Category: chronic illness

Low batt. p.3

~ Kristin ~ Leave a comment

I know, I know…I started this whole thing because I thought the “Spoon Theory” was not readily accessible to those outside the world of chronic illness.  I remarked that it was “a lot to read” and now I’m on my third day of posting about my alternative metaphor.  *sigh*

If you’re sick of it by now, just close this window and move on with your day, because I am going to go ahead and examine a feature that my iPhone recently started offering me.  I’ve mentioned that my phone is not holding a charge very well (nor am I for that matter), so I frequently get a prompt to switch to “low power mode”.  This function is quite handy.  I might be out tutoring in some nearby library, when I check my texts in between students, and I realize that my phone, which the last time I checked had 80% battery, is suddenly down to 37%.  A dialog box pops up on my screen offering me the option of switching to “low power mode”.  Knowing that I won’t be home for another couple of hours, I readily accept my phone’s offer.  “Why, yes, I will switch to lower power mode, dear iPhone, thank you for asking.”

In fact, I am kind of wondering why my smart phone isn’t always in “low power mode”.  I mean, isn’t it smart-enough by now that it is able to do everything I need it to do while remaining in “low power mode”?

That is, after all, what I have been learning to do.

I mean, my battery regularly plummets from 80% down to 37% with very little forewarning.  So, I have found ways to conserve energy — to utilize my “low power mode”.  For instance, when I am teaching, I may start standing in the front of the room, but it won’t be long before I sit right among my students and lead a discussion from “among the ranks”.  We could say it’s brilliant teaching strategy, or just call it what it is — “low power mode”.

My “low power mode” extends beyond the classroom.  I’ve found a variety of ways to conserve energy so that I have it for all the things that are important to me.

  • I cook in large quantities (when I cook, which isn’t often) so that we can freeze portions for days that I’m spending my energy on something else.
  • I fold laundry while sitting in front of the television, and I take breaks if my arms get tired.
  • I take smaller, more frequent shopping trips so that I don’t often have to put away a whole kitchen’s worth of groceries at one time.
  • I also clean in spurts — wipe down the bathroom before I jump in the shower, vacuum right before company comes, and change the sheets when my husband is around to help re-make the bed.
  • My Christmas shopping took me quite a while this past year because I purchased one or two items at a time, often online while sitting on my couch.

These strategies allow an extended battery life.  Because I run on “low power mode”  I can blog, teach, and join friends for dinner all in one day.  I still may need to pause mid-afternoon and plug in for an hour or two of re-charging, but ultimately I can participate in the things that are important to me.

I know this is the strategy that works best for me, and yet, from time to time, I keep all the apps open, the screen up to full brightness, and the wifi searching for a signal. Sometimes I do this out of forgetfulness; other times, I’m just willingly taking the risk. Either way, I end up shutting down in the middle of something, wishing that I’d slowed down or plugged in sooner.

And then I have another chance to learn my lesson — another chance to function at “lower power mode” from the start; my iPhone should go and do likewise.

2 Corinthians 12:9

 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

Low batt., pt. 2

~ Kristin ~ 2 Comments

What good is a metaphor if you don’t extend it?

Have you ever had a phone that just won’t hold a charge?  I have one right now and it’s like a symbol for my life.  It used to hold a charge for quite a while — even if I was using seventeen apps all at the same time!  I could quickly shift from email to Words with Friends to Facebook to texting to Twitter to Google without draining the battery.  Not now.  Recently my phone battery has been draining quite quickly.  I’m constantly closing apps, dimming my brightness, turning off the wifi, and trying to find a charger.

And that, in a nutshell, is my life, ladies and gentlemen. Not too long ago, my own internal battery was charged almost all the time to 90-100%  I could jump out of bed at 5:25 am, shower, dress, put dinner in the crock pot, start a load of laundry, drop the kids at school, teach all day, attend a sporting event or run 4-5 miles, then go home, serve dinner, clean up, finish laundry, grade papers, and maybe even complete a few other tasks around the house.  Sure, by Friday, my battery was down to about 30%, but an early bedtime, a cup of coffee, and I was out the door running on Saturday morning.  Right back at it.

Now, on a really good day, I start at 85%.  Three to five activities will take me right back to zero, so I’ve got to choose wisely.  I can either go to the gym or go grocery shopping — not both.  I can teach one class and meet with three students on Wednesdays, but I better be ready to sleep in on Thursday.  If I want to have enough energy to go out to dinner at night, I had better sit on the couch recharging for an hour or two in the afternoon.

Depending on how low my battery is running, I may have to shut down some apps in order to have enough energy for the task at hand.  For instance, if I have to drive a long distance, I can’t necessarily also have a discussion at the same time.  If I have been grading papers and you stop to say hi to me in the library, I might not be able to access your name right away.  Yesterday, I started some eggs boiling, but started blogging before setting a timer.  My ‘egg boiling’ app totally shut off so that I could use my blogging app.  When I heard whistling coming from the kitchen, it never dawned on me that I might have some control over it.  I had totally shut down that part of my brain. It took eggs exploding all over my kitchen to remind me that I had started the process in the first place.

It’s Wednesday.  Three days after my return from the whirlwind trip that drained my whole battery plus a supplementary external battery.  I spent one whole day plugged into the wall.  Another day at half-batt, with frequent trips to the charging station.  For two days now I have been functioning at about 70%.  I’m returning to my responsibilities and trying not to do too much.  It’ll be a quick trip back to 0% if I’m not careful.

It’s been three and a half years with this less than optimal battery.  I’m trying to learn how to function at this new capacity, but soldiers aren’t used to limits.  I keep trying to report in for new orders, but the orders remain the same.

“Be still. Rest. I’ve got you in the palm of my hand.”

Matthew 11:28-30

“Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”

Low batt.

~ Kristin ~ 2 Comments

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 convey tangibly 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 loan some out 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 make plans always “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 home. 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 I at first 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.

Isaiah 40:29

He gives strength to the weary and increases the power of the weak.

Invisibly Ill, and being still, a re-visit

~ Kristin ~ 1 Comment
Click above if you’d like to hear my creaky morning voice read this post; otherwise, read on!

On Monday, I wrote about autoimmunity (full post here) and how I function daily in January 2020. Many of you wrote to thank me for sharing my journey. In light of that, I thought it might be useful for this week’s re-visit to be my very first post on autoimmune disease from way back in July 2014 — my second blog post ever. A lot has changed since then — my diagnosis, my symptoms, and my reality. Everyone’s struggle with illness is different, and many of those struggles we cannot see. Many more than I are invisibly ill.

In my first entry on this blog, I mentioned that my doctors had advised me to take some time off to rest. Some of you who know me might be thinking, “Well, shoot, you look fine to me.”  Let’s talk about that for a moment. 

People who have autoimmune diseases have a unique experience: although they may look fine, they are sometimes debilitatingly ill. In addition to feeling horrible, they have the added burden of people questioning the validity of their illness, or worse, accusing them of hypochondria. I have been extremely blessed to have very supportive people in my life, but many do not have this experience. [There are other invisible illnesses. However, since this blog is my experience, I will write about how my disease, psoriatic arthritis, affects me. I am learning that everyone’s experience is unique.]

If you didn’t know me prior to 2012, you might see me on the street and think I am an average middle-aged woman, and in most ways I am. In fact, even if you did know me before 2012, you might not notice that much has changed — I’ve gotten a little older, a little grayer, a little rounder, but overall, I look the same. However, my life has changed dramatically.  

Some things you may notice.  

  • I wear glasses more than not now. When I was 15 I replaced my Coke-bottle bottom glasses with contacts, and I never went back. However, many autoimmune diseases, including mine, come with chronic dry eyes which make contact lens wearing difficult. Additionally, I am on immunosuppressant drugs. These drugs, along with a round of steroids, created a perfect environment for ocular herpes. Ocular herpes can recur, especially in people who wear contacts. So, glasses.  
  • I walk more slowly, and sometimes with an altered gait. I am especially slow when I first stand up. Stairs are a challenge. I used to run 5-6 days a week. In fact, I completed two half-marathons after the age of 40, the second one in under two hours! Chronic pain in my hips and back along with chronic fatigue have halted my running career. I now aim to walk 2-3 miles a day, 4 or more days a week. I can do this if I am careful about the other things that fill my day. 
  • I look wiped out, like I haven’t slept or like I’ve been sick. I am wiped out. My body is constantly fighting inflammation. I sometimes crawl into bed before 6 pm. This can add to my joint pain, but I sometimes physically don’t have the steam to do much more than lie down. 

What you probably won’t notice. 

  • I sometimes can’t remember your name, or the four-digit code for our house alarm that we’ve had for six years, or my social security number that I memorized in high school. Chronic fatigue causes the brain to forget things. 
  • Joints throughout my body — fingers, hands, feet, hips, knees, elbows, shoulders — not only hurt, but also seem to be radiating heat. It feels like I am constantly bathing in IcyHot. 
  • I sometimes just feel like crying — not necessarily from pain, or sadness, or fatigue, but maybe from all of those.  
  • I do have psoriasis, mostly in places you can’t see.  

All of this is exacerbated by stress, weather, environment, and fatigue. Things that help include an altered diet (gluten- and dairy-free, lots of veggies, fruit, nuts, seeds, etc.),  Pilates, walking, medication, supplements, acupuncture, massage, and rest, plenty of rest.

It is 1:45 a.m., technically morning, so I went ahead and read my Bible reading for today. Matthew 8 recounts the stories of Jesus healing a man with leprosy, the Centurion’s servant, and many others. I have thought about this extensively. Jesus healed many. Will he heal me? Should I, like many Christians suggest, pray for that healing and ‘claim it’? The prophet Isaiah says, “Surely he took up our infirmities and bore our diseases.”  

You know, I am not sure I should pray for that. You might think I am crazy. You might look at my bulleted lists above and say, “why wouldn’t you want to be healed of that?”  

Not all illnesses are physical. I am pretty convinced that my emotional/spiritual health is improving as my physical health has become limiting. But wouldn’t Jesus want to restore all of me? He will one day, for sure, but perhaps he is using this illness, in this season, to cause me to be still so that I can know he is God in a way that I haven’t known before. 

Some blessings I have noticed in my illness:

  • I have an amazing husband who has never once doubted my symptoms, even when I have. 
  • I have friends, family, and coworkers who are supportive and who have helped and encouraged me.
  • Slowing down and being still makes me more accessible to the people in my life.  I hear more of what they have to say, even if I do sometimes forget it!
  • I am learning to be more sensitive to the needs of others and not to make assumptions. I was feeling sorry for myself one day at a school function when a parent reached out to me and asked how I was doing. Only after I had whined and complained did she share that she had terminal cancer. I never would have guessed — she was always engaging and positive!

So, for now, I am content, even in this circumstance.  I know that “in all things God works for the good of those who love Him” (Romans 8:28). I do love Him, so I am going to continue to be still.