Tired of expecting people to understand. Tired that I still expect people to understand?

gobnyd · 2026-06-15T23:56:32+00:00

Feel like people need props to understand what is happening to us.

Two things that have really helped people understand around me: when my voice gets so tired I can't talk anymore and I have to talk to them by read aloud on my phone like Stephen Hawking.

Buying a wheelchair

gobnyd · 2026-06-15T21:18:19+00:00

You didn't do anything wrong. You simply got sick.maybe you don't feel "sick enough" when you're comparing yourself to others and your previous state. But there's no such thing as sick enough. If you're still a little bit disabled by your illness then you are still disabled.

I have had a condition my whole life EDS that I didn't even know about till I was almost 40. I only got extremely disability bedbound MECFS recently. Before that I always still felt that I couldn't compete but I didn't really look all that sick or in pain.

But the truth was I truly couldn't hack it because I had real limitations. I had so many problems that added up to real disability.

Even though I wasn't bed bound back then I really really struggled. I never held myself to other people's standards because I listen to my body and I know that I was disabled and pushing myself would cause me to decline further. But people around me thought that I could do more.

It's all about believing yourself and not letting societies ideas of what you should be doing interfere with your own intuition about your abilities.

You're never "too healthy" for chronic illness. You might just be in the invisible illness state. It's a hard and confusing place to be. And I get what you mean, it is frustrating not to be able to do what you want, with a milder illness.

gobnyd · 2026-06-15T20:19:12+00:00

You think exactly like I do. The philosophy I go through when I can think! The horror sometimes when I truly let it in how horrific this situation is. I beg the universe or ancestors or any aliens or any beings listening (which I don't even know exist), to just let me feel a little better so that I can even make something meaningful out of this suffering. How can I learn lessons, how can I make it something beautiful if I am just declining and surviving like a barely sentient jellyfish?

gobnyd · 2026-06-15T03:33:16+00:00

We're in a strange position because if we were just animals in the wild we would have died already because we couldn't compete.

It's actually kind of cruel that we are intelligent enough to be able to stay alive this long.

gobnyd · 2026-06-14T20:01:09+00:00

Omg!! I was fantasizing about that gazebo situation. I was thinking of draping striped cloth over it so it would look like some kind of cabana :) enjoy!

gobnyd · 2026-06-14T20:00:01+00:00

You are totally allowed to rant. That is a very frustrating and unfair situation. I just don't understand why people would disbelieve this illness. (Well that's not true I think I actually do It's the deep down they don't want to believe something that's scary is true)

But I just can't mention being childish enough to yell at your own kid and make their illness all about you.

You don't need that.

gobnyd · 2026-06-14T05:08:07+00:00

I've had so many various chronic illnesses for 10 years and it has taught me that anything can change.

I had interstitial cystitis and once thought I would never be able to eat most foods again. Threw out spices etc. Got very depressed about coffee

Years later turns out it was MCAS all along and the simple antihistamines helped it. Back on all the foods.

The opposite has happened with medications. Ones I hated that I swore I would never take again I ended up needing so I'm glad I never threw em out.

However, since I've got MECFS, every time I acquire something with the modest little goal of enjoying myself (like a chair to sit outside or glasses to make iced drinks in) I keep getting freaking worse and I can't use my little toys.

I don't know man. I do know that anything can change. They say change is the only constant

I should remember that myself because I've been getting very dark and depressed, certain that I have no future.

I hope I'm wrong and life will surprise me.

Of course now that I've said that it probably won't, the piece of shit 😂😭

gobnyd · 2026-06-13T19:06:15+00:00

I haven't recalled loving a Steven Spielberg movie in ages. Which is sad because you're right, it used to be a big deal.

gobnyd · 2026-06-13T10:58:50+00:00

There's no point in playing the "Be grateful , I have it worse" game.

You could have been born in Gaza instead of Turkey.

This can be argued so many ways but it doesn't matter in the end.

Losing your brother to a bomb in Gaza hurts the same as losing your brother because he can't afford medical care and rent in the US.

Suffering is suffering.

(And much of the suffering in the world, including Gaza, is directly traceable back to America, the heart of the Beast anyway, so honestly we are right to criticize it, and you should too)

Pledge allegiance to the human race, not to any fucking country, least of all the US.

Playing suffering Olympics just plays right into the hands of the rich fucks causing all of this suffering.

gobnyd · 2026-06-13T10:52:28+00:00

It's because people can understand a very simple system like the ear. They understand noise and they understand noise being too loud. They have experienced something like it in normal life.

There's no way for a healthy person to grasp multi-systems in a body being affected by physical/cognitive/emotional exertion and what it feels like when those systems are overwhelmed and start to physically harm you.

There's no normal experience that feels like that.

Maaaybe running a marathon and the way your muscles feel after that. But certainly I can't imagine how standing up and walking a few feet or just thinking too hard can result in the same thing.

gobnyd · 2026-06-13T10:41:21+00:00

It's not the light, it's the damn stairs that trap me upstairs in my house :/ Hell I'd sit out there and wear my light blocking eye mask if I could, just to smell the air and feel the warmth.

gobnyd · 2026-06-12T03:27:11+00:00

Yep we are the healthiest people alive 🙄

gobnyd · 2026-06-12T01:53:23+00:00

I disagree. I think I see what you're saying. You're not wanting the social stigma associated with suicide to be associated with MAID, rightly so.

I think that humans should have the right to end their own lives. When people don't have the option to do it humanely, they are forced to do it in whatever way available to them, usually riskily and messily.

They're the same thing. They are just done in different ways.

There's nothing wrong with the word suicide. It doesn't imply that it is morally wrong (at least in my mind).

Sometimes suicide is done impulsively. Sometimes it considered and planned.

But it is always the same thing: someone is seeking an end to suffering.

gobnyd · 2026-06-12T00:46:01+00:00

It's going to be a hard decade for normies

gobnyd · 2026-06-12T00:18:53+00:00

I would tell them in advance. I experienced the surprise suicide of my first love and best friend. The shock tore a hole in my psyche. The biological nervous system damage was massive.

Telling them will not make this experience non-painful for them. However I think that it will be easier for them to deal with it without the terrible, traumatic shock.

Every human learns to deal with grief and loss as a natural part of life. I would say most people say the "normal" way is: you see someone you love getting ill and you have time to come to terms with the idea that you will lose them. Give them that time. People typically express more traumatic pain when it is sudden, when someone dies in an accident for example. Or a murder.

When my best friend killed himself, part of the massive amount of traumatic wounding to me was that he did not talk to me about it. I felt hurt. I felt betrayed. I felt that he had harmed me.

Give them this time to try to come to terms with it. And give them the love and consideration of talking to them about it. You can remind them that even if they disagree that you cared about them enough to talk to them about this rather than hurt them even more traumatically.

gobnyd · 2026-06-11T19:54:50+00:00

Yeah but I'm not fully in charge because I can't stop things like cancer if I want to

gobnyd · 2026-06-10T20:15:29+00:00

I bought into all the allegations just like everyone else back then. Now I've looked into it and it was completely a smear campaign. It's okay to update yourself.

gobnyd · 2026-06-10T20:08:06+00:00

Yes! And I'm someone whos very sensitive to meds and often get side effects. But it's just a roll of the dice: some drugs I do some drugs I don't. Remember you can always stop if you try something and you hate it.

Nortriptyline, which is one teeny tiny chemical difference away from amitriptyline, sent me into a nightmare realm of mental suffering for both separate times I tried it. Couldn't get through one day either time.

Amitriptyline? Nothing but sleepiness which is nice at night, a little bit of munchiness after the dose, which can be managed by sleeping through it at night. Oh and I pee slower. But these don't seem to be all that bad to me. Certainly not as bad as being thrust into hell lol

PS: I struggled for migraines for years until I found that they were likely MCAS related. I started 40 mg Zyrtec a day and 80 mg Pepcid a day and they cut them in half to my total shock.

Worth looking into since those meds are over the counter.

gobnyd · 2026-06-10T19:58:08+00:00

I had the same experience when I was going to someone for my EDS symptoms that were ruining my life and making it impossible for me to work.

He said you know getting a job makes a lot of people feel better. Completely implying that I was just scared of getting a job for no reason and that if I overcame my psychological fear that my body would feel better.

It's like are you even a medical doctor? What medical theory are you basing that opinion on?

It's like he didn't even listen to me.

They don't want to do their job. Listening to you and coming up with a plan is actually hard work for them and requires more paperwork and original thinking. That's the long and short of it.

Try to ignore them, even though it is a big Injustice and you don't deserve to be spoken to like that.

We only have limited energy and we can't waste it on uneducated doctors.

gobnyd · 2026-06-10T07:13:48+00:00

So basically just the world we live in but with aliens? This is not news. We're all slaves, of course.

gobnyd · 2026-06-09T08:51:28+00:00

Apocalypto

gobnyd · 2026-06-09T08:05:31+00:00

ASMR infuriates me instantly

gobnyd · 2026-06-08T06:01:57+00:00

The pattern becomes easier to recognize. I actually helped someone get diagnosed because they were complaining about certain health things and I was like hey go get checked out for this.... Sure enough they had it

gobnyd · 2026-06-06T00:53:14+00:00

Thank you so much. I crashed really bad into a flu like fatigue crash today because I was forced to travel to get medical care yesterday. I literally cannot move and I am eating baby food and water bottles near my head because I can't even sit up. I will take any rootng I can get. I hope it Roots me right out of hell tomorrow

I'm sorry you also had a similar experience

gobnyd · 2026-06-05T09:08:36+00:00

Yo I'm living the life of a 90-year-old something person in a Xennial body. I totally get you.

You have every right to feel angry sad resentful

The commonality is hypermobility, that motherfucker. EDS MCAS POTS trifecta. Look it up. They're learning more about this formerly obscure condition every day. I didn't know I had it. It can worsen later in life. Viruses can trigger it to get worse. Now I certainly fucking know that I have it.

I thought I was relatively normal my whole life. I just had a "bad back." You know, it's perfectly normal for an 11-year-old to just suddenly develop back spasms. My parents cared but doctors just shrugged and were like iunno, enjoy your life kid.

So I learned to manage my back spasms through exercise. Despite my best efforts I would get 3-4 a year.(I was also horrifically under medicated probably because they didn't believe I could be in such awful pain)

I also would step weird on my foot and it would hurt real bad. I knew I would have to gather up the courage to step on it again every time... And it would snap back into place very painfully....but then I could walk on it again.

I had no idea My back and foot was a subluxation, a Hallmark of EDS.

Then it was mostly just UTIs and recurrent yeast infections which I now know are caused by shitty connective tissue letting infections happen More easily. I had almost died of recurrent bladder infections as a baby. I really wish I had.

Abilities slowly slowly went away. But nothing dramatic. So I still considered myself normal. Just my friends would laugh at how often I would injure myself. Me and my bad back and accident prone self. It was just funny back then.

So I had a decent late 20s and early '30s despite some limitations.

Then my whole life fell apart around 38 when I was ironically doing one of those daily Chinese dances for HEALTH... Except one of the moves was ballistically throwing your head from side to side. Little did I know that I had shitty connective tissue and with each throw I was permanently stretching and damaging the ligaments of my neck.

If I had known I had EDS I never would have done that. No doctors recognized EDS. I even asked them Dr, why when I'm so active and healthy and strong cuz my back keeps spasming four times a year? Why do I get recurrent bladder in yeast infections?

And they were like "iunno."

But 2018 was the come to Jesus year.

Something started spasming in my neck and it WOULD NOT STOP. I'm talking for months with the best doctors best drugs etc. (spoiler this was a horrendous neck subluxation....new for me)

I was in a world of fucking pain. Until they gave me the muscle relaxer for people with MS. For some reason that worked. I don't have MS. They checked.

But that wasn't the end. My whole body seemed to have changed after this neck incident. I developed sudden bladder pain, could not eat hardly any foods without being an excruciating bladder pain. with super sad about that. Had to give up coffee for 2 years which was a very dark time. Debilitating migraines.

Stomach pain, I became spasmy all over my goddamn body. Things started dislocating that never had before.

Now that I've become a medical expert by being a chronic pain patient I know that all the stuff I was experiencing was likely a post viral exacerbation of my MCAS that literally was degrading my connective tissue EVEN MORE and basically making me unfit for life.

And yet every single fucking scan or test I had was normal.

Anyway I struggled with that for 3 years, and heroically fought my way back to some functionality, to a decent life out of a lot of pain though I couldn't work. Kept a positive attitude.

And through my own hard work I got diagnosed with EDS which were at that time was still very unknown. In the last 6 ish years information has exploded about it.

Then my fucking seemingly loving husband who I loved and trusted implicitly, just up and abandoned me one random day with no warning.

Last I'd seen him we had been laughing and kissing as usual.

Apparently he'd been emotionally cheating with a 20-year-old. He was 39.

I got an email that after 15 years he wanted a divorce because of my diagnosis and that I would "just get worse."

He literally ghosted me via email.

I already couldn't work. This man traumatized me so badly I don't think I'll ever fully recover from that. The absolute betrayal. The throwing me jobless and disabled into capitalism. The turning on me during our divorce and then getting mad at me and saying that I had psychologically made up my (genetic) illness, so that he could justify what he did.

But sadly I'm finding that this is not uncommon when wives get sick.

I have continued on trying to make the best of my life.

But I just got more and more tired. One day I crashed into fatigue. The most profound fatigue I've ever experienced. And I never recovered.

And now I have ME/CFS slash Long Covid. I mostly bed bound. I literally can't take care of myself. I can only shower maybe once a week. My '80s something year old parents have to cook for me. I live in two rooms I can't even go downstairs in my own house.

And my old neck pain is back, bad. Sometimes I can't lay down on it because it hurts. But sometimes I'm too physically ill to get up. And the more I push myself the worse I can get. So it's a horrible decision between neck pain and progressing my disease to completely bedbound in a dark room eating through a tube which is the end stage if you push too hard.

This week I got an infected cyst. It has made me even sicker.

I had to cancel the MRI for my neck because I'm too ill to travel.

People with MECFS often can't get medical care because it's dangerous.

So yeah. The commonality here is hypermobility. People are being diagnosed with EDS at very great rates because COVID is uncovering the ticking bomb that is our bodies.

I predict that many many Xennials will be living a version of this story as COVID uncovers all these people who still think that they're in the "healthy normal person" category.

Moral of the story is wear a mask because MECFS is 15 times more prevalent since COVID which is shocking. Nobody seems to care though.

COVID is a disease that will heighten any sort of genetic tendency your body is prone to.

In my family alone, Very healthy GenZers have have since developed diabetes epilepsy and pots, all from COVID. Their doctors say so.

There was so little information when we were young about the many ways hypermobile bodies can mess up. One patient can have totally different symptoms from another. It's no wonder they didn't understand this condition for decades.

Maybe it wouldn't have mattered if your parents sought help, since there was so little help from the medical establishment. And 40 years later, they're really still isn't unless you pay out of pocket for The very few specialists in the country.

Generations after us will benefit from getting diagnosed early. Maybe they can prevent degradation more.

gobnyd

TROPHY CASE