This card is to go with my post on How to Use the ER in Case of Chronic Pain Emergency, which has gotten over 50k views in just under a year! I never thought anything I wrote would be shared to facebook 10k times, or viewed 50k, or shared all over Pinterest, or anything remotely close to that, honestly, especially in my first year of blogging. I’m so thrilled and so thankful for the opportunity to share what I have researched and witnessed firsthand about living with chronic illness, chronic pain, disability, and mental health challenges.
I will be hunting down more relevant alert cards and posting as I find and edit them. Please feel free to leave suggestions in the comments below, and I will do those first!
#ehlersdanlossyndrome #emergency #alertcard #justincase #infographic #chronicillness #chronicpain #EDSawareness #EDS #hypermobility #dislocation #subluxation #JHS #hointhypermobility #hypermobility #severepain #EDSalertcard
Right now, I will do something very small and have to sit down immediately after or during a slightly more rigorous task, and it’s not the pain that’s knocking me down so hard, although there is a lot of that, I’m just pretty damn exhausted. Like, my bones are way too tired to walk to the mailbox or make it down the stairs to the garden, but I’m still able to fight through and manage those things sometimes. It’s very confusing. Overall though, the fatigue has ramped up to a point where I’m scared a little.
This is not meant to be a bid for sympathy or anything, I just have to have a place to put all this down and get it out of me. My body won’t allow me to do much of anything else and even writing has me fading in and out of consciousness because it leaves me so fatigued. To be completely honest, I’ve been feeling a lot worse lately. I pushed myself trying to create a small business that was never going to happen, and in many other areas of my life, and none of my accomplishments have added up to anything lately, not even one completely clean room. I have learned a lot and there were tiny moments of excitement and victory, but that isn’t anything I can put on my resume, really.
It’s depressing to feel like your health is going in the opposite direction that you’re aiming for. A lot of us are familiar with that feeling though, unfortunately. It’s just another part of chronic illness unless you can find a treatment that works. For a while things will hold steady symptom wise, and then a cluster of new ones will pop up one after another, which is what has been happening recently. Not every single new symptom stays around long-term, some of them will just last the length of this particular flare up, and some of them will attach themselves to my illness and they will be added on top of my daily already unmanageable pain, fatigue, and bodily systems that are completely out of whack. But these new symptoms will not be so courteous as to show up clearly on a test. Just abnormalities here and there, nothing to make an easy diagnosis off of. It makes my head spin trying to get a clear grasp on even the list of weird things that have happened with my body, and a lot of it isn’t stuff I feel comfortable sharing.
This flare up has brought with it a bout of sleep paralysis episodes, limb tremors and increasing muscle weakness, much worse than usual chest pain, rib dislocations, absolutely unpredictable new headaches and some severe migraines that actually got the better of me and landed me lying down until they subsided, hip subluxations on both sides, knee instability and weakness, poor typing and speech, including mixing up words, writing something completely different from what I was intending or thinking I was writing, forgetting phrases and words, increased inability to finish a sentence because I can’t remember why I started it, using big words but forgetting all the small ones, dizziness, trigeminal neuralgia attacks that feel like being struck with lightning over and over again in the same spots on my face, occipital neuralgia that is like being chiseled into on the back of my head, or like someone is grinding a screwdriver as hard and slow as possible into my occipital nerve, tmj issues making it a challenge to eat/smile/talk too much, jaw dislocations hundreds of times a day, lack of coordination and hand dexterity as well as random violent spasming when I try too hard to control my muscles for extended tasks like painting and typing, really painful joints all over, fatigue so heavy I feel like my veins are full of lead and my muscles are made of tissue paper and my bones are filled with cement, GI issues which all of a sudden include throwing up just about every other day, and delayed stomach emptying with all the associated nausea and pain and hating food/food hating me, possibly gastroparesis but I’m hoping not, problems associated with migraineurs even when the really severe head pain is not present (olfactory hallucinations, auditory hallucinations, light/sound/smell sensitivity, big blurry spots or color spots in my vision, things that look like shiny, constantly moving sprinkles all over my field of view, thinking things are moving when they aren’t, as well as not being able to track movement very well), falling asleep suddenly after exertion with no warning, feeling like I’m walking on razorblades and broken glass, sudden moodswings mixed with lots of feeling hopeless or just numb and dissociated from my disobedient body, muscle cramping, brainfog that is stronger by far than my Ritalin prescription, not understanding what people are saying unless they repeat themselves a few times, some obsessive behaviors I cannot stop doing and ptsd flashbacks, skin that hurts like thousands and thousands of nettle stings, and just so much more, but it would take so long to list, and this is why seeing a doctor once every 3-6 months is totally and completely unhelpful.
And I’ve been like this for two and a half weeks now, and it keeps dropping new surprises on me so I’ve got no idea when it will let me go…
I lost 15 pounds, and that was startling and positive. Not sure why I was so startled, I think it’s hard for me to notice the healthy changes I make and pat myself on the back unless some kind of tangible progress comes out of it, but lately I actually have noticed myself doing better at picking the salad from the garden over chips or pasta on the side, I’ve been back into yoga in bed, and in my better moments I try to sneak tiny bits of yoga into my day, with my arms close to my body and not pushing my flexibility to it’s max because I’m not in that kind of shape and my body can and will bend too far in every direction if I don’t watch myself in a mirror while I do it.
I’m so exhausted that it makes me laugh that I’m adding yoga back into my days but I can’t shower more than once every five days. Priorities slightly skewed? I don’t know, a shower is one very big expenditure of spoons that you’re committed to once you start, and yoga I can stop any time it hurts me, I can modify it to hurt less or not at all and to be done lying down even, and I dole out spoons one at a time to each little micro-session which is much less punishing on my body than taking a shower. God I miss being able to do that every day. The stupid shit we take for granted when we are healthy, I was so greedy taking two or three a day during sports and summer or just to get warm in the winter, and I never imagined I would ever give up my obsession with being sparkly clean every single day. It hurts to think about stuff like that though, and in general I just try to accept that things are the way they are and not ask “why me?” too much.
Not being able to shower is a big gauge for how much of a toll this has taken on me. The things I would have never given up if I had a choice, the gardening every day and walking for hours, the freedom of driving and earning a paycheck even if I didn’t enjoy the job or the commute sometimes, my clean house, the freedom to work out or go out with friends whenever the mood hit me, frequently visiting vintage shopping and buying fancy coffees just to treat myself, painting whenever I had a creative idea come into my head, preserving and cooking food especially when it came from my garden, baking bread almost every day, fashion, being able to complete deadlines and not be a total flake, being able to plan my next day and stick to it,
I feel bad enough on a daily basis that younger me, who had a damn high pain tolerance, would have been asking to go to a doctor almost every morning. But I don’t go even when it gets to be unbearable, because it’s so discouraging to be told more than once every 3-6 months that there is nothing new to try, nothing else to do that is in my price range, nothing, nothing, nothing, and to be treated like a drug seeker, a whiner, a lazy kid who can’t be bothered to get a job, when I just want to get better. I just want some hope, some kind of a future to plan on and look forward to. I don’t want to have to take these drugs. I don’t want to have to take two sparse and precious oxycodone just to get through taking a shower. This is not something I constructed to get out of working. I miss working. I’m young, my ability to work was my future and now I’m very lost.
I’m reaching for that point towards acceptance of my illnesses and new life where I can start to explore my talents and try to find more solutions, more small improvements, more joy in my life. I feel like it’s both close enough to grab and pull closer and simultaneously so far away that I fear I just can’t get there. I know I can only take it one day at a time and keep looking for the small victories, the shiny bits and the lessons learned no matter how painful, so I can quietly celebrate my life for those wonderful things amidst the chronic fatigue and pain.
This is a post about me, but I hope it touches someone else as well.
I realized today that for the last three years I haven’t had a day off, because although I’m not able to work, I also am not able to relax. This upset me. I haven’t had fun in so long I don’t know what it is anymore.
I used to be a fun person, didn’t I?
It wasn’t even that long ago.
Why can’t I relax? I do all these relaxation rituals every day like they’re going to save me, and I even get some benefit out of them. How come I can’t get where I need to be? I’m usually good at doing anything I really set my mind to, even with all the glitches my mind has nowadays. I have dedicated the last three years to healing myself, so why is relaxing so unbelievably hard? I’m sure most of the people around me think that’s all I do in a day; relax. It must look like it from the outside in, when I’m mostly in one place all day long, and I don’t work, and I don’t contribute to our bottom line. I’m sure there are a couple people out there who think I’m doing it for attention or for some other sneaky reason. Let me assure everyone, the only reason it looks like I’m okay is because I worked really hard to not spend the entire day crying, freaking out, and catastrophizing my painful and scary symptoms. Believe me, faking chronic pain isn’t easy or common, in fact, only about 1% of chronic pain patients have been found to be malingering or milking the system. That’s a stereotype for a differing blog post, though!
Then it hit me: I’ve been a patient for the last three years, but that’s not the only role I have been filling by any means. I have also had to be my own researcher and doctor for most of that time. When I stopped working a little over a year ago, I filled those hours immediately with my other duties (which were being completely neglected at that time because I was too sick to do both). I never really slowed down, because I felt so much guilt over not continuing the agony of trying to work a few hours here and there, when I could even get out of bed / stop vomiting / not have fiery and ugly hotflashes all day long. My first unemployed days overflowed with housekeeping, baking, doctor appointments, tests and imaging, canning produce, tending the garden that we depend on for subsistence each season, helping my boyfriend with his massive amounts of homework, keeping my houseplants alive, writing budgets and grocery lists, self-care routines, research my illnesses and symptoms, teaching myself ACT (Acceptance and Commitment Therapy), keeping track of my friends who are struggling with life-altering or life-ending illnesses while trying to help them emotionally whenever the opportunity arises, and acting as a caretaker for my boyfriend after his three hip surgeries.
None of these things are things I dislike or don’t want to do. In fact, I can’t imagine giving up any of these things any more than I imagined I would ever be forced to give up my job and driving. Giving tasks up means that someone else has to do them or they will go undone (like my make up and hair, for instance!). All the responsibilities that I am no longer administering to, such as driving, they mostly fall on my poor boyfriend, who is himself a chronic pain warrior.
I’m not happy with this situation. But I am learning to accept that I am not a burden simply because I can’t do all of the things I used to be able to do. The next step, the step I haven’t quite been able to take yet, but my toes are over the edge at least! I’m getting closer to being able to make this leap: at some point in the future I have to start doing the things I want in spite of not having enough energy to do the things I need to do afterwards, I have to start wearing less hats. It will mean downsizing my life again, which is yes, totally terrifying.
Most importantly, I am in control of what goes and what stays, this time. I know that getting any of my conditions into remission will be a process that requires me to reclaim my emotional well-being as much as my physical, if not more.
I have been afraid to step into the roles I really want to take on because I’m not doing a great job right now, trying to wear all these different hats for different people.
From now on, I’m making a pledge to myself, but also for all the other over-worked & underpaid spoonies out there, that I will not beat myself up for what I cannot do. I will be more gentle with myself when deciding whether to push through a painful task or take a short break. I promise to feel less like a burden and more like myself. No more guilt for trying to be a happier person, whatever it takes!
It’s a whole shift of mind, but I’m finally getting there. Closer, but the damn guilt still won’t let me paint like I used to, even on a better day.
I will get there soon, though. I can feel it.
If anyone has any advice on how to accomplish this new quest for self-love and self-worth, I would love to hear your input!
To all spoonies: You are good enough. You are not a burden. Be gentle with yourself when things are too overwhelming or too difficult to accomplish alone. You are worth loving and lending a hand to, no matter what. ❤
Please help spread the word about malfunction of the autonomic nervous system and the many chronic conditions it can cause. There is no cure for dysautonomia, it is an invisible illness, and from day to day and person to person the symptoms vary widely as does the severity, so life with any of these illnesses is a roller-coaster, to say the least. Some people are just dizzy all the time and may not even realize that it isn’t normal, and severely affected individuals faint every time they stand or even sit up for a period of time, sometimes just a few seconds.
No one bothered to teach me about the autonomic nervous system. In a perfect world, doctors would explain these things to patients who are experiencing classic symptoms of ANS malfunction, as I am, and they would explain just how involved the ANS is in so many processes throughout the body. Normally, when you are in pain or experiencing stress, your autonomic nervous system ramps up your blood pressure, makes you sweat, and elevates your heart rate. When the pain or stressor is gone, your ANS should quiet right back down again, returning to baseline (and you with it). Yet, the ANS can become part of a long-term issue like chronic pain as well. It can become so agitated that it is constantly hyperactive; constantly on. This can exhaust your body and cause a cascade of other symptoms, some of which may be unexpected such as chronic fatigue, gastroparesis, severe migraines, adrenal fatigue, increased chronic pain, and immune issues.
First, it’s important to understand just how much the autonomic nervous system matters. It is involved in most involuntary actions in the body, such as heart rate, blood pressure, digestion, kidney function, and temperature control. Imagine never being the right temperature; always being too hot or too cold. When I say “too cold” I don’t mean in a mildly uncomfortable way, the way it feels to be out in the cold too long for a regular person, instead it can actually be quite painful and feel like it’s coming from the inside out, stinging and zapping your skin anywhere it touches articles of clothing or a draft hits it. Standing up with dysautonomia is like climbing Mt. Everest on bad days, and the constant headaches and digestive issues get old, fast.
Here is a pretty good overview of what Dysautonomia is, who gets it, what treatments are available, and other useful tidbits of info about ANS malfunction, so you can help spread awareness this month;
Image by Rachael Rodriguez.
Hilariously, somehow I woke up at 4am last week, sitting in my PJ’s on the side of the bathtub with a towel folded under me, the biggest heirloom tomato of the season from my garden in one hand, and my hairbrush in the other. The tomato remained unharmed, don’t worry!
I have other “sometimes” sleep problems, they crop up and go away and return mysteriously again, with no known triggers. I have sleep paralysis that feels like I am choking, and I am usually trying to scream the entire time. They usually strike during a pain flare up, which makes them extra enjoyable since being stuck in one position is excruciating!
I mumble, giggle, and “speak in tongues” according to my boyfriend. But not all the time. Sometimes I get kinda violent in my sleep and have landed a punch on my poor partner. He’s a tough guy, but apparently I hit a lot harder in my sleep than I do in real life. Hah, he’s such a saint!
Since I started taking all my meds, the sleep problems have persisted on and off for three years. Possibly it’s because of the accident I was in. Who knows. Remembering a dream is a precious precious thing with all the drugs I have to take every night in order to be able to get out of bed the next morning. I get so excited, but even when I do remember one, I can’t remember it long enough to write it down because all I can think of is what a let-down it is to still be in as much pain as I was the night before, and almost as fatigued too. Hopefully as I start to detox off the meds, I will start to dream again. And sleepwalk less!
This is going to sound harsh, and it is. It is one of many, many harsh lessons learned through dealing with a chronic illness. Learning not to fear new symptoms is a huge part of accepting chronic illness, and it isn’t fair, but that’s the way it is when your doctors dismiss everything that goes wrong, large and small, without so much as researching them first. I don’t catastrophize anymore about new symptoms, partly because I don’t have the energy and partly because it does not help, it doesn’t get me anywhere I want to be, and it sometimes can make a flare up spiral out of control. I’m scared of lots of stuff, but even having half of my face go numb for eleven days (like right now!), it just isn’t a big deal compared with the rest of my illnesses and the other weird, painful, and occasionally terrifying symptoms that crop up out of nowhere. I get crushing chest pains that go down my arm and feel exactly like I’m having a heart attack, complete with crazy blood pressure and all the blood flow to extremities and stomach shutting down and my lips and fingers turning blue.
Most people would have done differently, but the first time it happened, I was in too much pain to speak, it was like the wind completely got sucked out of my lungs. I didn’t even call my doctor, instead I asked my friends what was happening to me, and they knew immediately what it was and that I just had to wait it out. My chronic illness sisters were so compassionate and gave me tips to get through the attack based off of their experiences. I later learned there was nothing an emergency department could have done for me, and that my doctor actually didn’t care that I was having them on a pretty regular basis when I did tell her about them. She didn’t even put it in my chart notes. If I had gone in to the doctor that first time, it would have no doubt been a negative experience, and I need all the positivity I can gather when I am going through a scary or difficult symptom especially for the first time.
So at least in my unpredictable case with so much going on, actually expecting help from doctors is way more terrifying than having my face go numb and not being able to get out of bed because of severe spasms. Again.
That being said, I’m tired of being ill, and mostly of feeling so on my own when it comes to debilitating health issues. I want to go back in time three years ago and be a 20-something with a stressful but mostly happy living situation, and act like other 20-somethings and not be sick and stuck in my house all day every day. When I get injured, I want to still believe that doctors can fix it all. I don’t want to simultaneously have chronic fungal, bacterial, and viral infections that will not go away. I don’t want to look at my disgusting house and think, “hopefully my body lets me do the dishes at some point today” or “not even a possibility, don’t even look at it.” and then realizing that even if I fall over in the middle, I have to do them no matter what, because this is life and this is the rest of my life. I might sound stronger than I did a few years ago, but I feel the opposite. I feel fractured apart by chronic illness, even my thoughts are scattered and lack complexity and depth.
Part of what I want people who are newly diagnosed to know is that breaking down is okay. Being frightened is okay. All of your emotions are valid, and just because there is an emotional component to your pain and symptom flare ups, it does not mean you are to blame in any way for the failures of your body. You aren’t floundering because you’re weak, you’re floundering because being in chronic pain takes away some of your ability to think clearly, it shuts your brain down to an extent, and frequently, doctors lack the compassion to properly understand where you are coming from.
At first, chronic illness is overwhelming, it is losing friends and the ability to be independent. It is sadness, depression, anxiety, and feelings of being a burden and/or being judged lazy or crazy. In the beginning you don’t know when the losses will stop. Until one day you find yourself on the same emotional footing you were on yesterday, and then hopefully the next day as well, until maybe you have a day where you find yourself more “you” and at peace than you have been in a long time. I’m not saying the pain goes away or you get used to it or you should just learn to tough it out or anything, just that there is not enough room in our previously busy lives for the kind of suffering that chronic illness heaps on us. Part of the challenge is making room for the pain and being respectful towards it. It is a part of life now, and if there is no room for it, the suffering it causes spreads across every part of your life.
The more I make room for the pain and general feelings of being unwell, the better I am able to cope with the other symptoms, the ones that scare me almost as much as going to the doctor one more time.