Hypermobility = Unstable Joints = Two Black Eyes
Wow, I sure feel like an idiot. Also I’m miserable, so whatever lesson I was supposed to learn, I think I got it now, universe! Seriously, you can stop!
Until last night around midnight, I had not slept for 68 hours. At all. I don’t usually end up forfeiting more than one night at a time to Chronic Pain, but this time she went ahead and took two full nights from me, and then some. Bitch. Anyway, I was hurting from trying to have one of those as-enthusiastic-as-before-I-got-sick nights of fun with my boyfriend, but ended up accidentally injuring myself absolutely everywhere while we were at it. Waking up a couple hours later on Sunday, I realized there was no way I was going to be able to get out of bed at all unless I got up right then and there, so at 5 am on Sunday, Chronic Pain began her longest winning streak against my sleep since the car accident.
I don’t remember everything from this entire time period, and you can kinda see why in the picture!
I know I laid down to go to sleep both nights, but that both nights, nothing happened, so rather than stress and get frustrated in bed, I got up and paced around the house, smoked a cigarette, drank a glass of water, wrote in the hard copy journal I sometimes keep, did light stretching, self massage with the DaVinci tool and the back buddy, and ten minutes of breathing. Still awake. Okay. Rinse. Repeat. Rinse. Repeat. Damn it, sun is shining, guess I am up for the day. Same thing the next night, only I was in even more pain and way more loopy, and my limbs were shaking and sore and muscles all over felt torn and limp.
I was wall-walking, which is how I navigate my house when my balance and motor skills start to go, or when my vision is not what it should be. Unfortunately I had just moved a bunch of furniture earlier in the week to create more open space in the living room for my business partner and I to actually get some work done and set up the play pen for her little boy. Instead of guiding myself to the couch with familiar furniture, I ended up with one leg collapsing out from under me just as I took a step, then realized I didn’t have anything to grab onto. So my nose grabbed onto the side of a table or just the floor, I’m not quite sure, and I blacked out for a second (actually have no idea how long I was out…), came to on the hardwood floor in my living room, close to the couch, but not close enough, and realized that my hand which was cradling my throbbing nose was full of hot liquid. Shit. Shitshitshit. “Chris! Hey… honey, can you help me?” I remember calling loud enough to wake him up as I made my way towards the bathroom. The bleeding took kind of a while to stop, and for obvious reasons after knocking myself out like that, I couldn’t go to sleep that night either. Yesterday crawled, I kept nodding off until my cortisol levels caught up with the day again around one or two pm. Coffee couldn’t help me, but I kept trying. I was so excited to sleep last night, finally, that pain be damned, I had already done an hour of relaxation including meditation, visualization, gentle yoga, and working on my breathing, so I was out cold in under 5 minutes after crawling beneath my pile of blankets. I woke up at 5 am to my right leg screaming painfully at me because all the blood had for some reason stopped moving around in it, and it was throbbing and immobile, and hurt like I always forget is even possible, all my toes twisted and curled up in unnatural positions. I had to stretch the toes out by hand after I dragged my dead leg over the side of the bed and mostly succeeded in not screaming when it hit the floor. Excruciating is the only word for trying to get blood pumping in a limb again once it has pooled there. So even last night, though I slept, I was up and down again.
And that’s what my black eyes and nose looked like when I woke up this morning, so I won’t be leaving the house for a bit unless it’s an emergency. Haha, embarrassing!
If this cycle is going to keep repeating as it has been for the last year or so, I am going to need some kind of pain relief, obviously, to make it possible to sleep during flare ups at the very least, so I can break the cycle. Being able to sleep is the only way to begin to crawl my way out of a severe long-term flare up. Haven’t I shown that I’m willing to try anything and everything, haven’t I given it all a real try? What works best should be available to me, but it is not. This whole demonization of opiates has hurt so many innocent bystanders, and it has hit the chronic pain community so hard that many of my friends who were on pain contracts and have been dropped recently have reverted back to unhealthy coping mechanisms and self-medication. After years of success working with their doctors they are being treated like junkies, and I think being treated like that actually produces more addicts than anything. Anyway, tangent over, back on subject: I usually (since the car accident anyway) cannot sleep at least four nights a month because of pain, and I have accepted and adjusted to that. Unfortunately it’s been more like six or seven nights just in January so far, and that is starting to increase my pain even more. This is one giant vicious cycle that I want out of so badly. I don’t sleep or nap during the day, it’s part of the mystery with my case, and it confuses my doctors a lot, but to me it’s just my personality. I also can’t “catch up” on sleep from one night to the next because sleeping extra hours equals severe pain that I have learned the hard way to avoid by setting an 8 am alarm, just in case I manage to sleep in that late. My schedule is as consistent as my pain allows and I thought I was improving, but this latest increase in pain and accompanying strange ramping up of other symptoms has left me concluding that was just hopeful optimism.
This week in particular the meds that are supposed to make me fall asleep and stay asleep are making me feel wired and wide awake, and the meds that are supposed to help me focus and get through the day are making me want to curl up in a ball somewhere dark and sleep it off. That makes it hard to want to take anything at all, the only thing that keeps me on my regular maintenance doses of everything and keeps me slowly decreasing the Lyrica is knowing how awful the withdrawal effects are on top of an already painful day (previous experiences where I thought I had taken my pills, only to figure out the next day, in extreme pain, that I had actually missed one or two doses, or accidentally falling asleep with nothing on board, or thinking that I was magically cured for a day and not taking my meds. Oh, how I have learned).
Lately my whole-body pain has increased, as have my migraines, and though I have met this change by continuing my small exercise regiment and getting up at the same time, eating healthier and limiting my caffeine and sugar intakes, it has just continued to roar brighter and higher, an ever-increasing, agonizing bonfire blazing across my brain.
I have found that beyond a doubt, not a one of my current meds helps with breakthrough pain or flare ups. and I have to wonder how I am supposed to be increasing my activity levels and taking on more and more responsibilities while I am just getting worse and there is absolutely zero relief from the resulting negative impact on my health. Being in so much pain that I can’t even catch an hour or two of sleep is just unacceptable. I’m not headed for better health by pushing myself like this, I’m headed for new scary/weird symptoms, extra agony, and perhaps even total physical collapse.
I have been saturating myself in a mixture of all of my topical treatments combined into one super-pain-gel, with extra crushed up arnica tablets, drops of essential oils, high CBD/CBG hemp oil, castor oil, and everything under the sun that is considered a pain-killer or anti-inflammatory. I whip this concoction up often when I am in more pain that usual, but this time it is not working as previously, so I called up my compounding pharmacy to find out how much ketamine they can cram into one of these creams for me. Turns out, three times more than is in there right now! I am so relieved, that might actually help me! They also add something called LDNs to topical treatments, and if anyone has any experience with LDN’s either topically or orally, for chronic fatigue or fibro, please, please, PLEASE leave me a comment with your take on it! I am fascinated.
My boyfriend actually found the article about them as relating to fibro pain, so thanks to him at least I have something new to try that doesn’t necessarily have to be ingested (my kidneys need a break!). I am really encouraged that he researched my situation enough to find that potential solution! On the other hand, there is still no verbal reassurance from him, no open communication, no emotional honesty from him, and no two way conversations. Just…. Trying not to be so upset about how I think he feels towards me and focus more on how I feel towards myself. In the end, in order to be in a true relationship I must have the strength within me to keep trying to thrive, all on my own. My strength doesn’t come from him. Even if it would be so nice to have his verbal support, not having it won’t kill me. So progress has been made on my side in the relationship, and some progress and gestures have been made on his part. I have been kind of cool and reserved towards him, and that’s because in between my own bouts of emotional honesty, I have noticed how there is never a reply from him, never any comfort besides physical, and unfortunately I can’t always tolerate back rubs, hugs, and tilting my neck or moving my jaw for kisses. Plus, with all my abandonment issues and PTSD, I have to be careful to disengage from my most co-dependent behaviors, such as changing my emotions to suit his mood. The goal is to do this without hurting his feelings, but it’s rough. It’s hard to explain to him why our relationship is less healthy than is ideal, and it’s hard to keep pushing for what is better for both of us. I got us into this mess by dragging so much baggage, trauma and emotional damage from my childhood unknowingly into our relationship. He did not choose to be in the role that he is in now in our relationship. I just keep talking and hoping some of what I say is making it through and hitting its mark, because I have no way of knowing for sure. Sometimes my own fears cause me to act out, and that seems to be the case here. The reality is that he does many small sweet things, he tries, he wants me to be happier, he wants us to keep working towards a better tomorrow. Even if he doesn’t know how to communicate it at all, and he doesn’t know how to say the words I need to hear from him, he loves me. There is so much room within that love that together I know we can shape our relationship into one that is truly honest, content, respectful and forgiving. We will get there, that goal is a lofty one even for a couple not dealing with Chronic Pain. On this issue, Pain can kiss my ass, that jealous creature is not taking any more people out of my life than she already has.
Right now I am at a cross roads with my life in so many ways. I find out in the next three days, hopefully, if I am qualified to stay on my mother’s health insurance. Super Stress! If not, I lose everything concerned with my health which I have so delicately balanced in my life right now; all my access to medications, doctors that I need to continue seeing, the teaching hospital, my psychiatrist and mental health care in general, and to top it all off, Fibromyalgia is not a covered condition under the state-run health insurance. Great. Fucking great. So there’s the cause of much of my anxiety lately. As usual I procrastinated, and as usual I didn’t have most of the information I needed when it would have been ideal to have it, but unlike usual, I didn’t let my ADHD and brain fog stop me from getting everything in on time, early even, and following up with them. I have sticky notes, alarms on my phone, tasks on ToDoist, etc, anywhere I can slap reminders to stay on top of this stressful issue. The idea of losing access to any quality healthcare is terrifying beyond words, I do not even feel capable of contemplating how that will go if I am denied.
Most days it is a major struggle to get anything done at all, and even though I have only been able to shower once every four or five days, I just keep doing the one or two tasks a day that I am capable of, and that has so far in the last month added up to a rudimentary business plan, a super organized list of links to wholesalers, ingredients, prices, as well as display and packaging ideas, and recipes for many of the products we will be attempting to make. Only the best and most useful will actually end up on our first line at the end of spring. So again, progress is happening, but it feels unfairly limited because of how little I can do at one time. The old me would have products done by now and ready to be packaged, she would have designed the logo, created a website, written ten blog posts and scheduled them out in advance, and started working on the final draft of the business plan. Unfortunately I am not the old me, and my current level of ability will just have to suffice. I know i can make it work, I just need to stay consistent. Having this driving focus on an overall goal for the future is helping me stay sane during this gnarly week of flare up, but it’s also making me a little crazy. If that makes sense.
I am aware that I cannot continue pushing this hard indefinitely, and yet I’m not ready to decrease activity. I have finally found a few passions left in my life, like painting, writing, helping friends during difficult times so I can be around when they are thriving again, advocacy, staying educated about clean eating and chronic disease research, designing, and starting our small business. I finally looked Chronic Pain in the eyes and told her off by doing things that are incredibly painful, and which take weeks to recover fully from, and enjoying them, instead of worrying about the inevitable fiery backlash from fibro and chronic fatigue and hypermobility. So even though the pain is seriously awful, I’m not finding myself ready to stop.
Maybe I’m just crazy. Maybe I’m being unrealistic and stubborn. Maybe this is false bravado. No matter the reason, I have tasks piling up that need tackling, and this business is no longer just an idea, it is happening, and so I have to keep pressing forward, pushing through the brain fog, this newest stupid injury, and the severe fatigue and pain, all in order to keep seeing the incredibly slow, but present, progress towards a higher goal.
I am slightly dismayed that throughout my life I have always wanted better and been willing to work on myself, but somehow measurable progress has still been so incredibly slow as to seem non-existent or even backwards at times. Even getting close to figuring out what is going on underneath the obvious is a long up-and-down journey that I am still on.
My one truth, and a major consolation lately, is that I have never passively allowed myself to suffer, even when I whine like it. I am always seeking some kind of alternative to my present situation, and I have nearly always achieved those goals. Often the changes were not positive like I intended, but instead were more closely recognizable as manifestations of the trauma sustained throughout my childhood. Basically, my reactions to the perceived ever-present dangers and perceived constant rejection from those around me are what have been reinforcing unhealthy coping, despite my best efforts. Knowing that puts some of the power back in my hands.
I am not a small child anymore. I can handle almost anything that is thrown at me. I am not helpless. I am not unlovable, my emotions are not disgusting, and I do not have to accept unfair criticism from anyone.
Phew, I guess I had a lot to get off my chest after not really blogging for so long. Sorry for the length of this mess of a post! Thank you for reading if you made it this far!!! ❤
Even with two black eyes and a very swollen and throbbing nose, I refuse to quit. Bring it on, Pain. Let’s see what I can get done today, despite your ugly presence. Keep trying to stop me. I’m not scared of you. Eventually I will be able to put you in your place, but until then, let’s be very clear about something: I own my body, and you, Chronic Pain, are just along for the ride.
Having this blog and meeting so many strong and wonderful individuals who are not defined by their illnesses has changed me in ways I would not trade for anything.
Tags: at least it's not broken!, chronic pain, concussion, dangers of painsomnia, EDS, Ehler-Danlos, injury, Joint Hypermobility Syndrome, Painsomnia, she weebles and she wobbles and she falls down all the freaking time!, sustaining an injury with fibro and chronic fatigue
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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