Sunday, May 15, 2016

Just how much - educate yourselves.


#‎EDS , it's amazing how much "viciousness" this thing can be. This unfortunately affected, but really strong young woman from Ireland (in the link above) has it super rough - as some do. This is a global urgency, actually. It really is, health systems around the world, even places like scandinavia (which is supposed to be a much better run socialized healthcare) are abusing and neglecting zebras due to, truthfully, fearing us in the light of impending financial burden. This needs to be fix this too, economists must get involved - and as for countries without any healhthcare, socialized or anything - my heart breaks for EDSers over there. Brutal ..

Clinical EDS is harsh on all who deal with it, and some really get the brutal brunt, and at this level it can indeed be life threatening without medical intervention and aides to eat, walk, move, sometimes even breathe. On an "EDS" spectrum people like this girl are on the very severe end of the "HEDS and classical" type group.Thought she's not vascular type 4 per se, she's profoundly systemically ill. People like this are the ones who the medicals fail most - until it's too late, and then further fail, even once the alarm bells start sounding ie. the gastric systems can paralyze, chiari crushes brainstem, bladder and/or bowels atrophy, co-morbid metabolic and immune disorders hit, etc..

We are in desperate need of research, fundraising for stability- achieving and rehabilitation programs, financial re-allocation, societal awareness, etc...

It's no joke. I'm a couple notches before this girl, though I'm super tough, and like to present well. Apparently I'm an ENTP personality type. People don't see more than the half of it, but those closest to me certainly do. I've been fighting this for years in silence and alone, in justify-ably obsessive-compulsive, hyper vigilant adherence - and I was branded crazy for it, for awhile. (Like many EDSers are.) It was so maddeningly hurtful ...

Before I began beta blockers, which I cannot seem to live without, things like my compressed brain and straight, inflamed, severely tense neck caused a "surging." Maybe it was too much hormonal activity, but I don't know. It made it very hard to deal with trauma, albeit real trauma, causing somewhat of a bipolar affect on me. I was reactive, anxious, moody, and sometimes paranoid. I held in a lot of it for the sake of my kids, or at least in front of my kids but - we all know how toxic internalization and repression is too. So, I really did have mental health issues but, "they" were so brutal to me. There was no viewing me from an angle of compassion, and this, in addition to the mental health affects themselves, was agonizing..

Instead of compassion and querying as to why (this would involve listening to me - double whammy problem here is the whole "not listening to autistic people" issue) they judged me as being crazy - pathological and awful in character, instead of harshly affected (tormented, really) by real physical, situational and psychological stressors. 

This includes immense chronic pain, and non-stop, often physically and/or neurologically exerting responsibilities - well beyond my body's ability to handle it (I know get more help, to at least soften this, but I'm still all too often pushing my limits.) Today I still have PTSD psychologically, and I still get situationally depressed - it's almost inevitable, but thank god for beta blockers - at least for now until a better solution comes. I never thought I'd "super advocate" for a drug but, yeah. 

They're supposed to protect my heart, and they do so in more ways than one. ; P

But when I was so cruelly pathologized, and then gaslit, in the throes of this, I stopped some of what I needed to be doing. I was being convinced that maybe I was nuts, and maybe I was a bad person. So then, I took the attitude of lets see what happens if I go lax on all my "rituals." I was beaten down so low that I had this sense of maybe not deserving to self preserve/self care in the ways I really should...

Then, the massive autonomic crash happened - then my fight to maintain at least some degree of homeostasis tripled. Today I use a massive chunk of my time slaving away at my own self management program; decocting herbs, carefully taking particular supplements at certain times of the day in intervals, taking digestive enzymes, specially preparing particular and usually medicinal-value foods (often in liquid form)...

I do believe that if I didn't do what I was doing, it'd be an even worse disaster. I know it, because I've tried it a couple times, and I won't be trying it again. I could end up on feeding tubes, machines, wheelchairs and I could even lose my life.

The thing I need most right now is proper bracing and to tackle specialized physio, while accessing some other medical services like cardiology. I'm seeing a neurologist in the near-ish future, too. I hope there may be some medications that may hit on deeper levels of what's going on, and thus be more effective.

I need to see a gastro soon too, because I'm fighting to get food into me, in spite of needing a lot of calories because my metabolic system is hyperactive and thyroid borders on too fast, even in spite of beta blockers. It pretty much "eats me up" - especially if I can't eat enough. I feel so weak, unless I throw coconut oil and egg yolks, and whatever else I can eat that goes in a blender, almost. My body burns up a lot of energy holding itself together and moving about. But, I'm still fighting for the gastro referral. It's one among only a couple that I have left to fight for, and I hope I'll get somewhere with it soon. I won't get into any more of what's needed and pending. It's so dizzying...

This is all in addition to one of the worst parts of EDS - pain. Our pain is apparently compared to bone cancer. I can agree. 


I'm just here at the moment to affirm this: Most people don't know how much of a fight the zebra fight is. If they only knew, they would never criticize or minimize us in the way they do, in ways they would never dream of doing to people with Lupus, Multiple Sclerosis, Muscular Dystrophy and Cancer. Well, for many zebras EDS is not that much different, in calibre at least, to the former mentioned. It's true and it's about time people #‎educate themselves

-Rosie G. 

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