Traveling with POTS, VI

Travel buddies are the best.

When I was a teen, I couldn’t wait to take a few solo trips. In college and the first few years of graduate school, I did just that. There was something thrilling about setting off by oneself into the great world and successfully conquering one small bit of it. (Even though in my case it was usually more luck than skill that saw me through my (mis)adventures!).

To be honest, though, the joy of traveling by myself had started to wane just a little bit even before I got sick. Taking pictures was a way to share my experiences with others without having anyone physically present, but it was initially a sort of substitute for real human company. Then I feel in love with photography in earnest, and I also became much more ill. As I really began to struggle, a travel buddy was the ticket to successful travel… not my boarding pass, which I lost once. When you’re lost in brain fog, a travel buddy can help point you towards the right sex bathroom; when you’re too weak to lift a case, a travel buddy can help lug it over (or convince someone else to do the lugging for both of you!). A travel buddy can remind me about medications, shout at rude people, drive a rental car, and make sure no one accidentally puts something I’m allergic to in my water or meal while I’m in the loo. In return, I’m an endless source of bumbling amusement most especially, but I try to have their back as well. And the tab, whenever possible, I’ll admit.

The funny thing is, even with my changing perspective on solo travel, if POTS hadn’t slammed into me I might not have learned to not only tolerate, but to even enjoy someone else’s company on trips. Wrecking ball style, it shattered my illusions about the safety of solo hiking, and brought in instead an appreciation for fellow travelers and their journeys that I had never even considered. Even when I am well enough to go driving around a city and spend a day on the town by myself, I find myself checking over my shoulder not because of danger of being alone, but because more often than not I want to look back and share this experience with someone.

Travel buddies. Hard to find, but worth the investment.

 

 

Traveling with POTS, V

Two words. Checked bags.

Except for medications and whatnot, of course. Which, let’s face it, probably fill your carry-on and/or personal item anyway. Spring for a snazzy carry-on to make the fact that you’re carrying enough medications for an old folk’s home more palatable, and consign the heavy stuff to the tender loving care of the airline.

 

Traveling with POTS, IV

My luggage is also full of compression wear. I packed a lot, and I used almost all of it. I thought about not bringing much… but then I remembered that I probably wouldn’t want to spend time and energy on vacation hand washing hose every night. Thankfully even compression athletic leggings don’t take up much space or weight in luggage.

Even if I don’t need thigh-high squeezers at home, when I’m traveling the stress and additional demands of travel mean that I sometimes really have to just flail about putting the things on and lump it (literally, because on a bad flare day the pressure might bring about a rash). But it’s worth it. The difference in between watching a movie or counting the soggy popcorn kernels on the floor of the theater is a pair of boa-constrictor tight hose in a stylish (*not*) nude.

Traveling with POTS, III

I pack a lot of shorts and pants. Compression hose might look nice with a dress, and I love dresses… but I sit cross-legged everywhere, or even curled up with my knees hugged to my chest. I have too many younger relations who haven’t grown out of their “I see London, I see France!!” stage to do otherwise.

No, I’m not afraid or emotionally stressed. Physically, it seems to help with the blood pressure issues and nausea of my version of POTS. Many websites recommend similar tactics while standing or sitting (“fidget!” a UK site recommended! ๐Ÿ™‚ So at restaurants, churches, graduations, stadiums, and theaters, I defy the norms of society. I don’t sit properly with my feet on the floor, or with my ankles crossed. I yoda, and smile. Invert my verbs too, I sometimes do. ๐Ÿ™‚

 

Chair with Wheels

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This trip marked a first for me. Amazingly enough, I’d never used a wheelchair except in hospitals and doctor’s offices. I knew I needed to try to use my body as much as possible. “Use it or lose it!”: that was my mantra. The truth is that I probably missed out on some evenings out or trips to places like museums or zoos, just because I was simply too tired and couldn’t stand that long.

But at the end of my last trip, I flared. A few days before Iย  was supposed to fly home, I lost my own private battle to stand rather abruptly, not even making it all the way through the simple hymn I was supposed to be singing. To complicate matters further, the day after I made it back home I’d be undergoing a procedure. I needed rest. I needed help. I needed to not stand for hours in check-in lines, security lines, and boarding lines. I needed a wheelchair.

Of course, I couldn’t just go and request one, pushing aside years of denial in one casual click of the mouse, o so easily. No. I researched involuntarily denied boarding online. I sought advice from that bastion of support, Facebook. People in a dedicated POTS group instantly responded. If it would help, go for it! That’s what it was there for. The wheelchair assistants were paid. No, I wasn’t taking it from someone else, and it wasn’t just cutting in line. If I thought I would have issues, a wheelchair was a perfectly logical, very practical thing to do. I stared at the screen. Then I decided I needed another opinion… so I tracked down my younger sister.

“It’s just a chair with wheels!” she snorted, rolling her eyes. “Just do it already!” Then, problem dismissed, she tossed her hair back and settled down to do some real work.

Hmm.

Ok.

After another hour of pointless agonizing, I finally went through the online check-in process and requested assistance going through the airport. My sister stood behind me, providing emotional support and no doubt inwardly rejoicing that she wasn’t going to be a withered bent shell of a human being due to carrying her stubborn sister through a terminal. All it took was a few clicks of the mouse on an easy website, and it was done.

There rest of the process was equally simple — and amazingly, almost everyone reacted like my sister had the first time I asked her about getting a wheelchair through the airport. We went to the front desk of the airline and checked our bags (ok, I sat off on one side while my sister waited in line. Have I mentioned she’s rather awesome?). The harried man behind the counter very kindly confirmed my reservation and directed us to some seats off to the side. A perky woman checked our boarding passes and brought a wheelchair over in a few short minutes (or rather a transport chair, lacking any way for me to control it). My sister and I spent another few minutes behind a baggage area before another young woman came and took us all the way through security and to our gate, cheerfully and very patiently. We waited at our gate and I chatted with other passengers, not a one of whom seemed to care one whit that I was seated in a wheelchair instead of a normal seat. It was a discount airline and we were all in for a tight and uncomfortable trip no matter what; there was a strong sense of fellow-feeling and brotherhood as we contemplated hours in vinyl jumpseats.ย There was a longer wait to actually get on the plane, but half-way through the boarding process someone else materialized and propelled me down the ramp.

I napped for most of the flight, curled into my vinyl square like a cat. There are some advantages to being vertically challenged. ๐Ÿ™‚ After that rest, I felt like I didn’t really need the wheelchair for the trip off the plane. There isn’t nearly as much standing involved in the deplaning process, and it is extended periods of standing that tax my system. But in the end, I was glad that I simply got back in the seat. Another nice man took us at warp speed through hall after hall…after hall… after hall…. the terminals were strung together and endless. When we arrived at baggage claim, of course our baggage hadn’t — it’s a quirky constant of air travel. If you are on time, your bags are late. The wait for your bags is directly related to how few delays you experienced in flight. Got through TSA fast? Take a number and wait 20 minutes in line at the baggage clerk’s desk, sucker! But the longer you are delayed, the faster your bags beat you to your destination. It once took me 29 hours to fly from the Central Coast of California to Denver. My bags beat me by two days.

I had been worried that I would be judged, the young woman in the wheelchair. How could she need this? I impulsively told everyone what was wrong: “I have POTS. Postural Orthostatic Tachycardia. The part of your body that automatically controls things like heart rate and blood pressure? That’s broken on me.” I told people who didn’t even want to hear it. I was babbling and knew it and just couldn’t stop. It didn’t matter one way or the other, though, and finally I began to relax a tad. Gradually I got accustomed to watching people from my new position. I didn’t seem to be any more or less visible than I was normally, which is not very; people’s eyes frequently slide past me. If they did it now for a different reason instead of the normal lack of perception, I couldn’t tell. There were a lot of butts. It wasn’t always terribly comfortable having someone else push me, because with a transport chair there wasn’t any easy way for me to move myself if I was in the way. I had to crane my neck around to look at the person propelling me, and it felt so impolite to talk to someone without looking at them, but even more impolite to simply sit there without any sort of lubricating conversation.ย  I got a sort of childish glee from the few things I could do, like pushing the elevator buttons. “I got it!” I’d squeal from the chair, face to face with the ranks of glowing circles. I hadn’t been that pleased with my ability to punch the button for the ground floor since I was four. Ah, well.

For a first experience, it was incredibly positive. I was treated with courtesy everywhere and kindness at almost every turn by the staff. My fellow travelers, amazingly, treated me like any other travel-weary, sweaty, and frustrated journeyer on the bumpy sky lanes. I have to thank Frontier Airlines and their excellent personnel for helping me. It was an emotional step to take, but now that’s it’s been done my worry over using a wheelchair seems nearly as childish as my excitement for pushing elevator buttons. I don’t know whether or not overcoming this reluctance will open up a whole new world of evening operas and museum day trips yet. But I do feel that big events seem far more doable than they have in the past… and I now know that my local zoo rents chairs with wheels. ๐Ÿ™‚

 

Chronically Ill Bitch, Baby!

I am a Bitch. I got called that during one of those long weekends that should have been going swimmingly — the beautiful blue sky, warm weather, fun events, and large party of people — but oddly, almost incomprehensibly, it wasn’t going well. I made it 30 hours before I was repeatedly dubbed a bitch in a restaurant by a member of my party. My crime? Well, succinctly, being a strong but chronically ill young woman.

The possible provocations, when broken down, were those aspects of living life publicly with a chronic illness: I am a Bitch because I didn’t want to discuss my food allergies with my fellow diners, loudly and publicly, in a restaurant, and I apparently had a Bitchy tone when I tried to shut the conversation down.

I am a Bitch because I didn’t want to try something, and so I just said I didn’t want it. I was also allergic to it, which might account for the “not wanting to try it.” Unfortunately I had to go into that in order to defend not ordering and paying for, as an adult, a food I couldn’t eat.

I am a Bitch because I needed to quickly eat a home-prepared snack in order to take medications about an hour before eating at the restaurant. The restaurant where I’d called ahead and discussed options with the chef before pre-ordering the only safe thing on the menu for me … oatmeal. I don’t think spoiling my meal was an issue, although I’ll say this: the restaurant really pulled out the stops on their oatmeal for me.

I am a Bitch because I needed to stop and take some medication. It’s something that I always try to do discretely but, thanks to the curiosity and control-seeking tendencies of my fellow event-goers, had to be explained in excruciating detail. (Where are you going? Why? Why do you need to take meds? What for? What meds in particular? Have you taken them yet? No, I don’t think you should take meds now!) I am a Bitch because I finally told them to go ahead so I could go to the bathroom (and deal with my medications in relative peace); I would catch up at the cars. I am a Bitch because I have to take medications about 8 times a day. My life-preserving measures are, of course, a huge inconvenience to everyone else, and earn me some well-deserved ire.

I am a Bitch because I had to take a lunch box and small bag of gear with me through an entire event (event staff did not have any problems with this). I am a Bitch because I walk slowly through the rushing crowds, and sometimes I need to stop and sit. I am a Bitch because it is safer for me to take the elevator instead of the stairs, even if this means I have to first find and then wait for the elevator to take me only one or two stories.

I am a Bitch because exuberant driving, like roaring through suburbs and pulling Gs at corners and lights, makes me motion-sick. Informing someone of my growing queasiness is spoilsport, complaining behavior. I am a Bitch because I need to sleep instead of party the entire night.

I am a Bitch because, while everyone else gets up, puts on clothes, and leaves, I get up, stretch, eat, shower, dress, and pack my lunch. And no, we were not late, and I did not wake anyone up.

For some reason, this particular instance of name-calling hurt far more than the odd cat-call on the sidewalk or elevator eye on the train. Coming from someone I knew, it was more personal at the same time that it is dismissively derogatory and shamefully sexist. On the other hand, the situation itself is rather painfully familiar both to me as a woman and someone with a chronic illness. As a woman, my desire to walk to the car by myself was interpreted as dismissive and arrogant, not assertive and capable. As someone with a chronic illness, I was flouting their concern for my well-being; no one had heard of the term “ableism” and it wasn’t quite the time to bring it up… or the presence of ramps, elevators, and shuttles scattered liberally through the event grounds that would enable me to make my way safely back to our cars. Throughout the weekend, my chronic illness meant that I had to behave in ways other than expected for a woman of my age. This might mean anything from going to bed early to being pro-active and firm about my diet. This meant I was defying social norms, and because of this willful defiance, I was a Bitch. As for tone, well, a person’s tone of voice is always subject to interpretation and is a messy no man’s land of interpersonal communication. Whether I was whiny or just trying to pitch my voice to be heard over the restaurant babble without simply shouting, even I couldn’t tell you. This doesn’t even take into account perceptions of the timbre of women’s voices over men’s. On an individual level, of course, thanks to the acoustical wonders of my human head, my voice always sounds different to me than it does to others.

Leaving that aside, however…

I am a Bitch, everyone!! It’s time for some deserved reappropriation. I earned my new title of defiance by being a chronically ill and assertive young woman. Even without the leg up in the bitchiness standings that my illnesses and sex have given me, it is entirely possible for you too to become a Bitch. Stand up for yourself. Trust your instincts. Take care of yourself. Do your own research. Think for yourself. Come to a reasoned decision, and then stand behind it. Don’t compromise your health for someone else’s comfort. Speak up. Don’t let others shame you for your race, sex, health, or any other little metric. Respect yourself.

To all my fellow Bitches, whatever your gender, hello! And welcome to the party. Fly high and strong.

 

Confessions of a (chronically ill) graduate student

I confess. I occasionally get irked at friends who are trying out new diets. “Shred 10 is great!” one recently gushed. “I love it and I’ve done it several times!” “Nah, Ketogenic is the way to go,” someone else insisted.

For them, diets are pulled on enthusiastically and then discarded quickly, like summer camp t-shirts. They try to get me to come along to camp, and don’t understand why I don’t get on board, start singing “The Wheels on the Bus” and pull on a sparkly t-shirt too. But for me, well, diet is less summer camp and more a career in the Navy SEALS. Reading ingredient labels isย life.

So I politely decline to join them on the trendy new diet. I secretly hope that these sorts of voluntary restrictions don’t adversely affect people who really have to avoid certain foods. And then I smile, and I tell them where I go to shop… because friends are friends, and people should be able to chose what they eat without excessive judgement, and SEALS do occasionally help summer campers.