#ehlersdanlossyndrom — Public Fediverse posts

Uuh, das wird wieder ein Mount Bluterguß an meinem Arm. Ich weiß ja, dass ich eine Bindegewebsschwäche habe, aber muss das immer so dick werden? Grummel.

Ich frage mich auch, ob dem Personal in Praxen klar ist, dass es sich wie ein Vorwurf anhört, wenn man sich über rollende Venen oder tiefsitzende Rippen bei mir beschwert. Moment, ich sage meinem Körper schnell, dass er sich benehmen soll.

#chronischKrank #EhlersDanlosSyndrom

https://www.europesays.com/at/138842/ Seltene Krankheit Ehlers-Danlos-Syndrom: Graz setzt ein Zeichen  – Stadtportal der Landeshauptstadt Graz #AT #Austria #beleuchtet #Betroffene #Bindegewebsschwäche #EhlersDanlosCommunityAustria #EhlersDanlosSyndrom #gemeinnützig #GenetischBedingt #Gesundheit #Graz #Health #LightItUp #Orange #Österreich #PortalDerStadtGraz #Selbsthilfeverein #SelteneKrankheit #StadtGraz #Symposium #Uhrturm #Wahrzeichen

https://www.europesays.com/de/993263/ Seltene Krankheit Ehlers-Danlos-Syndrom: Graz setzt ein Zeichen  – Stadtportal der Landeshauptstadt Graz #beleuchtet #Betroffene #Bindegewebsschwäche #Deutschland #EhlersDanlosCommunityAustria #EhlersDanlosSyndrom #gemeinnützig #GenetischBedingt #Germany #Gesundheit #Graz #health+ #LightItUp #Orange #PortalDerStadtGraz #Selbsthilfeverein #SelteneKrankheit #StadtGraz #Symposium #Uhrturm #Wahrzeichen

https://www.europesays.com/at/138796/ Seltene Krankheit Ehlers-Danlos-Syndrom: Graz setzt ein Zeichen  – Stadtportal der Landeshauptstadt Graz #AT #Austria #beleuchtet #Betroffene #Bindegewebsschwäche #EhlersDanlosCommunityAustria #EhlersDanlosSyndrom #gemeinnützig #GenetischBedingt #Gesundheit #Graz #LightItUp #Orange #Österreich #PortalDerStadtGraz #Selbsthilfeverein #SelteneKrankheit #StadtGraz #Symposium #Uhrturm #Wahrzeichen

#zebrasofmastodon #ehlersdanlossyndrom #edsawareness #eds #invisibledisabilities

#crochet #chicken #chickensofmastodon #autism #ehlersdanlossyndrom

Am 28.2. Ist #TagDerSeltenenErkrankungen Durch den auf #SelteneErkrankungen aufmerksam gemacht werden soll. Ich habe das #EhlersDanlosSyndrom das auch unter die seltenen Erkrankungen fällt. Mein Weg zur Diagnose war -Wie bei vielen Betroffenen sehr lang- #RareDisease #RareDiseaseDay

#TruDoku – sehr bewegend 🥺

#KünstlicheErnährung über das Herz:
Annas Organe können nicht verdauen (13 Minuten)

Anna (24) lebt mit einem #Gendefekt, der ihre Verdauungsorgane lähmt. Essen ist bei ihr mit starken Schmerzen, Übelkeit und Krämpfen verbunden. Um überleben zu können, ernährt sich Anna über ihr Herz.

https://www.zdf.de/funk/tru-doku-12074/funk-annas-organe-koennen-nicht-verdauen---tru-doku-102.html

#EhlersDanlosSyndrom #Bindegewebsstörung

Body-Horror Barbie Blues

Day 6 of lolling around in bed like a laudanum-swilling wastrel in a Brontë novel.

My two cats are taking shifts by my side, the girl Esmerelda is particularly vocal about her concern or displeasure at my current state — I’m not sure which. Fat Calvin, my 17 lb Maine Coon, prefers to show his concern by aggressively sleeping for hours on end in the too-small (for his ponderous bulk) cat-bed a couple feet away.

Being an invalid (for lack of a more appropriate term — because it’s certainly not inaccurate, just a bit dramatic-sounding) has a set of stages, I’m discovering, much like the stages of grief; and I’ve spent a lot of time stuck in the “total lack of emotion, followed by explosive anger” phase. Rage is my comfort zone for dealing with the fact that, at age 54 (well, nearly), I am already circling the drain — at least in terms of having any semblance of a life. Getting pissed off is much better than the weeping that takes over when I let my guard down. I hate crying. I’m not a crier, never have been. If I’m crying, I’m losing my grip on things, which is not acceptable.

Before you say anything, I do in fact realize this isn’t healthy — that’s the Brain Cooties talking, up there. Prolonged emotionlessness followed by bursts of rage isn’t exactly healthy, I realize. Crying is a healthy response, because there’s an end to it. It’s like letting the air out of an over-filled balloon, or letting the pus out of an infected wound. It’s part of the grieving process. But, so is anger. Both of them are valid, and I can’t reject any of them.

Actually, anyone who’s familiar with first-hand knowledge of the stages of grief knows very well that it’s not a linear process — far from it. One can swing wildly between the different stages, like a lemur with an inner-ear imbalance. It isn’t progressive. It’s like that mangled knot of discarded phone-chargers you’ve been accumulating since 1998.

This is going to be a bit meandering, so strap in…

When you’ve got too much time on your hands, and haven’t left the house for anything besides endless doctor’s visits, the propensity to wallow in nostalgia of younger, healthier days lies in wait like a pit of quicksand in the centre of your mind — to be avoided at all costs. My usual way of dealing with these bouts of prolonged periods of being bedridden, when I’m not writing, or reading, is to watch a lot of serial programs on Netflix or Tubi or Hulu, etc; it allows me to be mindlessly entertained, which I need, desperately. Last year, when I was going through this, I found the entirety of the ubiquitous 90’s show, Northern Exposure streaming online, and when I finally got to the end of the 6 seasons, and watched the finale episode, I was in tears, because it was like watching that era of my life disintegrating all over again. I loved/still love that show. If I were able to transport myself into any fictional world, it would be the Magical Realism-laced town of Sisely, Alaska circa 1992.

I in fact spend an inordinate amount of time in fictional worlds, now, be it movies, books, TV series, or the ones I create in my own mind, then put down in writing. It’s the only option for someone who is too ill to go out into the Real World, anymore. Most frustrating of all is when I find myself in another writing slump, which is like my brain shutting down a major escape route. It’s maddening. But, I know myself well enough to trust it always comes back. And when it does, what better opportunity to use my extra time to finish those two novellas I’ve been working on since flip-phones were a thing? I’m feeling more and more the futility of an existence that is so limited — that there must be something redeeming about my situation, something worthwhile about my life. And writing is the only thing I can think of that justifies the space I take up. If I don’t pick it up again, it’s a travesty — because it’s the one thing I do well. I still have people who read the beginnings of these stories asking when I’m going to finish them. Well, now I can. On the bad days, I’ll allow myself enough pain medication to be functional, and finish the damn things, already.

It’s funny how just two years ago, terms like ableism would set my teeth on edge with its perceived (by me) preciousness — but now is the world I inhabit. Karma and Irony, meet Yours Truly. Because it’s something I’ve both internalized to a frightening degree, in the form of feeling as though I have to justify my existence now that I’m no longer entirely — or at least consistently — able-bodied, and feeling as though I need to somehow make people understand…understand what, though, exactly? I’ve been traversing this road to physical decline for a long time now, and I’m tired of that shit.

I remember about a year and a half ago, I was telling this guy — who was ineptly but undeniably trying to flirt with me — that I was in the market for an electric wheelchair for when I want/need to be away from home, so I can get around without the pain and fatigue that make such trips very difficult. His response was, “You don’t need that, you’re too young to make yourself look old with a wheelchair.” As if how I looked was the issue here. Because of that, and a few other choice — read, gross, sexist and ableist (there’s that pesky word!) remarks — I no longer talk to this person. And that’s how I have chosen to deal with such ignorance from this point forward. I owe nobody an explanation, and anyone who focuses on how using a mobility aid negatively impacts my “desirability” as a woman only gets one strike.

People can be pretty repugnant — and it was never more apparent to me when I had to use mobility aids full-time. It was bad enough when my condition was “invisible”, and the constant barrage of “but you don’t LOOK sick…” comments were enough to make me want to bash my — or their — head against a brick wall. But during the mobility aid period, it was so much worse. Then, I was shunted into the Permanently Fucked category, where most people didn’t even bother to invite me anywhere anymore. Because being physically compromised apparently makes a person invisible. Oh, I realize that I often COULDN’T make it out, that I cancelled plans because I was too sick to drag my carcass out of the bed; but when people stop even bothering to ask, it was like I didn’t exist anymore.

But I DID exist. And as misanthropic as I may be, even I needed social interaction, sometimes. I suppose people giving up on me was to be expected, though. Every single person I talk to in my chronic illness groups goes through this, and I’m not special. It didn’t help that I had moved out of the city for three years, and away from everyone — and can’t drink anymore because it makes me sick if I have more than one or two these days, and that maybe once every couple months. I suppose the irony is that I needed some new friends…but I didn’t go anywhere so I had no opportunity to make any.

Now, I’ve moved back to the city, and I’m surrounded by places to go, should I want to; but I still find myself staying home — of course, that’s currently because I am too broke to go out. But, physical pain has a lot to do with that, still. Because no matter where you go, there you are. You and your damned fucked up body.

I don’t know. I’m just complaining at this point. I’m probably depressed. Being physically in pain for protracted periods of time — being in physical pain — can trigger my Brain Cooties, aka my Bipolar illness. Which, for me, presents mostly as pretty heavy depression, peppered with periods of wild insomnia, crazed writing jags, and unusually social behavior, like contacting all my friends at weird, random hours and wanting to talk about ALL THE THINGS (hypomania) I usually don’t ever discuss because when I’m “normal”, I’m far TOO private and hermetic.

So, yeah — a joy to be around, me.

I’m probably far better company for my cats than I am for human beings. Sometimes I wish I could just turn into a cat — that way I could spend my days curled up with Calvin and Esmerelda, with nothing to worry about and no disappointments.

I keep wishing I could wake up and find I’ve left this human body behind, like a bad dream. Animals are better people than we are, anyway. And oftentimes, I’m pretty sick of humanity, of being human, and all that goes along with it. If I could just slip away from this body, and transform into a feline one, I’d do it in an instant. There isn’t much I’d miss, truly, about this existence…and my only job would be to be fed and loved by someone like me. Sounds perfect. Sounds like heaven.

I envy my cats. Because they don’t judge by appearances, or disabilities, but by what kind of person you are — how you treat them. Anything else is smoke and mirrors.

I realize I probably sound slightly bitter. But, I’m not one of those people who is going to use my illness and disability as a platform to shove bullshit Positivity at my readers, because that’s what you’re supposed to do, as an “influencer” on social media (I apparently had over a thousand followers on Instagram, and many of them read my blog, but I haven’t attended to that thing in months, so…) — that nonsense lie that chronically ill people are supposed to put up this pink fluffy unicorns dancing on rainbows facade, to show how Brave and Positive we are. Because, while I do my best to not be poisonously negative regarding my condition and how it affects my life, the cold and unembellished fact is, living with something like Ehlers Danlos Syndrome and depression is HARD. It’s exhausting, and it’s a daily struggle, in ways healthy people will never, ever understand. And in order to truly get through life without opening a vein out of sheer hopelessness and frustration, I have to acknowledge the days when I hate my body, my life, and the world.

Lying to myself and my readers about it is, in my opinion, far more dangerous — because I don’t know about you, but when I read a blog from someone with a serious chronic illness who is all aggressively sunshine and rainbows, all the time, it makes me feel like shit. Because it’s not realistic to deny that this is hard. It’s not helping anyone to act as though in order to be a “good sick person”, we have to paste on a smile and be uncomplaining as a stone. Fuck that. The only way I can survive this situation is to be real with myself, and face that sometimes, I don’t want to do this anymore. That I’m scrambling to figure out what to do about my future, about being not able to work, getting disability now that I’m no longer able to do so outside the home, about maybe eventually needing the damn cane again…about watching my friendships fall away one by one because I never go anywhere anymore. Worse, about maybe never getting laid again, because if I’m too sick to go out and maybe make new friends, I sure as Hell am too sick to do what it takes to meet someone decent enough that I’ll actually want to have sex with…and that is a depressing thought, indeed. Particularly since I have a well-documented track record of picking abusive, fucked-up, untreated Cluster-B type partners almost exclusively. That’s a whole other subject for discussion, and I’ve pretty much landed on the conclusion that I can’t do relationships, I’m permanently broken, so there’s that, and isn’t THAT a cheering thought? But I do miss sex, at least when I’m in the proper mood; it’s a great pain-reliever. But the whole hassle of dealing with my horrible choices in partners makes it problematic, at best. Dangerous at worst. I need a Coin-Operated Boy and/or Girl, like the Dresden Dolls song.

Talk about making your childhood trauma work for you…<–insert heavy sarcasm here

It’s a hard way to live. It doesn’t mean I want to die, but it requires strength and it requires the kind of mental and emotional toughness that takes years to achieve — and it never gets easier. You just get used to it. And it’s MORE THAN OK if I want to spew bile here on my blog in order to get it out of my system. Lance that boil before it infects my entire soul. And if you’re in the same boat, you should never apologize for doing the same. And it’s also OK if you get sick of healthy people spouting platitudes at you about how “everything will turn out for the best”, or “things always get better”. If that sort of shit makes you imagine using your eyes to laser them into a nothing but a red mist, you are not alone. If people think you should just shut up and smile — disappear like a good little convalescent, that’s on them, not you. I’ll scream into the void all I want.

And maybe, hopefully, someone will scream back.

Now, before you think I’m getting ready to off myself, or possibly hire a hooker, (Fred Garvin, Male Prostitute!), I AM getting help — it took literally MONTHS for it all to come together, and to find a proper social service agency, but I DID finally manage it, now that the Paterfamilias is done with his cancer treatment (for the most part), and his addict daughter is finally, legally out of here (a horrible situation which took a lot of my energy and cost me, health-wise, a lot); I finally have time now to focus on my own self, my mental and physical health, and April is going to be a month of getting all that taken care of; psychiatry, domestic violence cPTSD counseling, my teeth, primary care, paperwork, education, work from home possibilities, the whole goddamn 9 yards. It will take the whole of 2024 for things to all get sorted — to START to get sorted, but I’m on the path, and I’m hoping this year will end a Hell of a lot better than it started.

Really, it has no alternative — because if it got any worse, someone would have ended up dead or in prison, because my life is pretty much a Tom Waits song.

Dr. Blair P. Grub's great talk on autonomic dysfunction.

#POTS #Dysautonomie #EDS #EhlersDanlosSyndrom #Autoimmunity #Autoantikörper

https://www.youtube.com/watch?v=VJPzZ2G9tIY