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.
the above image is from Chronic Illness Cat and the below article is taken from EDS Info, a wonderfully informative blog for any chronic pain sufferer, which you should all go check out and bookmark and return to often.
UNTREATED CHRONIC PAIN IS ACUTE PAIN
CONSEQUENCES OF UNTREATED AND INADEQUATELY-TREATED PAIN
PAIN SUFFERERS ARE MEDICALLY DISCRIMINATED AGAINST
CHRONIC PAIN IS A LEGITIMATE MEDICAL DISEASE
Introducing the free mental health resource 7 Cups of Tea to anyone who hasn’t heard of them before.
If you need someone to talk to, any time, this is a great website to save in your favorites. All chats are anonymous, and you can either connect to the first available listener or find someone who fits your needs from their list of therapists and listeners.
7 Cups of Tea is a safe, non-judgmental online space to talk it out with trained active listeners. You can even connect with a therapist or active listener whose specialties are of interest to you or your particular situation. There is also group support if that is more your style.
7 Cups also offers a set of thorough self help guides to consult, including self-help for chronic pain, as well as for anxiety, college life, and even one for entrepreneurs who are struggling with their start up companies. There are a wide variety of topics covered, you may be surprised to see a self-help guide for something you thought not that many people struggled with. They keep an expanding library of articles about specific mental health topics, such as this post on Mindfulness.
There is a lot to see on this website, and a lot to remind us about basic self-care during the tougher times in our lives. The self-help guides might seem repetitious for spoonies and those living with chronic pain, but our mind plays tricks on us when we are at our lowest, and the simplest of ways to practice self-compassion and healing slip through our fingers. That’s why it’s a useful website to bookmark and visit often, even when you’re not planning to chat with an active listener. I have added 7 Cups of Tea to my Chronic Illness Resources Page. Any online resource like this is just fabulous, and this is one of the best I have found. Plus, it’s FREE, and free is an awesome price. Especially for those of us who are prohibited from working by our illness or pain.
Volunteer Opportunity Alert:
If you’re looking for a volunteer opportunity that you can do any time from home, this may be perfect for you! They are always looking for new Active Listeners to train so that more people can receive one on one attention.
If anyone has any suggestions for self-help websites or free online therapy, please leave the URL below in a comment and it will be added to my Chronic Illness Resources Page.
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:
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.
Today as I was on my way from the bedroom to the living room with my stash of topical treatments for pain, I realized I must have a pretty decent collection by now, not even counting the twenty or so others I have thrown out. Each one goes with a different kind of pain that it helps to relieve, sometimes not enough at all, sometimes just enough to not scream. Sometimes I hurt so bad I forget I have them completely, and when that happens, they definitely don’t do me any good!
Do you have a small pharmacy at your disposal too? I better not be the only one who buys supplement after supplement that will supposedly help with pain (I was too embarrassed to take that picture, it would have scared you guys. So many bottles!!!), and I hope I’m not the only one who scours Amazon for the newest rubs, creams, and pain relieving ointments. Sometimes I hit gold, and I will make a list of my favorite topical and oral over the counter treatments very soon. The little gold and silver pen is a crystal powered “acupen”, not quite like the really nice $150 ones out there, I only spent $16 on this one, but it gets the job done on hands, feet, arms, parts of my neck, ears, jaw. It just blocks the pain signals temporarily by sending out a harmless electric pulse, it’s not magic, but hey, every bit counts when relief is slow in coming. Bonus: it doesn’t ever need batteries replaced!
I have told my boyfriend a million times that distraction is half the game. it’s why I talk non-stop sometimes when I’m hurting my worst, even though it gives me a horrid sore throat and I start to feel flu-sick after a few minutes of chatting. Even inflicting more pain is better than focusing on the pain. If that makes any sense at all. It probably does not, lol.
Sometimes I can’t seem to tune into real life, or break Pain’s hold on me. On those days I sometimes get depressed, anxious, and a little desperate. I feel outside of myself and “other” somehow, like I have nothing in common with the people around me, or like I shouldn’t be around people at all. Now I (try to) channel that bad energy into looking for at-home treatments to try or new ways of thinking about my illness that make it feel a little less like the massive burden it is. Every single little trick helps!
BTW, the most effective combo for my pain so far is Topricin, and my specially-mixed-for-me prescription of Ketamine 10% / Keprofen 10%/ Tetracaine 4%. But I actually do use every single one of the things pictures here on an almost daily basis, because I can only put the creams on so many times each day so I rotate through all my options frequently.
If anyone has anything to recommend, I would love to hear about it! I can’t handle anything that is too much like IcyHot, because that burnsburnsBURNS. But lighter cooling/warming products are usually okay.
Hope everyone is having a relatively pain free day. ❤
I would literally rather have a finger chopped off (I have actually lost the top part of a finger right above the last knuckle so I do know what that feels like, I’m not just saying this in ignorance), maybe even two fingers, than deal with this cruel pain.
It starts in the back of my head and the base of my spine, and then the two painful areas spread out, reaching towards each other up and down my back, like it’s encasing me in a spiky shell made out of pure, unadulterated pain, then up, up, over my ear and it curls so evilly around my eyes. It is so immense. So sickening. So beautifully and radiant and piercing that I am unable to do anything but stay still and be consumed. I feel like a sponge being wrung out over and over again. There is no way to adequately explain the waves of pain cresting and rolling over my body.
I am misery. I am made out of twisting, tearing, crushing pain. Lightening is running through my bones, doing whatever it wants unchecked.
But this is right now. Tomorrow might be better, tomorrow is hopeful and waiting for me, if I wait for it.
I’ve written before about how tough it is, how draining, to wait without any end in sight. I often have to sit with a severity and kind of pain that consumes me, there is no other option. I do not have access to the correct or even halfway correct painkillers and muscle relaxers, Lyrica is a joke. I wish I hadn’t started taking it because it will not let me stop. I ran out of Aleve…. it was easier on my stomach than the mostly useless Diclofenac I have been prescribed. I can’t seem to take hydoxyzine without having worsening panic attacks or some awful, foggy, un-refreshing naps all day long, and propanolol was causing me disrupted sleep, worsening and more frequent panic, and severe brain fog, so I was told to discontinue using it. I could not write or organize my thoughts on either one, and my speech was declining as quickly as my short term memory. I do not think that Lyrica is helpful with my speech either, what with it’s toxicity to new brain synapses (post to come about that research later, when I can think). When you’re in a ton of pain and your supposedly super smart neurologist(s) tell you to start taking Gabapentin, then Gralise (the once a day version of Gabapentin) and then finally they land on Lyrica, you just go with it, right?
NO. No no no.
If only I had known that my doctors had no idea what was wrong with me at that time, that they were guessing in the dark, and that they were only getting slightly closer by prescribing Lyrica. They were also condemning me to a long period of taking pills that are highly dangerous to a fetus. I wish someone had explained that, because 22 year old me still knew she wanted kids pretty soon, illness or no illness.
For now, all I can do is tough it out, sit here with a level of pain that is worse than having a missing finger, even with all the non-narcotic pills and supplements I do have at my disposal.
How can that possibly be?
Because when a normal person chops off their finger in a freak accident, they have inherent opioids and opiate receptors inside the body, and a healthy body will send out lots of pain-dampening chemicals to keep the pain contained. I didn’t cry when the top of my finger got bitten through, but I did lose a lot of blood and go into shock eventually. Sometimes, even though I’m not losing blood or crying, I go into shock from the amount of pain that my chronic condition causes. For people in chronic pain, all the possible opioids are being flooded into the system all the time, almost completely in vain. Unfortunately, on top of this normal cycle of central sensitization that happens in many kinds of chronic pain, in fibromyalgia patients there are not enough opiate receptors to get any real relief, even if that constant flood of internal opiates was enough to help us with the level of whole-body pain we experience.
In the face of a spine full of invisible daggers, my body’s helpful ability to make opiates is next-to-useless. Unfortunately, chronic pain sufferers never get the natural rush of relief that comes along with acute pain.
It also means pain pills do not work as effectively for people with fibromyalgia. Some of the folks who need them most can’t even make efficient use of painkillers inside the body. Completely unfair, right? I think so too!
For now, I am waiting. I am not calling my doctor’s office frantically, although I may at some point today, and I am not sobbing hysterically even though I would like to completely melt down. I know it can actually be worse than this, as much as that seems impossible right now, because I have been in even more pain than this and sat with it.
It took years to get from “I will never accept that someone can just feel like this most of the time,” to “Oh well, what am I still able to do despite the pain, in between the waves?” It’s not an easy journey, but I can say that I am happy with the progress I have made, slow as it is at times. Like all progress, I go back and forth, not every day is a good day no matter how much positivity I pump into my life.
To be perfectly honest, I do want relief today, I can’t take this, and narcotics would absolutely help me do the many many things I need to get done but which will have to wait until tomorrow, at the very least, because there is no relief for me any time in the near future. Fortunately, I am still able to write, albeit slowly, and for that I am thankful. I know that it is a slippery slope with the painkillers that do help me, and I am 25, and I can sit with this pain again and again, and I can wait. It doesn’t not mean it is fair, or that I am happy with the situation, just that I know my will is stronger than this horrible pain. I will still be here when it recedes a bit, and that is all that matters right now. Half of me is trying to be calm and logical, but the other half wants to scream and cry and use up precious energy on fear.
I might feel like I’m being consumed by my pain at the moment, but in truth, I am pushing through the fire, and I will emerge mostly fine on the other side when this pain is done with me.
Here’s hoping that happens really soon.
What to Do When You Have to Resort to the Emergency Room (When You Have a Chronic Illness)
A trip to the ER is no fun, no matter how you spin it. When you’re a chronic pain patient or someone with a chronic illness that can cause bouts of severe pain, it can be a complete and total nightmare.
A patient with chronic pain can help the Emergency Room staff to understand that their medical problems, especially pain, are a legitimate emergency by following a few guidelines and suggestions that will lessen some of the unpleasant drama of going to the ER.
Always bear in mind that the Emergency Room is a last resort, and Urgent Care will almost always turn away a patient with a chronic illness. Hospitals are so wrapped up in covering their asses legally that they have started turning away chronic pain patients much like Urgent Care does, even when the need for treatment is real and immediate.
Your regular healthcare team, especially your Primary Care Physician, is by far your best bet for getting help managing a chronic condition that is spiking out of control, but sometimes the ER is the only option. When that happens, here are some tips to help make your experience more manageable:
- Make sure that you have a regular physician who treats your chronic pain. That’s a relationship that all chronic pain patients should establish before they ever set foot in an emergency room. Without this all-important steady doctor-patient relationship, the rest of this list is not really possible. In terms of seeking out aid in the Emergency Room for a spike or flare of pain having to do with an ongoing condition or problem, even having a bad doctor is better than no doctor at all. If you are having trouble finding a primary care physician who actually does care, the best place to start looking are local and even national support groups for your condition(s). They will have lists of hospitals and even specific doctors in your area who have been a good match for others in your situation. If those doctors are not taking patients, don’t be afraid to ask their staff where they would recommend going or if that doctor can make some recommendations of physicians they know to be effective at treating your condition. This search can take a while, but always keep a PCP on file, if you at all can. Not having a primary person who writes your prescriptions and handles your referrals makes the staff in an Emergency Room nervous no matter what.
- Show that you have tried to contact your regular doctor before you go to the ER. If you have been in pain for five days and have not alerted your doctor, the ER staff will question how bad your pain really is. Even if the pain struck out of the blue that day, make an effort to contact your regular doctor first. ER staff will be more sympathetic to patients who have called their doctors and been told to go to the emergency room because the doctor was unable to see them. At least you’re showing you made an effort and only using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication. This is important, as unfair as it is, they will not give you proper care if you are using the ER too liberally. Having your physician back up your story is never a bad thing, it helps establish legitimacy and urgency, and can help push you through to getting treatment sooner rather than making your wait for four hours “just to make sure you’re really in pain” before giving you any medication or imaging.
- Bring a letter from your doctor. A letter from your physician, with a diagnosis and current treatment regimen, is a logical, completely reasonable thing to carry with you, particularly if you’re on a regular dose of opiates in today’s atmosphere of distrust and disbelief of pain patients. Always make sure the letter has your doctor’s name and phone number. That way, if ER doctors want to contact your physicians, they can. This is especially useful if you’re traveling or going to a hospital that you have never visited before.
- Bring a list of medications. Bring a list of your medications, instead of relying on memory. Usually the hospital will already have access to the list of everything that you have taken for the past several years, so don’t try to lie about it, you will only hurt yourself in the long run. Always be honest about medications you have taken or have been prescribed.
- Work cooperatively with emergency room staff. It might not be fair, but if a patient comes in screaming and shouting that they need pain medication right away, the staff isn’t going to like it. Being loud and distressed will call negative attention to your actions and makes hospital staff that much less sympathetic. You might be in agonizing pain, but the staff is going to be more concerned with “drug seeking behavior” than your well-being. So rather than demand things, try to work cooperatively with the staff, even if they’re not being cooperative with you.
- If you have an alert card or pamphlet explaining your condition, hand it to them and ask for it to be put in your file. For instance, I keep a card in my wallet explaining that I have Ehlers-Danlos Syndrome and detailing the worst parts of the illness and information that is pertinent to an emergency. I also listed my most severe medical allergies around the border of the card in big black block letters. It’s important for the staff to know what is going to cause more pain & what may help. If you have a rare condition or one that is frequently misunderstood or which is conventionally thought to not cause pain, bring a relevant pamphlet from an awareness or advocacy group with you. Consider buying one of the brand new USB alert bracelets, pendants, or wallet cards. These plug into a computer in an emergency if you can’t speak for yourself, and they can be uploaded with as detailed medical information as you want, from medical history and current doctors with phone number and addresses to info like allergies, current medications, current medical concerns, and alternative treatments/supplements as well. Most manufacturers understand that a computer might not be nearby in an emergency and have a phone number printed on the back of the bracelet that you can call to access the information as well.
- Ask for a nurse advocate or make sure someone is with you. This will help you when trying to explain things to the staff. It helps to have another person there to advocate for you.
- If at all possible, use the same Emergency Department as the last one you went to, your pain will be that much more believable if you always use the same place. Plus, you might actually get doctors to take an interest in your chronic pain condition and maybe even other conditions that can cause a chronic illness patient to end up in the ER. Think about the ramifications that could have down the road for future patients!
- Finally, since there are a lot of easy-to-forget details in this list, especially in the fog/panic/blacking out that happen whilst in horrific pain, I like to keep a folder handy with all those details written down, as well as a copy of most everything I need to bring with me. It isn’t always updated with the newest things I’m taking, so I bring the bottles themselves if I am on anything different since the last list was written. Being organized shows the ER team that not only do you take your condition(s) seriously, but that you have done all you possibly can to avoid the Emergency Room and to only use it as a very last resort.
About two years ago I was turned away from an ER without treatment by an extremely ignorant physician (after toughing it out all night crying and screaming at home), I had to contact and be seen by my pain doctor the next morning and then was sent right back to the same ER, only this time I was told to have them call my pain clinic when I got checked in. I did not want to go back there, but things went a lot smoother the second time, despite my apprehension. I was given the correct sedatives for once, and no one yelled at me or gave me super judgmental looks. I was treated for pain, monitored, and released without being asked to pee in a cup or otherwise treated like an addict. It was the only decent Emergency Room experience I have ever had, other than being in constant, black-out, vomiting, excruciating, unrelenting pain for almost 48 hours prior to finally receiving treatment and not sleeping a single hour of that time, all from an Occipital Nerve Block injection that was supposed to be a diagnostic tool, gone horribly wrong. (Hint: If your gut says “Do not do this, it isn’t safe” then listen to your gut, or it probably isn’t going to turn out well. I knew in my soul that the injection wasn’t going to be a good thing for me, and I don’t even have a minor fear of needles.)
I haven’t been back to the ER since, I have to admit I have stayed at home through even worse pain than that episode since then. No part of my soul trusts the Emergency Room to treat me, as a 26 year old fibromyalgia and chronic fatigue syndrome patient with occipital and trigeminal neuralgia, Spina Bifida Occulta, Joint Hypermobility Syndrome / Ehlers-Danlos Syndrome, with damaged vertebral discs at the top and bottom of my spine and everywhere in between, just to name a few of my chronic pain conditions. None of that matters because what they see is a 26 year old who usually hasn’t showered in days, is twitchy and fidgety (pain makes me move nonstop sometimes), sweating profusely (a fibro symptom having to do with autonomic nervous system dysfunction or dysautonomia), has a hard time walking in a straight line, and usually I am extremely angry or panicky, one or the other. There isn’t a lot of sympathy for me if I don’t do absolutely everything right when I go to the ER.
Chronic pain isn’t easy to express, not in words or pictures. I have struggled to express how chronic pain actually feels through art. My paintings are abstract multimedia pieces, and for the most part they’re just so I have something bright to look at around my house. They leave the onlooker with no idea that I suffer with every brush stroke, every adhered scrap, every swipe of the palette knife. These five artists, however, have managed to express so many of the things I feel every day, but have no idea how to show people a visual representation of.
Since I’ve been feeling particularly lousy and in way more pain than is even normal for me, I’m gonna go ahead and let this count as a blog post? I want to do a whole series on art relating to chronic illness, but we will see. I’m so disorganized!
1. Of course, let’s start it off with Frida, who had a pain syndrome that many have speculated was fibromyalgia, as well as severe and debilitating chronic back pain which she has portrayed so clearly here. I have always loved this self-portrait, entitled “The Broken Column” even long before I developed clear symptoms of fibro:
#SpineDamage #NerveDamage #FracturedVertebrae #DegenerativeDiscDisorder #HerniatedDisc
2. The damage done to my low back from getting hit by a semi truck. Now I feel like this when my back goes out, which is kind of a lot because of the addition of Spina Bifida Occulta and Joint Hypermobility Syndrome:
#HerniatedDisc #DegenerativeDiscDisease #Scoliosis #Lordosis #Osteoarthritis #EhlerDanlosSyndrome #JointHypermobilitySyndrome #SpinaBifidaOcculta
3. Nerve pain, just imagine those lines about an inch underneath your skin, until it’s basically in your bones:
#Neuropathy #NervePain #NerveDamage
4. This one reminds me so clearly of the one sided occipital migraines and trigeminal neuralgia which I am constantly dealing with:
#OccipitalNeuralgia #TrigeminalNeuralgia #OccipitalMigraines #TMJ
5. Sad but true. This is what yoga feels like now. I am always telling my boyfriend that it feels like my spine is trying to rip clean free of the rest of my body, just like this:
I’m not posting these for pity or for shock value, sometimes it helps me to have a visualization of my pain ,because it helps me to picture it disappearing while I meditate. Other times I just want to know I’m not alone. I’m sure I’m not the only one who feels a little bit validated when they see their chronic pain taken seriously. These artists take pain seriously, but they also managed to turn their pain into something creative. Using pain as inspiration for making beautiful things or things that others will relate to is a huge goal of mine as a formerly creative person. Illness can’t have my creativity, and these honest portrayals of the agony of chronic pain help me remember that art and the freedom it gives us is such an integral part of healing. Time to start painting again!
Yesterday I had sciatic nerve pain in combination with whole-body sensory overload, no one could touch me without making me hurt even worse for the beginning of it, and it was so bad, so overwhelming and horrific that I went into shock for almost a half hour, shaking so hard my legs were just jumping around and my teeth were clacking together. My lips and fingers turned blue. My boyfriend offered to take me to the emergency room, which never comes out of his mouth. I think it’s pretty rare when my illness is so visible that it’s not just me talking about how I feel, or moving slowly or with a limp.
I wanted to. I wanted to get wheeled into the ER, but then the thought of having to fight with some gruff doctor who may or may not eventually agree to give me something that may or may not mitigate the pain a little…. I changed my mind. Instead I opted to stay home with my herbal remedies and what prescriptions I have saved from years past and just tough it out. I couldn’t walk without screaming, but I knew I couldn’t stay put forever or I would really lock up. When the first shock-wave struck I actually stayed in one place for four hours because I was alone in the house and afraid of falling. As soon as my boyfriend made it home I made an effort to move as much as possible, screaming and all. Sometimes you gotta make noise and just do what you gotta do.
There were some scary moments, but this is a definite victory. I calmly told everyone around me to let me cry and be miserable and I could probably get through the level 10 pain to something I can manage, like a 9. They listened to me and watched me writhing around and I think they thought I would recant my previous statement and want to go to the ER eventually, but I did not cave!
September is Chronic Pain Awareness Month
I hear it echoed over and over again by my friends, my self, and chronic illness writers across the web. The hardest part is getting those around you to understand what chronic pain takes away, not only from your physical capabilities, but cognitive abilities, focus, social functions and so many other things, too many to list. What the general public and even caretakers and close friends may not know is that chronic pain changes everything, from taking a shower to driving to thinking clearly in a meeting to not cutting a major artery in a surgery. Some days, I feel lucky to have done the dishes even if I did nothing else that day. Sometimes just surviving is overwhelming. If I can do nothing else, on my days when I am resigned to a chair or the couch, I want to help spread the word about the real bravery of the men and women who wake up each and every morning in unending, unforgiving pain. In addition, I desire so much to ease the transition for newly diagnosed patients with chronic illness through education, advocacy, and compassion. As a community of chronic pain patients one of the most pressing issues is to get a realistic, non-romanticized version out to the public of what it is like to be ill and not be able to rely on your body, or even you brain, depending on the day.
I am the same person I was before my illnesses took hold, but I am also different. I speak differently, and I speak about different things. I spend most of my day distracted by pain, and looking for a distraction from it. I am sure that the people around me no longer believe all the crazy things that are happening within my body can possibly be happening to one person, all in one month, and that is part of the stigma of chronic illness. I too didn’t understand what it meant to look fine on the outside but deal with so many problems within your body that even basic work was impossible. Five years ago, I would have pointed at someone like me and said “oh, she’s exaggerating, it can’t really be that much worse than my _____ (insert: back pain, flu, headaches, anxiety, arthritis, whiplash injury) and I worked though all of those things” but I was wrong. I was so terribly wrong that I guess life had to prove it to me in a pretty brutal way. How does that saying go? Judge not, less ye be judged?
I figured, especially because I was one of the judgmental voices, the harsh and unforgiving “them” who could never understand chronic illness, and now I understand all too well, maybe I should be one of the ones who helps shed some light on the many unseen and unspoken hurdles facing patients with a myriad of rare, invisible, incurable, and terminal illnesses. I’m honestly guilty of still trying to hold myself to standards that I cannot achieve with my illness in full force like it currently is. Hopefully in the midst of promoting acceptance and support from caregivers, relatives, friends, significant others, healthcare professionals, and the media, I can also sway some fellow spoonies to take it a little easier on themselves too. If you are dealing with daily pain that will not relent, try to gently remind yourself that you won’t gain any ground by ignoring your symptoms.
The road to being okay with your new life as someone living with chronic pain is paved with research, acceptance and acknowledgment of your symptoms. For those of you who are not in chronic pain, likewise, researching your loved one’s disease, then verbally showing acceptance and acknowledgment is the best gift you can give someone who is suffering. It is amazing what hearing the words “I believe you” can do for the soul. It is like being wrapped in a big soft blanket and having a hot cup of cocoa placed in your hands on a cold day.
Never forget that you own the right to tell your story as raw and honest as you feel comfortable with. You aren’t just doing yourself a favor by getting it out of your head and into writing, you are promoting awareness by removing the myth from your illness. Your pain may be invisible, but that does not make it any less real, any less scary, or any less debilitating than a visible injury. We spoonies all have a lot of people to prove wrong, from the 1/4 of primary care physicians who believe most of their chronic pain patients are faking, to emergency rooms that are ill-equipped to deal with chronic conditions, to unsupportive families who refuse to do their research, and of course general stigmas against pain patients that have existed for ages. These are all barriers to effective research, communication, and seeking out treatment. But they are obstacles that we as a group can overcome.
Raise your voices, tell your triumphs and your horror stories alike, others need to see what we go through on a daily basis and speaking out helps to break down those barriers and create road maps for understanding the whole of chronic illness, not just the symptoms, but the underlying causes and the body-wide effects created by living a life in constant pain. I know it is difficult, but only when we are not afraid to share what we are going through will we transform the silent suffering of people with invisible illnesses and chronic pain into a growing understanding that we too deserve to be treated with the dignity, respect and even admiration for what we deal with on a daily basis. It’s not just an idea, it’s a necessary change and we have the numbers, the intelligence, and the determination to make it happen.
Click on the thumbnail below to go to the larger version of my painting for Chronic Pain Awareness: