Hellooooo there, everybody 😅 TLDR; I'm going to take a few weeks off, but never fear! I pre-recorded a lot of clips that are already scheduled to post. You'll still be getting regular content releases while I'm taking some time to recoup because I am nothing if not a planner💖 I know it's a big ask (especially because it's one I make so often), but pretty please be patient and understanding about the spotty, inconsistent replies to DMs and comments.
For those of you interested in what's going on to cause the temporary hiatus, keep reading because **oh my **_GODDDDDDDDDDDDDDDDDDDD_ do I need to vent 🥹💙
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Sometimes I start doing well for long enough that I like to gaslight myself into thinking my doctors were wrong.
After a few weeks of relatively normal activity without any issues, all the joint pain, dislocations, immune dysfunction, and heart issues start to feel like a distant memory or a bad fever dream. When enough time has passed since the last time my hip popped out of socket just from standing at the kitchen sink, or the last time my BP dropped to "please go to the ER" levels just because I ate a normal portion of food, I start to convince myself that maybe I don't have heart problems or a connective tissue disorder after all.
Obviously the heaps of abnormal labs were some sort of strange error, and my specialists are all just alarmists trying to wrap me in bubble wrap simply because I'm petite. I get it. It's easy to feel overly protective. Suddenly spending hours every single day carefully following my medical protocols and treating myself like a delicate little flower seems like an unnecessary waste of time.
What's the opposite of hypochondria? I'm sure whatever that is will be noted into my chart next, because I just cannot seem to admit to myself that I am chronically ill despite the endless piles of objective proof right in my face...
When things start going a little too well, I get it in my head that I could probably go about my life normally without all of these accommodations and precautions... At first, things go wonderfully. I'm accomplishing a lot and wondering how and why I ever felt like I struggled before. Since I feel fine, it's reinforced for me even further that it was all in my head and nothing is actually wrong. Days later my entire world comes crashing down and I'm rudely reminded of why there are so many rules governing my day to day. It becoming glaringly obvious that it's not in my head after all, and then I have to deal with the consequences of cosplaying as an able-bodied person for a few days. Can you really blame me, though?
My entire life feels carefully structured around keeping my body in check. It's the world's worst-paying job and comes with a lot of unpaid overtime. I can't grocery shop on the same day as any other chore or errand. I'm only allowed to cook two or three times a week (and I'd better make extra portions to freeze so I don't go hungry on the days I can barely move). I'm only allowed to do one load of laundry on a given day. That one is extra tough to abide by when I've been feeling too poorly to keep up with the laundry and it's piled up into a mound that's begun to resemble Mt. Everest... My meals have to be carefully paced. Eat too much at once and get an energy crash. Wait too long to eat and get an energy crash. I'm required to drink so much water and have such a high sodium intake that the ocean itself is probably impressed... I can't spend more than an hour or two on my laptop at once. I can't get too much sun or let myself overheat. Long walks are strictly forbidden, and for the love of god, don't pace when speaking on the phone. All that pivoting wrecks my ankles, knees, and hips. Sit the fuck down, Dolly.
It's exhausting constantly weighing what you do and don't have enough spoons for. Sometimes you just want to pretend the cutlery drawer is full...
I was finally getting off bedrest. My ankle and hands were feeling better. My BP was back up to a more normal range again (95ish/60ish). In returning to a more normal level of activity I have had to confront the devastating realization that I'm not just dealing with a couple of repetitive use injuries: I'm currently in a full scale joint laxity flare up for the first time in about 4 months... Everything is just begging to slip out of place.
That was probably the longest I've gone without a flare up in years. I feel guilty that I'm not more grateful for how long this stretch of being relatively comfortable was. Instead, I'm a bit resentful that my body waited to launch this attack until I was just starting to invest in the idea that I'd turned a corner. I almost started to believe that the days of flare ups were behind me for good. Surely being so ungrateful is going to come with a bit of bad karma, so maybe I should try and let go of all this resentment (and quite frankly fear) about the whole situation... It could always be worse, after all.
What does a flare up look like, you ask? Complete and total dysfunction. It would be faster to list the joints that are behaving than the ones that aren't. Ready?
My right elbow. That's it.
Even then, the nerves running through it are tight enough that fully extending my arm makes my fingers feel like they're gliding through water. As someone who doesn't really swim, it's bizarre to feel like I'm in a pool while on dry land...
Now to list the joints that are giving me problems, because ignoring all of this and pretending it isn't happening obviously isn't doing the trick, so maybe whining about it for a moment will...
My jaw muscles are so tight that I'm temporarily and spontaneously losing my hearing and vision. I'm getting tension headaches that sometimes last days, yet the joint itself is so lax that I keep pulling it out of place while simply trying to chew. Have you ever had your jaw become too fatigued to finish a meal? It really makes eating so unenjoyable. I've always had a fascination with dichotomy, but this bizarre balance of "too tight, yet simultaneously too loose" is certainly not what I had in mind.
My neck has the structural integrity of jello and my traps are working overtime trying to hold everything in place. My other muscles have apparently abandoned their post. Thanks to the overcompensation of my traps, my shoulders have become my new pair of earmuffs... Then I have the audacity to wonder why I'm having so much upper back and neck pain. My shoulders are attempting to divorce my torso with normal movements. An outstretched arm suddenly produces a dull, painful clunk and sharp, electrical nerve pain radiating down to my fingertips.
Speaking of elbows, my left is so tight I can't fully extend my arm without getting a burning sensation in my middle finger. Keep it there for too long and suddenly my whole forearm tingles like it's covered in angry fire ants. The loud pop it produces while doing pullups can surely be heard down the street, but at least there's a small amount of relief after scaring every wild bird within a one mile radius with the noise... It loosens up for a short while and I get my full range of motion back for a moment, just for it to slip away a few hours later.
My wrists feel wrong; like an old dresser drawer that's just slightly off the track... Clicking and grinding with each movement. The tendons running through my first two knuckles keep slipping and producing a flurry of electricity and numbness. My pinky fingers are getting stuck in a hooked position, yet ironically hand spasms keep prying my grip open, causing me to spontaneously fling my coffee cup, plate, or utensils onto the floor. After unintentionally flipping my entire dinner onto the floor on the way to the table not once, but twice, I've really proven just how good I am at emotionally regulating myself most of the time... Especially considering both instances happened in moments when I hardly had the energy to eat in the first place.
My collarbones are trying to inch their way up to the ceiling and feel like they're grinding against other structures in the process. My ribs can't be bothered to stay put. They're overlapping each other incorrectly like a tangled set of vertical blinds, pinching off nerves and robbing me of the ability to take a full breath.
My hips keep randomly slipping and nearly causing me to fall. Even my tailbone feels like it's out of place. My knees take every opportunity to dramatically drift off to the sides. Don't even get me started on the tendons and joints in my ankles and feet. I've been waking up with numb toes that feel like they're on fire the moment they start to come back online. They drag against the floor and I stub them over and over again as I stumble around trying to wake them up. If I opt to simply sit instead, my spine feels like it's one giant papercut being soaked in rubbing alcohol. The burning is intense and relentless.
Why don't you just take some ibuprofen?
Well, you see, dear reader - I'm strictly forbidden. Back when I worked a desk job I took a steady dose of ibuprofen 800 until it finally damaged my stomach. To quote my rheumatologist, "Besides, the pain is the only thing that seems to make [me] slow down and rest."
As if all this weren't enough, my immune system has joined the party. I guess when every joint is in the midst of a mutiny, your immune system goes into a panic trying to reel it all in... Unfortunately my immune system isn't in charge of my joints, so all of its efforts are futile. I sure am red from all the histamine it's been dumping into my system, though, so if the goal was to make me look sunburned despite keeping my pale ass inside I'd say that's been well accomplished. I have an eczema flare up on my face and hands, plus random transient rashes. I'm getting waves of feeling flu-like and feverish because of how generally irritated my entire body is. At least the pain hasn't quite reached the level where I develop an actual fever.
Before you tell me "that sounds autoimmune", I know it does. hEDS symptoms do a terrifyingly good job of mimicking autoimmune disorders. Thankfully I've had a full autoimmune panel run, and while it clearly showed immune dyfunction, there were no antibodies for any specific autoimmune disorder. This is "just" hEDS according to my labs. Immune flares are simply par for the course.
Allowing myself to decondition comes with its own set of issues. Muscle mass is what keeps my joints stable, so at a certain point bed rest becomes counterproductive and risky even if my joints haven't calmed down as much as we'd hoped. To help prevent that, I was going to get back to some normal, gentle activity (like answering DMs, grocery shopping, and other light errands with plenty of breaks to rest in between). Besides, it wasn't like I've had much of a choice. I ran out of the meals that "past me" lovingly makes and freezes ahead of time for the "future me" that can't peel herself away from the mattress for long enough to cook a meal. Future me is always so grateful and relieved. Past me's efforts recently ran dry, though. My cupboards were pretty bare, I'd run out of clean laundry, and just needed to take care of some things...
Then my clumsy ass slipped...
I should've seen that coming, honestly. I'm always at the highest risk of falls when I'm having extra joint instability. At least this time I fell in my living room instead of the shower. During the fall, I went into a very quick lunge and twisted to my left with my left arm extended. Thankfully I didn't hit my ribcage or upper body, but I did manage to smash my right knee into the floor and I definitely dislocated a rib and strained my lower abdominal muscles with that sudden twist. Even the shallowest breath was creating a sharp pain reminiscent of my old SVT attacks before that was surgically corrected. Cue me fully coming undone emotionally. I had been coping with everything relatively well until that final straw. Now I'm just angry and I've resigned myself to getting some more fucking rest, I suppose...
Thankfully my trainer called me to walk me through some movements I could do at home to help get the rib into a better position. It still hurts to breathe normally because it's not quite back into place yet, but at least I can take a slow, controlled breath with only a tolerable level of discomfort. For those of you curious, I've had more than one specialist tell me my pain tolerance scares them.
I've been told to keep doing certain movements every couple of hours to coax this rib back into place, and whatever isn't fixed tonight we'll be addressing in tomorrow's PT session. Cross your fingers for me it isn't so out of place it takes multiple sessions to fix. We can usually get a dislocated rib back into place within the hour, but a couple of times it's been over a week of trying pretty much round the clock to get a rib back where it's supposed to be.
Writing has been a decent distraction from the pain despite the fact that it's irritating the tendons in my hands. Obviously if we can't get this resolved tomorrow, it will be time for me to pull out my most effective coping technique: getting yet another cartilage piercing (I currently have 8 and have plans for at least 5 more...) and a full body wax. That's the sort of pain that ironically helps reset my nervous system which gives me a couple hours of relief.
I wish I knew what triggered the sudden extra joint laxity. To me it seems completely random and nearly unrelated to whether or not I've been following my medical protocols. That extra laxity and instability lasts anywhere from a few days to a few months. Not knowing whether it's going to be a short or long term problem drives me insane and makes me feel like I can't trust my own body. Sometimes as an extra mind fuck, a couple of good days come around to lull me into a false sense of security. I'll think the flare up is behind me and even announce I'm "getting back into the swing of things and circling back to DMs" just to have an accident like I did tonight. If I manage to avoid disaster, sudden joint pain may still decide to hit me like a freight train a day or two later. I'd like to get off of the rollercoaster now, please.
Obviously I'm right back in bed because the only way I can inhale that's somewhat comfortable is while laying face down.
The good news is that as I mentioned in a vlog a while ago, I've been hard at work creating a content vault in anticipation of this exact situation. Clips will still be released with some regularity... it's just going to be intensely difficult for me to get to my DMs and comments with any sort of consistency until I'm feeling better. At the moment I can't really say how long that's going to take. I'm going on 3 weeks or so of frequent joint dislocations and random BP drops. Tonight's injury is probably a direct result of the extra joint laxity I have going on right now. Usually when I get one, I tend to collect a few more before I have a chance to heal.
Good lord, do I wish I knew what the trigger for extra loosey goosey joints was. It seems to come out of absolutely nowhere with no real pattern. One day I'm feeling pretty sturdy and strong... the next I'm dislocating my thumb just by washing my hands...
**I'm so.
Incredibly.
Tired.**
Setting aside the current shit show... things will get better. I will eventually have another long stretch of being relatively comfortable and will have the privilege of repeating this goofy little pattern yet again. I will keep building muscle, and these joint laxity flare ups and joint pain flare ups (which, strangely, don't always perfectly coincide) will become more and more infrequent.
Maybe one day when I pretend the cutlery drawer is full of spoons, it actually will be.