going through something you haven’t experienced yourself, and even sometimes when you have. I lack the words to tell Cassandra how much I believe she can do this, and we can see each other on the other side, in as good of shape as we can be considering what is not changeable.
      It’s everything to hear feedback from someone who has known me and who still knows me, because I remember what a whiny bitch I was for no reason when I was younger. I was in pain, but I didn’t even know it was weird to be in pain yet, it hadn’t reached that point, so I don’t have an excuse for that behavior in the slightest. I’m thankful for every word you wrote here, and I really, really, from the bottom of my heart mean that. ❤ Thank you for the encouragement. It doesn't happen very often, and it means more because you do know what it's like to feel tethered to an illness and to have to accept that and make room and adjustments for it in your daily living. You understand that is not something you can wave a magic wand and fix.
      I've been fighting with my boyfriend non-stop for weeks, about my illness, so the support there feels not genuine, like if I lean on him too hard, he will disappear.
      I am trying to lean elsewhere, but looking around and realizing I have failed to keep alive most every friendship in the period I have been ill. Even Chel. doesn't text me with her life's ups and downs anymore, and that kills me. I'm no longer labeled as the dependable friend or the go-to to discuss life's woes, and I know that people think they are backing off for my own good, but I need people. I need to be distracted from this total-body hell with social contact even if I cannot leave the house for more than an hour, and then only once or twice a week. It's hard to go out and see anyone on that schedule, and then I don't drive anymore so that's even worse. When I saw Cassandra last, she drove to me. I was mortified, really, even though I knew she needed the normalcy of driving at the time, she was still in pain and she was almost not able to get up the stairs afterwards and I felt awful. I tried to see her in the hospital but she was worn out and cancelled, and I am glad that she knew I would understand and felt comfortable with telling me to try again later. ❤ She is my hero. My absolute role model in how to be sick but stay above pity because people are too impressed with how hard you're kicking ass. I am constantly thinking of her long road to recovery and her hard work and bravery. What she is going through is a million times worse than what I am, and I would never compare the two in a million years. Just that if she can be so freaking amazing and graceful about cruel, evil, unfair cancer, then I can learn to approach my illness more like she does with practice. I just wish she could emerge victorious tomorrow even though I know that's not how it works. 😦 You are absolutely right, it is completely absurd for so many young people I know to be fighting their health and survival every single day.
      It's been a long weird journey, thank you for the constant checking in throughout the years, you're a total sweetheart for that, I know I have not been doing the same and I feel terrible. Hopefully I can work on that in the future too.

      Like

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