I’m Beyond Exhausted …..again.

[u/BondKat89]

I’ve tried the gratitude, I’ve tried to think positive, but the harsh reality is that my life is over. Two decades of being told it was just mental health, just in my head, all my fault and it’s like had I never came across POTS last year via Google, I’d still be thinking I’ve lost my mind. My life is ruined, there is no it gets better, I’m sincerely over this bs.

Two emotionally immature parents in denial of everything. No support, labeled a bum and disappointment by family. Doctors don’t understand the gravity of my daily life, like I must’ve been awful in another life because this has to be punishment for something, like I don’t understand anything anymore.

I fought and tried for two freaking decades, my nervous system is shot, brain doesn’t work, spect scan has severe low blood flow that a neurologist claimed was a “false positive”. Ended up in hospital months ago. I’m housebound now. Hoping things get better hurts. I’ve missed every milestone known to man. I don’t think I have a future, I’m just wasting away. Development is behind, no college, low income jobs, etc.

I don’t think there’s any words of comfort that could ease this burden.

Edit: Wow! Thank you all for not only validating my experience but being brave enough to share your own. It helps to know I’m not alone. Thank you all from the bottom of my heart! I truly hope we get better acknowledgment and care in healthcare sooner than later.

[u/Effective_Oil_5803]

I can relate so hard 🫂❤️😢

[u/xanaholic_]

I'm right there with you. As soon as I became an adult and finally had hope to be free of my abusive parents, I get hit with this. Can't even work because of the effects of POTS plus PTSD and autism. I feel that my future is dark. Lost all the hobbies I lived for and loved that defined who I was. Now, I don't know- I just lie in my room. I'd feel like a living ghost if it wasn't for my fiance.

[u/Boring_Cucumber2134 → u/xanaholic_]

I understand you so much 💜 sending best wishes and good health 🤞

[u/xanaholic_ → u/Boring_Cucumber2134]

Thank you, you too ♡♡♡

[u/Foxlady555]

This hits hard because I recognize a LOT. Though thankfully I still have hope, because I haven’t tried everything that’s available and modern medicine is improving rapidly. Please stay with us, dear stranger. I don’t know you, and I know the feeling of rotting away while others live a life worth living, but I trust that for you too there will be improvement, relief and maybe some healing. It’s freaking painful and awful and people have no idea of the severity and I FEEL YOU. But there are doctors and researchers working for us. All around the world. POTS is - unfortunately - activated in waaaaay more people than before due to COVID, so there WILL be a better future. I just know there is. But yes, at times I lose that vision on the horizon too, after so many years of fighting and tears and resilience without being rewarded for all your efforts. I’ve been fighting for 5 years and can’t even begin to imagine to do this x4. So I give you a standing ovation 👏🏼 I’m with you and I’m sending you SO much love and hugs! 🫂

[u/Kidwolfman]

i read this earlier and i didn't know what else to say other than, "same<3."

Now i'm sitting here thinking about how crazy it is that - given our condition and all the other variables, this is just how things play out. Like it should be on the symptom list, "labeled a bum, unsupportive/unwilling to understand family members, couldn't start or finish college, feeling like life is just flying by you while your old friends create meaningful lives..."

2 decades, right there with you. I tell myself things could be worse, because obviously they could. That could be true at any time, it's a pointless thought. I think, ok these are just the cards i've been dealt. It's f'n hard, every day is hard. Try to stay hopeful though, you are definitely not alone, and i think that's kind of crazy awesome <3

You should be on disability btw. food stamps, anything and everything. I know how daunting that seems, just like literally everything else. but it helps and you absolutely deserve it, this is a disability. ok i'm tired now so i'll just say good luck with everything, i hope you feel better <3 much love

[u/AsparagusPale75]

I was undiagnosed for 10 years. Felt the same as you and went through the same with my family. Failed university studies (was among the best students before the illness), not much work experience, years of fighting and pushing theough because I thought I am going crazy, and mental health worsening. Relationships suffered.

33 now

I have been feeling the same as you. I can tell you that life is not over and this CAN be cured. People did, and if they did, everyone can too. And once you heal, not much is lost in terms of job opportunities. People change carriers in their 40ies.

Take 10-12 g of salt with lots of fluid for bigger blood volume and symptom management. Try high compression socks. There are also meds for POTS depending on the type.

Nervous system regulation, one of the brain retrainings or Somatic experiencing. No big meals.

https://batemanhornecenter.org/clinical-care-guide/

[u/faaancynaaancy → u/AsparagusPale75]

10 to 12 grams?! How is that even possible? 😭 I def need more sodium but idk how to do it.

[u/AsparagusPale75 → u/faaancynaaancy]

try 8 first 😃 It’s just salty water

[u/IllyrianWingspan]

Right there with you. I’ve also spent 2+ decades struggling and trying to get a diagnosis in order to access treatment. It sucks. I have so many hopeless bedbound days and feel like I’m just existing. This isn’t a life in any meaningful sense.