Mostly just ranting, "fear" of trip coming up

[goofieslonglostsis]

*Rant alert!*.

So feel the need to rant. Last 2 years have been tough, medically. Way too long story short; had to fight nail and tooth to get the medical help I desperately needed and ran into many complications and medical mistakes. I've spent more time on bed and months not getting outside than I had "planned" for and it's taking it's strain. Although medically not very smart, the trip to WDW I took with my mom last year was a much welcomed break.

I had a nice "Month of The Mouse" planned for this year, starting off with doing the WB transatlantic cruise with DCL followed with a nice long stay at OKW afterwards. It was a dream coming true; wanted to cruise again with DCL and the longer the better. Knowing how wrecking the flight across the Atlantic is, it was a huge relieve not to have to do that one prior to a trip (am Dutch). All was arranged to make this trip possible with many loved ones offering much needed help, incl. my dad driving to Barcalona so I wouldn't need to pay overweight fees to fly in my medical stuff. I knew I needed a relatively very small thing done and urged the doctors to respect my Mousetime. It's holy, I need it, the Mouse and feeling of independance and "not being sick" I get while in Florida is my way of nicely dealing with the daily medical stuff. It would be respected. It wasn't as that small little thing turned into a huge ugly mess thanks to scr*w up after scr*w up. I had to cancel that trip. That hurt big time already, finding out my best friend planned on surprising me and flying to Barcalona was an icing on that cake.


Complicating factor; I was renting points for my planned OKW stay. Those familiar know the risks involved and so did I. Happens I ran into a great member, who let me reschedule within their useryear and availability for free. That made rescheduling an option. Still in hospital I decided to reschedule for upcoming december. In just 27 days I'll be crossing the ocean to the Mouse and "freedom". From the get go I knew it would be...... interesting. I knew I will take at least a year to recover the little part I can. I knew that december is way too early physically and I'll be overdoing it even when taking a much lower pace than normal. I know the risks, I know the price I will have to pay (each trip always comes with permanent decrease in health and this will be worse). But I knew it would be worth it. I knew already I couldn't face another winter with all it's cold, snow and uglyness it causes on my body. Another 6 months at least of being "convined to the house". Being mostly bedbound is a lot different in a not wintery surroundings. Heck; I knew I had to get out of the sick world of having a chronic illness. So, the trip was planned.

But honestly? I know I'll be going and I'll be having a blast and getting that refill I need. On the other hand, I sorta fear this trip. Can't really explain what it is. Fear of it somehow also being cancelled? Fear of the medical results? What is it? None of it is new to me. Cancellations; common. Medical stuff coming up; have a 100% record of that so far and know I can deal with it. It's been a rough time but on the other hand, I'm used to the lack of knowledge, lack of treatment and decrease in health that is directly linked to medical mistakes and arrogance. It comes as a package when having a little known syndrome that always decides not to fit into the "it should.......-standardbox". I'm sick and tired off it and taking some precautions to positively influence this but it will always be a fact of life for me.

I can't put my finger on it, but somehow I....... fear this trip. Fear isn't the perfect word but can't even find that in Dutch. Combine fear with apprehention, unbelieve, worry, I don't know. I know I'll find my way and will have a blast on this trip but I'm so unused to this feeling! I've done it all, know it all, but this one is new and weird. All I know is that I'm not my normal self when it comes to "trip sentiment". And it builds, each day we get closer to december first it itches just that bit more. Not just the "woohoooo, only...... more days" but also the "oops, darn, so close, it'll be fun but yeiks". I know I'll be having a trip that I wouldn't have wanted to miss but it really is a shame that the days leading upto it are so....weird.

OK, more than enough ranting. Anybody have any experience with this? How have you dealt with it and did it work or not?

 

[Bete]

Just be careful and cautious and don't overdo would be my logic.

The fear feeling may go away once you are there. Good luck.

 

[dclfun]

I can relate. I have anxiety about our upcoming December trip as I don't know when my chemo will be scheduled. Fortunately, living in Orlando, I can check myself into the hospital for one day during the trip to have it done ( I will start back with a 2 weeks on/1 week off schedule as soon as my wound heals). While I'm looking forward to shrinking the tumors that are growing, I'm not looking forward to being exhausted and somehow causing the rest of the group to slow down. I expect I'll be spending lots of time in bed too. If I had a transatlantic flight to deal with, I don't know if I'd be as brave as you!---Kathy

 

[I Love Pluto]

Relax - you're just "sick of being sick", and you can't handle any more "issues". You are NORMAL!

Anyone in your shoes would be apprehensive, but thinking about Mickey & Friends should help. Try to not worry about health issues and concentrate on the Mouse.

I hope that you have a FANTASTIC trip, and that you get a much-needed rest. Also - some much-needed happiness.

ENJOY your trip!

 

[Leota]

Relax - you're just "sick of being sick", and you can't handle any more "issues". You are NORMAL!

Anyone in your shoes would be apprehensive, but thinking about Mickey & Friends should help. Try to not worry about health issues and concentrate on the Mouse.

I hope that you have a FANTASTIC trip, and that you get a much-needed rest. Also - some much-needed happiness.

ENJOY your trip!

Absolutely - But I can totally see how the transatlantic flight would be really nerve-wracking. I was a wreck over my 3 hour flight with my issues. It wasn't so bad. I bought extra padding & prepared myself with fluids, ginger, a good book & music. I survived & since then, it's been pretty wonderful! Disney, as always, is so wonderfully planned for all kinds of folks & so attentive to guest comfort of any kind. The sun & Magic has worked miracles on this body. Yes, my issues are still there with me, but everyone helps so much that it makes it easier to handle.

 

[eternaldisneyfan]

I totally get it! I deal with lotsa medical issues, too. But if you'll read the trip report (link in signature ) you'll see that it can be done! you may have to go slower or do less but the magic is worth it!!

 

[goofieslonglostsis]

First up; thanks all for the replies.

I can relate. I have anxiety about our upcoming December trip as I don't know when my chemo will be scheduled. Fortunately, living in Orlando, I can check myself into the hospital for one day during the trip to have it done ( I will start back with a 2 weeks on/1 week off schedule as soon as my wound heals). While I'm looking forward to shrinking the tumors that are growing, I'm not looking forward to being exhausted and somehow causing the rest of the group to slow down. I expect I'll be spending lots of time in bed too. If I had a transatlantic flight to deal with, I don't know if I'd be as brave as you!---Kathy

Obviously you can relate. Are their any expectations yet as off to when they think the wound will be healed and thus chemo will be scheduled? Maybe if we'ld feel well enough we should have a bed-in-meet.

Brave? Doubt that's the word. Foolish, perhaps? I consider it the price I have to pay. Luckily have more than plenty of experience with it and know how it will wreck havock on me. I always take it into account along with all the other "parts of the price" when weighing if the benefits are worth it. And it still is. I'm all about quality of live and simply keep finding myself to the conclusion that it's a "no brainer". We all know the WDW-experience and the "simple" joy of being able to just do whatever or whenever I want something outside of WDW is amazing. It might have it's limitations, but I experience it as total freedom compared to my regular daily level of public life accessibility. A trip for me always comes down to keep following my passions and dreams, having a sniff of total freedom and "not being sick/disabled". It fills the batteries to deal with the rest of the year a lot nicer. My doctors have given up even trying to discuss if it's smart physically, they know I'm aware that it's totally not but a big must nonetheless. As long as my medical status isn't a "red light" for travelinsurance, they'll simply accept it and help where possible. So brave? Not really.

Relax - you're just "sick of being sick", and you can't handle any more "issues". You are NORMAL!

Indeed I'm just sick of it. But I've done trips before where I was in such a mode and it never would have a black cloud over a trip or the time counting down to it. If anything it would just strenghten my enjoyment and eagerness to go. But this..... oops-itch is new for me.

Absolutely - But I can totally see how the transatlantic flight would be really nerve-wracking. I was a wreck over my 3 hour flight with my issues. It wasn't so bad. I bought extra padding & prepared myself with fluids, ginger, a good book & music. I survived & since then, it's been pretty wonderful! Disney, as always, is so wonderfully planned for all kinds of folks & so attentive to guest comfort of any kind. The sun & Magic has worked miracles on this body. Yes, my issues are still there with me, but everyone helps so much that it makes it easier to handle.

Thanks for the tips! As said before I'm "luckily" used to the transatlantic. Done them and longer flights often enough to know what I'm getting into. A few years ago I had to realize flying eco was no longer an option healthwise. Very expensive decision but a needed one. Since it's still a "need to survive this, way too much" flight, I was so over the moon to be able to combine WDW with the transatlantic cruise as first planned. No such thing, alas. It won't be a picknick, but in the end it'll be worth it.


Hopefully?? we might have found the cause of that "yeiks, help"-feeling. After opening this topic, my GP contacted me later that evening to inform me that my bloodwork didn't come back great. Expected that, but he had a surprise; I still have a very severe vitamine D deficiency. This totally shocked both of us, as we found that out over 2 months ago and I've been on treatment for it ever since. My levels should've been a lot higher by now. We have an appointment next week to see what we can and need to do with this. In the meantime he told me this might explain me not feeling like myself. Apparently it can cause all kinds of problems on physical and mental level. While obviously thankfully not depressed, I have been dealing with a feeling of not being my usual self and it could very well be linked as could the physical problems we've seen come up lately. Let's hope that's just it and we can tackle it a.s.a.p.