"Where there is creativity, there is hope." ~ Donna Karan




Screw you chronic illness, I'm going to California!

by - Monday, December 30, 2013

California bound

This week I am leaving my homeland (Australia for those who aren't aware) for the first time, with my family, to go on a trip of a lifetime. We're off to check out California for three weeks.

Am I feeling well enough to manage a massive trip like this? Absolutely not. But I'm going anyway, because I want to. I want to soak up new surroundings and enjoy exploring and experiencing a different country. As if I'm going to say no to going to Disneyland, Universal Studios, the Grand Canyon and a sleigh ride at Yosemite. There's no way I am staying home while my family live it up in America. Just not happening. I've missed out on a lot of things thanks to chronic illness and this trip ain't gonna be one of them. We may never get another opportunity to travel overseas as a family again either...so heck, I'm going!

People keep asking me if I'm excited. Well I am, but I'm more overwhelmed by the enormity of it, to be honest. I think others are more excited than I am. It's kind of hard to get excited when all your teeth ache and you have a throbbing head. I've been trying not to think about it too much because then the "oh heck, I feel dreadful, how am I going to do this?" thoughts start stressing me out. 

The fifteen hour plane trip alone is enough to send me into a pain flare and a post exertional malaise meltdown. And then there's the whole jet lag and getting accustomed to a completely new time zone that is a day behind, while getting used to taking meds at different times, thing. This holiday is my Mount Freaking Everest. It's not cruisy. We're not just going to sip cocktails by the pool, sleep in and go out for brunches and casual strolls. It's a full on sightseeing-get-up-and-do-something-everyday kind of holiday. Our itinerary is pretty jammed packed and everyone has something in particular that they want to do or see. (I have requested shopping and a Magnolia Bakery visit.) We're moving from city to city every few days, too.

It is highly exciting though and I am trying not to let stupid chronic illness rob me of too much of this excitement. However, I am really disappointed that my health hasn't improved because I'm going to have to make many sacrifices to try and manage this trip. A trip like this isn't easy for someone dealing with a mixture of pain, side effects and chronic fatigue, so I'm just going to have to suck it up and use a wheelchair for the bulk of it. I'm going to have to pace myself and be selective about what I chose to do. Particularly at theme parks. I wish I could just go crazy and do every single thing like everyone else but I just can't, I'm just not well enough. I have to be very careful about not over doing it which will suck, especially at Disneyland when roller coasters are calling my name. But I have to minimise the impact of post exertional malaise daily in order for me to get through the three weeks and enjoy it more. I'm also going to have to watch what I eat which will be tricky considering we're eating out most of the time - oh the temptations!

I wish I didn't have to do (and think about) all these things, but I'm determined to have fun and enjoy myself as much as I possibly can despite my crappy symptoms. Thankfully my doctors have agreed to letting me take some Prednisolone (a steroid), which is by far the best decision they have made this year, haha. So hopefully that will be a great help like it has been on holidays in the past. 

I'm going to damn well climb my Mount Everest. Screw you chronic illness, I'm going to California!


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