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I didn't see this kind of bug in my room at Napa Discovery Inn. But then I was only in there for 5 minutes.

I didn’t see this kind of bug in my room at Napa Discovery Inn. But then I was only in there for 5 minutes. Photo by smee_me on flickr

Twice in the last month I’ve found myself in untenable  situations on the road. Both times, I had to change my plans on the fly. It’s tough and expensive to do that. But sometimes it’s necessary, no matter what your ability or pain level.

In short: Sometimes the best way to improve a bad travel experience is to  pack up and go home.

It’ll be up to you to decide when your personal pain/chaos/trouble-meter has pegged in the red zone.

To stop a trip in the middle, or make a major unforeseen change (like changing flights or hotels) usually costs money. Right now, I make good money at my day job. That means I can afford to indulge my pain and panic attacks in a way that I couldn’t back when I was a full-time freelance writer. When I was skating the poverty line, it took a lot more to make me change paid-for travel plans. Nowadays, I’ll suck up lost money to make myself more comfortable.

It’s up to you. It’s always up to you to figure out what’s worth it to deal with, and what’s just not worth it.

Here’s what drove me to make a major change in one case, and to bail in another case.

The Spider-and-Mosquito Motel

Last month I accidentally found what may be the worst motel in the Napa Valley: the Napa Discovery Inn. In a region that’s got about a thousand wonderful motels, inns, B&Bs, spa resorts, etc etc ad infinitum, there’s no reason at all to stay in a place this crappy. Just a few miles north, the Chablis Inn is a clean, comfortable, safe motel that actually costs less than this freakin’ travesty.

What happened

My instincts started ringing bells and popping red flags the instant I pulled into the Napa Discovery Inn’s parking lot. I stared into the dark, exposed parking lot, lit primarily by my truck’s headlights, and thought “my truck’s going to get broken into.”

I went in to the tiny office, not comforted by the “safety window” that lets clerks deal with customers without letting them in to the office. Hint: those are common in Oakland. NOT in Napa.

Though the clerk was friendly, an overwhelming smell of curry (which I’m kind of allergic to) and loud talking from the next room made the check-in experience unpleasant. And the clerk charged my card for my two-night stay then and there. Another no-no.

Room key in hand, I parked my truck in the too-small space in front of the exposed ground-floor room in an attempt to block the window a bit.

The room was small, badly designed, and not overly clean. But what finally did me in/started me into a full-fledged racing-heart panic attack was the bugs. The distinctive whine of mosquitos came from the ceiling. And as I stared, a big red-and-yellow spider sauntered across the night stand next to the bed.

That did it. Standing there alone, feeling unsafe and creeped out, I freaked.

What I did about it

I grabbed my bags, threw them back into the truck, and strode shaking to the office with the keys. A different clerk, male this time, appeared. I told him my room had bugs and I was leaving.

He wanted to give me a different room. I said no. He yelled at me, angry that I wouldn’t “give him a chance.”

Oddly enough, being verbally abused didn’t help my panic attack. I dropped the keys on the desk and fled.

On the way to the Napa Discovery Inn, I’d seen a couple of chain motels. I picked a Hawthorne Inn & Suites that was only a mile or two away. It was after 10pm, I was pale and shaking and felt like crap. I didn’t want to drive around anymore.

Sure enough, the Hawthorne had rooms available. The lobby was clean and nice (and didn’t have a security window). I went on up to my not-on-the-ground floor room after parking my truck in the well-lit lot. Then, and only then, did my heart rate start to diminish.

I’m never going to see that $300 prepay to the Discovery Inn again. Fine. I’ll repay them by panning them on every review site on the Internet. I can afford to suck up the cash loss.

Mini Burning Man

A couple of weekends ago, I went camping with a big group in a horse pasture in California’s arid Central Valley. I do that occasionally–I belong to a re-enactment group* that does camping events on a large scale. It’s tough to find shady campgrounds that can take 500 people, so we cope with the heat.  The whole state experienced an epic windstorm that weekend. Ever been camping in 35 mph winds? Yarg.

What happened

Friday night was charming. I hung out with friends, had a couple of cocktails, and enjoyed the atmosphere. What with one party and another, I didn’t make it to bed until about 2 a.m.

At about 5 a.m., I woke up when my tent hit me in the face. At 6 a.m., I woke up to children screaming. At 8 a.m. the sun had turned my tent into a steam cooker, and I gave the hell up on sleep.

The temperature rose to 90F-plus by 10 a.m. But what killed us was the wind. Also by 10 a.m. it blew constantly, gusting high. People’s tents and sunshades started blowing over, disrupting the day’s activities. Many folks had expensive tents badly damaged. (One friend had her 20-inch-long wrought-iron tent stakes bend.) We were all breathing dust and powdered horse crap.

I found myself enduring three of the main conditions that comprise the reason I don’t go to Burning Man: heat, wind, and dust.

What I did about it

By 2 p.m. my friends and I had had it. (I camped with couple who brought two children under 5 years old to this event.) We packed up and left a full day early. One of my friends drove my truck home, because I was on the verge of collapse. We got home, and I spent the evening huddled on my couch watching TV and basking in the lack of dust-filled air pummeling my skin.

The good news for this incident was that we didn’t lose money on the deal. The fee to attend the event was flat. No hotel or transportation reservations got canceled. And the gas cost the same on Saturday afternoon as it would have on Sunday afternoon. All we lost was a day of camping with friends.

* I’m in the SCA, if you care.

Liz Hamill Mossbrae Falls

I have conquered Mossbrae Falls! On a road trip through north-central California.

Hey readers! This week I’ve got a guest post by Fiona Hill about road trips. She gave me some new things to try!

Road trips can be daunting for people suffering from invisible illnesses. We all know that unnecessary stresses can exacerbate everything from chronic pain to fatigue. So, does that mean that those of us suffering in relative silence should miss out on the trips that everyone else enjoys?

In short, no! With a little extra care and preparation, road trips when dealing with chronic pain and other ailments are possible. Check out these tips to make sure you’re comfortable and enjoying yourself! 

Before You Leave

If you have a long journey planned try to make sure you are well rested before the journey starts. Organize everything you need in advance, including medication to avoid rushing and becoming stressed, as stress often triggers conditions like fibromyalgia. Have an itinerary planned for your journey and for your break when you arrive at your destination, and factor in a day of rest before you travel back.

Your Throne

Possibly the most important part of any road trip when you are suffering from an invisible illness is your seat. Whether you will be seated for an hour or 8 hours (we hope not), it’s important that you are comfortable. Whether you rent a car or are driving your own make sure the seat you will be occupying is comfortable by using a mesh back support or an orthopedic back pillow that will give you extra support and help you to maintain your posture during the drive. You can also pick up neck support pillows at most retailers that will ward off neck aches and pains. The better your posture the less stiff you will become.

When your seat is as comfortable as possible you might want to think about some simple stretching exercises you can do whilst in the car to prevent any stiffness that will soon turn into pain, as well as fighting off fatigue. Head to http://www.drivetimeyoga.com/roadtripstretches for information on road trip body stretches, including ‘Stoplight Yoga’ and the ‘Tailbone Tuck’.

Baggage

Think carefully about how much luggage you need to take, especially if you’ll need to unload or load it by yourself. Heavy lifting can make your symptoms worse leaving you unable to enjoy your trip.

That said; don’t be afraid to ask for help if you need it. What’s worse? Asking a stranger for help or dealing with days of pain by pushing your body too much?

Stop! Restroom Time!

Planning your journey with rest stops is important. No matter how comfortable your seat is or how well planned the start of your journey was, nothing beats a good break! If you’re aware of restrooms and roadside dining options along the way you can avoid mad panics when you feel a bout of fatigue or pain beginning. Where possible you should find out as much as possible about the rest stops along your journey, do they have the correct facilities for you? Are they known to be clean? How large are the toilet stalls? Do they have handrails? (Liz: Are they safe and comfortable for solo/female travelers?)

When Hunger Strikes

Staying well hydrated and well fed during your journey ensures that you have the energy to continue. It’s especially important to eat a healthy breakfast. Avoid snacks that are laden with sugar that leave your system quickly and choose foods that will provide both instant and slow release energy like dried fruits, nuts, bananas, whole-grain bread and a splash of coffee.

If you need to stay alert, chew peppermint gum; the chewing motion and minty flavour will help you to stay awake. (Unless you’ve got TMJ and can’t chew gum—in that case, sucking mints can do similar things. –Liz) Chewing apple slices has the same effect and will also boost your fructose levels.

How do you cope with your invisible illness during road trips? If you have any tips or tricks then let us know. Check out Liz’s post on 10 Ways to Screw Up Travelling with Pain.

The de Young Museum in SF has seats. They're not even kind of comfortable for TWP (the seat area actually slopes downward and it's slick), but it's a seat.  That's my friend Vytas.

The de Young Museum in SF has seats. They’re not even kind of comfortable for TWP (the seat area actually slopes downward and it’s slick), but it’s a seat.
That’s my friend Vytas.

There’s a growing body of info out there for travelers with visible and sensory disabilities. If you’ve found me, and you use a wheelchair or have low vision or low hearing, here are a couple of my favorite travel sites for “traditional” disabled travelers:

For those of us with hidden/invisible disabilities, the traditional disability travel info helps…some. But we’ve got our own needs, and some of them don’t map directly to those of wheelchair users.

Seating

Finding places to sit comfortably is one of my biggest challenges when I travel. Unlike wheelchair-using travelers, I don’t bring my own seat with me.

Most typical disability travel web sites and books don’t address the seating that’s available at attractions, whether hotel lobbies let registrants sit while filling out forms, or how comfortable or otherwise the chairs and banquette in restaurants feel to an aching back.

This means I’ve got to do my own research into the availability of chairs and benches and stools at my various destinations.

Restrooms

Disability travel info does have lots of info about restrooms–this generally focuses on stall size, door width, toilet height, and grab bars.

What I need runs more to where it is, is it locked (and if so how do I get the key), and how clean is it? In other countries, I need to know whether there are pay toilets (and how much they cost), and what the format of the facilities is. One need I share with wheelchair users is a seat I can actually sit on–squatting over a hole often doesn’t work for me.

Food

Food allergies and sensitivities often aren’t addressed by typical disabled travel literature. Nor is the ready availability of food for folks who may need to eat right now, who include people with diabetes, hypoglycemia, and other conditions.

Walking Distances

Tourist maps always seem to imply that it’s super-easy to walk from one attraction to another. Like Paris tourist maps make it look like the Louvre and the d’Orsay are just a short hop across the river from each other. (Note for non-Paris-knowers–this is a big fat LIE!) Because I can’t walk 10 miles per day, or even 3-4 miles without sitting down and resting awhile, I need real scale when I’m looking at a map of my destination.

Come to think of it, chair users who don’t have power chairs could make a lot of use of this info too!

Indoor/In-Park Walking Distances

If you’ve ever been to a theme park or a big museum, you know what I’m talking about. Whether it’s Disneyland or the Louvre, travelers with pain need to know how much walking they’re going to need to do once they’re inside an attraction. At Disneyland, it’s easy to walk miles in a single visit. Same goes for the giant museums of the world. And airports. And cruise ships. My most recent on-the-road collapse was the result of spending five days walking back and forth across one of the mega-huge RC cruise ships.

 

I’m sure I’ll think of more items to add to this list. What info do you wish travel guides would give you? Where do you get this kind of info?

Hey y’all, guess what? Somebody out there cares enough about disabled travelers to survey us!

http://www.surveymonkey.com/s/P7F59J5

Please take a few minutes to take this survey. It’d be great to see travelers with hidden disabilities well-represented in this effort.

Best of all, it’s clear that somebody out there thinks that disabled travelers have enough money and desire to travel internationally. And they want to market to us effectively. That’s so awesome! This is how we’ll get better travel experiences worldwide–by getting the travel service industry to realize that we have money and we want to spend it on travel.

Guess what? You can sue an airline for failing to provide you with a wheelchair, according to the 9th Circuit Court of Appeals:

Court upholds lawsuit

I’m horrified by the way United Airlines handled this situation from beginning to end. To yell at a passenger, deny her a wheelchair, and then cancel her ticket…really, United? That’s how you train your employees to deal with disabled passengers?

Just because you can’t see pain doesn’t mean it’s not very VERY real.

I wonder…back when I was healthy and participated in a full-contact martial art/sport, I used to carry a photo with me every time I went to the doctor. It showed me in my armor fighting a guy three times my size, and I showed it to any medical professional who examined me to head off questions about the bruises on my arms and legs.

Maybe I should start carrying one of the photos of my innards from one of my surgeries…perhaps the one that shows my left ovary attached to both my abdominal wall and my uterus by endometriosis and scar tissue. I bet that flashing that picture would not only upset and disturb the average airline employee, it would get me what I need really *bleep*ing fast. If Ms. Gilstrap had carried copies of her x-rays, would the United Airlines jerks have believed in her disability?

Which brings me to one of the Big Questions about having a hidden disability…how do I make it visible to others so I can get the assistance I need? I’m not going to wear a sign around my neck or tattoo Moderate to Severe Chronic Pelvic and Back Pain across my forehead. So…carry visual aids for people who question me?

 

The plane bathroom on a Singapore Air flight by scurzuzu on flickr

The plane bathroom on a Singapore Air flight by scurzuzu on flickr

Oh how I hate airplane bathrooms. But then, doesn’t everybody? They’re tiny, they’re smelly, and sometimes you get to wait in line for half an hour or more for the privilege of squashing yourself into the cubicle. Yippee.

But I know that as bad as airplane bathrooms are, I’m lucky I can use them. On most airlines both major and minor, wheelchair users who can’t walk at all must…make other arrangements. When I stopped and thought about having to wear a catheter just to fly, I suddenly felt much better about the stinking cubicle.

Here’s how I make dealing with airplane bathrooms more bearable:

  • Use ‘em as little as possible. That means I make time to visit the restrooms in the airport before I board.
  • Go easy on the diuretic drinks–that is, alcohol and caffeinated soda.
  • Keep hydrated…to a point. While I don’t do well at all if I let myself get dehydrated when I fly, I don’t spend whole flights chugging or sipping either.
  • Know when high-use times are, and avoid them. Everybody on the plane will want to use the bathroom after they’ve finished their meal. Another rush happens in the “wakey wakey” time after the sleep period on long-haul flights. Mini-rushes can happen right after the seat-belt sign goes off, and soon before it comes back on before final descent.
  • Try my best to time my bathroom trips to avoid rush hour. The instant the Seat Belt sign dings off, I bolt out of my seat and get to the bathroom as close to first as I can. Then I wait until the after-food bathroom lines die down and go when everyone else is getting settled with a movie or a pillow.
  • Pay attention towards the end of the flight. For me, it’s not just uncomfortable to “hold it” if I miss my window to use the bathroom before descent. It can be agonizing. So I keep track of how long I’ve been on the plane and what the flight attendants are doing, and make sure I get up and use the bathroom just before the plane descends.

Do you have any other tricks you use to deal with airplane bathrooms? Drop a comment here…

Kidd's Kids on Southwest Airlines

Southwest Airlines flies Kidd’s Kids to Disneyworld, proving that if they want to, they can handle an entire plane full of disabled people and their attendants

My father found this Wall Street Journal article about people who “cheat” by using wheelchair service at the airport to skip past long security lines:

The Wheelchair Cheater Article

I really don’t know quite what to think about it. It’s good journalism–it tells the truth and it’s not horribly biased.

BUT…

On the one hand, I’m one of the legitimately disabled people who has to deal with long waits for wheelchairs that may be exacerbated by cheaters. I’ve had 30+ minute waits at both LAX and Sea-Tac (both of which came up in the article). I’ve never missed a flight due to a too-long wait for a wheelchair, but at LAX I came mighty close. Cheaters make us all look bad, and make it harder for every person with a legitimate need to get the help they need in a difficult and stressful environment.

On the other hand…

Grand. Great. Thanks a lot, WSJ, for making it just *that much harder* for people with legitimate need for wheelchair service but who don’t class themselves as “disabled” and who already worry that they’re “cheating” if they use the service. I grayed out and collapsed in the TSA line at SFO in 2007. Yet I still had to be talked into using a wheelchair at the airport. But that incident is what finally got me to wrap my brain, my pride, and my heart around the idea that I need to use a wheelchair when I fly.

It’s much harder for many people with real hidden disabilities to volunteer to put ourselves in wheelchairs than it appears to be for the cheaters. For us–or at least for me–the symbolism of using a wheelchair anywhere brings up a cacophony of conflicting emotions.

Ironically, one of those things we worry about is being seen as cheating, precisely because we don’t use canes, or have braces on our legs, or look like senior citizens.

Just because you can’t see what’s wrong with me, or anybody else in a wheelchair at the airport, doesn’t mean I’m cheating. You can’t see chronic pain, or cancer, or heart disease, or AIDS, or lupus, or MS, or any other of a hundred conditions. You can’t see a prosthetic foot or leg if it’s covered by pants. Young people can fall prey to serious but hidden disabilities. Just because we look young doesn’t mean we’re cheating.

Finally, let’s all take a look at the statistics presented by the WSJ in another light: the article says that the airlines estimate 15% of wheelchair users at airports are cheaters. That means that 85% of airport wheelchair users ARE LEGIT. That’s a vast majority. That means that of 20 people you see in chairs, 17 of them need that help.

I’m writing a letter to the WSJ regarding this article. I’ll let y’all know if I hear back from them.

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