I try to keep my content positive, but you know, sometimes we just need to bitch about reality, since life continues to be so real and at times, really hard.
And since I’m writing about life in general – the good, the bad, and the ugly, today’s topic is My Shitty Health. Consider it a little vent sesh about struggling with chronic illness. So, really fun content, I know. But perhaps you struggle with health issues too? You are not alone, friend.
Friday night was my pumpkin-turned-carriage moment as a person with chronic illness. My husband treated me to my favorite fancy restaurant for a delicious dinner.. I had the energy to go, and the ability to EAT and digest, even (which sounds like a given, but is not for me.)
Toward the end of dinner, I started feeling puny, and by Saturday lunchtime, I was sick as a dog. My carriage turned pumpkin before I even had time to lose my glass slipper. Dadgum it, here we go again.
Apparently, I picked up a sinus / respiratory bug, and it’s kicking my booty. Part of my plethora health-related genetic mutations is that my immune system sucks.
And ANYTIME I’m functionally sick, my body responds to it with an attack of major inflammation, which causes my systemic pain to skyrocket. So I’m stuffy and coughing, and the coughing subluxes my ribs. This is no fun at ALL.
Also, I’m sad and disappointed. You see, we missed the John Crist comedy show last night, and we’ve I’ve had the tickets for MONTHS. It’s my birthday week (the 24th) so we had all kinds of fun stuff planned this weekend and week, none of which is happening now. And
I’m trying to be a good sport. I am grateful for all the blessings I so richly enjoy in this life, and I take nothing for granted – not even digesting. I realize so many others are fighting so much worse with illness and injury. I get that.
Like anyone who battles chronic illness, I miss out on things. And by proxy, my husband misses out too. The worst occasion was the time I missed the wedding of a young lady you is like family to me. I just couldn’t rally, and it made me so sad.
So as I lay here, salty about being ill, I’m going to what my therapist recommends, which is baby myself. “You know to expect pain flares and ‘down’ days,” she advises. “So plan on taking a self-care day when that happens.”
In other words, don’t fight it on those days. Lean into it as you would in taking care of anyone else. Comfy blankets, streaming movies, and writing. (Always with the writing, because it’s the only way I can get out of my own head.)
So, I eat nourishing food, sleep extra, and for Lord’s sake, let go. Letting go of unrealistic expectations is half the battle, and anger at my own body doesn’t help – it is doing the best that it can. .
If you struggle too, this is your reminder to take care of yourself during the bad days as you would take care of the people you love. Because you and I are worth the effort, even as the pain of hard days cohabits with the gratitude for good days.
When your carriage turns into a pumpkin, well…make pumpkin pie, I guess.
May is Ehlers Danlos Awareness Month, so I’m … um… spreading awareness. I saw a meme the other day that referred to it as “Bendy B*tch Disease” and I laughed so hard. BBD! But there is a whole lot about living with this condition that isn’t funny in the least.
A few of my friends have had questions recently, and I thought I’d use this platform to educate about Ehlers Danlos Syndrome and its related comorbidities. And y’all can ask me anything, I don’t mind answering questions! (Please keep in mind, this article addresses my own experience with EDS, and it can manifest differently among patients. Please consult your doctor for correct diagnosis and treatment option pertaining to you as an individual.)
Can you develop the syndrome over time?
No. Most of us suffered for years – sometimes decades – without a correct diagnosis because symptoms can seem obscure. And the medical community tends to think of horses when they hear “hoofbeats” (i.e. causes of injuries and illness,) and not zebras. Which is why the “mascot” for this condition is the zebra. It is 100% genetic. You cannot ‘catch’ it, develop it (although you can develop more obvious symptoms,) or “cause” it in any way, shape, or form. We are born with it. Genetic and clinical testing is often required for accurate diagnosis (do a search for the “Beighton Score” for further explanation.)
Can holistic approaches cure Ehlers Danlos Syndrome?
No. Although I do love holistic remedies and believe in their helpfulness in many ways (and I try to treat my overall health with eating clean when I can,) the truth is that I require many Rx medications every day. Each one has proven itself necessary, as I have tried at different times to stop most of them at one time or another, with disastrous, sometimes life-threatening consequences. So, I’m a big fan of natural medicine, but a bigger fan of survival. I hate that Big Pharma is a big part of that survival, but it is what it is. Part of my constatation of illnesses show up in that my body cannot do the things your body does automatically. My unmedicated body cannot control my blood pressure, temperature regulation, heart rate, or digestion – as I have gastroparesis, which is paralysis of the entire digestive tract, which is why I’ve lost 50 pounds in a short span of time, and why I’m malnourished (which causes even more symptoms and pain. it’s an awful cycle.)
What do you use for pain management?
Ice packs. Voltron. Tiger Balm. And tears. Oftentimes, the course of pain management for my condition and the severity of it, can be opioids. That’s how brutal the pain can be. I have seen pain management doctors, who put me on CBD oil because other than opiods, there are not too many meds I can add to my already-vast Rx repitoire without complicated side effects. I’m glad CBD works so well for some folks, but it may have well been snake oil for me. I cannot (rather, will not) take opioids, as I am a recovering alcoholic with 22 years sobriety and taking opioids would be extremely risky for me, addiction-wise. I do take cannabis gummies – and honestly, because I take the totally legal kind, they help but only so much. I long for the day cannabis is legalized so I can achieve better pain relief. Truly, people, it’s medicine God himself planted in the dern ground. Its medicinal properties are scientifically proven. So, legalize in it my state already. Okay, off my soapbox.
How come you dislocate and subluxate your joints all the time? Because I’m a super-athlete. JUST KIDDING! Because completing everyday tasks can be like running a triathlon for a healthy person. We tire easily. Subluxations are just partial dislocations of joints – mild or incomplete dislocations. And they happen all the time. Every day, something on my body subluxes; it’s just part of my reality. Our ribs can sublux due to coughing or sneezing. Barfing is the worst for subluxing ribs. My left thumb shifts out of joint at least twice a day. Braces – elbow, wrist, knee, ankle – you name it – are a part of our everyday existence. Every morning I take a “pain inventory” to help me know what needs to be braced for the day. I have a vast collection of braces for my joints and it’s a rare day I don’t need any at all. Speaking of EDS stability paraphernalia….
Why do you use a cane sometimes and other times, you do not? Because some days we “flare” worse than others, and also because many of us also have Postural orthostatic tachycardia syndrome (POTS), which causes dizziness, and a cane is a good stability aide on unstable days. There are days I don’t use my cane at all, and there are days I can’t walk to the kitchen without it. This will, unfortunately, worsen as I get older, and as my joints become less stable as well. That’s the bugger about this condition – we will not improve as our bodies age. Wear and tear on the joints from everyday life will become more prominent. (PS: It’s an unfair assessment to pass judgement on someone who uses a mobility aide only on “bad” days. One day, we need help getting around, and another, we can walk upright unaided.)
Have you tried yoga?
*Rubs temples*. Yes, I have. Ended up subluxing my hip. Different patients have different opinions on yoga- from what I’ve experienced and been told, is terrible for people with my type of EDS (Hypermobility Type III) because our joints are already ridiculously loose and stretchy. Bending them more in those positions only increased my pain and caused damage. Our joints are too lax already.
What is a “flare” and why are some days worse than others?
According to that Big ‘Ol Brain in the Sky – Google – it is explained thus: “The term “flare” can mean several things, but could be increased pain, GI distress, MCAS reactions, dislocations, subluxations, cardiovascular challenges, dysautonomia symptoms, insomnia, fatigue, brain fog, a sense of being “wiggly” or dangerously clumsy and more.” And easier way to think of it that my dashboard lights go off at once. ALL SYSTEMS are “off.” Flares can result from being sick (with a virus or other, and that’s constant, as I also have a degree of immune dysfunction,) being over-tired, pushing past my limits, or not sleeping, eating gluten, and about 50 other possibilities.. Flares are miserable beyond words, and you feel like you will never feel decent again. EVERY time, so severe flares are also pretty good at triggering depression. On our “good” days, it is natural to want to do ALLTHETHINGS, because we never know when our pain will be manageable again. So, we push past what we should, often resulting in – you guessed it – another flare. Supremely frustrating.
Have you consider EDS may be caused by childhood trauma?
I believe the mind, body, soul connection is imperative to consider. But to me, this, to me, is an old spinoff on the question: “Is it all in your head?” Although I do have significant childhood trauma, Ehlers Danlos has zero to do with it – other than the fact that I was constantly injuring myself doing the simplest things as a child and was considered “clumsy,” not having had any idea what was wrong with me. Also, the emotional days can contribute to overall flares, just like any other trigger. I have – thank God – worked on my trauma through several years of therapy, and I will probably go to therapy for the rest of my life. I will goto therapy forever -not because of the trauma – but because my therapist gives me tools to deal with the fact that I am losing mobility slowly, must deal with awful pain on the regular, and not being able to do the things you want/need is depressing, frankly. My therapist imbues me with hope, coping skills, and encouragement. I am not going to get “better,” (barring any unforeseen miraculous new treatments which may come along due to increased research, which is why I am spreading awareness. Here’s hoping!)
In conclusion, thank you for asking questions, my friends. I will answer them as best I can! Ehlers Danlos Syndrome is a spectrum just as many conditions present. Some people with it lead normal lives and just experience a little pain here and there. But for some of us, it’s debilitating and progressive. And we need the compassion and understanding to thrive through chronic illness and pain.
What good is getting an accurate diagnosis, if there’s no cure? A woman I follow on Social media posed this question and it got me thinking. She also has Ehlers Danlos Syndrome.
Knowledge is power, and it explained a whole lifetime of things.
Every day of second grade, I had to spend afternoons with a tutor after school because I held my pencil “wrong.” I physically cannot hold it that way. My fingers wouldn’t work, still don’t.
I’ve had bad migraines all my life.
I cut myself constantly with knives in the kitchen, even as a kid. I’ve managed to cut myself with safety scissors.
Buttons are the devil.
Physical Education class was a nightmare. I kept getting injured doing the simplest things, and “sat out” many times, resulting “F’s” in cthat class. Turned ankles. Sprains. PE teachers are MERCILESS. I was fussed at for “not trying.” Or worse – “faking.” Id love to look them up and let them know what’s up.
I thought everyone got dizzy tying their shoes, every time.
Having a super shitty immune function, was sick constantly. Wouldn’t find out until adulthood I have immune deficiency.
I was in some degree of pain at all times – every joint. As far back as I can remember. Of course as the laxity in my joints increases with age, the pain gets worse.
My ankles are so weak, I broke my right one in two places from standing getting up to pee in thre middle of the night. Just torqued it wrong. I was so accustomed to pain, I walked on it for 11 days anyway before going to the doctor.
I always required more anesthesia, which is a redhead thing and an EDS thing.
There was a reason my body cannot do autonomic functions adequately – tempature regulation, blood pressure – just can’t handle it. The fluctuations that were such a mystery all my life make sense.
The hyper-mobility made for some good “party tricks” – contortionist stuff with knees and elbows, etc., but I had no idea it was a medical issue ad a young adult.
Knowing what was wrong – even though there is no cure and no really effective treatment – was momentous.
It means the difference between managing symptoms with some chance of alleviating some of the severity. It means the enlightenment of your own body, after feeling like you were made defectively.
SERVER: “Welcome to the Ehlers Danlos Syndrome Cafe. My name is Susan and I’ll be taking care of you today. Have you been here before?”
ME: “Hi, Susan. Yes. I come here every single day. I’ll have the Low-Pain Day, with and some type of actual Energy as my side. Please leave off the Crushing Exhaustion and add a side of Gratitude.”
SERVER: “Well, that’s great you want to try the Gratitude! It’s my personal favorite. Hold up;.let me check with the kitchen. * Checks with kitchen. * “Sorry, we sold out of that a while back.”
ME: “Fine. Let’s see…I’ll take some Good Rest as an appetizer…”
SERVER: “We’re out…supply chain demands and whatnot.”
ME: “Right. Supply chain issues.”
SERVER: Let me tell you about our specials! We have plenty of Fresh Pain – just got it in! It comes topped with some Sauce of Fustration, over a bed of WTF NOT THIS AGAIN.”
ME: “Um, no thank you?”
SERVER: “Our Shoulder Sh*t Show entree is really a main event. It includes an ingredient so spicy, you’ll want to pull your arms completely out of the sockets and jump into an active volcano. Holy rotator cuff, Batman!”
ME: “Um, I kind of already do want to jump into an active volcano,…”
SERVER: “Or if you’d like the milder dish, order the T-Rex Special will make you function all day long with tiny little T-Rex arms because your elbows and wrists are hyperextending. Oh, and it’s served with a nice Thumb Dislocation Reduction.”
ME: “This restaurant sucks.”
SERVER: “We also have nice Gravel Knee Supreme as well, a slightly piquant exquisite pain with every step you take, and a knee joint that bends so far backward, you’ll look like the Rubber Band Man, and sounds like 1000 Hummers driving down a gravel road.”
ME: “Hard pass.”
SERVER: “Our last special is a SAMPLER! Shoulder, Knee, AND Hip Subluxations, so that whether you’re standing or sitting (or walking or laying down,) there is 100% guarantee, it ‘gon HURT like a MoFo.”.
ME: “Lick Rust.”
SERVER: “WHOA! No need to get snappy.”
ME: “Listen… all I really want to do is have a good day. I guess I’ll just take an order of Wasting the Whole Day in Bed Like the Granddad in Willie Wonka.”
SERVER: “Do you want guilt sprinkles?”
ME: “What??”
SERVER: “Do you want to feel guilty for not getting out of bed all day?”
ME: “No, not particularly.”
SERVER: “Guilt sprinkles it is! You also get two sides.”
ME: “Okay well then, for my first side, NO Barfing today. And don’t bring out the Slipped Ribs from throwing up. I don’t even want them on a separate plate. I’ve had it every day this week.”
SERVER: “We are outta ‘Not Barfing. Maybe tomorrow.”
ME: “Can I just order a Decent ATTITUDE, then?”
SERVER: “We don’t serve that here. You have to bring your own.…the attitude.”
ME: “Eat glass.”
SERVER: “just for being so sassy, how ‘bout a Blinding Migraine? It’s a 2-fer on sale this week.”
ME: “Kindly bugger off.”
SERVER: “We have a nice Vintage Dizzy Spell? You usually have at least one every day, and you can get it to go.”
ME: “Get bent. Can I cancel my order altogether?”
SERVER: “Oof I’m sorry, it’s already been put in at the kitchen.”
ME: “When did that happen? I just got here!”
SERVER: “Looks like … let me see….January 24, 1969.”
ME: “Doesn’t sound like you use very fresh ingredients…”
SERVER: “Yeah, we only use the stalest ingredients for maximum creakiness, immune function overreaction, and gourmet pain. We have the largest variety of pain sensations in all the world!”
ME: “How proud you must be.”
SERVER: “Will we be chasing our sorrows, er…um, I mean MEAL with a beverage today? Perhaps a margarita?”
ME: * blinks incredulously * “I’m an alcoholic in recovery, so no thanks.”
SERVER: “Wow, that’s unfortunate. A nice Chardonnay would probably ease the pain,”
ME: “Get thee behind me Satan”
SERVER: “It’s SUSAN.”
Me: “Whatever. Just bring me some medical cannabis and a Topo Chico, please.”
SERVER: “How about a nice anxiety spiral for dessert?’
When my second daughter was born, I wore a very lightweight sea foam green bathrobe at the hospital. I think I had bought it from Walmart. It had a soft lace around the edges, which were soothing for her to feel when she was nervous. It was inherently nothing special, but she glommed onto it, and it quickly became her security blanket. We called it “Lovey.”
She still has Lovey. She is 30 years old now, and throughout the years, Lovey is about the only thing that conveyed in all of her moves. I believe she still might sleep with it.
Much like the Velveteen Rabbit, Lovey became a shred of a thing. It had been snuggled, cried on, donned as a costume, barfed on, and worn as a turban, her whole life. It has shrunk from tumbles in the dryer. Like the Velveteen Rabbit of lore, Lovey became puny with wear, shredded by love.
As a chronic illness and pain patient, I feel a little like Lovey these days. I don’t feel identifiable as who I issued to be.
When I leave this world, I will leave it with my body in shreds. My hope is to be softer than when I came, ego shrunk from tumbles. My purpose only to love and be loved.
I feel shredded lately. My pain levels have been monumental. It’s almost more than I can bear, to be honest.
The trick is, I think, to realize that sickness is not the only thing shredding me. My joints – all 360 of them in the human body – are essentially being held together with silly putty instead of Gorilla Glue. My Earth Suit makes faulty collagen. Everything hurts, almost all the time.
When I feel leveled by the pain, I need to be mindful that illness isn’t my only leveler. I’m also being loved, and I know that. I’m very grateful.
All of us Loveys – tattered, worn, and threadbare – have to remember that we don’t lose our value as we experience the transition from being something the world recognizes and can easily determine the function of, to something whose purpose might not look as obvious.
See, my daughter’s lovey had only become more valuable to her. The fact that an old robe can find new life as something completely different is oddly comforting. It meant the difference between being an article of mom’s clothing, and becoming a beloved “friend.” It meant the difference between the Goodwill basket, and an honored place on her pillow.
So maybe I’m not breaking. Maybe I’m becoming. And in this season of great difficulty, I choose to believe the latter. I have to hold on to hope.
It’s (still) Ehlers Danlos Awareness Month. I thought I would share some interesting things from growing up with it undiagnosed, in letter format, from the prospective of what I know now:
Dear Kindergarten-2nd grade teachers: We have been trying to correct the way I hold my pencil for a couple of years now. There’s nothing wrong with my handwriting – I just hold my pencil with pretzel fingers overlapped because that’s what feels natural and comfortable. Please stop trying to make “holding the pencil correctly” happen. It’s never gonna happen.
Dear OBs: There’s a reason why I keep going into preterm labor. It’s called “incompetent cervix” and is pretty much what it sounds like. I don’t have enough collagen to stabilize my womb. My babies will come FAST, and with life-threatening complications for me and them. Both of my babies had to be resuscitated at birth and I nearly died, both times. Knowing what was wrong with my body may have helped me have safer pregnancies.
Dear PE Teachers (every single last one of you…): I’m not faking the sprains and dislocations. I’m not sure how one would “fake” a dislocation, as you can clearly see my shoulder rolled in an awkward, unnatural position. Nothing like being forced to run the mile on the track when your hip has subluxed out of place! And also….When my mom writes me notes excusing me from PE, it’s because I get injured incredibly easy and I AM IN PAIN. Not “owie” pain….No. We are talking grown-ass man-would-cry PAIN. No, I don’t care about your class, because I dread EVERY morning having to participate in things that hurt me, and hurt me badly. I admit to having a bit of a disdain for PE teachers. Between getting yelled at because of injuries and given “F’s” in class, I’m not a fan.
Dear Fitness People: It’s not normal for my heart-rate to go up to 200 on moderate exercise. Being pushed to work harder and go faster is a recipe for disaster. I pass out. Everyone cannot do what you can do.
Dear Childhood friends: I cannot hold my fork like you do – it’s not bad manners, I promise. It’s the only way I can keep a grip on my fork.
Dear Healthcare workers: Just because you are not familiar with a syndrome or disease doesn’t mean it doesn’t exist or isn’t profound. That is why me – and those like me – are so determined to spread awareness. People don’t know. People need to know.
Dear “Every Doctor I saw before I was 40”: Please do not hastily slap the “fibromyalgia” label on every sick person. While it is a very real thing, other illnesses can masquerade for it – conditions that require treatments. It took me almost 20 years to get a correct diagnosis.
EVERY SINGLE THING I experienced health-wise my whole life makes SENSE since the diagnosis. By the time I met Bob, I was at the END of my rope. I wasn’t sure what was happening to me, and half the doctors insinuated I was just crazy, which adds insult to injury. Please, doctors…PLEASE. Listen to your patients and pay attention to the symptoms.
If I still had no idea what was wrong with me, I don’t know where I’d be, ya’ll.
Because after decades of your shit dislocating and experiencing debilitating fatigue and repeated injuries, stroke-level blood pressure, a crappy immune system that refuses to cooperate consistently, horrible migraines that take you down for days…..you lose hope.
I was absolutely losing hope, and honestly, it made me want to drink. I only came out of this thing with sobriety intact because of the love of my good husband and the care of an incredible doctor.
At least I know what’s happening when I sublux or dislocate, or experience high pain. I am so fortunate to know, so that I know how to best deal with my chronic illness.
I wish the same for every person with a chronic illness.
Musings of a Gypsy Soul 