Pistol Posted January 31 Report Share Posted January 31 After a few years of stability today I was hit with a flare because I missed one of my weekly infusions. Everything was fine until .. well, until I hit a brick wall. Palpitations, shortness-of-breath, no energy, can't get off the couch and can't even read or watch TV. I had to cancel a dinner. The friend asked "Well, what is wrong?" I answered "It is my chronic illness". You can imagine the response. So I am trying to put it simple but just could not. Is it the brain? Then I am crazy. Is is the heart? Then I should see a better cardiologist. Is it a BP problem? Then I need to eat less salt. Is it my nerves? Then I should see a therapist. UUUGGGH! Even after soooo many years of dealing with this, and having conquered a lot, I am still hitting a wall when I have to tell people why I cannot function when in a flare. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted February 1 Report Share Posted February 1 I get it. When I tell people I'm feeling better, they think that's it. It's over. I've beaten it. They don't understand that when I say I'm okay, I'm really saying I'm at my baseline today. Not that I'm a perfectly normal and perfectly fine feeling human being again. I often times still think I can do things that I can not. Or that end up having severe consequences. I also wonder when and if I'll be able to cut back/go off some medications and what will happen if I do. I don't know what to say about people who don't understand. I'm still having the same problems within my family and it's caused a strained relationship for more than half a decade now. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 1 Report Share Posted February 1 So sorry. Hope you recover soon. Definitely it is very hard for people who have not experienced it to grasp just how severely disabling POTS can be. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 1 Report Share Posted February 1 @Pistol, people seem to think there is a quick fix for every medical problem these days. I think in the past society was more accepting of chronic illness. When you read books from Victorian times, there’s almost always a character such as an invalid aunt, or someone with migraines lying in a darkened room. And these characters aren’t made out to be lazy or a burden on their families. So many had TB, polio or war injuries, and people seemed to understand that. (Not that things were better than now, but maybe they were more accepting of illness.) Plus, so many people don’t know how to just listen and be sympathetic, rather than rattling off ill-thought-through and unsolicited advice. I hope you get back to your “normal” soon. Quote Link to comment Share on other sites More sharing options...
Sea otter Posted February 1 Report Share Posted February 1 @Pistol I am so sorry. That's extremely frustrating. What's wrong - pretty much everything. When I was in flare lately one family member told me some of my symptoms must be in my head and even thinks that doctors made a mistake and I don't have this condition. Typical gaslighting, in the middle of flare. Also people think you can cure everything these days, like someone has mentioned, especially with positive thinking. It's sad we have to hide how we really feel or don't know what to say - because there is SO MUCH to say. Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 1 Report Share Posted February 1 Hope your flare passes soon. Hang in there! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 1 Report Share Posted February 1 Being sick sucks. POTS sucks. Mean people suck. Sorry it sucks. 💜 Hope you’re better soon. 🙏 Quote Link to comment Share on other sites More sharing options...
Machair Posted February 4 Report Share Posted February 4 I just wanted to send you all the love in the world and to say I hope you are feeling better. You have helped me more than words can say and my heart goes out to you xxx Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 4 Author Report Share Posted February 4 3 minutes ago, Machair said: I just wanted to send you all the love in the world and to say I hope you are feeling better. You have helped me more than words can say and my heart goes out to you xxx AAWWWW! 🥰 Thank You! Quote Link to comment Share on other sites More sharing options...
Jyoti Posted February 4 Report Share Posted February 4 Yes...sending best wishes for a quick uptick for you, @Pistol! And for what it is worth, I don't think I can do anything useful in terms of dealing with other people's blindness when I am in a flare or a crash. I just wait till I feel a little better. Sometimes I think of more successful ways to explain and once in a while, I know the relationship is not really a good one if the person cannot find a way to believe me when I tell them I am sick. But none-the-less, it is a painful part of this condition and a mostly invisible one, along with a lot of the dysfunction itself. It is why a forum like this is so vital--if we did not have one another, the isolation of living in these bodies would be unbearable sometimes. So...know that the work you do here is much appreciated. Quote Link to comment Share on other sites More sharing options...
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