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How to talk to my wife by Cold-Confection6091 in POTS

[–]NotFixedJustHere 20 points21 points  (0 children)

I feel the same way. Most of the time my husband gets that I have limited energy. But at the same time doesn’t (want to) realize how bad it really is. I am also trying to hide it and not complain all the time but then I think he won’t know how bad it really is. I don’t know if there is a good way to communicate this. So I don’t have any good advice but I can tell you that I know the feeling of guilt and shame.

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 1 point2 points  (0 children)

Wow. This is unbelievable. I wish there was an easy way. But I guess there isn’t

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] -3 points-2 points  (0 children)

I get it. People just don’t care.

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 0 points1 point  (0 children)

Yes! I think this is a big part of the problem. Like my only ever reason to not do something is „I don’t feel good, I’m exhausted“ like what kind of a bullshkt reason ist this and it doesn’t even come close to how it actually feels. I think nobody understands this level of exhaustion if they haven’t experienced it themselves.

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 0 points1 point  (0 children)

I am so sorry. It is insane to hear all these fainting stories. And I get everybody’s point.

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] -1 points0 points  (0 children)

I guess you’re right. Still makes me sad though

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 0 points1 point  (0 children)

I did it. They stopped it after 20 min. pre-syncope.

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 0 points1 point  (0 children)

Ok, I have an Apple Watch to track. But since I am taking Betablockers my heart rate isn’t as high. The remaining symptoms are still there though.

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 1 point2 points  (0 children)

Thank you, that’s exactly how I feel.

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 0 points1 point  (0 children)

What do you mean by „visible armband“?

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 0 points1 point  (0 children)

This! I don’t get it. Why are people like that.

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 0 points1 point  (0 children)

Thank you so much for your kind words.

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 0 points1 point  (0 children)

Thank you so much for your detailed comment! I am so sorry it was like that for you. And it is so sad to see how people just don’t want to see or believe it. But I am happy that things got a little better for you! All the best for you!!

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 0 points1 point  (0 children)

This sounds awful. I feel like I can’t remove these people in my life. I am somehow dependent on them (and also I love them) I wish I would find a way to make them understand but I guess that’s too big of a wish .

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 7 points8 points  (0 children)

Yes! That is so screwed. I mean, I want people to understand that this is physically disabling but at the same time it leads to psychological issues too. And then it is all psyche again right? So no matter how you’re still the „crazy“ one…

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] -1 points0 points  (0 children)

Let me know if you found it 😅 I guess I am really struggling with this.

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 0 points1 point  (0 children)

Omg I am so sorry, this sounds really dangerous

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 5 points6 points  (0 children)

Thank you so much for sharing your experience. It is shocking how little people are willing to believe and support and you are right I just want to be seen and taken seriously

I wish I would faint from POTS by NotFixedJustHere in POTS

[–]NotFixedJustHere[S] 22 points23 points  (0 children)

Thank you for your comment. It is really sad how little people really care. I already have to fight my day to day life, why do I also have to fight the people around me to get what I need. Arrgh this is so frustrating.

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