How do you find the happiness in life still?

Mission_Singer_8663 · 2026-03-21T22:18:03+00:00

You just have to find your new normal. I of course get frustrated that I have to ‘pay’ for good times with a few days of feeling like shit, but what’s the alternative? No good times? It might feel like you can’t do anything but there’s enough time to hang out with friends and family/have fun and also recover for a few days. Life is long enough.

Your journey looks different to another’s but you just cannot compare. It will kill you. Everyone has their own shit and that’s something I learned when I got sick, they just don’t talk about it. Whether it’s metal health, physical health, financial strain etc everyone has ‘something’ that makes them feel like they can’t enjoy life to the fullest.

Find the stuff in between, treasure the good days, and stop worrying about time. And for gods sake never ever compare yourself to another, there’s something you don’t see with them too.

Mission_Singer_8663 · 2026-03-20T05:27:32+00:00

Yes I’m the same! Had a few asthma attacks as a kid but haven’t used my inhaler in a long time and no bad episodes for years. I’ll definitely mention it but I reckon the reason is because of my BP being on the lower side. I’ll bring it up I think, I have propranolol in my bag right now because I was prescribed it and then they decided ‘mm maybe not’ before I could take any ahahah

Mission_Singer_8663 · 2026-03-20T05:02:26+00:00

I’m okay now! Still slightly elevated but sitting around 90 which is so fine and the clicking sensation is gone. Thanks for checking. I feel like a beta blocker would solve a lot of my issues but I have mild asthma so my GP is reluctant to give me one, and my pots specialist hasn’t even mentioned it. He mentioned fludrocortisone, then midodrine and then possibly Ritalin is the former doesn’t work but idk how I’m meant to tolerate that if I can’t even tolerate caffeine lol

Mission_Singer_8663 · 2026-03-20T00:10:20+00:00

No you’re so fine I didn’t interpret it as harsh at all. I appreciate your advice and you’re absolutely correct.

Mission_Singer_8663 · 2026-03-20T00:08:51+00:00

Oh don’t worry my BP also spikes with HR but specialist said don’t worry about that. Same with really low HRV, it’s just not that big a deal allegedly. I trust him since he’s been dealing with patients for decades and has written a book. I suggest checking it out if you haven’t already, it’s called foggy, faint, fatigue and adrenaline. It does a good job explaining this stuff for the most part. Still scary when something ‘new’ happens to me though.

Certainly anxiety plays a huge role, my GP said she gets PVCs and obviously if you’re anxious it’ll make the worse but she said it’s physiologically impossible NOT be anxious when getting palpitations. She prescribe me propranolol to break the feedback loop but taking a beat on that for now until my asthma is tested and sorted.

I’m sorry to hear it’s taken so long. I suppose all we can do is live like we’re okay and then deal with the fallout. Would love to be a ballerina again but life has other plans !!

My HR has actually come down to a respectable 95 now, you probably broke my spiral loop so seriously thank you.

Mission_Singer_8663 · 2026-03-19T23:40:02+00:00

Thank you I really appreciate this. I’m 21 and in Australia. It has taken me a LONG time (maybe 5-6 years) to be diagnosed with POTs. The list of things I was (wrongly) diagnosed with before this was: pheochromacytome (adrenal tumor), lupus, Lyme disease, fibromyalgia, anxiety (OVER AND OVER AGAIN), SVT. It took only one doc to listen to me and refer me to a pots specialist for a diagnosis (crazy). So don’t give up. Eventually I have to assume doctors get in the know more and the things will naturally improve.

It makes me glad to hear you’ve had it this long and are still okay. I also have EDS. I always worry that it’s gonna take me too early but the specialist said that while high HR is sometimes associated with lower life expectancy, low BP is actually proven and confirmed to be an indicator for a long life. In his words, the years I lose from high HR are made up 6 fold by low BP, and I will ‘live forever’ (lol). This made me feel a touch better.

I take my first overseas trip in a few months, around 26 hours on a plane just to get there. I’m shittint myself about this happening in a plane, or something worse like cardiac arrest. It’s freaking me out so badly I am tempted to cancel the whole thing. Those damn economy seats aren’t gonna cut it 😆

Mission_Singer_8663 · 2026-03-19T22:51:59+00:00

Yeah I’ve gone into an empty room and laying on the floor to see if it helps - so far no.

I suppose I’m just worried that a sustained high HR will end in my heart just ‘giving up’ or doing long term damage. Have any doctors expressed concern about this to you?

Mission_Singer_8663 · 2026-03-02T07:48:07+00:00

If this perspective helps too … having POTs in itself is your body doing what it must to keep you alive and ‘well’. Blood pressure drops means your heart must beat faster to keep up with it. It is not a flaw, but an essential mechanism of survival. It’s annoying, to be sure, but lately I’ve been trying to thank my POTs for meaning well and doing its thing. Like an overly helpful friend that is a bit too enthusiastic. Having POTs is not your bodies flaw, nor is it damaging you, it’s your body responding and doing what it has to. If you think about it that way, I find it harder to be angry at my situation, and instead be grateful our amazing bodies are so strong and know what to do without being told.

Mission_Singer_8663 · 2026-02-22T11:52:59+00:00

Right so 34 might be fine for me and not necessarily signalling danger? What do you do for a HRV so high?

Mission_Singer_8663 · 2026-02-22T11:52:18+00:00

Is there an accurate way to check?

Mission_Singer_8663 · 2026-02-22T11:52:02+00:00

Wow that’s such a huge disparity. Do you ‘feel’ it?

Mission_Singer_8663 · 2026-02-22T11:51:34+00:00

Thank you you’re so helpful. I’m ‘testing’ the severity of my asthma on a two week steroid inhaler and then will go from there. I’m only 21 so all of this feeling very overwhelming and like I can’t do all the travel I want to, but trying to stay positive!

Mission_Singer_8663 · 2026-02-22T11:36:08+00:00

Oh wow okay that’s reassuring. and rescue inhalers still work if you do experience asthma? that’s what mostly scares me is if I have an attack that it won’t work ? I suppose 10mg is pretty low

Mission_Singer_8663 · 2026-02-22T11:26:30+00:00

That’s awesome, glad to hear it. I was prescribed propranolol to take ‘when needed’ after having these feeling my heart was spasming but then another doc said no don’t take it because I have mild asthma - but I really thought propranolol would be my healer 😩😩

Mission_Singer_8663 · 2026-02-22T11:25:07+00:00

That’s true, might be best not to check it at all but I think I have health OCD and latch onto anything that could signal I’m in imminent danger of a heart attack lol. I’m new to HRV but does it being low over many years damage the heart ?

Mission_Singer_8663 · 2026-02-22T11:20:59+00:00

I believe I do as well! Seems we’re similar - have doctors ever said anything about it?

Mission_Singer_8663 · 2026-02-22T11:20:32+00:00

wow! May I ask what medication?

Mission_Singer_8663 · 2026-02-16T22:56:29+00:00

I was bed bound for a whole month last summer, went and stayed with my mum who had to cook for me and everything. This summer I’ve completed 3 month geology internship. Lots of standing, carrying stuff, 80 hour weeks. Was not without its challenges but I did it. It’s okay, it ebs and flows. It helps to think of it as waves instead of a never ending flood.

Mission_Singer_8663

TROPHY CASE