joy

Chronic illness stinks, but I still opt for gratitude

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I woke up this morning and realized:

Yesterday was the first day in months during which I hadn’t needed any* pain medication!

Bottle of pain pillsToday, then, it is perhaps “too easy” for me to write about living with a sense of gratitude in spite of the burdens of chronic illness.

You might assume I’m just having a great day, or that I’m naturally perky.

It is fair to describe me as fundamentally optimistic, but perky? Not so much. I’m decidedly prone to uncontrollable outbursts of snark and cynical enough to doubt the motivations of others.

This “less pain” holiday certainly does, however, make it easier for me to reflect upon the gifts I’ve gained from living with chronic illness.

Most importantly, my pain and physical limitations have made me more empathetic. I’m a better person for the suffering. That’s something, anyway!

I am now more likely to give someone else the benefit of the doubt in frustrating situations. I have more patience for slow movers and “inconvenient” people in my way. I’m far more generous with my tolerance.

Pain is also teaching me to have patience with myself. This is true not just when I need physical accommodations like using the buttons to open powered doors or taking the handicapped stall lest I find myself perched and suddenly realize the knees won’t raise me back up without an assist from a sturdy grab bar.

Bathroom fitted with accommodations for physical disabilitiesGiving myself permission to make use of aids for physical disability also seems to rub off on those nasty tendencies toward negative self talk that can be so undermining to one’s psyche. If I’m worth accommodating when my body fails me, why, suddenly, I can forgive myself for a day’s lapse in will power or my other myriad and sundry imperfections.

I wouldn’t wish a life interrupted by chronic pain or ongoing illness on anyone. Then again, I wouldn’t change anything about my own history if a genie popped out of a lamp and gave me the option.

I’m grateful for the life I have, warts and all. It would be wonderful to find a cure for what ails me, but I’m thankful for the lessons from the illness in the meantime.

Wall art stating “Give thanks”Being sick is beyond my control. Choosing to live my life with gratitude is up to me.

♦

*With the exception of the topical prescription NSAID that eases my most finicky—and much used!—joints in the fingers and wrists, I suppose I should add. A day completely without pain is, sadly, no longer something I ever seem to have.

I’ve had such frustrations with the side effects of opioids and the synthetic alternatives that I have a truly love-hate relationship with them. Taking these pills does make the pain a little more bearable on a bad day, but nothing actually stops it completely when it is bad. Oh yes, and then the drugs screw up my sleep which can create its own vicious circle because fatigue increases my pain!

There is lots of room for improvement in medication for the management of chronic pain.

Profound joy alongside grief when accepting unavoidable loss

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My sincere hope is that I bring more positive thoughts to the world than negative ones. My choice of domain name, ReallyWonderfulThings.me, reflects that impulse and intent.

Lately, however, I’m mired in a slowly unfolding crisis that looms inexorable. Here is one of those snafus inherent to life. I can’t avoid it. I can’t fix it. The best I can do for myself is to endure with a measure of grace.

For my ill loved one whose prognosis is likely death within two years, I’m also aiming to provide comfort and support to any extent that I can. I am wholly inadequate to the task.

I’ve shed plenty of tears and pitied myself because I’m human and so damnably, unrelentingly flawed. I’m already grieving a loss that hasn’t happened yet, even as I nurse the tiny flame of hope that we will defy the statistics, beating the odds and the fallibility of every living body.

Facing my fears one at a time and bringing my intellect to bear on the process is a large part of how I cope. I read studies, research long shots, and struggle with my fundamental powerlessness.

And yet! I have also experienced a shocking and rather profound blossoming of a calm state of resigned joy. I never, ever expected that.

Don’t mistake me; it’s bittersweet. I could talk about my sadness or my fear, and typing these words has already brought a fresh wash of tears. None of that surprised me, though. The joy sure as hell did.

Somehow, staring straight in the face of one of my worst fears brings with it a resolute peace as I’m forced to live in each moment, because, really, that is all that I actually have. It’s easier to savor sharing good times with someone when you know each event is precious, limited, and won’t ever come around again.

There is nothing I can do except live my life as best I can. What a relief to give myself permission to do so in the absence of guilt. How freeing to accept* what I cannot change. I never thought I had it in me.

May good fortune and robust health find you and everyone you care about.

♦

*As the serenity prayer sagely advises. One needn’t be a true believer to accept good advice. I’m pretty sure a number of gurus are preaching along the very same lines.

Happy Hanukkah 5779 ~ Nights 1 & 2

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Looking ahead and making note of the fact that Hanukkah falls early this year, on December 3, 2018–i.e., the evening of the December 2nd when converting from our Jewish to the secular calendar–didn’t prevent it from sneaking right up on my busy family and resulting in a Night 1 scramble.

We nearly missed observing Night 1 altogether. There was a late remembrance of the date. Thankfully, we had birthday candles in a cupboard and made a very quick observance of first evening of Hanukkah. We did better with Night 2, even with it falling on a school night.

Like most modern Americans, we positively swim in stuff. This year, my plan for eight nights of Hanukkah festivity is to alternate a shared gift one evening with a night of family activity the next.

Relaxed play time together is more precious than even Lego sets!

Don’t worry, though. The material gifts planned for Hanukkah 5779 are all Lego related, so new bricks will abound. We’re adding on to Bricklyn, our family display/play space located smack dab in our living room.

Yeah, my “design scheme” for our home is decidedly eccentric eclectic.

Lego Ninjago City set 70620 Hanukkah box buildLego Ninjago City set 70620 Hanukkah book manualGift number 1 and 2 was the hefty Lego Ninjago City (set 70620). As of Day 2, which follows Night 2, remember!, the 4867 piece set is not even halfway built, but that’s okay. Why rush a pleasure?

Happy Hanukkah, dear readers! May your family bask in a warm, bright glow this holiday season.

♦

Note: Originally posted photos were all from previous years’ celebrations. I haven’t gotten a single current picture off of my phone yet, and none of them are particularly pretty. I’ve been too busy playing with the new Legos like a sensible person. Added Lego toy photos in update.

Have Segway; will travel… into the Alps

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My first Segway tour of San Francisco’s Golden Gate Park was a lot of fun and well worth the fairly high† hourly cost. My second Segway tour, along an Alpine trail from the Austrian resort town Seefeld in Tirol, was positively magnificent.

At €78 per person for a two hour tour, the cost of entry was lower. With the option to follow a scenic trail to a kitschy-charming Alpine inn otherwise closed to me due to pain and fatigue, the experience turned out to be invaluable.

Training to use Segway

Segway training before a tour takes between five and 20 minutes

My teen said this excursion was the most fun thing he did during our two weeks in Europe. And, by the way, I let him select most of our activities after I chose the cities we would visit.

Maybe I shouldn’t tell the friendly owner-operator Maximilian this, but I would have paid a lot more for such a wonderful experience. If you find yourself in Seefeld, definitely give him a call and take one of his Segway scooters for a spin!

I discovered Segway Tirol on TripAdvisor, but here’s the website and contact email: info@segway-tirol.info *

I’m extolling the virtues of the Segway today because I live with chronic pain as part and parcel of an autoimmune condition. Aside from arthritis, I also broke a bone in the sole of one foot many years ago… and now it feels like I’m always walking with a pebble in my shoe. I.e., annoying

Before my foot injury, my major occupation when visiting new places was to wander. I could happily lose myself for hours along the twisting byways of an historic city. I don’t enjoy driving, and I hate doing it in an unfamiliar, crowded place.

Public transit is hit and miss for me. I’ll use it, but unfamiliar fare systems provoke anxiety. Did I stamp my ticket correctly? Do I have exact change? With buses, I fear taking the wrong line; on subways, I compulsively check the map at each stop to confirm I’ve headed in the correct direction.

I also fear not getting a seat and falling down on lurching trains and buses. At times—sometimes unexpectedly—my weak hand and wrist joints won’t cooperate with my clinging to a post. Then again, I don’t appear deserving of special treatment or priority seating. Autoimmune conditions are often invisible to the casual glances of strangers.

I prefer the freedom and pace of walking… but I can’t go very far by foot any more.

Riding a Segway scooter does require one to stand. It wouldn’t be suitable for anyone with major foot or knee, or ankle problems. My pain seems to be exacerbated by the striking motion of stepping, however, so standing on the Segway is pretty much all right, most of the time.

I do have days where even my knees are affected by my arthritis, but most of my issues, most often, involve the small joints in my hands and feet. I wouldn’t try to ride a Segway if I were having a major flare, but the fatigue would probably stop me before joint stiffness anyway.

Stepping aboard a Segway scooter is like stepping back to a healthier, more able time and condition for me. It feels like freedom.

Mobility is a key component of personal empowerment. That’s true for the ability to afford a car in many American suburbs, and even more so for the giant leap from total dependence upon others or being housebound to the liberty of self-conducted, autonomous activity for those who can’t walk in the average way.

You get a taste of the utility of curb cuts, ramps, and automatic doors as a parent pushing a baby stroller, but it is hard to appreciate all the little motions a healthy body allows until some aspect of “what’s typical” is removed from your arsenal.

I didn’t stop grinning for a single moment I was aboard Segway Tirol’s scooter. The scenery was beautiful. The guide was kind and accommodating. Mostly, though, I was exhilarated to be conducting myself along an Alpine path without pain or fear of going too far and then succumbing to fatigue in an inconvenient place.

Some people think Segways are goofy looking toys for nerds; others consider them a sidewalk nuisance that should be banned. I’d guess most of those people are fully physically able and have no idea how poor the options are for those who aren’t.

For myself, I will be spending more time on two low, gyroscopically balanced, electrically powered Segway wheels in the future. I will seek out tours and rentals of these stable, easily controlled mobility devices. I may look goofy, but I will be grinning like a fiend.

It’s hard not to be happy when you’ve been set free.

♦

†Around $150 pp for 90 minutes, if memory serves.

*I booked our tour just the day before we took it. Maximilian was quick to respond and very flexible. Our “group” was just the two of us. There was no upcharge for the creation of a tour at our convenience!

Hanukkah family fun, night 8: Find the fun & SNAP, the job’s a game

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Click here if you missed Night 7.

Mary Poppins* fans may have caught the quote in the title for this post. In the “Spoonful of Sugar” song from the movie, she makes the point that one can lighten a chore by adding a little fun.

Our boys aren’t working graveyard shifts in a factory, but we do see practical applications for teaching them about electronics. Tonight’s gifts come from the series of educational toys from Elenco, Snap Circuits. 

Hanukkah 8 gifts Snap Circuits 300Snap Circuits do great job of easing a task that some would categorize as work. They are packaged sets of pieces that allow kids“from 8 to 108” per the boxto do experiments with real, working circuits without any messy, skin-singeing soldering.

Go on: ask me why I’m concerned about singeing oneself with solder. No, don’t, because I’m clumsy and easily distracted, and burning flesh is gross. I loved my electrical engineering classes, but lived in fear of implementing what I learned. I would’ve enjoyed these Snap Circuit sets in college!

Instead of soldering wires, the connections are made with oversized snaps like you would find on common garments. They’re as easy to click together as Lego bricks. Unlike a simple Lego connection, however, one must develop an understanding of how electricity flows in order to create working circuits that make electronic projects work.

Never studied electronics? Don’t worry! There’s a very specific manual to walk kids through the different projects.

The boys have had a Snap Circuits starter set for years, and the SC-100 Junior Starter Set is a fine place to begin at any age. Once you have your kid has a grasp on the basic working of the components, you can add on additional kits that either continue with a general education in electronics, or follow a particular theme that might appeal to the user.

For the eighth night of Hanukkah, my older son and possible future game designer received the SCA-200 Snap Circuits Arcade kit. His brother opened up the UC-30 Upgrade Kit SC100 to SC300.

Hanukkah 8 gifts Snap Circuits AAs a parent, one of my favorite things about this company and these kits is the commitment to keeping the sets modular and re-combinable to extend their value. I really appreciate having the choice to buy just the additions I need to move from a beginner’s set to one with more advanced experiments and projects.

Unlike some other company’s products, I’m not forced to either:

  • pay extra for parts I don’t need, or
  • carefully work through lists in tiny print on the back of the box for multiple, similar sets to determine whether or not I’ve missing anything that sounds fun and/or important.

And it isn’t all work with no play! The kids genuinely enjoy fooling around with Snap Circuits kits because they can make real, working models that do stuff. Lights will light up and buzzers will sound, and they will do so more reliably than most kids can manage with regular electronic components even in an educator supported environment.

Naturally, the stuff my boys want to do usually includes “make a loud, obnoxious buzzer in Mom’s ear” or “try to launch the spinner into my brother’s face,” but Elenco isn’t selling magic beans or the promise of more perfect kids. With Snap Circuits, they are selling appealing sets that let children experiment with—and learn about—real electronics without too much muss or fuss.

A supportive adult could be helpful for a total novice or a younger child, but no supervision is necessary to make these kits diverting for kids who like to take stuff apart and/or build things.

Our Eight Nights of Hanukkah Gifts are generally things that we can enjoy as a family. These fit the bill because they give the kids something to play with that leads naturally to learning experiences we like sharing with our boys.

How does that project work? Why did it fail before? What else can you do with those elements? What does that inspire you to try next time? What’s the correlation between this toy and the circuits you can see in household electronics?

I worried a little about ending eight days of holiday giving with the “educational” present, but I shouldn’t have. Snap Circuits are too good. The boys were genuinely pleased to expand their collection.

Happy Hanukkah!

Hanukkah 8 hanukkiah extinguishing itself - 1

חגחנוכהשמח

♦

*If you’ve never read P.L. Travers’ novels about Mary Poppins, which served as inspiration for the popular 1964 Disney film, please consider doing so. The books were much darker and weirder than the film version, and I loved them as a little girl. This is a case where I think the film is a real classic, but almost a completely different creature from the original work.

Some people on GoodReads seem to find old-fashioned child rearing methods so inappropriate, they can’t even enjoy the books. All I can say is that none of it bothered me as a girl. I would gladly put up with an imperious guardian to enjoy magical adventures; why not let today’s children make that choice for themselves, too?