Lost & Found

But First.. Lost

I don’t remember what I did for Fathers Day 2020. Or Memorial Day or Cinco De Mayo or my brothers birthday. Much of the first half of 2020 feels like one long blur. Like a panoramic photo taken with the camera in motion. This is mostly because I was living what felt like the same day, every day, over and over. Each morning and the fallout that followed felt like an impossibly perfect cutout of the day before.

I can remember specifically the day before Mother’s Day, because my mom, who insists every year that we buy her absolutely nothing (a request that, every year, we reliably ignore) actually asked for a present this time: that I take a shower. Not because you stink, she assured me, I just know how badly you want one.

We both had to laugh at the request. Despite it being a painstakingly long shower that required way more effort than it warranted, and left me out of breath, I delivered. I owed the poor woman at least that much.

For all I cannot remember, the discouraged, scary and exhaustive moments stick out like thorns in my mind. I remember just how much I wasn’t doing–which was a lot. I practically memorized the lines on the ceiling. I remember how much help I required and how much I hated asking for it. I remember the enormity of things to figure out on my plate, and how impossible it felt to get any of it done.

Every morning, I remember dizzily staggering to the door to let Monty out, just so I could turn around and clumsily zig-zag back to bed and collapse like lead onto my bed. That was about as much as I could muster that first hour of waking. Summoning the strength for the crawl I’d have to make up the stairs for a coveted cup of coffee required a mental and physical preparation that you’d give yourself before running a marathon.  Every morning was a marathon.

Once upstairs, I’d sit with my coffee, look at a sudoku puzzle in the paper and haphazardly scribble in a few numbers. Then the post morning crash would settle in like a fog. It seemed like I woke up just to begin a slow decline back to where I started.

Monty would loyally follow me back down the stairs. Back to bed, back to life from inside a window. He’d lay beside me and sleep, but was on all fours as soon as I started to gently kick the sheets off. I felt terrible for the life he wasn’t living, on account of me. I felt terrible in general, for all the things I wasn’t doing. But mostly, in a word, I was simply<em>lost. I felt as though I were floating in the middle of the ocean without a speck of land or answers in any direction. I can’t remember ever feeling so lost.

An exacerbated number of symptoms seemed to swallow me whole, and a new set emerged that we couldn’t completely explain: A strange and unprecedented struggle to take a full breath. To breathe without having to think about breathing. An ulcer that would cause extremely painful episodes— where I’d lay on my left side, eat a handful of Tums and say the Hail Mary until it’d finally subside. I’ve never eaten so many Tums in my life.

I felt so far away from actually living. I rarely knew what day it was, or cared. Tuesday, Saturday, Memorial Day, it all felt like the same stretch of time. It didn’t matter. Time lost its urgency and importance. Sometimes it felt like it hardly passed at all.

Other times I felt I could watch it fly right past me. As humans, of course, we can witness the literal time pass. I’d watch neighbors go for walks and mow their lawns, usually in awe. I watched family bolt up or down the stairs to retrieve something, without a second thought. My aunt Amy’s energy seemed supernatural. Holidays and birthdays would come and go, but I remained stagnant. I did my best to keep up with friends back home, but talking on the phone really exhausted me. There were signs and sounds of life all around me, but so little of it left inside. It’s hard to believe that was just one year ago.

On top of my excessively depleted state, we had moved to a new place–meaning I would require new, local doctors to continue treating me. It meant starting over, and having no idea where to begin when the doctor inevitably asked “So, what brings you here today?” That *task* alone was one of the most psychologically exhaustive and traumatic events in recent memory.

Every part of it was problematic, of course, because ME/CFS is a <em>multi-system </em>disease, meaning it requires a multitude of doctors to address the various issues it causes. It felt like failure, again and again, being rejected by doctors who wouldn’t even agree to see me. Can I blame them? Maybe not. One look at my health records and it’s understandable why the average doctor would scare off easy.

A few of them, including an overly-confident son-of-a-nutcracker, yelled at me. He said the doctors who had put me on pain medicine had actually put me in a Prison. I remember him pointing his finger accusingly straight at me, chastising me as though I were a child who’d done something terribly wrong. I walked to my car shamefully and lost it in the drivers seat for a good twenty minutes after that appointment. I was never going to convince these people to continue to regimen I was on. If that were the case, I was about to begin suffering a lot more than I already was. I felt so afraid of how much worse things could get without the appropriate care. The ulcer flared in response. A wind pushed me out further into the sea. Directionless.

The night after that appointment, I laid awake and replayed his words in my head. It struck me that the guy had it completely backwards. The pain was the prison. The pain caused immense suffering, left me at times incapacitated and unable to do simple things. It kept me indoors. The medicine is what freed me from some of that extremely restrictive pain. It allowed me some functionality and a semblance of livelihood.Some of my energy could restore itself once my body (and mind) weren’t consumed with fighting pain 24 hours a day. How could a pain doctor have such a concept so blatantly reversed?

The worst part was knowing that it didn’t matter. Whether I was right or the doctor was wrong, the battle wasn’t one I could win. He had the power, and my disagreeing with his professional opinion wouldn’t change the outcome. That’s a lot on a patients shoulders. If you’re unable to convince people of the help you need, most detrimentally doctors, you’re not going to get any. I was stuck. Lost again.

That doctor was adamant that a spinal chord stimulator was absolutely my best option—something that both of my doctors at home completely disagreed with. Wasn’t a piece of machinery inserted into my spine just as much of a prison, in the context of his metaphor, as oral medicine? It surprised me that someone who called himself a specialist couldn’t see any of this.

More and more the conditions of my life felt further out of control. I saw life around me, and I felt the tiny seed of my life that once was, but it was all totally buried by layers of circumstance beyond my fixing. The psychological damage was hardest to address, and I struggled to summon the energy it takes to keep your mental health in check.

This is where a little thing called support made such an immense difference in my life. While people around me helped in my search for answers–which on it’s own is encouraging itself–I was constantly offered a hand, a shoulder to cry on, an ear to listen, and extremely positive words. Not out of touch words, but reminders that I was not alone, and in the meantime while I tried to find my way out of the hole, family and friends and extended family were looking out for me. Even if I couldn’t see a way out, people like my mom would gently remind me that we’d always come through in the past, we’d always found our way out of the hole and we would do it again. Even if that meant one day at a time–which is basically the only way to go when you’re in survival mode.

I clung to those small whispers of hope and reminded myself I had emerged out of these hole before. I had to work hard to mentally process each day and not become buried by the story I told myself. It’s very easy to see the world as conspiring against you. I remembered the words of Paulo Coelho: “We warriors of light must be prepared to have patience in difficult times and to know the Universe is conspiring in our favor, even though we may not understand how.” Despite the strong tendency to mentally unravel, I had to believe those words and sentiments like them. I would see the other side of this, I just had entirely no clue how.

Then again, we rarely ever do.

It was sometime in early June when extremely promising news arrived, thanks to a gargantuan effort on my sisters part that finally materialized. She’d managed to get me an appointment at the Bateman/Horne Clinic in Salt Lake City. This clinic specializes in ME/CFS, meaning I was finally going to see a doctor who I didn’t have to prove myself to as though I were fighting for my life in front of a judge and jury. It meant getting the care I so desperately needed. “July 13th!” my sister enthusiastically beamed over the phone. “You’re in.” 

And just like that, I was found. I could see land again.

Could it be that simple? Well, It should come as no surprise, but it’s pretty incredible what a a doctor who specializes in the disease you have can do for a person. Imagine being diagnosed with breast cancer and being sent to dentist after dentist, each with conflicting advice but all sharing one thing in common: they simply don’t know how to help you. You’re in the wrong territory, and you can almost feel it as soon as you walk in the door. 

Securing that appointment with Dr. Yellman of Bateman/Horne is ultimately what and who is responsible for me being where I am now physically–alive and actually feeling alive. I cannot believe what the quality of my life was just a year ago, and how much progress I’ve been able to make. It only reinforced to me that so much of the suffering caused by ME/CFS is completely unnecessary, because a lot of it comes down simply to access to the right kind of help. Most people don’t have it, and the fact that I can count the number of ME specialists in America on one and a half hands is one big reason why. If the remaining doctors haven’t even heard of ME/CFS, or worse, have drawn the wrong conclusions about it, you might as well be a cancer patient seeing a dentist.

It’s no wonder millions of people are struggling, mentally as much as they are physically, because we’re simply lacking appropriate and accessible resources.

It doesn’t have to be that way, and it’s something I plan to work hard on fixing. To conclude, for now, I should emphasize I am not cured, by any means. It still takes a lot of medicine and methods and monitoring to keep Humpty Dumpty together again. I still crash, battle migraines and pain, and my energy envelope is still not in large supply. But a lot of my health feels like it’s in my hands again, and the rest of it lies in the hands of a doctor who I trust implicitly– not in the guessing-disguised-as certainty from doctors who simply don’t know better.

I will write more on the major things that helped bring me back to life in the follow up. But I just want anyone out there to know who is severely struggling right now, you may be by yourself, but you are not alone. You may be 36 and living in your parents basement (ahem) but your life can still be meaningful and happy. Sometimes it can be hard to keep up your willpower to live when you have to fight so hard for it, and ‘living’ isn’t giving you a whole lot to hang on to. I’m just here to say, hang on. Not only can things change, the way we see ourselves and what’s achievable in our lives can change. All of these things matter. I don’t pretend to cIaim they’re easy, only that they’re possible.

Keep on keepin’ on. We’ll get there.

Health, Happiness, Alive Again

P.S. This young old man says hi…

Hi

6 thoughts on “Lost & Found

  1. I found your blog through a friend of a friend. I have me/cfs and find a lot of comfort and validation in your words. You capture the life of severe me very well. Thank you. Looking forward to your next post ❤.

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  2. So happy to see your sweet face again, and so happy that you are feeling much better! Also feel that I have to mention, we have a new pain mitigation treatment here, at the Ketamine Infusion Center. Please check it out on our website – Calmare Scrambler Therapy. It seems like may be a good option for some of your lingering pain. At least something to consider. Non-invasive, and it is NOT medication! It scrambles the pain message that your nerves are sending to the brain. I know that ME/CFS is complicated, and I am very glad that you have found some solutions to feeling better again!

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  3. Oh Mary, I was just thinking about you the other day…..I was worried because it had been so long since you had posted anything and I knew that last year was horrific for you. I was so thrilled to see you in my mail today. And to hear that your life is a tad bit better and that good old Monty is still in the picture (both literally and figuratively!). And to have found a doctor that KNOWS about your illness and believes everything you tell him….that has got to be “priceless”! What an awesome sister you have to fight for you like that. I think of you as kinda like the Joan of Arc of ME/CFS…..so young and fighting so hard to be heard, not only for yourself but for the millions of others who are suffering. Seriously, you ROCK.
    Hope your mom is doing well, too. As a mom I can only imagine how much your pain and your struggles affect her (but please….NO GUILT….we mom’s are just wired that way and we would not have it any other way…we would GLADLY take your pain and carry it for you if we could NO matter what we already have on our plates….we love our kids (no matter how old they are) like that!)
    My day just got brighter knowing you are doing better and I will look forward to your next posting….and you look no older than 22!!!!
    Robyn

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  4. Every time I read one of your posts, I think, “please let her find someone who can help her!” I am so happy to read this one! I look forward to learning more. God bless!

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  5. Hi Mary. So glad to hear you are doing better! I was reading your post and kept thinking of the podcast “Terrible, Thanks for Asking.” It’s by Nora McInerny and I love her and the sensitivity and exposure she brings to tough subjects. It might bring some great awareness about ME/CFS to the world if she featured you. Just a thought. Again, so glad for your good news – you are amazing.
    Jenn Loeb

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  6. Mary, What a journey you are on! Stan and I send smiles and love to you that spunky former neighbor of ours back in Wilson Ct.! Nancy

    On Wed, Jun 23, 2021 at 4:28 PM FibroM.E.-Awesome wrote:

    > Mary Gelpi posted: ” But First.. Lost I don’t remember what I did for > Fathers Day 2020. Or Memorial Day or Cinco De Mayo or my brothers birthday. > Much of the first half of 2020 feels like one long blue. Like a panoramic > photo taken with the camera in motion. This is most” >

    Like

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