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Archive for the ‘Packing and Preparing’ Category

Next week I’m off to Ireland. I’ve never been to Ireland before, so everything will be new and different and shiny.

Here’s how I’ve planned around my pain so far.

Flying out

I’ll do all the right stuff to make the long flight more tolerable, including:

  • Get to the airport ~3 hours before my flight leaves.
  • Use the wheelchair service
  • Bring my own food
  • Bring my neck pillow
  • Do in-seat stretching exercises
  • Get up every hour and walk the length of the cabin and back at least once
  • Stay hydrated
  • Relax when disembarking–the prize for the “race” to the baggage carousel is to wait 20-30 minutes for the luggage to appear, and I don’t want to win that prize

Hotels

All my hotel rooms are booked. Because I’m traveling on my parents’ budget rather than my own, they are nice hotels. Which means working elevators, other people carrying the bags, soft comfy beds, bathtubs, and room service. It’s not politically correct to say so, but rubbing money on the pain really does help.

On the ground transport

In Dublin, we’ll be walking and taking public transit. Because it’s a big touristy city, I know I can catch cabs if I need them. I also know that if I’m having an iffy day, I won’t stray too far from the hotel.

We’re hiring a car and driver for the longer hauls and our time out beyond Dublin. The ‘cars’ will actually be minivans, which means I’ll have a place to lie down if I need it.

Meds

I’ll be refilling all my prescriptions before I leave. None of my current meds are restricted in the EU. All meds will still be in my carry-on, in their original (labeled) bottles.

Ireland is a civilized country that sells codeine-based painkillers over the counter in pharmacies. I will likely take advantage of said civility.

Money

I’ll be getting in touch with my bank early next week to inform them of the trip. These days, you want to do that, so they don’t suspend your account (for suspected fraud) when you suddenly start making charges in another country.

Yup, that’s a lot of planning. But every practical thing I take care of at home makes it easier for me to relax and enjoy

 

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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.

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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?

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It's important to be comfy when you're sleeping away from home. Which apparently means burying yourself in pillows if you're my friend Daniel.

When I travel, I gotta sleep. There’s no way around it. No matter how many things I want to see, no matter what I want to do, if I don’t get plenty of sleep every single night I might as well stay home.

So I think about sleeping when I plan my trips. When? For how long? On what? Under what? Sleep is a many splendored thing–I need to be comfortable, which means I need to plan pretty carefully.

Dark and Quiet

I need moderate dark and reasonable quiet in order to sleep well.

For me, that means I try to get a room facing away from the street if I’m staying in a big city hotel or highway-facing motor inn.  That helps to keep the noise to a minimum. I also prefer to be about midway down the hallway from the elevator in multi-story accommodations. I like to be able to walk to my room easily, but I don’t love hearing the elevator clank and clang and beep all night.

I always wear earplugs when I sleep, so I don’t need absolute silence in my room.

Lightwise, I want to be able to draw curtains to shut out morning light. Whenever possible, I avoid east-facing rooms. Sunrise and I are not buddies. But I don’t love blackout curtains–they mess up my internal clock. If I get them in my motel room (and if I’m staying in Reno or Vegas, it’s nigh on impossible to avoid them), I make sure not to close them all the way.

Soft and Warm

Unless I’ve got no other choice, I prefer a room with some flavor of central heating rather than a portable space heater. One (often overly) warm spot in an ice-cold room does not work for  me, as I routinely get up more than once per night to use the bathroom.

“Soft” mostly means that I prefer a bed with a newer or specialized mattress. My preference is Tempur-Pedic(tm), but I can’t often afford the kind of room that boasts a top-end bed. Every now and again if I splurge I can afford something with a Sleep Number(tm), which is nice because my husband has different mattress preferences.

What doesn’t work so well for me are the slabs of plywood or concrete that masquerade as mattresses in down-rent Motel 6es and the like. So either I suck it up and budget for a nice enough room to guarantee a decent bed, or I drag my own mattress pad along. (Obviously this is a road-trip strategy.) I’ve got a queen-sized foam mattress pad that comes traveling with me when necessary.

Same goes for blankets–ultra-cheap motels often don’t have heavy enough covers for me, especially in winter. So I bring my own.

My Weary Head

BYO pillow if you want a good night’s sleep on the road. Accept no substitutes.

(I often sleep on hotel pillows so that I can bring their relative comfort to you, my readers. But not at cheap motels anymore. ‘Cause ow.)

Drugs and Other Sleep Aids

Are my friend. Whether I’m currently using melatonin or zolpidem, I bring a trip-long supply and use it regularly. On the road is not the time or place to decide that chemical sleep aids are evil and must be deleted from my repertoire.

Though I don’t use such things, same goes for music, sound generators, TV, aromatherapy, or whatever else you use to help you sleep at home. Bring it with you on your trip to make sure that your sleep environment is as close to what you’ve got at home as you can manage.

Long and Deep

I need to sleep at least 10 hours each night–12 is better when I’m traveling. Yeah, that’s a lot of sleep. That means I’ve either got to go to bed early and forgo whatever night life my destination has to offer, or I’ve got to sleep late in the mornings.

Because I am *ahem* not a morning person, I usually choose to sleep in. This means that I miss things. If you want to see Haleakala without a coating of dense fog, you pretty much have to see it at sunrise. So usually on each major trip I take, if there are cool things to do and see that must be done in the early morning, I’ll pick precisely one of them. I’ll choose one morning to get up early and play, and I’ll suck up the hit to my body and mind.

This can be a bummer sometimes. But if I try to push this limit and do two or three early mornings in one trip, the price I pay gets too high (like I won’t be able to function any more for the duration of the drip and for several days after getting home).

On the other hand, if I pack and plan well, stick to my boundaries, and get that good sleep, I often find that I’m able to do and see more than I might have imagined. Which is just so cool!

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The Imperfect Traveler's Guide to Traveling With PainLooking for a gift for those people in your life who’s got chronic pain? How about the caregivers and spouses of people with hidden disabilities that make life a little bit harder–conditions like lupus, MS, diabetes, endometriosis, Crohn’s Disease, or cancer.

Get them each a copy of The Imperfect Traveler’s Guide to Traveling With Pain. This slim volume with the friendly letters on the cover can help people with all sorts of hidden disabilities out of their homes and enjoying great vacations. Traveling With Pain, which includes a lot of info that’s not in this blog, can take a new traveler with pain from dreaming of a trip to planning and packing, through the airport and rental car counter, past the hotel reception desk, and out to the beach or the mountain or the lake or the downtown shopping area.

The paperback, which runs only about 100 pages so that it doesn’t weigh a traveler down, costs $16.99.

For Kindle and Nook users, my publisher has a clue and provides a genuine bargain: all the same content for $3.99 (Kindle) and $4.99 (Nook). Younger travelers with pain who use iPads and iPhones can run a Kindle app to read the book. Because it doesn’t have bunches of graphics, it reads fine on handheld devices.

Valuable for years to come, The Imperfect Traveler’s Guide to Traveling With Pain is a gift that keeps on giving. For one thing, it’s filled with useful information rather than clichés like “the gift that keeps on giving.”

Oh, and when you buy Traveling With Pain, you’re supporting this blog and making possible the publication of new Imperfect Traveler’s Guides.

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Liz Hamill Lake Tahoe

Me and my sweetie at Lake Tahoe last winter--we did a not-on-the-actual-holiday holiday trip with his family

It’s two days before Thanksgiving and you may be reading this post frantically looking for tips and tricks to deal with psychotically busy airports, painfully congested highways, over excited children, grumpy spouses, difficult in-laws, and the pain that stressful holiday travel brings and exacerbates.

So what can you do to make it better? Lots of things, actually. Here are ten tips for making holiday travel as comfortable and pain-free as possible:

  • Hope for the best, but plan for the worst.
    While it’s nice to dream of perfect holidays where loved ones come together in harmony to celebrate the seasons, treating one another with love and compassion…dreams don’t always come true. Families often have trouble coping when a member has a long-term illness or disability, which creates a wretched situation for the disabled person. Know that this issue will come up, and plan ways to get around it.Roads, trains, buses, and airports get busy and chaotic during the holidays. The mechanics of travel–always a trial to people with disabilities of any kind–get even more difficult to navigate at this time of year.  Whatever precautions you usually take to make sure your trips is as pain-minimal as possible, pay special attention to them both before and during your holiday journeys.

    If you need ideas for how to make your trips easier and comfier, The Imperfect Traveler’s Guide to Traveling With Pain can help you out.

  • Set clear, firm boundaries with friends and family.
    Your fam will have an easier time accommodating you if they know what you need. So tell them what you need. Use small words.ASAP, preferably before you ever set foot on the road,  have a talk with any family or friends you’ve had tension or problems with at past holiday gatherings. Be kind, gentle, polite, and very very clear about your boundaries. If you need to sleep twelve hours every night and so can’t make it to church at 6 a.m. or to Midnight Mass, say so. If you need an afternoon nap once dinner is finished, say so. If you can’t stand in a kitchen stirring the gravy for half an hour, say so. Don’t be rude, just be crystal clear.
  • Enforce and live by the boundaries you set.
    Don’t be rude, just be firm. If you’ve said you need to be in bed by 10 p.m., go to bed at 10 p.m. without arguing with anybody. Just smile, say good night, and go. If you can’t stand up for long periods but you’ve been asked to help in the kitchen, ask for a stool. Or find a way to work sitting down. Or ask if you can participate in alternative tasks.I know how hard this can be (oh boy do I), but you’ll be amazed at how well it works.
  • Think about the weather.
    Check the weather reports for the area you’re traveling to, then pack and plan accordingly. Temperature variations tend to exacerbate chronic pain, which means that packing to deal with local conditions can make the difference between a great holiday adventure and a miserable disaster of a trip. Pack weather-appropriate clothes, shoes, and accessories (don’t forget hats and gloves and thick socks for cold climates).Weather conditions also wreak plenty of havoc on transit, be it ground or air. If a blizzard’s blowing into your intended destination, it’s much nicer to know that ahead of time so you’re tucked up in a motel by mid-afternoon rather than stuck on a highway that’s about to be closed sometime after dark has fallen.
  • Consider allergies, both food and environmental, and prepare for attacks.
    If you’re staying in a private home, ask if your host has any new pets that might trigger an allergy attack and bring medication to counter it. Drag an air purifier along if it will help. For folks who have sensitivities to detergents and scents, don’t assume that either a motel or a home will use scent-free or hypoallergenic detergents. The solution: BYO sheets, pillowcases, and towels.Bring backup food if you think you’ll have trouble finding meals that accommodate your allergies and sensitivities. Research grocery stores and restaurants and your destination and have a short list of likely eateries tucked into your bag.
  • Bring your comfort items with you.
    Winter and the holidays are not the time to pack super-light. Bring heating pads or hot packs with you if you need the warmth, cold packs to diminish swelling, and favorite pillows to promote comfort. Don’t forget earplugs and sleep masks, even/especially if you’re staying in a private home.
  • Stay someplace where you can really relax.
    If staying with family stresses you out, don’t do it. Find a hotel, a sublet, an Air B&B room for rent in the neighborhood that will provide you with a bedroom to which you can retreat to relax and take care of yourself.
  • Take extra time on the road.
    If you’re leaving a big metropolitan area to drive over the river and through the woods to Grandma’s house, keep in mind that lots of other people are doing the same thing. Check traffic reports and road conditions before you leave home, plan routes to avoid major traffic arteries if you can, and give yourself plenty of drive time.
  • Give yourself as much travel time as possible on all legs of an airplane journey.
    If you’re flying anytime this week, give yourself at least 30 extra minutes at the airport–I’d recommend an extra hour, to be honest. That means I’d get to the airport two hours in advance for a domestic flight, three hours in advance for international travel.
  • Stay home!
    I know it’s too late to change Thanksgiving plans now. But you’ve still got choices you may be able to make for the late December holidays. And the truth is, it’s easier physically, mentally, emotionally, and financially to stay home during the holidays. Even if you’ve got to host the gathering of family and friends in your own home, by bringing it to your house, you give yourself access to all your usual pain-management tools. You can sleep in your own bed, take a bath in your own tub, use your plug-in heating pad, see doctors if you need to, and retreat to your own personal space when you’re feeling uncomfortable.If you’ve got time off around the holidays and you want to see some sights or take in some culture, but the holiday travel experience will be too painful to be worth it, spend a few days playing tourist in your own town. Do things you don’t usually do. See a play in a local theater. Go to a nearby museum. Hike a trail in a county park.

Most of all–have a happy holiday season!

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Moon California & prescriptions

My big ol' pile of properly labeled prescription bottles. Plus a not-so-smartphone and a guidebook

“Leaving home at home” is fashionable for travelers right now.

But I can’t drop my pain in a corner of my bedroom and leave it there when I walk out the door. (Oh, how I wish I could!) Without some basic self-care gear, my pain will spike and ruin my trip.

Here’s a list of a few items that help make a traveler with pain not just more comfortable on the road, but able to hit the road at all.

Essential Packing List for Traveling With Chronic Pain on Matador

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