Travels with Chronic Illness, Chronic Pain, and Amica

19 Jul

final mapTwo days ago, my dog and I returned from a 10-week, 12,000-mile road trip across America. It was the greatest thing I’ve ever done in my life, absolutely. So many mornings I’d shove off from wherever I was, looked at the map, picked out a spot that looked cool to breeze through, stopped at spots I happened to discover, and end up wherever, whenever it was time to stop.

There were challenges of traveling with a dog. Sometimes finding a pet-friendly motel was tricky. The heat was a major factor at times. I couldn’t leave her in the car and go explore a museum. I couldn’t walk her down a scenic trail or explore a city. Also a lot of motels have strict policies against leaving a pet in the room, which essentially imprisoned me in my room if it was too hot to take her out or leave her in my car. A couple times I snuck out anyway. She’s a harmless old lab mix and doesn’t even bark because she now has a hearing impairment, and she’s never been one to just bark for the sake of it.

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The advantages of traveling with a dog begin with sometimes not being able to do the things. It saved me money! She was with me when I walked the historic downtowns, so I couldn’t exactly go into the cute shops or the nice restaurants. She helped me make friends. It’s not hard to make friends when traveling alone, but when you’ve got a giant cute furry animal, it’s super easy. She was protection. I don’t think I would have camped in those secluded national forests had I been alone. And when I was at that one really sketchy motel and forgot something in my car, I took her out with me, even though the car was parked at my door. She was a companion. Oh yes, we had long talks on our long drives. Mostly one-sided. And she inspired me to do things I otherwise wouldn’t have. It became, Amica would love this; we’ve got to do it!

Traveling with chronic illness and chronic pain had zero advantages and plenty of disadvantages. I found I couldn’t camp as much as I wanted to because my arthritis and degenerative disc disease has progressed to where my cot really messes up my back. Some of the mattresses weren’t so friendly. I got very tired. There were a few times when I went out to commune with the locals and it was a serious push to do so. That used to be easy, and a given. Even though I was on the adventure of a lifetime, depression would still show up and hang a sheen of gloom over the paradise I was supposed to see. I often had to book an extra night wherever I was, regardless of cost, because I needed to rest through a little flare. My back hurt in the car. My hands hurt while writing my book. The blaring sun made me want to punch it out of the sky. The bumps in the road felt like I was being kicked in the head. My IBS gave me some really miserable drives, if not the urgent rush to find a bathroom, then the severe bloating and how awful it was to have my gut folded up in the sitting position for hours. I’d get vision problems that made it hard to see when I was driving or trying to watch the buffalo.

SplatThese are all things I have whether on the road or not, though. And while travel is a trigger for fibromyalgia and other conditions’ flares, for me, I often get the opposite effect. Yes, all those things above were going on, but given everything I was doing, the 12,000 miles, it’s a miracle I only had one asteroid day all along.

I returned to my home state Tuesday night and to my house Wednesday morning, and I’ve been at a steady freight train this entire time. I’m so horrifically tired. I don’t want to be around people because any talking feels like they’re screaming. It causes actual pain in my ears. I ache all over. My problem area in my lower back feels like a half dozen giant dull knives lodged in me. It’s hard to get comfortable, it’s hard to move. Simple chores make my heart race. I feel overwhelmed. Dizzy. Some friends 20190402_090143.jpgof mine hurt my feelings and I’m totally obsessing over it and can’t replace it with better thoughts. My stomach is hugely bloated and painful and I don’t want to leave my house because there are no clothes to wear comfortably in 90+ degree heat when I’ve got exercise ball Swall.

I feel way worse now than ever on the road. How can that be?¬† Is it the heat? I think, for me, it’s the lack of adventure. When I’m on the road I feel truly at home, and full of joy. Joy is a spectacular medicine, for prevention or treatment.

I’m back at my house and am without that flavor of joy. I think that’s why I’m in this flare, which was triggered by long days on the road with too little sleep as I pushed to get back, then the crappy weather. Because I was used to enduring these things mostly without a flare – due to that joy medicine – I thought I’d only be depressed when I got back, because I’m not there anymore, but I’m genuinely enjoying my house. I love my cozy, crumbling old digs. It’s been a comfort, but not enough to combat this flare.

There is actually one really big thing I gained that it took coming home to get. Maybe this is the great thing I can share with you. You know, before you go on a trip, you have all that time looking forward to it? That’s one of my favorite parts of the trip, actually! Shopping for things to take along, poring over maps or travel books, daydreaming. It’s like buying a lottery ticket, except with this one, you know you’re guaranteed to win something. Then is the trip itself, and that is such a joy! You’re in it!

When you return, both are gone. You no longer have the trip, you no longer have the trip to look forward to. But here’s what I discovered I’ve got now. I’m now the woman who did that. I’m now the woman who traveled with her dog across the country for 10 weeks. That’s really cool.

20190701_185619And so often I see something or do something and it takes me right back. I was brushing my teeth this morning, and suddenly I was in the little yellow bathroom of my motel in Butte, Montana. That keeps happening, and I love it.

Meanwhile, I have to get myself feeling better, and all I can do is just let it be. I’m not guilting myself over negative thoughts or pressuring myself to get out of that sadness. I’m letting it be. It’s OK to not be jubilant all the time. I’m not cutting the weeds or sweeping the cobwebs off the porch. That needs to be let be for now, too. I’m not even mowing my lawn. I’m exhausted, I hurt, and it’s horrifically hot outside. I’m resting. I’m wearing frumpy clothes. I’m keeping only the essential obligations and adding no more. I hate this flare, but I’ve got it, and I’ll just be waiting it out without pressuring myself to feel a way I don’t. I’m eating the right foods and resting. What else can I do? Nothing. Well, except maybe go on a hunt for joy.

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2 thoughts on “Travels with Chronic Illness, Chronic Pain, and Amica

  1. Flares suck – they suck the energy, joy, sense of humor and resilience out of you. Flares however always subside eventually, so you’re absolutely doing the right thing – rest, take care of yourself and wait it out! As far as I’m concerned what you did with Amica is akin to summiting Everest. Congratulations on your epic journey! I hope this latest flare passes soon. xoxo

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