Travel & Invisible Disability

I am not a “normal, healthy person”. I have been diagnosed with a wide variety of “low grade” / “high functioning” disabilities. One was actually considered severe enough to get me financial aid and accommodation for my BA studies, but only accommodation by the time I got to MA because the state of Washington didn’t have enough money to give to priority 2 disabilities. Priority 2 or “high functioning” are considered to be people who are strongly impacted by a disability, but still able to care for themselves without outside help like an in-home nurse or expensive medical equipment, and mostly still able to participate in socially economically valued work with only moderate limitations or accommodations. They’re often also called “invisible disabilities” because … “You don’t look sick!”.

I don’t feel the need to list my diagnoses, or defend my illness. That’s between me and my doctor. If you want to learn more about invisible disabilities and how you can be a better friend/boss/family member to people who have them, please read more on the youdontlooksick website. This post is about what it’s like for me personally to travel abroad with an invisible illness and how I deal with it physically and emotionally.


The Background:

Just living my life I try to spend at least one day a week doing nothing, or as close to nothing as possible. I might do laundry or take a shower, or wash some dishes. And somewhere, there’s a “more disabled” quotes because I hate comparing disability or trauma because wtf that shit is relative not absolute, person who is like wow laundry! Laundry isn’t nothing; that’s like 4 spoons, are you kidding??

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*Follow this link to read about Spoon Theory in relation to Invisible Disability
If I go more than two weeks without this rest day I get pretty messed up. Again if you can’t imagine, think of how you feel if you miss two nights of sleep in a row. You can still go to work, but it sucks a lot and everything is harder.

Think of my body like a very fuel inefficient car. I get 12-15 miles to the gallon. Average is 25-30, and very fit people are like Priuses… in a lot of ways. You can’t turn a lemon into a Prius with diet and exercise. Even when I’m putting a lot of time and energy into my body, it isn’t going to do much better than about 20-25. So if I spend a lot of time, money, and effort I might be able to reach the low end of average? And then have no time money or energy to do anything else… yeah, I’ve tried it before, special diet, measuring all the food, exercising every day, and it helped me get in better shape, I could do more exercise, I could hike a bit better, I thought “wow this is so much improvement for me” until I went on a short hike with some very physically average people (not athletic types) and was left in the dust…

People say “you can do it if you’re determined enough”, but when you have a disability that limits your metaphorical mpg or spoons, it can take more energy to get to the healthy food and exercise than you get back by doing it. It stops being worth it. If you’re tempted to say “but…” or offer some advice, please, please, go look at the You Don’t Look Sick website first.
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In nearly every vacation/travel in my life before the summer of 2018, the trips were so short that even if I pushed myself to the limit of my ability, I could rest when I got home. This summer, I was on the road for 7 weeks and I learned the hard way that is too long of a time for me to “push through”.


The Buildup:

Paris:

Unable to keep up with my friend and her family, I wonder if there’s something wrong with me. I often struggle to keep up and I tend to think it’s because the people I meet on travels are a bit younger and more athletic, but I’m finding I really need more rest stops than the average bear my age and older.

It wasn’t until I was seated at dinner and realized I was struggling to mentally focus on what the kids were saying that I realized how tired I actually was. I don’t know how much is jet lag, how much is the weather, and how much is just my ever decreasing number of spoons.

I think once I’m free to sit and pause for rest and refreshment at my own pace it will be better? I don’t mean to complain (except about the heat) I’m having fun. I’m just worried about spoons.


Belgium:

(after returning from Sunday in Ghent) My feet reached a point of pain that is found only in uncensored fairy tales. I remember in the original little mermaid she felt like every step was walking on knives. Ursula had nothing on this OG witch. We’re talking Bruce Willis at the end of Die Hard levels of foot pain. I honestly expected blood when I took off my socks.

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I have a known medical issue in the left one and usually wear a compression bandage when I’ll be walking a lot. I think the right foot was forming a blister under a callous.
My back was almost entirely unwilling to bend. I really puff up and stiffen in the heat, and the more I stand and walk the worse it gets. I’m not trying to be a whiny baby, I went anyway. But it’s not a thing I can push through forever.

I ditched all my Monday plans. You can’t enjoy things if you’re too tired or in to much pain. Instead I woke up around 8 and made myself a Brie sandwich for breakfast and ate the rest of the chocolate (I’m in Belgium, for heaven’s sake) then passed out again until after noon.

Tuesday in Brussels: The high temperature today was only 16C. It was such a relief. I am in denial about how badly the heat affects me. But every time it cools off, I have so much more energy. This is not to say I was filled with energy today, but I went from feeling like the walking dead to merely slightly sore.

I’m having an early evening, more rest maybe another hot bath later on. I feel like such a broken human that I can’t keep going without so much rest. I don’t know why. I know I need to rest when I’m at home. I usually have at least one “do nothing day” a week to keep myself going. Yeah, that’s life with my invisible disability. It’s so hard to do that on holiday, though, I feel like I’m missing out or not talking full advantage and I just have to keep thinking of that night in Thailand when I hit the wall so hard I crashed. I am not giving up on adventure life just because I don’t have perfect health, I’m going to keep living to my fullest, even if that isn’t someone else’s fullest or even younger me’s fullest. I’m going to do self care and be ok with resting and watching cartoons on vacation so that I can really enjoy when I do go out to do things.


The Netherlands:

(Airbnb in Lanaken, Belgium. Nearest “city” Maastricht, Netherlands.)
It turns out misophonia sound triggers are a real thing for me. I had them in Saudi but was so emotionally wrecked there from other problems that they weren’t a huge change from my daily state of mind.

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It happened to me in Korea this year where a produce truck came and parked near my house and just left his loudspeaker going. I went from annoyed to panicking, my heart rate soared and I couldn’t think. I tried closing all the windows but the sound was too loud. It isn’t just volume, I listen to rock and roll super loud and love it. It’s about not being able to escape. The sound is an invading force, it’s attacking me and the flight/fight/freeze response in my Amygdala is triggered. This one is especially “fun” because it could be related to any one of my diagnoses, since it can be a symptom of several, but I’m not really interested in fighting through more doctors to find out since every visit to a doctor is a fight to be believed and treated. The cost/benefit of seeking help is a thing we have to consider very carefully when we have limited energy to invest.

Anyway, here I am in my Airbnb making coffee and reading Facebook, and the church bells start. Normally, church bells ding for the hour and then stop, but this day they don’t stop and suddenly I feel it starting. I jam my fingers in my ears and start humming to try and drown out the sound and every time I check it’s still going. Not even a tune, just ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding…

Then I’m just standing in the kitchen fingers in my ears trying to do parasympathetic breathing to bring my amygdala under control and I realize that I’m in terrible fear of becoming too broken to function.


The Breakthrough!

This is why the obstacles are hitting me so hard emotionally, of course heat and culture shock are contributing factors but this has been so much harder than previous challenges emotionally and I couldn’t figure it out.

It has been like peeling an onion to get inside this thing. Yes it’s too hot, yes there’s culture shock, and the nature of the obstacles themselves, the bathroom is too far away from the bedroom, the transit is unreasonably difficult, and the conservative old white colonialism-is-great attitude in the Netherlands was seriously harshing my groove especially compared with the vibrant multiculturalism of Paris and Brussels. And finally today I got to what I really hope is the gooey center of this Gobstopper of ick, the fear of being too broken to function, fed by all the above issues.

But this is it. I’m afraid there will come a point when I can’t manage. When my dream, which I just got a hold of these past few years, will slip away as my body and mind betray me and I sink back into a life of mere survival. I did that for so long: find the only job that you can manage with your existing disabilities, lie about them so you don’t get fired, spend 90% of your free time resting and hope your friends and family don’t give up on you.

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The Resolution

“What can I control” is one of my lessons from Saudi. Life is full of crap you can’t control, expat life maybe more so. KSA life? Woah. The point is to survive in that kind of mess you need to focus on the things you can control to maintain balance against the things you can’t.

In my case, that means a lot more “me time”. I was worried going into this summer that I wouldn’t get that. Even slow days involve a lot of variables and people I can’t control. I’m staying in other people’s homes. Even with a private room, there are elements I can’t control.

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Everyone understands how much it sucks to get sick on holiday, to feel like you lose precious vacation hours to illness but also most people think you should just push through if you can. I find I don’t enjoy things as much if I’m feeling like crap. I do what I can to prevent getting to the point I can’t do things, and sometimes that means spending hours resting when I don’t feel sick yet.

I’d love to be normal bodied. I’d love to be able to just go and do. I’m not saying disabled people don’t have worth or can’t enjoy life, but I don’t know anyone who wouldn’t rather have full functionality. It doesn’t benefit me to spend so much of my life resting except that it allows me to live the other parts more enjoyably.

I remember how devastating it was when I was told I was going to be sick forever and the long list of things I couldn’t do. I was so relieved when that turned out not to be as bad as the doctors told me, and I’ve been trying so hard to accommodate myself, but as I get older, my symptoms are getting worse.

Every year my body’s response to the heat it getting harder to bear. It went from ‘getting slightly swollen feet and needing more rest’ to ‘watermelon feet that stay swollen all summer and not being able to be outside for more than an hour before I just start shutting down’. If you don’t have a disability, you might not realize what ‘shutting down’ looks like. Watch a tired toddler. Or imagine how you feel after a very intense weekend of high activity and low sleep. Yeah, it can take ableds 16+ hours to get as tired as I get in 1-2 hours of high heat.

I tried to keep up with a faster walking woman I met at the brewery and got lunch with and had to quit because aside from the fact that I was feeling like I was at the gym instead of on holiday, I got a blister after just 15 minutes of walking at her pace. Yes, part of that is being “out of shape” but if it had been cooler weather I could have done better, I know because I do better with physical activity under 18°C. No hot yoga for me.

What is the worst that could happen? I think Thailand showed that. I ended up so thrashed I couldn’t do anything. Instead I have to try and make sure I’ve got the spoons to do the things I was most interested in or already paid for and I let go of the rest if conditions aren’t right. I’ll still do and see more than I would if I didn’t go at all.


The Aftermath

By Hamburg I came to terms with the fact that it is ok to just relax on the sofa with the windows open and enjoy the breeze from my bed. I gave myself permission to be comfortable without feeling guilty for “wasting opportunity”. I don’t have to go someplace less comfortable, that requires more clothes or money just because I’m in another country.

By Copenhagen the weather had returned to temperatures that were no longer destroying me and I found that I had the energy to get up at or before 9am and keep going until midnight or later for several days in a row. Even with better weather, after about 4 days of this I really wanted a rest day, but my friend felt very left behind because had to return to the Airbnb to long into work every afternoon/evening, so decided to push through to spend one more day with her. It wasn’t ideal for my health, but it wasn’t a catastrophe either. I was able to take my rest day when I arrived in Sweden.

Sweden was the best environment for my body and mind. The weather was great – cool and lightly rainy (some heavier rain, but I was lucky to always be inside or driving for it). My pain was mostly gone and my energy was way up. If it weren’t for the record of notes I kept in earlier parts of the summer I might have thought my memory was playing tricks on me in regards to how bad I’d actually felt before. How can a body go from being so inoperable to being mostly fine from something as simple the weather? I still don’t know, but it’s becoming increasingly obvious that I need to do my best to avoid high temperatures, and to accept that my limitations apply to long term travel, not just when I’m at home. It turns out napping on vacation can be pretty cool, too.

Malay Peninsula 10: When Things Go Wrong

It’s popular for people on social media and blogs to focus exclusively on the best experiences (unless it’s Yelp, then complain away). Sometimes I look at other people’s travel blogs or photos and think they must have the most perfect lives. And, then I wonder if anyone thinks that about me. My life *is* fairly magical, and I think the vacation to New Zealand was supernaturally blessed, but I would hate for anyone to think that it’s all perfect. Stuff goes wrong, sometimes catastrophically, and how we deal with that will impact the days, months and years that follow.


A Good Start

In the morning, I headed out extra early to catch that next bus and managed to get a few snaps of the famous street art on my way to the ferry terminal.

Amid the ferry terminal’s endless tiny shops selling convenience food and cheap souvenirs,  my eye was drawn to one stall that had what appeared to be handmade goodies displayed on a table. The stand was run by a husband and wife team, and the husband happily talked about his wife’s cooking until I picked out three goodies to try for breakfast. One was a flavorful potato pastry with delectable spices and what could have been pieces of dried fruit. 20170123_080706One was a glutinous rice ball wrapped in a leaf and filled with some kind of sweet coconut. The golden brown goodie was the one the husband most highly recommended: a spicy coconut bun in a wheat pastry (as opposed to rice) with a coconut filling similar in texture to the rice bun, but with a spicy kick. The coconut fillings were unique to my palate. It seemed like the coconut had gone through a ricer instead of a shredder. It was similar to vermicelli but also dried enough to be chewy without being crispy. The entire experience was delightful and I wish I’d bought 3 more!

A Scorpion in my Cocoapuffs

I left myself extra time to get to the bus station. Missing the bus would have entirely spoiled my day (although now that just seems ironic). As a consequence, I had nothing to do for about 45 minutes. The bus station in Butterworth seems well organized, but I suspect it’s a cleverly crafted illusion. As the time for my bus drew closer and closer with no sign of the bus anywhere, I began to get worried. When a bus pulled into the gate that I had been told by the ticket counter was my departure point, I got excited until the driver told me it was a bus to Kuala Lumpur. Definitely not where I was trying to go. The departure time on my ticket crept up and then past. I kept trying to get anyone to help me find my bus, but no one seemed fussed and said it should show up eventually. I spotted another traveler (the skin tone and giant backpack were clues) with a ticket that looked like mine. Trying to be friendly, I asked if she was trying to get to Kuala Perlis (my destination) too.

Allow me to do an aside on the expat/backpacker community for those who have not experienced it. It’s a tribe. And like all tribes, when we see each other out in the world there is a feeling of  “ah, one of mine”. The extent to which we aid one another or spend time with one another can vary from person to person, but most of the time when I greet another traveler, the response is friendly. Maybe they need help, maybe they can give it, maybe we’re just going to play a game of Uno or chat over a beer. Everywhere I’ve been, I’ve taken great joy in meeting both locals and fellow travelers. I’ve shared meals, cabs, directions, taken and given tips on what to do or how to get places, translated or been translated for, exchanged stories and when one or the other of us is ready to part, there’s no pressure, we just wish each other well because we all know that’s how it goes. So when I met a backpacker who was angry and mean it was like finding a scorpion in my cocoa-puffs. I was expecting something nice and got stung instead.

She looked at me sharply and asked in clipped tones where I was going. I replied that I was headed to Kuala Perlis, but before I could finish my sentence, she pointed back at the building and snapped, “ticket office”. Yes, I said, I already have a ticket, I just — again she cut me off with the single invective, “information” pointing once more at the main building. This was no linguistic barrier, her accent was natural and her tone and body language adequately communicated hostility. I was completely shocked and decided to stop trying and walked as far away from her as I could while still being able to see the bus stops to watch for mine.

I want to believe that something was going on with this woman that made her so grumpy, but the fact is, I approached her to share information (namely that the bus she was standing in front of was not the one listed on her ticket, and that the gate we wanted had changed, but was not announced yet) and she shut me down like…I have trouble even finding a metaphor of when it’s appropriate to treat another person like that. Everything I can think of is some kind of gtfo response to racism or misogyny. Even knowing now what I do about the trials and frustrations involved in traveling SE Asia, and having lived through my own travel induced emotional meltdown, it’s still hard for me to imagine what put her in the mindset that caused her to treat me so. Regardless of whether her mood was justified, it was demeaning and hurtful to be treated like that by another human being. It was made worse by the fact that I had no defenses up at all when it happened. It completely destroyed my emotional well being in that moment and for possibly the rest of the day.

The Transportation Worsens

The bus was nothing like the nice buses I’d taken up to this point. The seats were narrow and much less comfortable. The front of the bus was “normal” two seats on each side of the central aisle, but the back was divided into three single seats with two aisles between them so that passengers travelling alone didn’t have to rub elbows with strangers. I sat in my middle single seat and tried to bring my emotions back to center.

My destination that day was the island of Langkawi. I had decided after much reading on the internet that I was better off taking a bus to Kuala Perlis followed by the shorter (90min) boat ride from there rather than trying to take the 3hr boat from Penang. Initially, the idea of a 3 hr boat ride was appealing to me because I like the ocean and boats. But it turns out that all the boats here are kind of enlarged speed boats where passengers sit in assigned seating rather like an airplane and there is no access to the deck or other outdoor spaces. Since going out on deck is the number one thing to do if you get seasick, that didn’t sound great. Instead I think I just learned that the only comfortable way to travel north of Penang is airplane.

Bad Decision for a Good Reason

Nevertheless, when I got off the bus I met a couple more backpackers who made some headway toward restoring my faith in the tribe. They had opted for the bus/ferry route to save money. They were out for the whole summer taking a break from university and needed to stretch every cent. We got some lunch together and had some nice conversation, shared the ferry ride, and I was enjoying their company so I let them talk me into walking from the ferry port to our respective hotels in Langkawi. I have to say, I admire the packers who can walk themselves around with all the gear especially in that weather. I am not one of you. I should not have tried. It’s not that I can’t walk or carry gear even, but there is something horrible that happens to me in hot/humid weather. One day I will learn my lesson, and surely this experience was some very compelling evidence.

My feet were swelling from the weather, my clothes were drenched in sweat and I simply could not keep up the pace of my lunchtime companions. They never once complained about my slowness, but I still felt guilty. Then it started raining. You would think rain would be a relief in hot weather, but that is a lie. The rain doesn’t cool things down, it only increases the general humidity and makes you damper. Could this whole experience have been better if I had a different attitude? No doubt. It can be hard to maintain positivity in the face of certain obstacles – the angry lady in the morning had set my nerves on edge. The heat, humidity, and pain in my feet was eating away at what goodwill I had left. When the rain began and I realized that the ONLY event in Langkawi that I had planned to do would not be accessible, it pushed me straight over the edge into genuine misery and self-pity.

This Isn’t Fun Anymore

Google lied about the distance to my hotel. When my GPS indicated I had arrived, yet I could not see the hotel, it suddenly reset to a location another 15 minutes away. This was after I’d already been walking for 45, which was longer than the original Google estimate of 30. When I decided to go on foot, I figured I could just about tolerate 30 minutes of walking to the hotel in the heat. What I got was an hour in the heat and rain. When I finally arrived at the hotel, I discovered a man sleeping on the only bench in the tiny lobby, so I couldn’t even sit down while I waited for the clerk to show up and check me in. And he was snoring so loudly! It seemed to take forever to get checked in and get to my room where I promptly rid myself of my soaked clothes and basked in the air conditioning while I had a serious think about my options.

The Langkawi Taxi Lockdown

I do not like giving in to despair. I do not like nurturing negative emotions. I did not want to sit there and feel sorry for myself, damnit. I only planned to spend a half day in Langkawi in any case. The very next morning I was scheduled to take another boat out to the tiny tropical paradise island of Koh Lipe in Thailand. I had looked at how to avoid Langkawi altogether but it seemed like any way to go from Penang or even Ipoh directly to Koh Lipe would have involved a very long overland travel and another land border crossing, I thought at the time that shorter journeys would be better and that every place I was stopping at must have something interesting. However, I failed to take into account that Langkawi has the most bizarre taxi lock out in the world. There is not only no Uber or any other rideshare on the island, the taxis don’t stop on the street, or use meters, or bargain. They all have a set rate chart that tells them the fare from one place to another. And unlike Georgetown with it’s free bus and easily walkable areas of interest, Langkawi seems designed for package tours and resort dwellers. In my first plan I was going to spend 2 days in Langkawi and only overnight in Koh Lipe but research led me to a different notion and I had decided the most interesting thing to me was the cable car and skywalk, which being high in the mountains and made of metal would not be accessible or safe in a thunderstorm.

Give in to Self Care

As I lay in the hotel, resting and cooling off, I looked on the web to see if there was anything near by that seemed interesting, or anything even within a reasonable distance. I had wasted all my energy walking to the hotel when I didn’t need to and could not bring myself to be excited about any of the hiking or cycling options. I had no desire to go shopping since I’d taken care of my needs the day before. I didn’t want to visit a zoo or aquarium. In fact, nothing at all sounded fun, and while I was grumpy about the fact that I’d just “lost” a day of vacation, it struck me that the best thing I could do for myself was nothing at all.

Sometimes stuff happens to us on holiday and we just have to stop. I remember in Egypt I got horrible food poisoning that completely took me out of commission for about a day and half and left me weak for a long while even after I returned home. It’s not fun when you get sick on vacation, but it’s still important to practice self care. Sick doesn’t always look like a cold or an upset stomach, sometimes it can be an overdose of culture shock, heat edema, and physical exhaustion. So I took a shower, put on some clean clothes and walked all the way to next door to have some dinner and then spent the rest of the night reading in bed. I have only one picture from my entire time on Langkawi, and that was a food pic I took of that dinner for Instagram.

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Worst Day?

I told myself that every vacation has to have a “worst day” and that I was on my way to a tiny island paradise where I would see coral reefs and swim with glowing plankton and sleep on a hut on the beach and at least two of those things turned out to be true.


When I look back on my time on the Malay Peninsula, this is not one of the stories that stands out to me. At the time, it was horrible, and potentially vacation ruining, but Daniel Khaneman talks about “the remembering self” in his research, and using memory to create happiness. I choose to memorialize this day not to focus on the suffering, but as a way of reminding myself that what seemed so horrible at the time, cannot evoke strong emotion in me even 4 months later when I review and revise the experience, yet my positive experiences still bring a smile to my face. Plus, now I know what not to do the next time I travel to Koh Lipe.