Traveling: Bought A Ticket And Cancelled It...

[Becia]

So, it's been suggested by a couple of my doctors to try and a trip. Searched flights to tx for a few days, and even took the step of purchasing a ticket this afternoon... And then panicked. I debated for about an hour of "am I strong enough for this? How will I manage away?" And literally was in tears. I called my dad even to try and get someone to talk me that this was a good thing.

I canceled it within an hour. I feel like a failure. I'm so terrified of going, knowing I'm gonna crash, people aren't gonna be okay with it and it's so hard to understand everything going on.

How do you overcome this? I wanna go and have fun, not have fear. I arranged a direct flight and had a ride from the airport, but trying to arrange everything else while I was there wasn't happening.

Add in the fact that my doctor told me yesterday that I'm probably as good as I'm gonna get, in terms of treatment...it just hasn't been a good week.

Maybe someday I can try buying a ticket again.

[yogini]

Can you build in stages, like trying a day trip first? Is there someone that can travel with you?

[Gerrik1]

Hi Becia,

I have flown some since I have been Dx over 10 years ago. And it has gotten a little harder each time but I can still do it. I wear my support stockings, I hydrate myself a lot before the flight and during the flight and that makes me have to void so I have to get up and move which is good. On take-off my heart rate goes up and I feel my B/P dropping. I have to sit and deep breath and just try to relax.

You have to give it a try or you will never know. Get wheel Chair transportation to your gate and then you can get on the plane right after 1st class. You will not feel as rushed. When you land get transportation again. That will help lessen your symptoms. Good luck with trying again.

[looneymom]

I would encourage you to try again. It's important to be with family and friends. The motel idea sounds like a good suggestion. Try and find a package deal with a room. It may be a better deal for you. Take your wheelchair with you and traveling with a friend might also be a help.

[Becia]

I financially could get a hotel, but I would have had $23 left after all said and done. It bothers me that "Hey ask for help!" is what I get told so much, but when I do, everyone retracts back. And I know that they haven't dealt with me yet, and I've been giving them all sorts of info as they ask for it, and I know it was also 3 weeks away, but still couldn't make myself go through with it. Which was a good thing, because I called my lawyer today for my disability, and told them I was trying to get away for some family business (which I was going to do while there in the state), and they said if they found out I could travel, that ruins my case, so here I am.

I'm not supposed to just roll over and let the world pass me by, and I don't want it to. But I also couldn't handle spending that wild amount of money, and then sit in a room all day down there because everyone who said they could help me, all of the sudden can't, or won't respond to my calls or emails.

Maybe someday again. Maybe I just need to take a weekend and go to Columbus up here. That way I'm only a couple hours away from home, not having to haul my IV supplies, and there's public transportation.

On a good note though: I found out I qualified for public housing and assistance about two hours after I cancelled my flight. Since I'm basically starting over from scratch (I live with friends, and didn't bring much with me when I moved, and my sister sold everything else I had), I get to outfit my home/apartment how I want to, as well as have a service/therapy animal. Maybe I can look at home furnishings and accessability items when I'm there. And maybe even bring back my therapy animal

[blueskies]

Hi Becia,

I'm glad to hear that you've got your public housing and are getting a service dog. That's some good news.

I don't fly anymore. I did for years post diagnosis but it seemed each flight usually got harder than the one before. Two years ago, flying to my daughter's wedding and back, well that was the last time - and I can't see me flying again anytime soon. I've flown with extreme migraine (because I had to get on the plane to get home). I've flown needing to spend most of the time in the bathroom which pissed off the other passengers because of the only small number of toilets -- and didn't they let me know I was 'selfish and inconsiderate.' I was so embarrased. Last time, flying to my daughters wedding in some resort that had been decided on -- none of us lived within 600 miles of the place -- well the whole experience was a stressful one. Instead of being able to focus on how gorgeous my daughter looked and what a happy occasion it was my focus was on 'can I sit long enough for her to be married in this church?' 'and take the frigging pictures already, I have to sit down. ' All in my head of course. No one realized what was going on inside me. Until after the actual wedding, just after we got to the reception I was sitting talking to a family member and went pale (apparently) my vision greyed out, the sweating episode came on so profusely that my mother of the bride wedding clothes were soaked through almost instantly. It was gross and I felt gross. And really ill. My son got me back to my room. The few days following which were supposed to be the time to go the beach and walk in the wetlands (ha!) I stayed in bed in the airconditioned room and tried to get my strength back to fly home. I felt more like I was going to the guillotine than just going home as I approached the plane. There was no sense of achievement when I got back from the wedding although I told myself there was. I got to hear, 'see what you can do when you really want to, you never let people down, why do you think this is going to happen.?' What's the point in explaining. I have this big family holiday coming up in September and although we will be driving I'm dreading it. But I worked out that if I don't go I will be left home alone for 2 weeks with no one to call on or visit me, do shopping for me or anything should I need it, and I'm actually more frightened by this prospect. Since POTS, I have managed to spend up to week at a time on my own. Although, I must say if I'd had a choice I wouldn't have chose too. The idea of me spending two weeks alone at home in the state I'm in at the moment is daunting. I'm not sure what I am going to do. Stay home alone or do the long drive and hope for the best. Already I'm being told I'm being a nuisance by not 'just' flying. These long haul flights/drives for a holiday just drive me crazy. Two hours drive from where I live is a beautiful coastal town where I can manage to holiday - when you mentioned a weekend in Columbus and how you'd manage it I could fully understand.

blue

[Becia]

I have a hard time driving 40 minutes away sometimes. I go out to lunch with some people after church usually every sunday, and the days where we go out of town for something different (because we have a small town with limited options), it kills me. Usually I try to nap in the time, but I'm not comfortable, my feet are down, and I'm usually exhausted beyond compare when its finished. My plan is to maybe try Columbus, go up there and have a good nights rest, go to the mall the next day, do my wandering around for a few hours, and then head back to the hotel to rest. I do plan on going out to dinner to a fancy resteraunt just because its nice to go places like that every now and then (and the one I want to go to is very quiet, lol), but i think just being at the hotel will be nice. Its not my home.

Sometimes I crawl down the stairs to the basement when the light is too much for me, or I can't cool off, or just need a change of scenery. I kinda view the hotel that way. I view the fancy dinner as a chance to feel worthy. I know someday I'm gonna have to drive with someone to TX to take care of everything, and I know someday I will probably have to fly (and I loved flying before, but now everything has changed so much with my body, I'm terrified), but right now... I'm so dizzy with this new flare. I ran my own feet over with my chair because I was trying to keep from rolling into the wall. Taking a shower has become a monumental task right now because of the picc line and the fact I'm passing out easier for some reason.

I just want to escape for a day or two. I might even just spend that time sleeping instead... on the days I sleep here, it worries those around me. Sometimes I'm just so exhausted.