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.