Bones like Concrete

 

I have friends who experience chronic fatigue. 

Before I truly experienced it, I thought I knew what that meant. I have a pretty good imagination. And I knew what it is to feel bone tired. Soul tired. And all the tired's in between. 

But fatigue isn't tired. Fatigue isn't exhausted. Fatigue isn't weary. 

Fatigue is feeling like you weigh 2,000lbs and that your brain is made of tapioca. Fatigue is feeling like you are constantly having to move through wet cement. Like lifting your incredibly heavy legs to go up the stairs is impossible, and gravity has an extra powerful pull on you. Like you can't get enough air. Like each of your thoughts has the lead blanket from the dentists office draped over them as they try to move through your head. 

It's not something you can will your way out of. That's the thing that has been the trippiest for me. That feeling that my trusty will has abandoned me. That, and there is no reserve to draw from. I always had a secret well of oomph from which to rally if needed. But with fatigue, the bones of my limbs are made of heavy cement and aren't mine to command, anyway.

And you never know the exact moment when your energy will run completely out. If you're lucky, you're at home and not in the middle of a grocery run which you then have to abandon and call for reinforcements just to get home. (Don't judge abandoned carts, people. You don't know when a "good day" suddenly dropped from errand to empty). 

It's a consuming, depleted feeling. 

And it gains ground with alarming traction. 

Now I know. 

Last November things started to feel...off. 

I got tired. Really tired. There were many things that could easily explain my tired away. The dark days of Utah Winters stretch long. It was the beginning of the busiest time of the year and I had more than usual on my plate. I was about to turn 40, I couldn't treat my body like it was as resilient as it was in my 20's...So many reasons for me to feel so tired. 

But this tired felt different. 

At first, it was noticeable in the small things. Falling asleep mid-story as I sat and read with Hattie. My inability to clean more than one level of my home before having to rest—I mean legit, crash on the couch and sleep for an hour HAVING to rest—and not being able to keep up with my ONE fitness class every week. Driving home after teaching U-JAM became daunting. I used to love the silence of my thoughts and the pleasant sensation of a body that worked hard while dancing it out. But now I had to blast my tunes just to keep my mind alert for the 30 minute drive, and my body wasn't pleasantly tired. It was weary. Hollow. Screaming to shut down. And I would pay for my class the next day. Hard. 

"They were right," I'd say to Bill as I threw together a lackluster dinner or—more often these days—set out the cold cereal or the take-out he went and fetched for us because I was just...too...tired. 

"Who was right?" He'd ask. "About what?"

"All those people who tell you that getting older is hard and not worth it and should be avoided." 

Ha ha, getting older, bodies not being able to keep up, ha ha! But behind all that I knew that this felt different. I felt that tickle in my brain that I should pay attention to this. Watch this. But I was so busy, and...you know...*tired*. 

I'd look at the laundry pile I couldn't keep up with. The healthy balanced meals I created in my head that never seemed to make it to table anymore. The to-do list that I swept under the piles of all of the things I would handle when I just stopped being so tired. 

Around the same time, I noticed a lump in my neck. Garden-pea sized and shaped. Doc said we'd do some blood tests to rule out any other culprits before we did anything as drastic as a biopsy. But a lump with no other symptoms was peculiar enough to get a home phone call when the results came back. 

"It's not cancer," he said. We had all (Doc, Bill and myself) had been a wee bit concerned about that possibility. Hence leading with this reassurance. "You have elevated EBV levels. EBV is the virus that causes Mono. Once you have Mono, the virus stays in your system forever. Usually, your body's immune system keeps it in check, but in rare cases it can cause a relapse."

"So I basically have Mono? Is it contagious?" I remembered my first bout with Mono when I was 19. It was right before Jamie's wedding, so I was quarantined to the basement so I wouldn't infect anyone in the wedding party and I basically missed my chance to be the best Maid of Honor, ever. Recovery was long and hard and BORING (Though I did read the entire chronicles of Narnia series again, which gave me very adventurous mono dreams). I immediately thought of my kids and desperately did not want to inflict them with this disaster.

"Not really," he said. "But I wouldn't share drinks." 

OK, Mono. What was the plan, then, doc? 

Nothing, really. It's a virus. Lots of rest and liquids. Take it easy. Watch your stress levels. Stress causes relapse. Let it resolve with time and TLC. 

I simplified as much as I could. I officially ended my Health Coaching practice. I took a hiatus from Life Coaching. I quit my U-JAM class and my PA work. Each thing hurt to cut away - I was cutting off pieces of me I knew deep down I loved. But I couldn't keep up. I wasn't doing a good job with any of it, and that was causing me great stress. And I didn't want the EBV situation to become chronic. 

I pared down to my two most meaningful and worthwhile responsibilities: Being a wife and mother, and being a relief society president. 

So I rested and hoped that the heavy, bone weary feeling would ease up and eventually stop. The EBV thing was clearly the cause, right?

But it didn't stop. 

It got worse. 

Eventually I decided there had to be something going on beyond the EBV. It had been months, and I was still out of sorts. This couldn't be caused only by some dumb old virus. 

Bill and I would talk about it...this feeling I had of being off. "I think I'm depressed." I realized. "I remember what this feels like from before. I'm tired all the time, I am easily irritated, and I don't want to do any of the things that I usually enjoy. I just want to be in bed. Like...if you waved a magic wand that took care of all my responsibilities for a whole day and I could do ANYTHING I wanted, spare no expense, I would spend the whole day right here, SLEEPING." 

Depression. Ticked the boxes. Made a lot of sense. I hated it (hadn't I moved past this?) but I wanted it to stop. So we started the hunt for a therapist. 

My least favorite things to hunt for now are: A therapist, a job, my kid's missing shoe when we're supposed to be walking out the door. 

In that order.

Finding a therapist you resonate with is a bit like dating, but if you are trying to make that connection when you are not feeling yourself and you have the pressure of knowing your whole family suffers if the date doesn't go well and you're going to have to pay for the lobster dinner either way. 

One therapist told me I didn't have depression, I had anxiety. That didn't feel right.

One told me I would set a goal for myself and he would help me fill in the steps to get there. Easy peasy. But he told me the exact same thing during our second session, all grand general sweeping statements and nothing concrete to help me with my current situation. Every therapist I tried seemed eager to teach me how the human brain works, but had nothing to offer me for the problem of why MY particular brain seemed to be misfiring. 

Add to that the fact that there was nothing obvious to point to in my case and the fact that I had spent the last 5 years studying the brain. So I wasn't exactly the easy, fresh-eyed student. 

I realized that five years ago I had hit the therapist jackpot with Janey. 

Ah, Janey. 

Wistful sigh. 

We had tried for Janey - but she had left the practice I had found her through five years ago and had started her own practice! Which makes perfect sense - the woman is brilliant. But alas - she was SO brilliant she was at capacity and was not taking new clients. 

I looked her up on Facebook, feeling nostalgic. I was surprised and pleased when she accepted my friend request. It had been five years! Did she really remember me? 

"Of course I remember you, Stepper!" she responded to my shy private message. When I congratulated her on and lamented her full client load and asked for a recommendation for a therapist that might have a similar style to hers, she said, "I am never too busy for you. Call my office and tell them we talked." 

Hey-o! Best backstage pass ever! I felt something creep in around the edges. Ah, Hope! Where have you been, you wiley rascal? You didn't even tell me you were leaving! 

Janey and I fell into step like the past 5 years never happened. I was so excited to be in her new, beautiful building and sitting across from her that I had a hard time expressing how bad things had been with me. The vibe at her practice was so comfortable and chill, I felt a heaviness lift from me just being there. 

We started the mental unpacking. She helped me sort through the things that mattered and were telling and the things that didn't. She helped me start to lay track. She spoke wisdom and tough love. She gave me homework. She fixed my bracelet. 

Then CoVid happened. 

Then the lumps in my neck came back. 

I admit I had a royal pity party for myself when I discovered those blasted lumps. After everything I had given up and all my efforts to "take it easy," how DARE they?! This wasn't the deal. Those lumps meant I wasn't making progress. They meant that the EBV in my blood just red-flagged itself as chronic, and I hadn't even fully recovered from the first recurrence. I was still just so...damn...TIRED. 

I pouted and cried and obsessively read articles and books to try to gain some traction with this thing. I circled and circled and spun and spun, and my poor and amazing Bill held me anchored until one day, while driving down I-15 together and telling him all about the lastest article I read I noticed for what must have been the hundredth time a billboard. This time, it sank in. Get a second opinion. 

So I called my sister's doctor. 

Dr. Coy was the doctor I always wanted but didn't think existed anymore. While I spoke with him (over video chat - because CoVid) I felt like he had all the time in the world for me. We discussed my symptoms in depth. He brought things into the picture that I never would have thought were related. He took the time to understand all angles and explained his process to me before making a recommendation. He ordered a VERY thorough blood panel, and we made a date to discuss the results. 

And that is how I became the poster child for getting a second opinion. 

It was true, I had a smoldering case of EBV. But I also had alarmingly low Ferritin levels. Ferritin is the protein in the blood that stores iron. My body was producing red blood cells...they just weren't storing any iron. Doc Coy told me that iron levels are slow to deplete, and slow to grow. He said that based on my levels, I've likely had a hole in my iron bucket for YEARS. Most likely my whole adult life. 

My mind flashed to all the times doctors over the years have ordered blood tests to check for anemia...but they came back negative. They were checking the number of blood cells, but not INSIDE the blood cells. 

"Normal Ferritin levels are technically 10 to 200," Coy said. "but really, anything below 40 is too low. You are at 11." 

So not only did I have a persistent case of pseudo-Mono, I also had broken blood. 

My low Ferritin levels were potentially dangerous. And the only reason I knew my levels were SO LOW was because of a chronic case of EBV for which I got a second opinion. 

Both conditions cause intense fatigue. 

But low Ferritin levels can also be the culprit for depression, anxiety, moodiness, headaches, inability to concentrate, weight gain (UNFAIR!), restless leg syndrome, and - as I would soon experience - dizziness and breathlessness. 

So many lights went on in my head. It felt like the end of a great journey. I was so relieved! An answer to so many questions right there in my blood work. 

But I was deceived. It wasn't the end. It was just the beginning. 

I didn't know what true fatigue was.

Getting such aggressive blood work done must have kicked my levels below acceptable, and for the next three days after the blood draw, I was sick to my stomach. I was constantly dizzy, even while lying flat on my back. I would have to pause on the stairs to breathe deeply enough for my heart to stop pounding. 

I checked with Doc Coy about these new, intense symptoms. He told us to go straight to the ER if they got bad enough. 

But...see...there's this global pandemic happening right now. And I am, as it turns out, immunocompromised. I felt so terribly that I really thought another big thing for my body to have to try to fight its way through would not be wise.

So Bill cooked me steaks and I dutifully took my iron supplements even though they stabbed me right in the gut and made me feel so nauseated that food was my mortal enemy. But I also had to feed my cells all the sugar, gluten and dairy free organic macros and micros to rebuild my immune system enough to fight off the EBV. 

And amidst all this internal physical chaos, I had this strange and RELENTLESS sense of guilt.

I guess I felt guilty for suddenly not being as much as I was. I made it mean that I was no longer enough.

I found myself apologizing for EVERYTHING. To an obnoxious degree. Did I forget to put the pitcher of juice on the table? I'm so sorry! Did I want to ask about something for the family schedule? So sorry to bother! Did I enter the room? Oh, man, sorry for existing and taking up space with my mass! I gained ground with my research into all that my body was dealing with. But I lost ground with my personal confidence. 

Which pissed me off. 

I was Stepper the Mighty, not Stepper the Wimpy! 

I would catch myself beating myself up, and decide to give myself grace. I would connect with the kids when I could, and gave myself permission to retreat when I couldn't. I would hate that I wasn't "fun, Summer mom!" and then I would remind myself that I LOVED having free time with my siblings during our summers as children! My kids kept insisting they were having fun! Bill kept insisting I wasn't a burden. And I kept insisting that I try to believe it. 

And...thankfully, I was already in conversation with Janey AS all of this was happening. 

Talk about tender mercies. 

And oh, how the tender mercies have been revealing themselves! 

One Sunday (they all blur together these days), Bill gave me a beautiful blessing. During which I was reminded that there is a plan for me. A plan of greatness that is my birthright, not a hand-me-down situation now that I wasn't "living up to my potential" (you hush up, brain!). 

And...in this same blessing I was told that this road would be a long one for me. And that I would need to rely on the help of my family and friends. 

And Janey told me that I needed to tell people. 

So...here I am. Admitting that I am the neediest I've ever been. 

Admitting that I spend my days often dizzy and depleted. Sometimes in denial. Occasionally being amazingly productive. But always watchful for the next crash. 

And that I'm learning to be ok with it. 

And that I have a plan to get my life back. 

But that I'm willing to let it take the time it will take. 

Without beating myself up. 

And that I might need your help. Possibly your forgiveness. But definitely your understanding. 

When Grandma Came to Visit in a Dream

The night before last, Grandma Becky came for a visit in my dream.

We were putting on a play because Wyatt is missing his chance to perform the part he wanted (the part he earned, the part he worked so hard for) in the sixth grade play because...quarantine. 

In the dream, it felt big. Graduation level big. Everyone came. 

And here in my dreamscape, I of course held nothing back. We had built an outdoor stage, complete with smooth wooden flooring (and a trap hatch) lighting, pulleys and levers for whatever special effects were called for, long and velvety curtain legs. 

I had that excited buzz in my head that I get when we're about to create an experience. We were nearly ready to start, so I came out from back stage to tell Wyatt and the other actors to get in their places and to survey the audience. Almost time! 

Then I saw her. Grandma Becky sitting in one of the folding chairs near the back, watching with a pleasant expression on her face. And I knew in the way you know in dreams that she was here as her spirit self. Also - I knew she had to be visiting in the spirit because if this were a time travel dream, she would definitely be sitting on the front row. But this time, a bit of discretion was in order. 

My heart gave a little leap and I quickly made my way around the crowd, taking the long way around and up from the back. If she wanted discretion, I would comply! I didn't want to devastate any sort of rule or law that allowed her to be here! I slid into the chair next to hers.

"Grandma!" I exclaimed. "You came!"

She gave me a look and in her snarky way said, "Oh, honestly Stephanie! Of course I came!" She looked back toward the stage with a half-smile. "I have never missed any of my grandkids' plays." 

I thought of all the performances her grandkids had done since her passing —the concerts, the plays, the recitals—and the thought both thrilled me and felt completely correct. Of course she would arrange to be there. She never missed a single performance of any kind during life. Why should a little thing like death interrupt such a loving perfect record? 

I wanted to ask her so many things. The enormity of all that I wanted to ask her! But instead, I did what felt like the most important thing: I laid my head on her shoulder the way I used to when I was small and she would sit with me on her brown and gold floral couch and read me stories for hours. She always, always had time for me. 

Finally, I did ask, "How did you come?" 

She smiled proudly and held up a ticket, white with blue writing. "I have my ticket!" she said. 

With sudden urgency, I started into a half-standing position, scanning the crowd. "Let me find my mom," I said. "She definitely needs to see you." 

Grandma put a calm, stopping hand on my knee. "Your mother sees me when and how she needs to." 

And then, without words, she conveyed to me the message: Now Shh! Let me enjoy this! You better get up there or you won't start on time!

I woke up from her visit, then. But I woke with that familiar feeling of having spent the day with Grandma. With that feeling that I wanted to be a bit tougher, my priorities a bit straighter, and my loyalties a bit fiercer.

I can't remember what she wore, now - only that there was purple. And that she was still very much the grandmother I knew, but younger. Not necessarily in years...those didn't seem to matter. She was younger in energy. And that her lipstick was expertly applied. 

I taught Daphne how to make Grandma Becky's scratch brownies last night in tribute. My own little thank-you for the visit, and for the many layered lessons in our too-brief conversation. 

Look Out, it's OCTOBER STEPPER!

October is my Spring.

I go kinda dormant in the Summer months. And then in October, I experience THE AWAKENING.

Someone protect the children; it's OCTOBER STEPPER! I go a little crazy and want to do ALL THE THINGS.

I want to be outside all the time.

I randomly burst into a run because I gotta burn off some of this October Sauce and also: WHY NOT?!

I start the plotting. You know. Because energy and that creative burn and HALLOWEEN. 

I start a book. A painting. A BLOG!

I start throwing everything away. STUFF IS DUMB when it's October! The kids watch me with suspicion wide in their eyes, making sure I'm not headed for their treasures. They start to check garbage cans. I strike while they're at school, because, remember? PLOTTING.

I remember it's actually FUN to get up in the morning.

I wear. the. fuzzy. BOOTS.

I feel like a tree in the spring, shaking off the dust of a sleepy winter and then shuddering as I examine the newness of my growth. Only instead of blossom buds and sweet fruits, I seem to randomly produce ghost pumpkins and an unreasonable amount of sweaters.

And I feel so FREE, so ALIVE and so ARRIVED that when I hear complaints of cold and gloom and where'd-the-precious-darling-sun-go during these tender October beginnings, I get a little...

Defensive.

(Defensive isn't the word my fingers went for, but this is a FAMILY FRIENDLY blog.)

Bill and I have an inside joke that there was a mix-up somewhere and I am actually not a human girl at all. Human girls typically enjoy warm summer evenings and days spent poolside or at the beach. Turning pretty freckled faces up to the sun and all that. But I'm not a human girl, but a water nymph; preferring the cool and the rain to cloudless blue skies and uninterrupted sunshine.

Clear blue days are BORING.

Bring on the drama of the CLOUDS! That overcast haze that makes everything smell, feel, taste ALIVE.

(The sun and I have an understanding. It's fine.)

And. You guys. HOODIES.

Amiright?

But....I also go completely nuts with house projects. Side gig ideas. Creative outlets. I have more ideas than I can keep up with, and I kind of make my people a little bit crazy with all of my crazy.

Go figure.

So I'm TRYING to reign it in this year. Really.

I mean, we are in the middle of a major back yard overhaul - but that's not my fault. That one started in the dreaded summer months. It's just that now I'm actually interested in getting out there in the dirt!

We are DIY-ing one of those ladder library thingies...re-doing the girls' room (I get to build furniture tonight!! IKEA furniture!!! Puzzle level: MASTER), overhauling the kitchen because I listened to a blog that told me I need a STATION and then we watched Salt. Fat. Acid. Heat. and I now want to be a seriously amazing intuitive cook like Samin.

And I may just secured myself a sign-off from the hubs for a climbing wall for Henry in the back yard. Which might also require building some kind of wall. I mean, probably.

BUT - I'm NOT teaching myself how to sew, or making a pallet swing for the back yard, or accepting every invitation to join interest groups that look interesting, or committing to the PTA because...come on. I'm REINING IT IN.

(OK - I'm totally making a pallet swing for the back yard.)

(I'll just shove those things a little further down the list).

If you see a mushroom cloud of DIY dust form over my house...please send pizza for my kids, because I guarantee I forgot all about dinner.

So I am a Stone

...rough and grainy still...

I have this image in my brain — so clear it could be a memory — of a scene that I drift to when I start to feel heavy in the head. I am looking down at my feet, pressing with pleasure onto the smooth, cool surface of a river stone. The stone is dark and gray and green and earthy, and my feet are bright and white in contrast. The stone stands in moving water. A brook or a river, depending on my subconscious needs of the hour. I can hear it, regardless. Always whispering or murmuring or growling softly nearby. The stone's surface is wet, but not slippery.

I feel grounded, here.

Calm and centered but also somehow expansive.

Connected.

...but when I close my eyes and feel you rushing by...

I suppose this is my happy place. Though it feels too sacred for names. It's just...my place. I like to think of it as a gift my higher self gave to me years ago - before I knew anything about "time travel" or any other selves or any of the fantastic things the human brain can do. And anyway, I often forget to pay a visit to my place when I'm a tumble of its opposite. Frantic. Distracted.

Disconnected.

...I know that time brings change, and change takes time...

Sometimes I'm a river stone, tumbling in the violence of the water, trusting that I am becoming. (I will be the person to create 20k for Life Coach training; my golden egg. It's the most money I've ever made in one lump some, by myself, in my life. It doesn't have to make sense—and doesn't—to friends and family; I am excited to become the kind of person who can do that. The kind of person who did do that. I want to meet THAT Stepper.)

Sometimes, I'm canyon limestone. The wind is whipping away at me, and I don't know if I'm going to become a sturdy but delicate arch, or if there is just not enough of me left, and i will crumble away to insignificant rubble. (So many women in my neighborhood feel lost and lonely. So many need a friend - but what that means is so subjective. I love them all so much, but my love doesn't seem to reach them. Not in any way that matters. I try not to make that mean that I am not enough. I was asked to lead. I was asked to be the representative of Christ. I am so flawed, so...Stepper about it all. It's not the ones who have made me the enemy—that's never about me, I know. Thank heavens. It's the ones who slip through the cracks. I'm so so afraid of those cracks!)

Sometimes I am a sandcastle against a Tsunami. (The days I long to stay in bed. The mornings I am tempted to drown my phone and take to the hills just for a stretch of peace. The housework—and the regular work—that suddenly become monumental and inhumane. When did switching the laundry over deplete me so completely? When did I lose interest in my book? where did I leave that desire to paint? Where did I put my passion? It must be around here somewhere...under one of these piles of later...later...later...)

...sometimes raging wild; sometimes swollen high; but never have I known this river dry...

But always, at the end of it—whatever form IT takes each time—I am okay.

I'm okay.

I like that I can trust that.

Because I know Stepper; I know who that is. Deeper down sometimes than I can immediately access...but I know that girl. The hot and cold of her. The shape of her moods and her quirky sense of humor and her delight in sudden bursts of beauty.

She gets really self conscious about how her brain works. It finds beauty and meaning everywhere, but is also hyper analytical and so logical that often she misses nuance. She is anxious to never miss the subtle joke, but is fairly sure that 70% of the time she does; and her people sigh and give up because it's easier than having to explain.

She loves teaching, but conversationally. She hates presenting - but only because she loves it so much until afterward when she watches the replay in her mind and realizes she came off insufferably didactic.

She loves words. Oh how she loves words. The power of them. The art of them. The way some of them feel in her mouth. But...oh how she hates when the drive-through kid says "there's that". Wasted words. And she punishes herself for being such a good noticer of things she should be able to let go. And everyone assumes she's good at word games just because she loves them, but she never wins.

And she always has so much to say. So many astronomical feelings and ideas erupting out of her all the time—even when she's dreaming—but she  never has anything to contribute to a conversation.

So...odd, yes. Difficult, yes. But also okay. Always okay.

...and when the sunset comes my prayer would be just one: that you might pick me up and notice that I am just a little smoother in your hand...

I need the smoothing polish, I've realized. The closer I look, the rougher I get. I'm caverns and glaciers and...when did those wrinkles happen? Oh, please...PLEASE let me carve smile lines in my face, not worry lines.

Almost 40, and I still don't know exactly what kind of stone I am.

I want the balance. I need the outlet.

I want the words back.

Quotes borrowed from the song "Rolling River God" by Mindy Gledhill. 

THE STORY CONTINUES...

...but...you know...backwards.

Keep reading about McCrery Clan adventures at my bloggy beginnings: STEPPER WAS HERE.