Couldn't Go On Vacation

[joiedevivre516]

Hey y'all:

I was supposed to go on vacation today - fly up to Rhode Island for 10 days to do some sailing and see my grandmother, but my POTS got so bad throughout the day that I couldn't even make it into the airport, and my mom took me straight back home to bed.

We're going to try to go tomorrow morning, but of course that means we won't really get to do all the Easter stuff that we were hoping to.

To make matters worse, my dad's all angry at ME for messing this up (even though he wasn't coming up to Rhode Island in the first place, and there was NO financial penalty for switching the tickets to tomorrow), and I'm just getting so frustrated with his ignorant "you can control this; it's your fault; why are you being so weak" attitude.

It just breaks my heart that people I love are disappointed in me for something I can't control.

Kate

[sally]

Hi Kate,

Luv your name by the way. I'm sorry you are not feeling well enough to go on your vacation today. I can't count the number of times that we've had to cancel or re-arrange plans to accomodate our health. It is a frustration of having a chronic health issue. Maybe if you explain to your father that you understand his frustration but it doesn't compare to the frustration you feel and deal with and explain how it impacts you.

If he is not open to listening, I would just wait until he comes down with a virus of some sort and then tell him that is exactly how you feel on a daily basis and now does he understand? Some people will come around and then again some people never get it.

It sounds like at least your mother is supportive.

good luck on your vacation and feel better

[persephone]

I feel the pain! Just last week I had to cancel a conference in Ireland that I was meant to be attending. It was something I had dreamed of doing- giving my first paper. I lost my flight- no one will insure you if you have a condition relating to your heart or blood pressure here in the UK.

The WORST instance I think was last summer. I'd just got my funding through for OXford- my friends up in Scotland had the champagne chilling in the fridge- I was booked on an afternoon flight; we were going to party the night away and stay up til dawn, when we would have a champagne breakfast on the beach.

The day before I was due to fly, I was in the supermarket with my mum, getting some grub to take up with me and then BANG- the chest pain started. When I got to the Drs, they took one look, put me on oxygen and called an ambulance. My ECG looked terrible, my blood pressure was all over the place and at the exact time my flight should have left the next day, I was in respiratory arrest after having a bad reaction to a drug I'd been given to stop me vomiting with the pain.

Man, it was rough. And I felt exactly like you do now- disappointed, gutted and all the rest. It's a shame your dad can't be more understanding; maybe you could say to him, gently, "No matter how upset and annoyed YOU are Dad, I can tell you, I feel it ten times more!" Or ask him if he thinks you would CHOOSE to be like this?

I know you must feel gutted; but as I am always saying, and as I've even said in my story on the DINET website, pots might affect WHEN you do the things that matter. But keep pushing and it won't stop you doing them.

Good luck and Happy Easter. You will appreciate the time with your gran all the more when you DO get to her!

[joiedevivre516]

Thank you all so much! At this point I'm just glad I can go tomorrow - hopefully things will REALLY work this time. Happy Easter to all of you!

Kate

[dawn]

]Kate,

Wishing you luck tomorrow.

I remember last summer, my nephew was getting married.

I got everyone in the house ready(clothes ironed, found ties and dress socks etc.)

Well, my turn, I took a shower, stood in front of the mirror to put on makeup and passed out.

My son pluncked me in bed.

Woke up 3 hours later.

Never made it to the wedding

I can't tell you how many times something like this has happened in the past 15 years.

Some family members never get it. I sent the pamplet on dysautonomia to all my friends and family

in their Christmas cards :rolleyes.

Happy Easter.

Dawn

[Ernie]

Hi,

The only certainty I have with this disorder is that my life is unpredictable. I mostly live on minute at a time. I learned to be very flexible and adaptable. I had to cancel so many things and now I barely plan mor than a few hours ahead of time.

[Guest sonotech]

Hi Kate,

I hope you at least got some rest! It sounds like at least your mom understands how bad you were feeling.

Some day your dad will come down with a bug or virus that will really drag him down and then he might understand what you are going through.

I am a FIRM believer in "everything happens for a reason". Maybe you werent meant to leave town on THAT day, who knows. I am sure you will make the most of the time that you DO have left on your vacation and TRY not to let your dad bring you down.

HAPPY EASTER,

Laura

[bttrflyamby1981]

Hi Kate,

I hope everything works out for you tomarrow.

I'm sorry your father isn't being supportive. I know it can make us feel even worse when people tell us that we can control are symptoms. It's makes it that much harder when it's family. Just remember what goes around comes around.

Today I ran into an old freind and we were updating eachother on our lives. She said she wanted to lose weight but was to lazy to work out. I made the coment that I worked out but I had exercise intolerance and had a hard time working out and had to be careful. She then told me that it sounded like it was all in my head. I WAS VERY HURT AND ANGRY. Anyway, just wanted to let you know your not alone.

Best wishes,

Amber

[avais1]

Hi Kate,

Don't feel too bad, we have all been right where you are. I remember my story well. I didn't know I had POTS yet, it was February 2003, and I was leaving for a week long vacation to the FLorida Keys. Since I had been sick, I figured a good vacation was all I needed (again, not knowing I had POTS). The night before we were to fly out, I started vomiting, passing out, you name it. I sent my fiance on ahead without me, thinking I had a 24 hour flu bug. I switched my flight to the next day. Then the next. Then the next. Finally, my fiance just bagged the trip and came home. So much for vacation. I ruined both mine AND HIS. I felt horrible. This has happened many times since, but we have learned that this is just the way life is now. I still plan things, and if I make it: great. If I don't: ****** that's okay too! None of us asked for this, and you may need to remind your family and friends from time to time. It does get easier as time passes.

I often remind my fiance when he is sick. Especially with the stomache flu. I'll tell him to "buck up", take some pepto, and let's go for a walk. Or hop a plane. Or, I know, let's take a 6 hour carride somewhere! He gets the point.

Good wishes to you!

[MightyMouse]

I sure understand the pressure and the guilt. I actually got grief from some of my relatives for missing a funeral on the other side of the country...while I was IN THE HOSPITAL as an inpatient for severe asthma, pneumonia, and a nasty sinus infection. My stay was complicated by the fact that I had an allergic reaction to the IV antibiotics, which extended my stay by a few days.

Over time, I've had to let go of the guilt feelings. While there are times when I've set my own symptoms off by pushing too hard, most of the time, I've got no control. I've become more vocal...although sometimes I'm still more sarcastic than I probably should be to my relatives. OY. Hey, we all have our faults. When my family pushes me too hard, I'll fight back, and no holds barred if I need to do so...but sometimes they just push my buttons and there's a history that replays itself. The past few years, I've been working hard at being the better person and it's really paid off.

I can tell you that it's taken nearly 20 years of work with my mother, in fits and starts, and with me making my fair share of missteps...but she's finally gotten to a more caring place with me, more genuine. Just last year she told me she read the DINET main site, and it scared her. She was afraid for months to talk with me about my health because she's scare of losing me. It was, in my view, one of the most honest conversations we've ever had in my 41+ years. It only lasted 3 minutes, but to me it was a precious validation of me, and her acceptance of my real life hurdles.

Only time and careful discussion seemed to help me. Hope that they help you. Nina

[joiedevivre516]

While time will probably help with the rest of my family (and my mom's already doing great), I don't really foresee things getting better with my father, no matter what happens. He's been like this since I was born, and has both mental/emotional and substance problems, so until he chooses to get help and deal with that, I don't really think he'll be any better at relating to me or my mom. I've had REALLY serious health issues my whole life - I've been in and out of the hospital, had numerous surgeries, and have been bedridden for periods of time. He's never been able to adjust yet, so despite the fact that I was only just diagnosed this month and have only been actively pursuing a diagnosis of any kind for about 3-4 years, he's had plenty of time to come to terms with my health issues, and never has. I don't really believe that someone with a substance problem CAN relate well to other people, so until he deals with that, I don't really think things will get much better in terms of his relationship with me. I'm afraid I just had to vent!

Thanks VERY much to you all for yor input and support! Happy belated Easter!

[MightyMouse]

Kate, I didn't necessarily mean that time would make THEM deal with it better...more that it becomes easier for you to accept or at least expect what will come from them to you. Like you, my family has it's share of very dysfunctional members who will NEVER be in my corner for health issue or otherwise.

I hope you can find some peace with your family, even if some aren't supportive for you.

Nina

[mtkim]

Kate,

I too have a close family member (sister) with the same problems that your father has. I have found that with her she can never get past her own things to ever look at anyone else's problems and be sympathetic. Please don't worry about what he thinks (I know he is your father and you probably will worry anyway). You have to put yourself first and do what is right for you.

About a month ago we went to the Outer Banks for a week and I think it was one of the bravest thing I have done in a couple of years. We always buy trip interruption insurance and that seems to take some of the anxiety out of it for me. Its great with covering things like if I would get sick right before we left that we wouldn't lose our deposit on our house that we rent. It also covers if I should have problems while we are gone. It would arrange and pay for the kids to get home and also for someone to stay with me until I could get home. The insurance is something that the rental company offers. I was very nervous about going and my family doctor put it to me this way "you can go down there and sit on the porch and watch the ocean and be sick or you can stay at home and look at Ohio weather and be sick". What great advice.

We had a very relaxing and uneventful trip. When I felt like taking a nap I did. When I didn't have the energy to cook we ordered in or went out and my teenage boy/girl 17-year-old twins even fixed my husband and I breakfast one morning (best breakfast on the Outer Banks).

Take care and do what you can when you can, not what other's might expect of you.

Kim

[MightyMouse]

Kim, I started buying trip insurance this year too! I really helps me not worry so much about 1) losing my vacation and 2) getting the stress from my spouse or other travel partners because I couldn't make it. I was suprised at how cheap it was the first time I bought it--under 15$ per trip per person. I'm thankful I've not had to use it, but glad to know it was there "just in case".

Kate, I hope your not feeling so badly about the vacation at this point. Nina

[persephone]

I looked at your website Nina, it made me smile! especially your explanation about the 8's in your smiley faces , or should that be 8:)