autoimmune

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

willo Here's how I see it Tags: , , , , , , , , , , , , , 3 Comments

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…

Capsule wardrobe for San Francisco in October: nary a neutral in sight

willo You might find this helpful Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 4 Comments

My capsule wardrobes reflect my needs and values. I’m less about fashion for its own sake, and more about function that avoids exacerbating my chronic health condition.

That said, I like to express myself with my wardrobe. I feel better when surrounded by beautiful things, including the clothes I wear.

SF wardrobe in closet - 1

I’m particularly fond of today’s capsule wardrobe because it involves almost no neutral colors. Instead, it’s built around coordinating shades of rich gold, acid green, and deep purple. This is my favorite autumnal palette.

I love wearing these vibrant colors, and I even enjoyed the way they looked hanging together in the closet at the hotel. No neutral-based travel wardrobe would offer me that side benefit!

Compact capsule wardrobe saves precious vacation time

Packing an effective combination of pieces in a capsule wardrobe means I can dress for any occasion that arises during my trip without wondering whether I will be:

  1.  suitably attired, and
  2. sufficiently comfortable.

I care about both of these points, even more so when I’m joining my high profile* husband on a work-related trip. I had no role to play at the event DH was attending, but other participants were staying in the same hotel. It wasn’t out of the question to bump into someone who knows me by sight.

Dressing appropriately while maintaining health & function

My autoimmune condition involves widespread joint pain. I suffer particularly from foot problems. My wardrobe is constrained by the limiting factors of shoes that accommodate bulky, rigid orthotic inserts and clothes that don’t squeeze or pinch even when inflamed joints swell.

My symptoms flare when I’m tired. Travel, no matter how wonderful, comes with physical and sometimes mental stress. Traveling light is one way to reduce symptoms of my condition: I’m less likely to wear myself out, physically, with a lighter weight bag.

Continue reading →

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

willo Here's how I see it, You might find this helpful Tags: , , , , , , , , , , , 1 Comment

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 →

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

willo Would this solve your problem? Tags: , , , , , , , , , , , , , , , , , , 3 Comments

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

willo Would this solve your problem? Tags: , , , , , , , , , , , , , , , , 3 Comments

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.