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Being Reminded Pots Is Here


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Yesterday evening had an hour where my BP and heart rate where what it use to be....I was so excited, thought about the day and tried to replicate it...but nope, it was back to business as usual with wonky high hear rates and BP all over the place...major headache this evening...really started to get upset...but trying to remind myself to be thankful for having that moment yesterday and though it is not great today, it's not the worst...just roll with it, breath, and lay down....sigh...

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I feel you.

I am early in this dysautonomia diagnosis rollercoaster of emotions and physical issues but...

As for myself, I am a very analytical person and I can admit controlling sometimes. I want to know what to expect. I want to know why. I want to know what I can do. That's what I guess is hardest about this illness; that there is no direct plan or path that I can expect for my specific body. As I try different things and start this med, I notice symptoms day to day and feelings and get caught up wondering what the cause is or is this the new normal, etc.

I am caught between the contrasting ideas: that book (though the concept was not created by author) "The Secret" 's idea of manifestation and mind over matter and my perhaps pessimistic personality of always preparing for the worst (and mostly hoping for the best).

In a panic of very low HR but normal BP yesterday all day, I came across a thread and people mentioning thoughts I try to keep in mind and like you said Faye, be thankful for the moments.

For some reason, this past year AA mottos keep coming to mind (though I've never been involved--the past year the words kept coming up in diff situations, some so true and inspiring) "One day at a time" though for some of us, one hour or less is sometimes a better focus.

I certainly have moments of breakdown and tears and desperation. I'm trying very hard to be present and focus on what I CAN do and what is still possible.

I feel I'm rambling. This post is for me. Thanks for listening.

I am so thankful for the kindred spirits on the other ends of computers here.

I hope you have more good moments and more moments strung together Faye.

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Stellaluna, the way you describe how you think (what is the cause, is this the new normal, etc.), is exactly how I think too! These past couple days, some unusually bad fatigue has hit me despite getting 10 hrs. of sleep a night and all I can think is WHY WHY WHY, and IS THIS THE NEW NORMAL.

I've never been that "in the moment, one day at a time" person...ever. I always seem to think I'm on the edge of some descent into horror.

I'm thankful for the forum too. Hope everyone is having a good Christmas Eve!

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I feel exactly the same ,I try to accept the situation but the lack of understanding why these symptoms appear drives me nuts especially when you are doing all you are advised too .

My first day off work was spent in bed with a migraine hubby cleaned the house and prepared loads of food for visitors, I miss having the energy to do things together and feel really guilty too

Hoping we all have better days in 2017 !

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It is so bitter sweet to here you are all on the same page....I think one of my first post was about going from being very active, always on the go, hiking,dancing, daughters school sports....and it is and probably will be for some time the whole cycle....today is a very "pots day" heart rate being unstable all bouncing like a basketball, and bp not too far behind...feel my pulse in my ears and throat kinda day....but I have an ugly sweater party and darn it all I am going! My hubby will wash my hair, daughter will dry and flat iron....and I will do the face....hey team work...good thing I am wearing leggings under my long ugly sweater, fix these feet aren't touching the floor....short of breath, like I ran a marathon....but you all really just help me to keep fighting and accepting this is doable, may need to inlist help, may need to do it differently and not as long, but you can have a life and it can be fun....tomorrow will be a 100% bed rest...probably won't have a choice, but today I do, so her we go....

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POTS hangover is what I will call it, drunk on dancing, feet where on the floor dancing like I use to, had about 120 oz water, had several lay down flat moments due to high heart rate... and today can't seem to get it any lower laying down below 115....guzzling pedalyte hoping it will help, and of coarse very little sleep....but like back in college days it was worth it(minus the booze) ... With dancing and high hear rate that was plent a buzz... Lol....a day for sticking in bed....but I knew this was likely the outcome.....so I can't be down about now....I enjoyed myself and will hold onto that as I try to meditate e and guzzle electrolytes

Edited by Faye
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