Month: July 2024

10 Years Later #7: Reviewing Observations

~ Kristin ~ Leave a comment

This blog began when I left the classroom in 2014 because of the symptoms of an autoimmune disease. This post was written 1 year later (June 2015) when I was struggling to re-enter the work world. It’s interesting to look back now that I’ve completed 4 years in my classroom in Detroit. While I was often sidelined in those early days while I learned how to read the signals of fatigue and how to attend to my body’s need for care, I have now found some strategies that keep me going. Posts like this one serve as a reminder of how much healing I’ve experienced in this next chapter and how mindful I need to be as I move forward.

Last June I resigned my full-time teaching/school administrator position to relocate to Michigan from Missouri. I did this because a) I love my husband; and b) I have a life-style changing auto-immune disease. I took six months completely off and have been gradually introducing more and more work into my life since January. I’m almost a year into this grand experiment, and  I’m ready to review some of my observations.

After the initial dust settled from our cross-country move, I spent a significant amount of time on the couch watching Netflix, in my bed resting, at the gym exercising, and on my computer blogging. I really needed that time to recover after over 20 years of parenting, schooling, and working at or above my human capacity.  It was lovely — I had time to make friends, I began to listen to my body, I reconnected with my love for writing. It was healing physically, yes, and also emotionally.

For the first time in twenty-two years, my husband and I were living alone, enjoying a slower pace, and sucking up every minute of it. But, I couldn’t quite rest easily because I didn’t have any students in my life. I know, I know –over the past umpteen years I have fussed and fumed about the kids that have sat across the table from me — they are egocentric, they don’t meet deadlines, and, indeed, they smell bad. But, you know, I love them. I can’t seem to get enough of them.  

Something magical exists within each of us — an innate ability to learn, to process, to interact and be changed — that will never cease to take my breath away. I had to have students back in my life.

It started with just one guy — a graduate student who needed help on his dissertation. What a joy that was! I got to have a text-based conversation with him about educational practices and how they impact learning! That taste just whetted my appetite, so I moved onto a retired writing instructor who had written a novel and just wanted a final proof for grammar and punctuation errors. That led me to set up a profile on an online service connecting teachers with students for one-on-one assistance. In six months I have logged over 120 hours with almost twenty different students ranging from sixth graders to graduate students. I’ve worked on research papers, vocabulary lessons, dissertations, speeches, and test preparation.  

Each lesson is different, each student a challenge. So why didn’t I stop there? While tutoring independently, I could still maintain my exercise regimen, still build friendships, still find time to rest. Why did I have to push the limits and take on a job that will soon be at forty hours a week for the duration of the summer? Because I had to know. I had to know if I was imagining my limitations or if they were real. Maybe I was just burnt out from teaching and sorely in need of a vacation. Maybe I had imagined all my symptoms.

Surely I didn’t have that much pain, that much fatigue, that much stiffness. How could a regular job be too difficult for me? Because it is.  

This week I worked thirty-two hours at the agency and an additional seven hours tutoring. Not quite 40 hours in all, but it was a bit too much. Yesterday, at the end of an eight-hour shift, I met some friends for drinks and dinner. I called one of my friends by the wrong name — twice!  This is a friend I have known since the fall! I was mortified. I thoroughly enjoyed the evening, but I was home before nine and crawled straight into bed — no reading, no television, no nothing. I was entirely depleted. This morning I woke up crabbily.  I can feel the inflammation through my body like an electric current.  It is as if I am an electric blanket that has been turned up to ‘high’ —   I can feel all the wires as they heat up.  My lips are dry and tingling. My back and hips ache. My eyes are screaming, “If you think you are going to put those contacts in, think again!” Yup, it’s too much.  And, just to be sure, I am going to push it a little further.  

This week will be a little lighter because of a trip I am taking for the second half of the week, but then I am certain I will be working over forty hours a week for the duration of the summer. Why don’t I just walk away now? Because I know me. If I walk away right now, I will rest up for a few weeks then start thinking that perhaps I was imagining my fatigue, maybe I didn’t really have all that pain, maybe my symptoms weren’t real. Nope, I’m not going to walk away right now. I am going to finish the experiment all the way to the end to be sure I come to all the right conclusions. My hypothesis is that I am going to be utterly exhausted and ready to slow back down, but I’ve got to complete this experiment to be sure.

10 years later…

It feels like I’m still experimenting. Right now, as I lie in bed, I can feel that electric current in my hips — I sat a lot yesterday — and I know I need to do some yoga and that an epsom salt bath is in my near future. I do still get exhausted, but I know how to take rest and how to recover, so I’m gonna keep going, keep meeting new students, keep finding that innate ability within them (and me) to learn, to process, to interact, and to be changed.

That is my current — 10 years later — review of my observations.

Ten Years Later #8 Low Batt.

~ Kristin ~ Leave a comment

After writing White Flag Warning! earlier this week, I was scrolling through some old posts when I saw this one from early 2016 that reminded me how far I have come in my health journey. Where now I might end up on the couch once every few months, I used to end up there almost daily. The reason why I am doing so much better is exactly what I mentioned on Monday — my life style routines which include not only dietary choices and exercise and regular visits to a variety of practitioners but also regular attention to how much battery life I have and what kinds of things help me recharge.

In 2003, Christine Miserandino explained chronic illness to a friend in terms that are now widely referred to as “The Spoon Theory”, see it here.  Since that time, people like me, who have chronic illness, have been thankful to have a way to more accurately describe what it feels like to be totally depleted, or “out of spoons”.

We were away this past weekend at a basketball tournament in Chicago, and, having used all of my spoons, I shared the analogy with my husband. I told the story, as best I could remember it, and he said, “Hm. I like the analogy.  I get how spoons can carry, or hold, energy.”  Yesterday I was talking with my daughter after almost two days of trying to replenish my store of spoons. She was trying to understand how a whirlwind trip to Chicago took me out of commission for most of two days. My husband prompted me to share the spoon theory with her. I did. She said, “so can you store up spoons in advance?” I replied, “No. You can borrow some from the future, but you’ve got to pay them back. That’s what I’m doing now.”

So, if you got this far without clicking on the link above, you are probably scratching your head and trying to decide whether or not you are going to continue reading this cryptic post or if you are just going to close the window. If you clicked and saw the page-long “spoon theory” you might have said, “Well, I’m not gonna read all that and this blog post.” I know. That’s why in the past three or four years I have only shared the spoon theory a half a dozen times. It’s an effective analogy, yes. But it takes some explaining.

So, I was going through my motions this morning thinking to myself, “is there a more accessible way to convey how I am feeling?” I mean, people with chronic invisible illness find themselves in this position rather often. People look at us and think, “She looks alright to me!” They don’t understand when we “can’t” stay to watch the second round of games in the tournament because we have to go sleep. They don’t understand why we always make plans “tentatively” because we might feel like crap on that day. They wonder why we didn’t make it to Bible study in the morning, but we were able to teach a class in the afternoon.

Maybe we could think of it in terms of limited battery life. We all carry devices around with us wherever we go, don’t we? They all rely on batteries. To make sure that our devices are functional all day long, we plug them in every night at our bedside. Some of us have chargers in our cars. In many public places — airports, malls, libraries –we can now find charging stations. We push our devices to their limits. They get depleted; we have to plug them back in or they will be rendered useless.

Most people have internal “batteries” that can keep them running for twelve to fourteen hours with a minimal recharge sometime during the day. They might be up and out the door before seven, sipping a cuppa joe on the way to work. They might need a brief pause around 10 o’clock and some kind of a lunch break, but then they are good to go for the rest of the day. They might even have enough battery life left to get dinner with friends or attend a play or a concert in the evening. In fact, they can keep up this pace day after day and even get away on the weekend occasionally without fully depleting their battery life.

Not me. Not any of us with chronic illness. Our batteries have been rendered less effective. I might have up to eight hours of battery life per day. If I start off at 7 am and don’t take a break, I will almost certainly be done and in my pajamas at 3 pm. So, I don’t usually function that way. I use 20% of my battery, then I sit down and try to ‘re-charge’. I may get 5-10% back if I sit down, put my feet up, have a cup of tea, or close my eyes.  In that way, I s-t-r-e-t-c-h eight hours of battery life into twelve to fourteen hours of wakefulness, if not usefulness.

Occasionally, I throw all caution to the wind and decide that I am going to take a chance, push my battery to the limits, attend a basketball tournament out of state, and suffer the consequences. That’s what I did this last weekend.  I had already had a pretty busy week — I had tutored twelve hours, taught the first two classes of the semester, arranged for doggy care, done laundry, tidied the house, purchased new jeans, and packed — before we woke at 5:30am to prepare for a journey to Chicago that would begin at 7am. We arrived in Chicago around 11am CST, found the gym, got some lunch, then watched two basketball games. Of course we “sat” at the top of the student section, so, because they stood for the whole two games, we stood for the whole two games. All of this was a physical drain on my batteries. And then there was the emotional drain. All emotion drains battery life — positive and negative. While at this tournament, I saw many former students and some former colleagues. There was so much hugging and smiling! I loved it, but it drained me. By the time we headed back to the hotel at 5pm, I was done. I put on my pajamas, crawled in bed, and began to read student papers. (Yes, I realize that I said I was done and then I continued to do more — I’m telling you, I threw caution to the wind!) My husband and the others went out to get food. When he got back, I had barely enough energy to chew. I ate my dinner, then fell asleep before one episode of “Modern Family” could play out.

Then I slept for TWELVE HOURS.

We got up at 8:30am, grabbed a quick breakfast and headed back to the gym for more reunions, more hugging, more standing, more yelling, and more cheering — four games worth! Then, at 9:30pm, we started the trek back to Ann Arbor. Since my husband was driving the van following two charter busses full of students, I wanted to stay awake to keep him awake and alert. So, we drank caffeine at 10pm and chugged along. It was like I had purchased an external battery pack. I was wide awake on purpose. We blared music and sang. We talked and laughed. Finally, at 2:15am, we arrived home. Of course I couldn’t go straight to sleep. I had to run out that external battery, which was, of course, disposable, not renewable.

I found that out halfway through my sleep, if you can call it that. Having depleted all of my own battery, and the external battery, my body didn’t even have enough energy to sleep. It started to scream from the inside out — a burning sensation filled my gut, my joints ached. No position was comfortable. I thought I would have to run to the bathroom to be sick.

Have you ever run your phone battery down so low that the phone actually shuts off? When you first plug it in, you get that image of a battery with a thin red line showing the depravity of life you have allowed your phone to deplete to? Guys, I had a screaming red line.

For all of Sunday I whimpered, whined, and convalesced while my husband, dear man that he is, carried my charge cord around and kept plugging it in — he brought me scrambled eggs and toast, which at first I couldn’t even eat; he ran me an epsom salt bath, which I gladly soaked in for an hour; he brought me tea, and water, and ice; he watched a movie with me; he endured an emotional meltdown; he encouraged me to go to bed at 7:30pm.

Then I slept for TWELVE HOURS. AGAIN.

It’s now Tuesday morning, and I’m pretty sure my battery is at about 70%. I’m gonna go amble off to the gym, hobble onto the treadmill for a few minutes, then sit in the jacuzzi. After that ‘workout’, I will meet with three students and prepare for tomorrow’s class. I hope I still have 15-20% left at 7:30pm so that I can sit in on a board meeting conference call.

But if not, I’ll just have to crawl into bed and sleep some more. That’s the price of throwing caution to the wind when you have limited battery life.

He gives strength to the weary and increases the power of the weak. Isaiah 40:29

White Flag Alert!

Featured ~ Kristin ~ 1 Comment

Well, you probably could have called this one.

That’s right — my body started waving a white flag. Not insistently, not wailing in pain or gasping for breath, but nevertheless, waving that flag. I was leaving one parent and driving to the next before a planned holiday celebration with another relative when I first felt a tapping on my shoulder, heard a subtle clearing of the throat, and then turned to see it — the small square of white moving back and forth in my periphery.

I waved it away — I had one more stop before I arrived at fun, and I was determined to get there.

That “stop” was not glorious — it involved some demanding (from me), some literal bile (from the patient), some apologizing (from me), and some explaining (from the medical personnel).

Sigh.

I stayed until the situation was resolved then climbed back into my vehicle which has seen a lot more of me lately than is typical. “Come on, Tina Turner,” I said to my smoking hot Cayenne Chevy Trax, “let’s find some coffee and get to the fun.”

Now, some of you who have been following along just felt an involuntary raise of your eyebrow. Coffee? you ask. I thought you don’t drink coffee because it interferes with your homeopathic medicines.

Sssshhh! I’m enjoying my delicious oat milk latte over here!

Sure, I should’ve been chugging more water, doing some breathing exercises, and finding other ways to offload some cortisol, but wouldn’t you prefer an overly priced coffee beverage, too?

I have been slipping away from my regimented life just a bit as of late. Sure, I had intentions of getting back on my Artist’s Way journey — reading and writing every morning and taking artist dates. Yes, it’s summer and I have a break from my school workload and the freedom to implement routines. But, starting the summer off with a trip followed by multiple shorter trips to my parents’ has probably created a little space in which I could choose routine or impulsivity.

And, when left to my own devices, I am probably going to be impulsive. When my sister-in-law texted to see if we wanted to join them for dinner at the local Mexican place, my mother and I said “Of course!” When my brothers ordered oversized Margaritas, I did too! When I drove past a Starbucks, I pulled right in and got my fix! These things might seem small — a margarita here, a cup of coffee there, but when combined with the added stress of family illness, and some inconsistent sleep patterns, a person like me is probably going to get a few symptoms. And, typically when I get a symptom or two, the best way to resolve it is to head to the couch.

I’ve written a lot about my time on the couch as a person who lives with autoimmune disease, but I imagine every body has its limit and is prone to admit surrender if pushed too far.

We do demand a lot. We expect our bodies to be able to work, exercise, shop, garden, socialize, support our family and friends, and still put a meal on the table most nights. And, our bodies, amazing as they are, typically step up to the task and deliver — day after day after day. They can handle stressors such as difficult seasons at work, typical family crises, and other breaks in routine without much difficulty, but even for healthy bodies, stressors can accumulate and force us to take rest.

But when I initially saw that white flag, I was not interested in rest. I wanted to have some fun. So, clutching my steaming drink, I finished my drive to the destination, walked in the house, and settled in with my brother- and sister-in-law. We’d had this celebration scheduled for a while, and I had been looking forward to it. We chatted and caught up, we ate delicious (as usual) food, we played a game, we drank wine, we stayed up late, and I woke up in the morning with a big white flag waving over my bed.

“Fine,” I said. “Gimme a minute.”

I crawled out of bed, did a little yoga, grabbed my phone and headed out on a short walk. I checked in with my parents, then, dialed the number of my primary care physician. I gave the symptoms and the person on the other end of the phone said a nurse would call me back.

I glared at the dude with the white flag, “You happy now?”

He receded from my view, and I headed back to fun — coffee tasting, a delicious breakfast, more chatting and laughing, and then back to Tina Turner and another hour in the car.

When I arrived home, I took care of a few responsibilities and was headed out for another walk when my phone rang. It was the nurse asking to review my symptoms. She ordered antibiotics, extra fluids, and — of course — rest.

And that’s what I did all weekend.

It is annoying to be sidelined, of course, but it is also a good reminder. I have routines and rules because they keep me feeling well. They keep me healthy and able to manage the everyday demands and — usually — the unexpected stressors that often show up in life.

It’s really not unreasonable to get regular sleep, eat a healthy diet, get a little exercise each day, and avoid the foods and beverages that tend to give you a little trouble. And, for the last many years, I have — with a few diversions off the path — been following a pretty regimented life course in order to stay healthy. When I veer off the path too far, I get a weekend like this to remind me to get back to it.

Now, I’m not saying I’m not gonna occasionally enjoy an oat milk latte — I mean, I found the best one ever midway between my house and my parents’ house –nor am I going to always turn down a margarita — despite the excessive amount of sugar contained therein — but I am going to be mindful of the accumulative effect of these choices, particularly when I am managing more than typical amounts of stress.

That’s the thing, isn’t it? When we are under stress, we want our historical comforts — ice cream, peanut butter and jelly, warm coffee, a drink with friends or family — and they can, ironically, make us feel “cared for”. And really, I’m not at all saying those things are wrong. In fact, during times of stress, we should care for and even treat ourselves. We just have to remember how our body responds to stress and what it needs to stay healthy.

For me that means a lot of routine: water, daily vitamins and supplements, a probiotic, green (and occasional black) tea, a gluten-free/dairy-free diet, daily exercise including yoga and walking, writing, reading, and plenty of rest.

So, I’ve been spending a few days lying around, dabbling in the garden, eating fresh fruit and veggies, drinking a small amount of tea, watching movies and reading books, and my body is recovering. It’s taking a little longer than I’d hoped, but I’ll be ready to roll again pretty soon.

And hopefully, when I get rolling, I’ll stay on course for a while — and my oat milk latte can continue to be a treat.

Shhhh! A girl needs at least one extravagance every now and again.

Role Reversal

Featured ~ Kristin ~ 1 Comment

Since I returned from my stint as dishwasher during A Week in the Desert, I’ve been leaning into another role — that of daughter. Of all the positions I’ve held in my life, I’ve held this one the longest. I’ve been a daughter since the day I was born, but the role today looks nothing like it looked on that first day.

On day one, I was totally helpless and in need of almost continuous 24 hour care. I was the third of four, so by the time I showed up on the scene, my mom and dad already had a two year old and a four year old to tend to, but somehow they found a way to protect, feed, diaper, rock, clothe, and otherwise care for me in those early days.

And their work became a gradual release of responsibility — to show the four of us how to move through life without harming ourselves, to teach us first how to eat solid foods and eventually how to prepare them ourselves, to manage our own personal hygiene, to find our own ways to deal with the challenges and disappointments of the world, to find, make, or buy our own clothing, and to eventually care for ourselves and then the others in our lives.

And in these last few years, our responsibilities have shifted our gaze back to where we began.

This is the way of life, of course. Many of us get the opportunity to parent our own children, to move them through the phases of less and less dependency on us, and some of us also get an opportunity to witness our parents as they gradually lose their independence and need us to step back into their lives to lend a hand.

We are there right now, and although our parents appreciate our willingness to step back in, it is not without some annoyance at their need. Last week, after we returned from Arizona, I made my way first to the hospital to check on my stepfather who had had a major surgery and was in the beginning stages of recovery. He wanted me to visit, but he also wanted me to leave. I can’t get inside his mind, but I can see that he is rather helpless — dependent on hospital staff to bring him ice chips, to help him move from the bed to the chair, and to change his dressings. He didn’t likely see this for himself — he didn’t see cancer, surgery, or an extended hospital stay, and I can tell he’s not a fan. He has never minded others making him food or refilling his drinks, but being in this compromised situation is somewhat humiliating, somewhat depressing. So, as I check in, I remind myself to be kind, to be respectful, and to help where I can, and I have do things I’ve never had to do before. I have to tell him what day it is, remind him that he won’t be going home for a while, assure him that I will go care for my mother.

He reaches for my hand as I leave — this one who’s never been super emotionally demonstrative — and I promise him that I will call, that I will be back in a few days.

I leave and drive to my mother’s, watch her take the rollers out her hair and apply lipstick, stand closely when she makes her way down the stairs, help her into the car, buckle her seat belt, walk slowly beside her when we enter a store, move away to give her some freedom, but stay close enough to make sure she is safe. While she appreciates me being there, she does not like to role shift. She has been fiercely independent even during times when her ability to be so was quite limited, so to depend on her children — the very ones who she has spent her life fighting to provide for — is quite uncomfortable.

But depend on us she must. Because of her limited vision, she can no longer drive, yet she has myriad doctor appointments and her husband is an hour away in the hospital and will likely be there for a couple more weeks. We take turns showing up — fixing things around the house, vacuuming the floors, driving her to appointments, helping pay the bills.

She thanks us over and over and over, and sometimes she says, “Now go home. You have your own things to do. I am fine,” but as she says them, she seems a little unsteady on her feet, a little weary, a little unsure.

Nevertheless, I leave. I drive back to the hospital. I sit next to my stepfather as he swallows the ice chips he’s been allowed for the hour. I find his phone charger. I listen to his nurse detail his progress and the goals they want him to meet before he is discharged to rehab. I sit next to him as one of the Bourne movies plays silently on the wall-mounted television. I hear his roommate snoring. Then, as I stand to leave, he reaches for my hand.

I promise to call. I assure him that my brothers are checking on our mom. I say I’ll be back in a few days. I walk away.

Back in my car, I call my mother to see if she’s taken her medication, to give her an update on my stepfather, her husband. I admit I’ve walked away with her charge card in my wallet. I promise to be back in a few days.

She thanks me over and over and over, and I finish driving home.

And today, I’m headed back — first to the hospital, then to my mother’s house.

It’s a gradual re-connecting. It’s beginning to hold more tightly to what was once let go.

She sees it as a burden. I see it as a privilege.

Not everyone gets to place a warm flaxseed pillow behind their 82 year old mother’s neck. Not everyone gets to clip the fingernails of a stepfather who has been at times annoying, disappointing, and problematic but nevertheless present throughout my life.

I’ve been building muscle for this role my whole life, and I’m thankful to have the strength to show up now.

Honor your mother and [step]father… Exodus 20:12