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

The craziest thing I've done with chronic illness

by - Monday, April 14, 2014

"Adventure is what happens when you just did something stupid." - Professor Bernie

I nearly cried when I was handed my boarding pass.
Enduring an arduous 17 hour flight (and airport waiting time) then immediately beginning a 3 week long road trip around California is by far the craziest thing I've done with chronic illness; both in a good and bad way. Those 3 weeks were the most longest, challenging, awful, and yet amazing weeks of my life.
I'm pretty sure anyone with a chronic illness will understand exactly what I mean by it being crazy in a good and bad sense, but I'll go ahead and explain my experience travelling long distance with chronic pain and fatigue following me every step of the way.

The flight over

17 hours is a LOOOONG time in the air even for the healthy, but for someone struggling with fibromyalgia and chronic fatigue syndrome; it's hell. Economy was more compact and claustrophobic than I expected it to be, and the lack of leg room was less than ideal for someone with chronic pain conditions. As soon as I boarded and got a glimpse of our seats, I thought: are you kidding me! I can't sit like this ALL THE WAY to Los Angeles. How am I supposed to sleep basically sitting upright when I have fibromyalgia?

Well, obviously I had no choice, I had to do it. And I did survive the ordeal, but gosh was it extremely difficult. I didn't get any sleep that night on the flight over - not even five minutes. Who can sleep upright with fibromyalgia? Muscle pain seared through my body the entire flight. Being unable to change positions or get up for walks frequently (due to a dimly lit plane, turbulence and people sleeping with their legs stretched out in the aisles) just fueled the pain.

Having never travelled halfway across the world before, the thought of such a long flight with chronic pain was incredibly daunting. I didn't fully know how bad it would make me feel and how much more it would cause my symptoms to intensify. I mean, I knew I would feel bad and I knew my body would probably struggle but I didn't know exactly what to expect. As I said, I've never pushed my body to travel hardcore before. I guess that's part of why I made the crazy decision to go.

Even though I was a bit hesitant about going and afraid of the post exertional malaise that awaited me, there was still some crazy part deep down inside of me that still insisted on going. It was desperate for adventure, fun, and inspiration. And it was determined to climb Mount Everest to get it.
But I was right to be scared. The post exertional malaise that knocked me for six in that first week after stepping off that wretched long flight was brutal. Absolutely brutal. Words seem so inadequate to describe it.

Here's what I posted on facebook when I arrived:

"I made it to California guys! I feel bloody awful, but I'm here. That was the longest and worst 17 hours of my life. I would say never EVER again to travelling that distance with chronic pain and fatigue, except I have to do it all again to get home. There are no words for this buggery but I suffered to get here so I'm going to try my best to somehow enjoy it."

Had I known exactly how horrible I would feel when I could finally plonk my suitcase down on the hotel room floor and collapse in a sobbing mess; I probably wouldn't have gone.

The road trip
My time in California was both enjoyable and most unpleasant. At times I had to push my body far beyond its limits and suffered dearly for it. Many days I was in chronic fatigue hell. I felt constantly dizzy; brain fog was twice as bad. Waves of nausea washed over me and a sore throat kept reminding me of what a dumb idea it was to travel so far with so many symptoms that intensify after even minimal exertion.

While it was fun to do and see new things, the extra symptoms were no fun at all. There were many days when I felt far worse than what I have after surgery. There were times  when I wished I had stayed at home. There were days when I was terribly cranky and angry. The first week especially sucked as the post exertional malaise was incredibly intense at times, and while my body was trying to recover from the flight over, I pushed it to do more because I didn't fly halfway around the world to miss out on Disneyland and sit in a hotel room feeling miserable all day.

To be honest, I hardly enjoyed my first week in California. A lot of the time I hated it, and I hated that I hated it. Everything was just too overwhelming for my foggy brain and fatigued, achy body. Being in a different country just isn't cool when you're struggling with a major upswing in symptoms. I was emotional, I felt negative about the rest of the trip, and I cried a lot. I was a wreck.

The crowds, different traffic, different food, getting used to another currency and the general unfamiliarity was just all too much and I spent most of that first week wanting to be back in my own country where I didn't have to think twice about things. The sensory overload was overwhelming and I struggled to adjust to a whole new level of sick; the constant dizziness was especially horrible.

After a day of sightseeing and two full days at Disneyland, I was even more of a mess when I arrived in San Diego. By that point I had reached breaking point and felt like I really couldn't manage any more fatigue or pain. I felt too unwell. I cried to my parents: I just want to go home. I'm stuck here for 3 weeks and I just want to go home. I shouldn't have come here. I'm so stupid for trying to do this, I knew I couldn't do it. I knew it would be too much for me. This isn't worth it, it's just not.

The only reason that I didn't pack my things and head home was because I felt too damn brain fogged, dizzy and generally ill to manage airports and flying on my own. This worked out to be a blessing though because the prednisolone I had started taking before the trip started helping more and I had some better days. I was so relieved about this as I was anxious about how I would cope with flights, theme parks, shopping, sightseeing and hotel hopping because I didn't know how well prednisolone would work, or if it would even work at all, as I've never had to take it since the onset of facial pain. And while I've found it helpful for managing previous short distance holidays, I was worried that it wouldn't be as effective with all the extra activity and physical stress that an overseas trip required.
Although I constantly felt faint, dizzy and nauseous, prednisolone did help me to cope better with the fatigue and reduced the impact of post exertional malaise some days. It allowed me to push the limits. I shudder to think how much worse I would have felt if I hadn't been able to take prednisolone. I don't think I would have been able to manage the trip because there were a lot of days when things were getting too much for me even on prednisolone.

Even while taking prednisolone, there were times I still wished I had stayed at home, but there were also a few "wow, this is so cool" moments too. Times that reminded me of why I chose to fly halfway around the world and suffer for. There were nights when I had a pounding headache, joint pain was bad, and I went to bed dreading having to get up to travel to another city; exacerbating the exhaustion. But it was also good to have some activities to look forward to doing. It was great to feel like I was achieving something other than getting out of bed in the morning. 
I especially loved my time spent in Vegas. So much so, I considered that it was kind of worth suffering for. And that's what I had hoped for when I boarded that plane - places and experiences worth the price of extra symptoms.
A 17 hour flight, 2 car trips and a helicopter tour to stand on the edge of the Grand Canyon (all while feeling dizzy and nauseous) was definitely all kinds of cray cray.
How I managed

To manage the trip I had to make a lot of sacrifices. I had to hire a wheelchair at theme parks, which I HATED (because a lot of people are stare bears), but not expending energy on walking allowed me to go on a couple of crazy rides here and there.

At Sea World I didn't go on any rides so that I could manage to do some things in Vegas.

I missed out on seeing David Copperfield with my siblings on our last night in Vegas because I had to go to bed so that I could get up early for the eight hour drive to Yosemite.

I didn't get to explore Yosemite National Park because I felt too ill from the drive up and needed a recovery day before the drive to San Fransisco.

I didn't do a Hollywood tour so that I could manage Universal Studios. 

There were nights when I didn't feel up to going out for dinner with my family and there were lots of shops that I wanted to go to but couldn't.

Having to miss out on all these things really sucked, but these sacrifices were very necessary for me to be able to do everything that I did do. And I forced myself to do an awful lot. I did too much even on prednisolone. In hindsight I should have rested much, much more than I did. I probably should have tried to pace myself better, too. But I didn't fly all that way to say no to things, and pacing wasn't always possible when following a healthy person's itinerary.

With the help of prednisolone (and other meds) I was able to do more in those 3 weeks than I have done in an entire year - I got my adrenaline fix on the hollywood tower of terror; I got to see animals I've never seen before; I got a caricature done; I went on the most insane roller coaster I have ever been on, twice. I marveled at the bright lights of Vegas. I flew over the Grand Canyon at sunset and I shopped on Hollywood Boulevard. Crazy, right?

So much was crammed into the 3 weeks that I had to do some activities back to back, which is not ideal when you have conditions that punish you for overdoing things. There just wasn't always time to rest properly, and there were quite a few things that I couldn't bear to miss out on. It was a once in a life time kind of trip, so of course I wanted to do as much as possible. 
I pushed myself (and ignored my symptoms) as much as I possibly could while taking prednisolone because I wanted to make the most of the 3 weeks. I could afford to push myself for a little while before it all caught up with me, so for the sake of a once off, I decided that the payback would be worth it.

In the last few days spent back in Los Angeles before heading home, I started feeling much better. Oh of course, just when it's time to leave! Such bad luck. I had more energy to do and enjoy things because I started to recover from the flight over, prednisolone worked more of its magic, and the dizziness started to ease. I felt much happier and more confident that I was a little sad about leaving because I wanted more time to enjoy myself. I'm so glad that I didn't leave still feeling miserable though, that would have been awful.
I know I complain about the horrible side effects of medications but I couldn't have done it without them.
The flight home

I was distraught at the thought of having to endure another flight home knowing full well how much sicker it would make me feel. I had to sit in a compact space for ANOTHER 17 hours with next to no sleep; making the burning muscle pain worse. I had to suffer the revenge of wicked post exertional malaise all over again, and I didn't want to.

Thankfully though, the flight home wasn't as torturous. The plane had a little more leg room than on the way up and I managed to get a few hours sleep after praying and begging God for it. The thing that really stuffed me on the way home? Customs at Melbourne airport. The line was a nightmare, and I, of course, did not have a wheelchair organised because I assumed that it wouldn't be anywhere near as bad as LAX - ha! And I was just too wrecked to mess around with trying to arrange for one, so I ended up half sitting and leaning on my luggage while waiting in the line.

I had prepared myself for the possibility of feeling even worse than how I felt arriving at Los Angeles during my first week back at home. After all, I had just spent 3 weeks holidaying like a healthy person off the back of a long haul flight that knocked me for six. I thought if I felt bad from the flight over without 3 weeks of physically demanding activities, I'd surely suffer more flying home.

But I didn't feel as bad as I had expected to. (Thank God!) I mean, I still felt something shocking, and the extra pain and fatigue in those first few weeks back at home really sucked but I coped with it much better because I could just rest. I didn't have to go anywhere or spend full days at theme parks. I didn't have to get up early or  pack my suitcase back up every few days to drive to a new place. Also, prednisolone worked better for me on the way home. It still took a good week for the dizziness (which was worsened by the flight) to disappear, but things were a little easier. Ah, the beauty of not overdoing it.

However, I found that I started to struggle more when I had to stop taking prednisolone after a couple of weeks upon my return. I've ended up paying very dearly for taking that trip, let me tell you.

So what motivated me to go?

Going overseas has always been a maybe one day thing; something I would do when my health improved. But considering that day probably won't come as soon as I was hoping for, I decided I was fed up with waiting and saying "one day." I was so tired of living vicariously through my friends overseas travels - I wanted to experience another country through my own eyes.  I wanted to make memories, and I wanted to have something interesting to talk about with other people for a change.

My main motivation behind the crazy though was the fact I'll probably never get another chance to travel with my family overseas again. The opportunity came up and I just had to put my faith in prednisolone and take it. It was a once in a life time holiday I didn't want to give up because of chronic illness - I've already had to sacrifice far too much. My life has been on hold for so long now and I wanted to live a little even if it was just for 3 weeks. And boy did I live it up!

Was the trip worth it?
Would I consider (now that I've somewhat recovered) going again? Absolutely not. Well, not unless my health majorly improves or it's for something really special like a honeymoon; which isn't on the horizon. If it can be avoided, I don't want to feel like I did during that first week of the trip ever again.
Was it worth it though? My suitcase full of new clothes, amazing nail polishes and lots of craft goodies says yes. So I guess it was, although, when my symptoms were at their worst I really didn't think so!
Shopped 'til I dropped, literally!

Seeing (and doing) new things was definitely good for the soul. I got what I went for; inspiration, adventure, memories, fun and some amazing experiences. That and a whole heap of gorgeous photos to scrapbook and stick up on my craft studio wall. I'm kind of glad I did push myself to go because aside from feeling yucky, it was a good experience. Had I stayed at home I think I would have regretted it.

I can look back at photos and say: "Wow, look what I did. I can do hard things. I can still achieve things, and there is a lot of hope for the future."

Screw you chronic illness, screw you.

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