Spoons

I first encountered the Spoon Theory of chronic illness in a book called Furiously Happy (my favorite book in the entire world). The idea is simple: every action you take in a day costs some number of spoons, and if you live with a chronic health condition, you start each day with fewer spoons than normal people and some actions may cost more spoons than they cost a normal person. When you run out of spoons, your day is over and you crash on the couch or go to bed.

The Spoon Theory describes so accurately what has become my daily struggle: somehow making a life out of very limited energy. I used to be an overactive person whose least favorite thing was napping. I regularly ran my husband ragged. But now, between my medications and my constant headache, I can “run out of spoons” and crash at nearly any time of day. A few days ago, I lasted until 11 am. The day after that was a bit better because I at least made it until the afternoon, but then I needed a nap, and I fell asleep at 8 pm that night. Sometimes caffeine and coloring (an activity I used to dislike because it isn’t active enough) can replenish my spoon supply, and other times I have to cancel all of the plans I had for the rest of the day and just lay on the couch. I don’t get any sleep while lying on the couch, because I usually have a bad headache, but I can’t manage to do anything else when I run out of spoons. If I’m lucky, my dog will come and sleep beside me, but those who know my dog know that he often runs out of spoons himself. So, he’s not always a comforting pooch.

Now you know the Spoon Theory, an important piece of chronic illness lingo. But when it comes to my spoons in particular, there are two other things I want you to know.

The first thing is that my spoons are coated in butter. Sometimes they are so darn slippery that I drop them all in a fantastically disruptive manner and all is lost. Take for example our small group Bible study last week. It’s hosted by some friends in the evening, which means after dark during this time of year. I had a great day that day, and was feeling downright normal…until we started driving to small group. Because it was dark, all of the cars on the road had their headlights on, which is a reasonable and safe thing to do. But to me, it was like an army of lightbulbs mounting an attack against my head, and the bright LED headlights led the charge. And just like that, I started getting a headache attack, and dropped all but a few of my spoons. By the time we arrived at our friends’ apartment, I couldn’t lift my head up to look at anyone because I was so aggravated by the ceiling lights. Afterward, we came home and my husband gave me lots of drugs, turned off all of the lights, and sent me to bed. I went from having a higher-than-average number of spoons to having almost zero, all in the course of ten minutes. Very, very slippery spoons.

The other important thing to know about my spoons is they don’t exist. Or that is what I want to think, because I deny my spoons all day, every day. I’d rather experience pain than acknowledge that my boundaries should be different than they were a few months ago. Maybe it’s because I’m new to the world of chronic pain, and I’ll eventually learn to acknowledge my spoons, and how few spoons I have. But does anyone really get used to having so few spoons? I don’t know. It’s hard to imagine I will. I know I should, though, because denying my spoons not only hurts me, but it also hurts the people close to me. My friends and family are very gracious, and they forgive me time and again when I plan poorly, or when I’m downright angry and I throw my spoons on the floor. But when I don’t have the energy to attend a baby shower that I helped to organize, or when I have to cancel dinner with friends for the third time because I refused to take a nap earlier in the day, I remember that I’m not the only person who suffers when I deny my spoons.

What I’m getting at is chronic illness sucks, and it sucks because of spoons. Or, more specifically, the lack of spoons. There isn’t a day that goes by without me wishing I could be who I once was, and have as many spoons as I once had. But I think I’m learning, very slowly, to not define myself by my spoons.

Conversation-Sized

“How are you?”

I feel bad for anyone who asks me this question recently. The best I can do is a give vague, single-word answer, such as “vertical,” “headachey,” or “tired.” On a bad day, I get angry and snap when asked this one simple question.

And I get it, I shouldn’t be so picky. The phrase “How are you” is a colloquialism that serves as a drop-in replacement for “Hello.” Most people (in America, at least) don’t expect to hear a long story in response to the question, “How are you?”. What they expect is for you to say “Fine” or “Good” or “Okay” and then everyone moves on with the conversation. But chronic health issues aren’t simple, and they can’t always be summarized into a conversation-friendly size. Sometimes all I have to offer is a long, venting story. Or maybe I was in the ER yesterday and the experience was so overwhelming that I don’t know where to begin. Then- just like that- I’m a conversation showstopper! And it’s not the case that every single soul who asks “How are you?” is ready for me to hijack what they thought was going to be a short and sweet conversation. So I get stuck, and angry that I can’t handle simple things anymore. And if I don’t have a one-word awkward answer coming to mind, I dodge the question like this:

Other Person: “Hi Natalie! How are you?”
Me: “Ohhhhh hi there! How are yoooouuuuu?”
Other Person: “I’m good! I spent the weekend doing blah blah blah…”
Me: *phew*

It’s the great “you” reversal!

But what the heck are you supposed to say if you want to know about my physical, emotional, or overall state of existence, and you don’t want me to get stuck? Here are some ideas for you…

  1. Give me yes/no questions. They are easy to answer even with only 3 hours of sleep, so these are my favorite. Is your headache very bad right now? Are you in a good mood? Have you been sleeping well? Is this week so far easier than last week?
  2. Ask about specific points in time. What happened last night after we last talked? Are you in a lot of pain right now?
  3. Infer how I’m doing from how I answer other questions. How many doctor appointments do you have this week? How long has it been since you managed to go on a walk? What are you allowed to eat?
  4. Don’t ask any questions! If you really just mean to say hello, then just say hello! Or give me a hug (or a 🤗, if over text). Or if you are a praying person, tell me you are praying for me. I won’t emotionally barf all over you unless invited…most of the time.

You may find these ideas helpful not only for me, but also for other people who are going through chronic illness or pain. This is you helping me to make my life-altering, overwhelming problems into something that is conversation-sized. Or we could call it bite-sized…or even fun-sized! Because not getting stuck in conversations is fun.

And I’m learning to answer questions better, too, as I adjust to my life as it is right now. I try to remind myself that my friends ask “How are you?” because they care about me, and I don’t have to pressure myself to tell them everything that comes to mind in order to graciously accept their love in a conversation. If someone asks me “How are you?” now and I don’t know how to answer, I pretend that they asked me one of the questions above and get myself unstuck that way. (If you just thought, “Wow Natalie, you are super insightful and introspective!”…thank you very much! But my ultra-intelligent husband is the person who keeps telling me to be more gracious, and I’ve finally got it through my rather thick skull. So all credit goes to him.)

And, on that note, this post is dedicated to my dear husband. I’m sorry for giving you the stink eye when you ask me how I’m doing. I can’t guarantee anything, but I will try to be less stinky eyed in the future!

Turtle burger, anyone?

I asked friends to provide me with fun socks instead of food, because there are loads of things I cannot eat right now. My sister, who shares my hatred of cats, went above and beyond the call of duty and found the *most* hideous and just downright strange socks on the planet. Good job, dear sister!

How to Stop My Headache

…according to the many well-meaning close friends, long-lost friends, family members, nurses, and complete strangers I’ve encountered since having a headache for two straight months.  

  • Ice pack
  • Hot pack
  • Put my arms & legs in a hot bath
  • Acupuncture
  • Acupressure
  • Chiropractor
  • Hypnosis
  • Massage
  • Hormone therapy
  • Pot edibles
  • Go on a vacation
  • Put cabbage on my head
  • Get a breast size reduction
  • Wear a snuggie
  • Wear my retainer
  • Sleep more
  • Tylenol
  • Excedrin
  • Ibuprofen
  • Drink filtered water
  • Drink lots of water
  • Drink coffee
  • Don’t drink coffee
  • Drink coconut water
  • Paleo diet
  • Ketogenic diet
  • Dairy free diet
  • Gluten free diet
  • Liquid diet
  • Go to John’s Hopkins
  • Go to Stanford
  • Go to the Mayo Clinic
  • Go to the Mayo Clinic
  • Go to the Mayo Clinic

Thank you to everyone for your astounding creativity!  And really, I appreciate the care and concern that comes along with each of your suggestions.  And I have tried a lot of them.

However, I’ve decided to charge $20 per headache cure suggestion from here on out.  I’m saving up for plane tickets to the Mayo Clinic. 😛

The Socks

What don’t they tell you at the hospital?  Basically everything. It’s because the experience of hospitalization was endlessly perplexing that this blog exists in the first place.  At least all of the confusion gave me something to write about. That’s my first consolation prize. There are lots of consolation prizes in hospitals, too.  It feels like receiving a certificate of participation in elementary school in the science fair or art contest or spelling bee- you don’t really get anything worth having, but here’s a piece of paper so you feel like something came of this immense disruption to your life.  Your dog will chew it up when you get home, but you can cherish it until then!

The most important thing they didn’t tell me about at the hospital and my most cherished consolation prize are one in the same.  It all starts at 2:30 in the morning on my first day as an inpatient. I was in the ER for a day and a half before getting admitted to a nearby hospital, and it was apparently very important that I get ambulanced over to my new digs IN THE MIDDLE OF THE NIGHT.  At least they gave me a cozy blanket from the blanket warmer for the ride, and the ambulance had a nice leather interior (consolation prizes #2 and #3, for those playing along at home). I should also note that the blanket warmer was apparently just 20 feet from my bed in the ER, but no one had offered me a warm blanket until I was on my way out of the ER.  It was a nice parting gift.  

I arrived to my very large, private hospital room at about 3 in the morning.  It was a corner room with a nice view of the city (consolation prize #4), and my husband dubbed it “the hospital penthouse.”  I was deliriously tired when I arrived, but there’s all sorts of things that simply must be done when you arrive at a hospital before you can sleep.  I talked with five people over the next hour: two nurses, one admission staff person, and two doctors.  The first nurse was very attentive and sympathetic to the fact that I had a migraine headache; he hid his computer monitor behind a curtain, turned off all of the lights, etc.  He also gave me a detailed orientation to my hospital room. My bed went up and down like this, my nurse call button was here, the free toothbrush and toothpaste were on this table, the hospital grippy socks were draped over the end of my bed, etc.  The socks were yellow and size XL, according to the XL letters printed on each side of each sock. I guess this also makes them reversible, which is a nice feature for socks. The nurse told me that I should wear the yellow grippy socks if I needed to walk to the bathroom, so that I wouldn’t trip and fall.  I was content with the socks I was wearing, but I didn’t tell him this since he seemed nice and I didn’t want to bash on the reversible footwear.  

After nice nurse left, I did get up to go to the bathroom.  When I came back out and walked over to my bed, there was nice nurse again, waiting for me.  I was not sure why he was back so soon. “You should wear your grippy socks! They keep you from falling!”  he said. And I was perplexed, because I at this point had successfully re-entered my bed without event. I hadn’t even stubbed my toe.  I told nice nurse that I was ok with the socks I had, but he seemed unconvinced. It left me wondering if he somehow knew that I had left my bed without touching the yellow grippy socks, and that’s why he came back into my room.  This was the first time, but not the last, that I wondered just how carefully I was being watched.  

A few days passed, and I started a medication that made me dizzy and nauseous.  I also got transferred to a smaller, less awesome room on a different floor (the headache floor, apparently) at a slightly more acceptable time of the night.  Because I was feeling a bit under the weather, I raised no complaint about my bed being rolled over to my next room, even if I could have walked over there myself.  Besides, bringing the bed with me meant bringing the yellow grippy socks, which continued to watch over me (or perhaps just watch me) from the foot of the bed.  The new room came with a new nurse, who was not only friendly but also very enthusiastic about my in-bed bathroom options.  

Our first conversation went like this:

Nurse: “Hello my dear!  Would you like a bedpan or a commode??”

Me: “Ummm, I don’t think I need either of them.  I can walk to the bathroom just fine.”

Nurse: “Well you should pick one just in case you can’t get up without falling!  I’ll leave the bed pan over here, and the commode next to your bed.”

Me: “Really, I plan to use the bathroom.”

Nurse: “Ok.  I’ll just leave the commode here by the bathroom door, in case you don’t want to go all the way to the bathroom toilet!  It’s easier this way, sweetie.”

Me: “Erm, ok.  Thanks.”

On the following day, I met a nurse who understood that I don’t need a commode, and we hit it off right away.  She took the commode out of my room, and we later got to talking about the only thing we found ourselves to have in common: hospitals.  She taught me about all sorts of things, including things about grippy socks, which apparently come in a variety of colors. Some of them are light blue, purple, etc. But the yellow grippy socks, those are always special.  No matter what hospital you are in, and no matter what other colors of grippy socks exist in that hospital, yellow grippy socks are used to flag a patient as a fall risk.  It’s like a secret hospital code.

And suddenly, everything made sense.  Catching heat for going to the bathroom, getting a bedpan shoved in my face…it was all because of those yellow grippy socks draped over the foot of my bed, which someone had erroneously assigned to me.  I should have had different grippy socks from the get go! But at least my first source of confusion was resolved, making room for many, many other perplexing hospital moments. And I got a good laugh out of it (consolation prize #5).  Also, I got to take the yellow grippy socks home, where they continue to watch me, making sure I don’t fall while going to the bathroom (consolation prize #6).