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Pistol

POTS in real life

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Well - this is what happens …. my husband had to have an EGD and I was the designated driver. ( I am homebound and have not driven in years but it was the only option ). While in the hospital waiting I visited with many of my old co-workers ( I used to work in that hospital before becoming disabled ). Lots of hugs, stories, gossip etc. I had breakfast AND lunch there ( I do not usually eat meals as they often make me feel worse ). So - just a wonderful day of bad decisions. Everyone was impressed how well I am doing and I boasted about my improvements. 

Well - when we got home I was soooo wired! Full of adrenaline, could not sit still or come down from my high. I told my husband that I would probably be up all night. Around 8 pm I crashed - all of a sudden, like someone flipped a switch. Confusion, dizziness .. and then I could no longer be upright, I had to crawl and still passed out. My husband took me to bed, I fell asleep immediately and did not wake once. This morning I am still bad ( I tried to brush my teeth with the toothpaste and put my pills in the coffee filter ….🤨) - so I am bracing myself for a few days of being out of commission. 

This unfortunately is what a good day can be like for a POTS person.  This is exactly why it is an invisible illness, why people do not understand why we cannot function and also a good reminder why we should not try to " blend in" - as this obviously can backfire. I truly should have known better and just stay put in a chair with my hands folded - but I had such a good time acting normal!!!!

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But you were out in the world!

I struggle with wanting to keep everything so I don't crash and wanting to be a real person every once in a while. I continue to think it's worth it to do things occasionally (read very rarely) that are worth it to me. 

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Oh @PistolI am so sorry the crash was so bad but I completely understand wanting to do normal things again.  You should be proud of driving (!) , socializing, eating out as it were.  Those ARE huge accomplishments.  The payback sucks but at least you now know how to recover.  I completely agree about how this sort of thing can be deceptive for someone who doesn’t understand invisible illnesses.  They don’t see the days it takes to recover but I am so impressed that you could do those things!

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Thanks @toomanyproblems and @p8d --- I am really proud of me too. And I know I will go sneak out into the real world again - I just will do a better job at scheduling next time!!!! BTW - I am hooked up to my IV fluids right now and feeling so much better.  I guess I might go out of town ...………………...……………….. 

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13 hours ago, Pistol said:

Thanks @toomanyproblems and @p8d --- I am really proud of me too. And I know I will go sneak out into the real world again - I just will do a better job at scheduling next time!!!! BTW - I am hooked up to my IV fluids right now and feeling so much better.  I guess I might go out of town ...………………...……………….. 

Hahaha, i like your humour. Im proud of you too pistol :).

Hey by the way, where does your nickname comes from? (pistol)

 

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@whoami - my nickname stems from always speaking what is on my mind. People used to say " she's a pistol". 

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Hi pistol

So sorry you crashed after having a nice time so incredibly frustrating .I really hope you recover quickly . 

This is the problem though we look well and on a good day act normal what people don't see is the aftermath of having a good time. 

Big hugs x

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Thank you @dancer65. I am already recovering and think I will be fine in a few days. Yes - I agree. IF we can manage to get out and do something then we always have to pay a price afterwards. Most people do not - and therefore they do not understand why we would choose to stay home instead of joining in the fun. We have to weigh the benefit of paying the price vs being safe every single day. And every single day can be a different challenge. I just spoke to someone who was surprised that I felt my condition was improved when I still have so many limitations. But I am no longer taking seizures, no longer passing out every day, no longer in the hospital every 6-8 weeks. I no longer have to fight the doctors in the ER and beg for IV fluids ( since I now get them weekly and as needed at home ). I m able to do basic home skills without passing out - a service I can do for my family. I am happy that I can do what I am able to do. nd the next time I overdo it I will prepare, expect and endure the consequences of "being normal". 

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Hope you are still improving today. 

It's great you have seen improvements and are able to do more it's very rewarding to be able to help the family . I am very fortunate that I have returned to work but it comes with a price tag , I really don't have any energy to socialise. 

 

 

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I'm so sorry to hear you had such a bad flare after going out and having such a nice day! 

Sending lots of well wishes! 

It's so difficult how we can appear totally "fine" to those around us, and then crash so hard, all of a sudden, and people just often don't get it. 

The last time I had to go to hospital — a few months back — I had been out that morning with a friend, having brunch. She commented on how "I appeared fine" earlier and she was so confused (but generally caring overall) about how I could turn for the worst so fast. It was the first time I had been out socially in many months. I could feel my body saying that I was over-exerting during that morning (we walked a very short distance and it was a struggle for me), and then, bam... severe hyperPOTS attack, in hospital, then on the couch for weeks. 

I so miss being able to just make plans and not worry about the severe flare that sadly always seems to come.

Really hope you feel better soon, Pistol. 

Also — I love the story behind your username :) 

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You are my hero. So much respect for what you did and what you are willing to sacrifice to experience a time slot of “normal”. 

I sit and lament about loss of life in the form of what I call living but I am a wimp. I get freaked out and scared off of trying because I fear the symptoms and implications too much. And by implications it is all just fear of the unknown to me. There are no secrets I know that I am holding back as far as what we should be doing or what we shouldn’t be doing and what will happen accordingly. It’s all fear and anxiety that hold me back. And trying to string up a bunch of events like dot to dot and make sense of it and I can’t. I don’t get it. 

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@lieze - that is the boat I am in, too. I often choose to stay home - even if I am having a good day - out of fear that it might be too much. nd that is not only considering myself - if I were to go shopping or to a movie with my daughter or even a church picnic - when I crash it's over and we have to go home. My teenage daughter often asks me NOT to go because she knows that most likely I will have to cut the event short.  Plus - the days after nothing will get done b/c I will be in bed.  

So, Lieze - it is maybe not fear of the unknown but rather wisdom of knowing our limits!!!! Be well!!!

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11 minutes ago, Pistol said:

@lieze - that is the boat I am in, too. I often choose to stay home - even if I am having a good day - out of fear that it might be too much. nd that is not only considering myself - if I were to go shopping or to a movie with my daughter or even a church picnic - when I crash it's over and we have to go home. My teenage daughter often asks me NOT to go because she knows that most likely I will have to cut the event short.  Plus - the days after nothing will get done b/c I will be in bed.  

So, Lieze - it is maybe not fear of the unknown but rather wisdom of knowing our limits!!!! Be well!!!

I wish such limits wouldn't exists, considering our advances in science and whatnot. It doesn't help that doctors don't even acknowledge us most of the time.

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@Pistolwell, I love the story behind your name!  My family should have called me that too!  Have you recovered yet?

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@p8d - glad to hear I am not the only gun in the closet! -- Yes- I am feeling better, was back on my rowing machine for 1 minute today AND did the dishes. But this only due to the extra fluids I was able to receive b/c I have an awesome PCP who works with me and would rather see me at home than in the ER! IV fluids - IMO - are the single most effective treatment for flares IN MY CASE!

P.S. Don't ever stop shooting - even if it backfires!!!!!!

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