Pacing yourself: good advice for chronic illness, and everyone else, too!

It’s been so long since my last post, subscribers and regular readers may have wondered if I fell off the face of the Earth. Fret no more! I’m alive, but I have hosted a major holiday party and traversed a healthy arc around our little blue planet.

Between the trip–which I’ll write about soon–and the annual marathon that is serving Thanksgiving dinner to 19 people, I have been running right at the edge of my available pool of energy.

I have been writing, but I haven’t finished anythin…*

If you can believe it, I have over 50 draft posts in various stages of completion. What I haven’t had is any stamina left at the end of these busy days to polish up a given post for presentation to my readers.

I think I’ve mentioned it before: I’m not a real-time writer. Or, at least, I’m not even attempting to keep up with the pace of life since this blog is a hobby for me. I’m writing about Really Wonderful Things because I enjoy it. I’m trying to keep it that way.

I feel bad when I fail to post regularly. I cherish the sharing aspect of my own blog and those I follow. Slacking off on my posting schedule of a mere two pieces per week leaves me feeling guilty, and even a little anxious.

What if I lose a lot of followers? What if I lose a favorite frequent commenter?

And this is where I have to remind myself of the reality of my situation. I’ve written about accepting my limitations in the context of travel, and I think I give myself plenty of permission to do so when away from home.

What’s much harder is to take my expectations down a notch at home. Real life is a marathon, not a sprint, but there are so few obvious places to let things slide when it comes to parenthood and caring for your family.

The thoughts sound like this:

“If I don’t make this one birthday count, it is gone forever. My child won’t have good memories of turning X years old.”

Or this:

“Extended family and a dozen friends are coming for Thanksgiving. If I don’t make it a good one, I’ve ruined a holiday for 20 people.”

There’s a kernel of truth here, but most of it is anxiety talking. I don’t invite over the kind of “friend” who would blame me for a Thanksgiving catastrophe. If I had family members who actively tried to lay down that kind of guilt trip, I would consciously reject it as nonsense.

Beneath my conscious mind, however, is the deeply ingrained message I’ve been internalizing since infancy that 1) opening my messy house to people as is tells them I don’t care that they’ve come, and 2) any failings in our family’s hospitality belong to me, the wife and mother.

I’ve put a lot of effort into inviting people over “in spite of” the usual state of our home. Life can be so hectic, and it is hard to find a time that works to see good friends; an unwashed load of towels or a project-in-progress in front of the TV can’t be allowed to block a chance to socialize with companionable souls. Those moments are too precious.

And all of that was before an autoimmune condition reduced my available store of energy from less-than-average to downright-low. At this point in my life, there are days where I choose between cleaning up the kitchen at the end of the day or eating dinner; some days, I fail to do either because I’m too tired to accomplish even one “trivial” task.

So when it comes to hosting Thanksgiving, for example, I had to choose between planning the menu and buying ingredients for the dinner (the main point of the event), or preparing a more comfortable guest room for out of town visitors. And did I mention that I was leaving town for an international trip 48 hours after Thanksgiving dinner?

Tidying the great room where we hold the party was such a distant last on my list of priorities, it was hard to even see it at the horizon.

Without a doubt, I get some flak about these failings from people who truly don’t understand how I can be taking a break on the couch when people are coming over within hours and my house “looks like this.” I know that I need that break or I won’t be able to stand on my bad foot to prepare a meal; not everyone can or will understand that point.

Honestly, I hope they never come to a point of realizing how hard simple things can be for someone with chronic illness. It really stinks. I wouldn’t wish is on my worst enemy.

Add to my list of “the hard work” of hosting a large party the effort to reject others’ unrealistic expectations for me. It may be the hardest thing I deal with at some events!

We welcome others into our homes to share time, experiences, and the very real products of our hearts. We cook for each other and care for each other because we can, and because we want to.

When I take whatever energy I have and translate that into action in real terms, it is a gift to those I love. I choose to believe it will be received that way, whether I make a fancy shape of it or hand it over in a messy bundle.

This holiday season, I hope we can all focus on why we invite others to share with us. Spend a little less effort on worrying about how you measure up! If you find yourself leaning toward the latter, back up a step and take a breath.

It’s a privilege to be free to celebrate as we see fit.

It’s an honor to host friends and loved ones in our homes, and to have more than we need to share.

Try not to go down the rabbit hole of should have and could be; be grateful to enjoy what is, here and now, and those who’ve graced you with their presence.

And, if someone makes you feel less than great for what you have to offer, leave them to their negativity and add it to your list of blessings. At least you are glad for what you have, and who you are!

I will try to do a little better about piping up twice a week and staying in touch with my followers. I sincerely wish for a season of peace, abundance, and joy to everyone reading, and everyone else besides.

Cheers!

*Quoting a cute, hand-drawn postcard I had pinned outside my college dorm room. I wonder where that card has gone…

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!

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