Letting reality be good enough: enjoying travel in spite of chronic pain

Sometimes, reality intervenes between our ideal experience and one we can achieve.

Since being diagnosed with an autoimmune condition, I’ve found myself having to adjust my expectations for many facets of life. That includes my hobbies, which can be hard enough to prioritize for a stay at home mother of two.

One of my favorite things is travel. I’m not a full on globetrotter like some, but my trips—planning them as well as taking them—are great highlights of my life.

In the past year, I’ve had to cancel much-loved annual jaunts due to flaring symptoms. I’ve had to “waste” money already spent on non-refundable tickets, and I’ve regretted going on excursions for which I was in no condition to participate.

I’ve found myself asking:

Should I even try to travel for pleasure anymore now that I’ve been diagnosed with autoimmune disease?”

My answer to that question—when the flare passes, and when the pain and exhaustion have subsided—is that I should. In fact, I must carry on.

If I don’t persevere, the disease wins. If I give up what I love, I’m choosing misery over joy. I never want to live that way.

I got dealt a bad hand this time around, but it’s the only one I’ve got to play. I can make the best of it, or I can quit the game. I could just watch the other players, but what fun would that be? That’s not the life for me. Nor would I wish such circumstances on anyone else.

With that said, here are a few tips for putting some of the pleasure back in travel for a traveler with a chronic condition. Continue reading

Angelrox clothing offers chronic pain- defying comfort with a touch of glamour, perfect for travel

I started Really Wonderful Things at the urging of one particular friend, hereafter referred to as The Priestess. In spite of this motivation, I have mostly failed to write the practical reviews she wants from me.

I think she thinks I’m hoarding the results of all my overthought, overwrought purchases. I’ve got passionate and informed opinions about, among other things, travel gear, brands for women and children, housewares, books, and the physical stuff of child-rearing.

What The Priestess says is mostly true. I’ve agonized over a ridiculous number of nearly trivial comparisons, making fascinating to me distinctions between a variety of mundane items. She claims I’m not the only one who should profit from these efforts.

Made in Maine ~ angelrox

Though I think I already sold The Priestess on this particular company with an in person demonstration, I’ll take her word for it that I owe it to the world to share my opinion of Maine manufacturer angelrox‘s travel friendly knit clothing, with particular emphasis on the “Goddess” and “Glow” dresses and gowns.

Here’s the bottom line: in a Goddess dress, you can echo the glamour of an old time movie star while you feel like you’re wearing your comfiest pajamas. These clothes are that good!

Goddess dress & gown

Goddess dresses are very fitted, but made of an exceptionally soft rayon-blend knit that doesn’t pinch or uncomfortably squeeze the waist in this design. View angelrox’s product page for artistic professional photos, but I’ll share my own snapshots to give you a glimpse of what this dress looks like on a size ten/twelve, middle-aged mother of two. And, no, I’m not wearing shape wear/Spanx because they squeeze and HURT. Another reason I’m not writing a “fashion” blog.

Keep in mind that a person with chronic pain is calling these clothes comfortable. This is not the “comfortable” designation of someone who will suffer for beauty. These are garments that I choose to put on when every inch of my body hurts in some way or another, but I have to cover myself or become resigned to staying in bed.

To feel pretty under these conditions is almost unthinkable luxury.

Continue reading

Such a simple solution: cold feet cured with a double duty metal water bottle

A hot water bottle by one’s frigid feet is a classic winter comfort. If you suffer from ice cubes for toes and haven’t yet discovered the joy of this simple but effective warmer, do try one as the nights regain their chill.*

Here’s a so-simple-it’s-silly solution to the same problem in an overly air conditioned hotel room or when encountering unseasonably cold weather camping:

Use a refillable/reusable metal drink bottle full of hot water as a bed- and foot-warmer. Consider it a more petite cousin of the old-fashioned rubber hot water bottle you could pick up at a pharmacy.

Sigg water bottles - 1

Swiss made aluminum bottles by Sigg, well used for almost a decade; dented, but still leak-free

Fill your bottle from the coffee machine (run it without coffee in the basket), the hot tap in the bathroom, or even use water you’ve heated over a campfire. I’ve tapped all of these for fuel to fight freezing feet. Just pour carefully as your source water gets hotter.

Esbit stove hot water - 1

If you have to heat your water this way, allow lots of extra time before bed…

Make sure your bottle has a tight-fitting, secure lid that won’t come loose inadvertently and soak your bed! I like flip top lids for daily use, but I only travel with bottles that include sturdy screw caps. I also routinely carry a small but super absorbent PackTowl in the same pocket of my pack to catch small leaks and drips before they threaten my papers and electronics.

Sigg metal water bottle in PackTowl - 1

PackTowl Personal model in Face size 10×14″ 0.7oz (25×35 cm, 21g)

Consider slipping the warm bottle into a sock (or a spare pillowcase) for insulation. This is vital if you’ve used scalding hot water. You want to avoid burns. Also, as the bottle cools, it will become a less cozy object to encounter. Don’t startle yourself awake by kicking a hard metal tube in the middle of the night.

You could just carry a traditional rubber hot water bottle while globe trotting. From my perspective, though, they are too large to include in a carry on travel bag. At around 12 oz, they’re also fairly heavy.rubber hot water bottle - 1

A rubber hot water bottle is a single task item. Those of us who enjoy traveling with fewer encumbrances often seek out smaller, lighter, and multi-functional gear for trips. I take no small measure of pleasure in the coup of finding tremendous extra benefit from something I was already carrying.

I always bring my own drinking water bottle to fill post-security at the airport to avoid both disposable plastic bottles and the exorbitant prices at the gate area kiosks. At home and on road trips, we have a water bottle in the car for every family member. Now, I’m simply specifying a particular bottle that can serve an additional function, and I’m a lot more comfortable for the effort.

Gentle heat, thoughtfully applied, can also provide soothing pain relief for some conditions, like my joint pain. It’s hard to overstate the value of something like that to anyone with a chronic condition that’s exacerbated by travel.

There’s just one problem that I’ve discovered with this clever solution: my family has caught on to how I’m using my bottle to warm my bed. The kids give me sad eyed looks and tell me their feet are cold! If you’re traveling as a family, it might be best to upgrade everyone’s drink bottle to a sturdy stainless steel model with an excellent lid.

Your cold feet will thank you, even if the kids don’t.

 

 

*If you’re like me, your cold feet may recur regardless of season or outdoor temperature, which is what prompted me to begin writing this post in August!

Including a Kindle for ultralight carry on travel: when is the weight justified?

To travel with the Kindle, or without the Kindle? That is my question before each trip.

Much of my travel kit is so definitive, it’s hard for me to remember a time when I carried anything different.

For over a decade, I’ve had a silk sleeping bag liner or “sleep sack” (dubbed by our family as “the sleestak” because that’s funnier) with me on every flight. It doubles as a blanket, protects me from chemical-laden hotel bedding, and acts as a neck pillow or cushioned armrest while rolled up.

I could go on and on about other items in my carefully curated collection of travel gear. Most pieces serve multiple purposes. Many of them delight me because they remind me of adventures past. I know what I need, why I need it, and (usually) where to pack it with very little contemplation.

When it comes to my Kindle, however, I’m weighing its inclusion before every trip.

Kindle - 1The truth is, I never need to bring the Kindle. I have a smartphone and a tablet, both of which include the Kindle app. Unlike the dark ages of my youth, I never need to carry a stack of paperbacks (it took four for a cross country flight) these days to ensure having entertainment for hours of airline isolation.

I often do bring one codex in spite of the weight of paper and ink. I like to read a physical book. Books, however, don’t often work best for my physical limitations.

The reason I read on a Kindle is mundane. I have arthritis in my hands and wrists. There is no less taxing way to hold a library in my hands than my Kindle Voyage.* Continue reading

Such a simple solution: easing hip pain during air travel with inflatable seat cushions

Here’s a simple solution to try if you are prone to joint pain during the forced immobility of air travel. Add at least one inflatable pillow to your carry on kit. Even better, carry a pair of different shaped inflatables.

While I’m frustrated by the amount of “stuff” that is now a mandatory part of my travel experience, I carry it all because it helps with different manifestations of my autoimmune condition. I’m not going to stop exploring the world, and I’d prefer not to suffer too much as I go about it.

Inflatable pillows of different shapes and thicknesses can be arranged to buffer hard armrests, prop up feet to change the angle of the legs, support the lower back, or (the most tradition option) cushion a lolling head for a much-needed nap.

This time, my Klymit “Cush” pillow deployed under my knees took the pressure off of an aching hip and spared me from another hour of excruciating pain or resorting to opiates during a trip where I’d prefer to stay in full command of my faculties.

The Klymit pillow differs from most I’ve seen due to its shape. It’s long (~30 inches, inflated) and narrow (9 inches) unlike typical, chair-seat-sized rectangular seat cushions. It’s easily wrapped around, or folded and layered, for varied types of support, and it was exactly what I needed in the moment.

This same feature is oft cited by other reviewers as a negative, but my own experience proves the value in making and marketing a new kind of pillow.

A few hours into a recent flight, my right hip started to ache in a miserable way. It was a stabbing pain, almost severe enough to make me cry out. Exactly how I’d like to behave on a full flight!

The hip is not even one of my main “problem areas” for joint pain, but I’ve been experiencing a prolonged period of more frequent flares in my small joints, and that usually means spikes of pain in the larger joints for me, too. In spite of the flare, I had a trip that couldn’t wait, requiring a flight across the country.

I opted for a layover instead of my usual direct flight to allow myself a mid-journey movement break. I even splurged on a first class seat for one segment of the trip, but sitting for seven hours is sitting for seven hours. Joint pain and stiffness was inevitable.

While the short walk to the restroom and a set of stretches in the galley paused the worst of it, this was a stop-gap solution that couldn’t be prolonged or easily repeated. There just isn’t room on a plane for a body in crisis.

After experimenting with my Therm-a-rest “Trail Seat” cushion, the standard airplane pillow provided by the airline, a blanket, and the Klymit, the winner was clear. Extended to its full length across the front edge of my seat cushion, the Klymit changed my seating angle enough to stop the spasms wracking my hip for the remaining hour of the flight.

The 91-year-old gentleman seated next to me was quite gracious in his silence about my odd maneuvers as I attempted to get comfortable. I’m sure he was curious about all the pillows and props I kept pulling out of my bag!

A pair of airline pillows might have duplicated the effect, but I only had one. With the airlines providing ever stingier accommodations, I wouldn’t want to count on even having that single courtesy pillow.

I could try folding the Therm-a-rest to double its thickness, but it wouldn’t raise the angle of both knees, nor am I sure that it would hold up well to a sharp fold.*

Rolling the blanket would be the next best option, but I was already using it to keep warm. Yes, when my arthritis flares up, I also suffer from both warm and cold spells wherein I can’t seem to regulate my own body temperature properly. That’s why a small down throw blanket is another vital element in my travel kit.

My tote full of inflatable cushions earns me a few stares, but also quite a few envious comments from people wishing they’d thought to pack something similar along. That’s why I offer this post today.

I have personally bought and used the following inflatable travel pillows.

*Later, I experimented with folding the Therm-a-rest “Trail Seat,” and it held up fine to this abuse. It didn’t result in a thick pillow that would stay in position, however, like the Klymit Cush, so wasn’t the best tool for this particular job. I have found nothing to complain about with Therm-a-rest products or build quality.

Hand-me-down clothes & the needs of the second son

A package should arrive tomorrow full of new school clothes for my boys.

This is a pretty common purchase in middle class America in August. Back to school shopping is a tradition. Certainly I grew up with a replenished wardrobe every year at this time, ready to show up in a new classroom sporting unblemished shoes and a fresh favorite outfit. My brother also met September with new sneakers and the latest cool t-shirts in his closet. My mother took meticulous care of our appearances.

But I didn’t follow in my mother’s footsteps. I’m no match for her as a housekeeper, and I didn’t take my kids to the mall for the annual sales. I just replaced what was worn out or outgrown. Usually that meant almost every purchase was destined for DS1, who’s older by several years and has been consistently bigger at similar ages.

This year, I’ve done something a little different in my shopping. Ten of the 15 items in the package are for DS2.

Wardrobe for boy

New clothes for DS2 . One pair of jeans came from a local store, hence 11 items.

He’s the second son.

He has grown up wearing his brother’s hand-me-down clothes.

I thought I should offer him more this year, and here’s why. Continue reading

Windows, culture & great comforts: how do we learn to share what we take for granted?

The world has gotten so much more interconnected. My tiny blog has been viewed by readers from all over the world. Yet, still, we miss opportunities to share our best ideas about life’s most basic conveniences.

My thoughts today are prompted by windows. Specifically, what I’ve thought of as “German windows” since my first visit to that country in the late 1990’s. A recent internet search tells me they are referred to as “Tilt and Turn” or simply “Tilt Turn” windows in English-speaking markets.

Do Germans even have a special name for this type of window, or is it just “a window” because the technology is expected?

The details of why I love these windows are a little off topic for this post, but they are uniquely functional fenestrations. I was reminded of that fact during a recent stay in a “passive house” (i.e., energy saving construction built using European “green” concepts.) Tilt & Turn windows might solve a challenge in my home, so I went looking for sources in the USA.

My specific home improvement aside, I was left with a renewed frustration about the difficulty of implementing well-tested, obviously useful technology that’s ubiquitous in another country here in my home.

Having traveled, I have some idea of the scope of great ideas for making comfortable homes that have developed around the globe. I’d love to bring some of these innovations back with me. Talk about the ultimate souvenir! But, to do so is almost impossible on a middle class budget.

I learned that this problem exists years ago as a first time homeowner with old steam radiators. An 80 year old unit needed to be replaced, ideally with something much narrower and taller. The existing unit stuck out ten inches past an adjacent doorjamb and into the hall! The plumber swore no such radiator existed for sale in the USA. I wasn’t knowledgeable enough then to realize how limited the repertoire of a standard contractor was (and is.)

I now have a plumber who enjoys learning about cutting edge technologies in his field. He’s taught me a lot about what can be had, domestically, and at what (high!) price. Thanks to him, at least I have options to evaluate for myself.

Scottish castle - 1

Scottish castle that had some fine modern radiators

Way back in 2002, I could have purchased the tall, slim, wall-mounted radiator I’d seen in Scotland, contrary to the old plumber’s thoughts. I couldn’t have afforded the system upgrades necessary to use it in my old house, however.

Our tradespeople frequently learn through mentoring relationships and apprenticeships—a tried and true method, undoubtedly—but it appears that the process precludes much exposure to innovation.

Couldn’t a better job be done in sharing building products and processes, at least between regions with similar climates?

Conservative behavior does make sense when we are talking about a home. For so many, it represents the bulk of his financial resources; the ultimate “investment.” No one wants to spend foolishly when it comes to her nest egg.

The flip side to this, however, is a failure to adopt even simple improvements that save resources over the mid- to long-term. The eventual costs end up staggeringly large. Also, right now, we enjoy less comfort at home.

Until you’ve traveled away from home and experienced life as another culture lives it, it is hard to even identify your own most mundane expectations and prejudices as such. Wearing shoes indoors or not? Various household appliances as luxuries vs. necessities? Local swimming pool, recreation center, or library as nice perk, or indispensable locus of community life?

Because I’ve traveled—and indulged a personal hobby of reading and occasionally obsessing about foreign cultures—I enjoy my daily life more.

I use a Japanese deep soaking tub for arthritis relief. I can’t imagine life anymore without an electric kettle (a habit I picked up in the UK) for preparing my tea. My husband and I share sleep more soundly with bed linens arranged in the German tradition—two separate twin duvets of wildly different warmth/weight on our king sized bed.

Most of these are inexpensive objects easily blended into a typical American home. My tub, for example, is a portable model that fits in my shower stall, something like an overgrown version of child’s wading pool, but it provides more comfort than any Western bath I’ve tried. I’d love to remodel my outdated bathroom someday and include a beautiful, high quality, built-in tub of this type, but that may never be economically feasible.

Also, the most intriguing aspect of the Japanese tub—an integrated heater that keeps a bath at a ready temperature—is not allowed in the USA. I think it is the cultural disconnect between people who wash before they get in to soak (Japanese) vs. the idea that the tub is the bath in which you soap and scrub. Only chemically disinfected hot tubs can be kept hot in America.

All of the previous paragraph is assuming I’ve got a handle on the actual code issues with these heaters, which I may well be misunderstanding. I have no background in the building trades, nor am I a particularly handy homeowner. Here’s more about using an ofuro in the Japanese tradition.

There are real technical reasons these are the hard innovations to incorporate. Building codes are different. Electrical requirements are different. Standards are different.

But, if we don’t know the technology exists to improve our lives, how can we ask for it?Boy Harnessed the Wind book cover photo

Another influence on these thoughts. A book I’m reading about how a boy growing up in Malawi experienced, and learned to work with, technology.

How do we, as interconnected citizens of the world, in constant contact with each other, share the best, most comforting aspects of our lives?

Can we do a better job of getting the word out?

Can we share our greatest comforts?