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

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.

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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!

Pain makes me less approachable; pain makes you like me less

When I’m in pain, I am certain that I’m less receptive to the good in the world around me.

A recent study showed that it is possible to diagnose depression remotely by analyzing the photos people post to social media. Depressed people view the world so differently, their acts of self-expression change.

Along similar lines, I’ve noticed that I view people around me in a different light when my chronic pain flares. I’ve caught myself cynically judging the sincerity of a smile on a woman’s face, or angry at a pedestrian for his freedom to walk presumably without pain.

This isn’t my natural personality. I have a sincere love for—and trust in the goodness of—humanity that my darling husband finds charmingly(?) naive.Untitled

I like to joke that I’m a functional misanthrope, but that’s got more to do with my introversion and some social anxiety than any real disdain for humanity. I am overjoyed by the heights of human achievement. I believe that we, as a species, will persevere and do wonderful things.

That’s my perspective. That’s who I really am.

Pain, however, distorts my every impression.

And, I’m less likeable when I’m in pain. Continue reading

Brace yourself! Comparing options by Futuro, Mueller and Wellgate for slim(ish) wrists in need of support

This post is for a very specific audience: those who have carpal tunnel or other symptoms that require wrist braces to reduce tingling and prevent damage to delicate nerves.

No one wants to buy a medical device. When you need one, you’re often dropping by the drugstore on your way home from a ten minute visit with a harried doctor. S/he told you to buy an “X”; there is only one “X” for sale at CVS. You pay retail and head for home, praying that “X” will provide you with the relief you deserve.

Futuro (Night) Brace: unisex & ambidextrous

That’s how I ended up with my first wrist brace, anyway. It’s a Futuro model. With tax, it cost $33.46. Of course, I couldn’t use my Flexible Spending Account at the cash register because it’s an over the counter (OTC) item.

I have grave doubts that there is any recreational use of a wrist brace, but I’m sure the half hour of my time necessary to submit this receipt for reimbursement is providing valuable fraud protection. Ahem.

The unisex Futuro Wrist Brace (Night) has one feature that (sort of) makes it stand out from others in a positive way: it can be used on either the left or right wrist. I did alternate nights with either wrist in the splint when I first got it, and it is capable of alleviating the majority of my pins and needles sensations for both hands.

The rather obvious downside of an ambidextrous wrist brace is that the fit is generic. This is the bulkiest brace I’ve worn. I don’t enjoy sporting any of them, but this one is the least comfortable, also offering somewhat less relief from the pins and needles sensation that warns me that a nerve is being compressed.

I think the Futuro Wrist Brace (Night) is just too big for a medium sized woman like me. It can’t hug my wrist sufficiently to prevent all of the inadvertent bending that triggers my symptoms. Continue reading

Exposé: worst face scenario with an autoimmune condition

A terrible thing happened this morning.

I woke up looking as bad as I’ve been feeling.

Sigh.

#LivingWithRA

 

 

*Important note: I felt this way a couple of days ago. The silly wordplay for the title came to me last night, when I scheduled the post. The sentiment resonates over and over again, unfortunately! Thanks for reading.