azmusiclover Posted July 27, 2012 Report Share Posted July 27, 2012 I am wondering how others answer questions that people have about this condition. We are going to Vegas next week. It's an annual trip with a lot of the same people who all get together to play poker at a big convention thing. Last year we went and it was part of our honeymoon. I met a lot of really nice people, and had a ton of fun. I drank a LOT last year because I wasn't sick, stayed up very late, ate what I wanted etc. This year, we are going, and I'm not going to be able to drink much, if at all. I'm going to try it and see how I feel. I can't eat much and I know my energy level is not up to playing 15 hours of poker a day. (unless I want to just lose all my money) I can live without drinking, that's not an issue. But, this is something that I have looked forward to for a year. I'm a very serious poker player. It's something that I really enjoy and with online poker being taken away, I have to go to a poker tournament or cash room to play. That's hard to do when you don't feel good enough to drive and sit up for several hours. All of that whining aside, I'm wondering what to say to people who ask me, why I'm not drinking, why I'm so tired, how I'm feeling (several are facebook friends and know that it's been a rough year) and mention my lovely weight loss. I feel like for stuff that people don't "know" about it, it comes across like it may not be a "real" illness. How do you politely answer questions from people without having to explain something they really don't care to know about anyway? Do I just say, I'm sick and they are trying to figure it all out? What if I pass out at the table?I'm going. No matter what. I don't care if we have to rent a wheelchair and I have to be wheeled around Vegas. I am going to go and enjoy myself. Becca Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted July 27, 2012 Report Share Posted July 27, 2012 Becca, good for you for going! Just going on the trip will be a big win because your love for life is beating the illness. I'm planning a trip next week with my family and dread flying but I'm going for the love of spending time with them. Its a big family reunion so I'll be facing some of the same challenges:In preparation I'm planning to get packing done 2 days ahead- so I can rest and salt/ fluid loadI've planned to get 2 ltrs of saline the morning of the flight. (this helps me may not apply for you.)Im making arrangements for IV therapy there if I need it. And I'm making arrangements for massage.I've planned a room where I can get away from all the action when I need to. When I know someone really cares and they ask I typically tell them what kinda day I'm having and try to find some blessing in this.When I don't know someone really cares, but they might, I say, "do you really want to know the truth?". (gives them the option to permit me to say more /or not). They always say yes and I find it connects us a bit. When someone really doesn't care I just say "I'm hanging in there."When people don't know about my condition I'll say, "I have Dysautonomia, a rare disorder of the autonomic nervous system- the part of the system that controls all our involuntary functions like BP, HR, Digestion, etc. So my condition affects all of my organ systems. It's kinda like having a really bad case of the flu that keeps you in bed all the time without the runny nose, sore throat, etc.". Quote Link to comment Share on other sites More sharing options...
McBlonde Posted July 27, 2012 Report Share Posted July 27, 2012 I hope you have a great time on your trip!When I am faced with acquaintances that ask what's wrong, I usually just saying something like "I have a heart condition that affects my BP and HR." Even though POTS is not a "heart condition" .... people know the words "heart condition, blood pressure and heart rate" so that answer satisfies them. I have found in my experience that most people's eyes just glaze over if I really talk about dyautonomia to an acquaintance. When most people ask you how you are, they don't really want to know... Real friends & family that care are another story completely! Quote Link to comment Share on other sites More sharing options...
azmusiclover Posted July 27, 2012 Author Report Share Posted July 27, 2012 Yes. Flying *****. Thankfully it's just a 45 min-1hr flight. We normally drive to Vegas but since it's summer and there are several stretches without any cell service, I just don't feel comfortable. I wish wish wish wish wish I could get routine IV saline treatments. It is one thing that always makes me feel better!!!! I should set up a massage while I am there. Especially for body fatigue from playing. That is a fabulous idea. Thank you for posting that. I like the description of having a bad flu without the runny nose. That is clear, short and easy to understand. I hope you have a wonderful family reunion!Becca Quote Link to comment Share on other sites More sharing options...
bellgirl Posted July 27, 2012 Report Share Posted July 27, 2012 Go...enjoy what you can, rest when you have to; don't worry about what other people think or say, because those are the "friends" that aren't really concerned anyway, be honest but quick in your explanation, if someone asks, because no one understands this unless they have it, anyway; drink plenty of fluids like gatorade and I'll be praying that you will have the energy to have fun and have safe travel!! Quote Link to comment Share on other sites More sharing options...
peregrine Posted July 27, 2012 Report Share Posted July 27, 2012 I, too, have found that talking about dysautonomia/POTS as "a heart condition" tends to get a lot more "ohhh, okay, so you will be tired, can't exercise much, and we should treat you carefully" than talking about it as dysautonomia specifically, or as a nervous system condition. It's not entirely true, but it definitely helps get the idea across. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 27, 2012 Report Share Posted July 27, 2012 I just say I have a rare nervous system illness that isnt life threatening but makes me really sick...... Quote Link to comment Share on other sites More sharing options...
gofl1 Posted July 27, 2012 Report Share Posted July 27, 2012 I think "heart condition" is the best thing to say. People get that you aren't well and automatically understand you are limited and that your condition should be taken at least somewhat seriously. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 28, 2012 Report Share Posted July 28, 2012 When it comes to pots, sometimes I tell them my heart races when I'm upright so I get tired easily. OrI'll say I have a blood circulation problem. Both explain why I look ok but can't function for long upright. Have fun. Quote Link to comment Share on other sites More sharing options...
azmusiclover Posted July 28, 2012 Author Report Share Posted July 28, 2012 Thanks everyone. I intend to have fun for sure. I also plan on winning at least one tournament! I'm just anticipating people commenting on how much weight I've lost since we got together in January. I'm thin to begin with so losing 20+ pounds has me looking rather sickly now. I think I am going to go with heart condition, and the really bad flu description, since I'm SO fatigued. (if anyone asks) Quote Link to comment Share on other sites More sharing options...
FarmerAmy Posted July 28, 2012 Report Share Posted July 28, 2012 I tell people that I have difficulty standing up. If they ask more questions I tell them I have a fainting disorder (even though I've never passed out). The word "fainting" really seems to resonate with people and they get it that I cannot stand up. Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted July 28, 2012 Report Share Posted July 28, 2012 I say heart problem; that explains most of the symptoms. I have found that when I go to the ER and tell the triage nurse I have a heart problem I don't have to wait behind people with broken legs, back pain, etc. I usually get right in! Quote Link to comment Share on other sites More sharing options...
peregrine Posted July 28, 2012 Report Share Posted July 28, 2012 I tried explaining it as "no blood in my brain, this is why I am silly and feel lightheaded all the time" to a friend. After that I then tried the "running in place all the time" explanation that is on DINET. She said the latter worked much better for her to understand - I think it explained the fatigue much better. Quote Link to comment Share on other sites More sharing options...
spinner Posted September 16, 2012 Report Share Posted September 16, 2012 i say i have a somewhat rare neurological disease Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.