The Belly of the Beast: Chronicle of a Crash

My aunt is dancing in circles around me. She’s cleaning and organizing any and everything around the house. She just brought oatmeal and medicine to me in bed for the ulcer that’s upset again. Now she’s painting the dark spots on the baseboard in the bathroom, and she’s humming while she does it. She’s like a little home-improvement fairy. Last week, it was my oldest brother Doug in similar shoes. 

He talks and makes jokes while cleaning the kitchen— wiping down the counter the way a good bartender would. He makes coffee, cooks breakfast, fixes the broken technology around here, then asks what’s for lunch an hour after breakfast. My mom and I groan. Neither of us think much about food, nor about life past the next five minutes. He volunteers to run out for groceries and pick up prescriptions. When he returns, he’s still armed with energy to cook the food he just expended himself on buying. Incredible. 

Each of them work so fast and seamlessly between small jobs. I just watch and listen to them in total awe. I am pathetically stagnant, in one of the worst crashes I can remember. I feel like the still, unmoving eye of a hurricane, and people like Doug and Amy are the winds and rain and sheer forces of life blowing up all around me. 

Meanwhile, I’m reeeeally helpful…

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Hi would like yall like help doing the dishes? Just kidding I can’t stand hehe.

Their ability to complete tasks, one after the other, without having to stop in-between astounds me. Simple things requiring any iota of strength—running down the stairs for instance, which my brother does without a second thought—appear miraculous. I might as well be watching Doug walk on water.

Those stairs. They nearly haunt me. I crawl up them in the morning on all fours. I have to catch my breath at the top. I have to catch my breath all the time. 

I’ve never had shortness of breath this severe or last this long. We can’t figure it out. My o2 level is typically fine, though it drops in the 80’s when I’m upright. I cannot sustain a normal blood pressure. Every time we take it it’s somewhere around 80/50. My mom unwraps the velcro cuff and says Well, that would explain you feeling half dead. 

So often these last few months, I hardly feel like a person. I’m more like a spirit dragging around a clunky, metal, ginormous body that doesn’t work. It won’t go. It’s broke. But my mind is alive and wild as ever. I’m living mostly within the confines of that mind. The body cannot carry out what the soul craves, so nearly everything experiential is internal.

Anything requiring an outer effort is reduced to absolute necessity. Bathroom and back. Feed dog and lay down. Fill water glass, lean against the sink waiting, trudge back to bed. There is no room for recreation.

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Monty Gets It

I spend 95% of my time supine. Never stand when I can sit. Never sit when I can lay. That’s basically always the crash mantra, but it’s so especially true now. I find myself craving soft surfaces and soft clothes. I have no idea why I love looking at dresses and runway shows online. I can’t imagine wearing them–No, I can only imagine wearing them. But I actually never would. Fantasy I guess. Still gives a dopamine kick.

I hear my aunts phone ring and she answers it, while working! My brother does this too—which is again, unbelievable. How can they talk and listen and continue their task? I forget about socializing because I’m so busy trying to, you know, breathe. I forget that we need it; we’re humans and we crave connection. I need it too, and yet the sound of my phone ringing almost makes me angry. Why? Who would call me? I’m a moron!

Mostly I’m just irritable; exhausted from continuously wearing out so easily. I have nothing left to give on the phone. I am a pretty clutch texter, though. I feel a lot like this kitten I saw on Instagram…>>>>1

Only the people who I love and love me would call. (Pharmacies too, and a few scammers, too.) But talking takes energy. Even laughing takes it. Sometimes I take the plunge and pay the price. It’s worth it. For the sake of my soul it’s worth it. But right now, if my phone rings, I silence it and roll over.

This is how and why chronically sick life becomes so isolating. Relationships take maintenance. It’s why I’m so often a bad friend, sibling, aunt etc. etc. in terms of ‘staying in touch.’ And yet…

I’m lucky. I have understanding friends. An extremely supportive family. Most have learned my limits, or at least witnessed them and know what to expect. Even if they don’t understand it, the closest ones accept it and stick with me. I’m lucky as anything for all of them. 

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How Doth Thou Resist?

I keep promising Monty a walk, but we never go. Just to the backyard where I clumsily throw a tennis ball and he’s as excited and focused as the first time he learned he could drop a ball in front of me, whereupon I would throw it, and repeat this action to infinity. His cheerful, eagerness for every day of his life brings me incredible joy.

He eases my burden so often, in a way only dogs can. Just watching his tail wag and touching his velvet ears lightens me. Softens things. He follows me everywhere, even the bathroom, which I read is an instinctual protective measure, and now it kind of makes my heart melt.

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Hi I’ll Just Be Here While You Pee

 

I notice the healthy people never calculate cost. Physical cost. It never seems to be whether they have the energy to do something, only if they have the time. We all pay with different currencies. I cannot remember it. I cannot remember what that ‘energy-on-tap’ feels like anymore. I only know I had it once. 

I dream all the time about the day it comes back. I still believe I will have a life one day where a lack of health won’t be so consuming, so dominant. For now I feel like I’m standing in the same spot in the sand, the ocean of sickness coming in and out with the tide. The water crashes over me in waves again and again. Sometimes it relents, I will feel OK, (an extremely relative term) attend a family gathering. I appear ‘well enough’—healthy enough. Other times the waves wash over me and I nearly drown in them. I can barely see.  

I’m in that place now. I broke my own record for how long I could go without a shower/bath. The answer is way too long, mkay?! But this crash has been so powerful. So persistent. A shower just feels like a joke of an idea. My aunt keeps offering to wash my hair in the sink, but even that idea exhausts me, and I’d still feel dirty anyway. Poor Amy, I must really look rough. 

Sometimes it all becomes too heavy. Last week I lost it and the tears came out streaming hard and fast. I could barely speak—-couldn’t convey what was wrong. But because my mom is who she is, I didn’t have to. She patted my disgusting, unclean hair, not minding what an insane mess I was. “It’s OK Mary, just let yourself cry.” Her voice was shaky too and I thought how hard this must be to have to watch her kid like this and I hate that aspect so much. Love like hers is strong and remarkable and brings me back on solid ground. 

It’s easy to forget she has this disease too. And so does my sister. Watching her children suffer is worse than anything, including her own physical suffering, she says. I believe her. I also believe I’ll be well again. I’ll at least be better than the human disaster I am now. One day, the roles will finally reverse. I’ll be healthy and able to care for her. Take her blood pressure. I joke that as reimbursement for their long-term care, I’ll change her and Marcs diapers when they’re absurdly old. It makes all of us laugh, but I really do mean it. 

Even in a crash as devastating as this one, I have to believe I will come out of it, despite not remembering what I felt like before. Once I’m better, I won’t remember how bad this feels. It’s such a strange phenomenon. I can’t wait to not remember.

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Note to self, this blows really hard.

Things will change, they always do. This will pass and things will improve. I don’t know how it will happen, though a few ideas float to the top each time. Must keep writing. Must keep trying. Must keep believing. 

For now, the challenge remains the same: finding the balance between surrendering to what my body needs, while pushing back on the things that I can change. That need changing. I won’t give up on pursuing health and trying to accept that my definition of ‘well’ will be different from others. I’ll contunue to try and recognize joy, meaning, and gratitude among the muck. Cry when I need to cry, but try to laugh more.

I’ll continue to pursue a version of myself that I can be proud of, even when I’m swallowed whole by this miserable beast. That part is the hardest, but most worthwhile. 

I won’t give up on fighting for the NIH to see us. 

My eyes are heavy again and my head is clouding up. Time to drift away to some tinkered version of here. I can hear my aunt in the kitchen, sweeping, chatting. My brother shuffling up and down both flights of stairs. My moms hand stroking my hair. Thank God for help. It will be OK. Keep trying. Keep going.

Health, Happiness, The Belly

 ***PSA!!!***

I am happy to report that after three extremely hard, very sick months, I have finally emerged out of the rock-bottom part of this crash. I can breathe again! I’m on two feet, thanks to prescription, altitude, and stress adjustments. I was finally cognitively capable of pulling some writing from the last few months together. Anyway, if you’re going through hell right now, in whatever capacity, I feel you. Keep going. It gets better.

2020 Hear Me Roar! Or Meow, Just Depending on Things

Even if the Holidays are officially over, (although Mardi Gras is just around the corner) there’s nothing like the mood set by a lit Christmas tree in a dim living room. Monty is sleeping beneath it, his long breaths almost in sync with the fade on-off feature of the lights–it all sets quite a scene. Like a Norman Rockwell painting in here.

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what.

There’s something about quiet nights like this—just the dog, me, and the glow of the tree, that I feel I’ll remember for a long time to come. Maybe it’s this hidden fear that it’s all about to change, which is true, it is. You always end up missing the ordinary things.

I’m trying to ignore this headache and concentrate on the smell of the fern. It’s not really working, the headache tends to win out a lot. But I’m enjoying the atmosphere  nonetheless. This has been quite the Giving Tree. I only watered it once!

I say it every year, I know, but the Holidays still thrill me because people do nice things for no other reason than “Hey, it’s Christmas” and it’s always been one of my favorite things, ever. I’d been attempting to get a Christmas tree since Thanksgiving weekend but my health wouldn’t cooperate. Two weeks before Christmas my stepdad Marc showed up out of the blue at 2 pm, knocked and swung open the door jokingly singing some Christmas tune. He had a 10 footer in his truck just for me. What a gesture!

I named her Carol and we put her in the corner and she has been a real treasure. It was all the gift I needed really. Kidding—it’s about having family and friends to share Carol with, and having them here was great. Of course, it came at great risk.

A week before my brother and his family of five in tow were to arrive, their oldest came down with a stomach bug. Then the youngest. And on and on. One by one, each day, another would vomit. Another bit the dust. My mom and I would dart our eyes back and forth with news of the next man down, calculating their arrival date in our heads. Then on Friday, my brother Nick finally succumbed to it–they were arriving Monday. The ominous question no one wanted to entertain entered the conversation. Was one dang Holiday worth the rest of us barfing all night? Of course it was! It’s Christmas for Gosh sake!

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Who could do without these cotton headed ninny muggins?

We justified it. We convinced ourselves. No, they wouldn’t be contagious by Monday. Couldn’t be. We’d wash our hands. We’d drink hand sanitizer and bathe in vinegar. Many people convinced me with enough handwashing we’d be in the clear. My mom was more skeptical, but eventually she said a bit defeated What can ya do? If we get it, we get it.

Well, at 1:30 am on December 28th, we got it. Or, got it. Snuck right up on me. I puked so much tinsel I thought I’d puke again. And I did! It wasn’t tinsel, it was kale, I just thought tinsel painted a more festive image. I cursed Christmas, just for a moment, but then thought eh, what the heck. They’re worth it.

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They make it fun.

Luckily the same fam who gave it to me, took care of me just as well. I thought Jeesh, being sick is so much easier with people around! That thing knocked me out. Since everyone left three days ago, I’ve spent every day in bed with a weighted exhaustion and deep ache in my bones. BUT, today was the first day I woke up migraine free and my old lady bones had calmed down at least a little. Progress!

I was thinking how it’s difficult to be in a position of needing help. Chronically that is. A stomach bug leaves, but this chronic illness stuff, it will ware you and your loved ones out. The idea of being a burden is a constant fear I fight. It’s so reassuring to know  your own autonomy and be able to rely on yourself. Losing those capabilities through illness is hard to know what to do with. Asking for and accepting help was more difficult than I expected, especially when you were once so independent. One of the tougher lessons in all of this, I think. But, it becomes easier when you stop resisting it. What you resist, persists, as they say.

Once you start to release the idea of your self that doesn’t quite exist (healthy, reliable), you ease into the reality of being just the human you are. (A wasteland) The best way to handle this is with humility and gratitude. No one likes to help an ungrateful pain in the ass. But someone who is aware of what they require, can reach out for it with grace and acknowledge those who help them with humbleness, is more likely to receive kindness. People are more apt to tolerate and even enjoy your pain in the assness. That’s where being sick surprises me. It can bring out incredible things and open the door for doing good– not just in yourself but in others too.

Speaking of doing good, I wanted to end on a note about advocacy. Namely, what an absent advocate I’ve been this last year. I was sort of on a role, going to D.C., circulating the petition, begging for signatures like a desperate vacuum-cleaner salesmen. Do those still exist? Sending thousands of pages of names and stories to the NIH. Then what?

Besides spending the first three quarters of 2019 in the physical state of a trashcan lit on fire, it was more than a lack of physical health. I lost my footing. You have to find a very particular headspace with ME advocacy, and I sort of lost myself.  I became discouraged at the federal responses, the intolerably slow pace of things, and increasingly saddened hearing the repeated stories of such insanely debilitated people being dismissed, doubted, and deserted by the medical world. Shamefully I admit, it was just easier not to fight. At times I thought What am I doing? Is this going to achieve anything?

You can’t unring the bell, is the thing. Once you see how bad it is, how desperate this situation is, it feels negligent not to fight to try and change it. There are no guarantees in advocacy. But like always, I know inside it’s better to try. Maybe it won’t make a difference today, but our collective efforts are going to change things eventually. All a matter of when.

In the meantime, the fight is infuriating. You have to remain hopeful despite receiving responses from the NIH, like the one below, that tried very hard to list all the ways they were getting serious about MECFS, and even included a Press Release from 2015 to prove they meant business! Effectively their letter said this: We. Still. Don’t. Get It! Orrr, maybe they do get it, in which case their letter said this: We. Still. Don’t. Care! But thanks for writing us, and sending that cute box, haha! What a crock. You can (click) and read the letter below, or someone can make a fart sound and that would effectively be the same thing.

Their response wasn’t infuriating because it didn’t include a promise to immediately allocate $100 million bucks. (Although, that really would help us out GUYS) It was immensely tonedeaf but most of all it just didn’t hold true. I read the words over and over, grasping at vague promises and past “efforts” trying to convince me that they really do care. OK, great. But you can’t just take their word for it, so when you do your due diligence and learn things like NIH funding dropped 25% since 2017 for MECFS research— it’s easy to think OH What in the name of SAM HILL HELL ARE YALL THINKING? Ahem, excuse me. Like I was saying, proper headspace.

So, you get it. It’s tough. But the work is too important. I’ve seen what this disease has done to countless strangers, I’ve lived what it’s done to me, and I continue to watch what it’s done to my mom and most recently my sister. I just wanted to remind myself here at the beginning of the new year, and the twelve or so readers, that this fight is desperately still in need of all our help. It’s absolutely clear the NIH won’t act without a lot of outside pressure and heat and noise; I believe we can bring it.

I’ll do my best to stick with it and continue to try and be creative and positive throughout this fight. As always, I’m open to ideas! The petition is still live and well, but I’ll work on new ideas of how best to work with it.

Being shown and gifted so much kindness in my life, I think the best possible way I can pay it forward is to remain dedicated to this campaign, regardless of how little I think it may matter on one day or hopeless I may momentarily feel. At heart I believe the change we seek is possible. And Monty does too.

Health, Happiness, and the Roaring 2020’s

The In-Between

I’ve been writing at my typewriter way too long. Something about that bright red device with such mechanical three-dimensional features allures me to the window. It also helps that it produces something tangible at the end. Something I can read and underline and scratch out afterward. But it’s made me abandon my place over here! I’m pretending you care. At any rate…

It’s the mooooooost wonderful tiiiiiiiiime of the yeeeeeeear. I sing that around my house when I get a burst of energy. It makes Monty all feisty.

Christmas, finally! No wait, this year flew by. I think. Yeah, it did. It’s funny how most conversations are like “Something about time.” “Yeah, and something else about time!” “Not to mention the weather…” “Oh yeah, and the WEATHER!” Weather and Time, making conversations since the beginning of…well you KNOW!

Today my friend Matt and I are going to get a Christmas tree. And Monty too, if we can fit him in the trunk. Whoa, I meant to write truck. He’d never fit in the trunk. Anyway it’s really not a great Christmas-getting-tree day. It’s warm and soupy outside.

I should try and embrace it. I don’t think Colorado sees humid, soupy days in December.

Meantime I’m prepping myself for Christmas week. I so forward to this week where most the family reunites and we cram as much doing and going and seeing and visiting into one week and make a bunch of magical memories. Then at the end of the week everyone goes home and back to life as usual and I’m left with a body that feels like it’s been bulldozed for the next three months, at least. Sometimes I fear I’m becoming a human Kathy cartoon.

KATHY
Ew.

The point is, I know there’s a better middle ground where I can plant my feet. The problem is it involves more saying no. Saying no means missing out, and missing out is really depressing when your family is finally in town but an arms length away. I’m the youngest, so I especially never want to miss out. It comes with the territory.

I think when you’re sick this long you forget what this need to Go and see and do and lunch and dinner and friends! and the zoo! and the park! what’s next?Let’s go!What’s next?Let’s go!– feels like. Wait no, that’s wrong. You do remember the feeling, psychologically–you still have it in fact. You just can’t deliver on it and you haven’t in a long time. That pace of life becomes slowly unfamiliar. And unsustainable. Suddenly you’re surrounded by people who wake up in the morning and put on their pants and go and go and go, and it’s a stunning reminder of what physical health allows. But you just can’t go at that pace, at least not very long. And not without paying.

As a person so physically limited, I live in a fantasy-land where everyone meets up and says “Hey do yall want to just hang around here and play cards and watch movies and throw the ball for that dog who we all love and adore so much and also discuss and agree about the direction the world is taking? Sounds good, I’ll get the hot chocolate going. Elf starts in ten.”

A fantasy, of course. Healthy people want to go and see and do, and they should be allowed to do as they want and not feel like they’re leaving a soldier behind. But it’s just tough when you have sick family members and big groups of people. Each person needs what they need, and we have to learn to compromise where we can. The truth is, well, it sucks. I want to be able to do all of it. But then nobody, really, can do it all.

Ah wonderful, now it’s raining. Real great Louisiana! Wait, last Louisiana Christmas for a good while. Soak it in. Soak all that soupiness in. One moment, I need to turn the AC on.

It always helps me to break up the time I have with my family around Christmas into really small pieces. I try to recognize the specialness of moments (within the moment) and almost freeze-dry them in my head. Take a detailed note of everything and put them in my pocket for later. I have a few of those “nuggets” in my mind from the past that I’ll always hold onto. But it’s not easy. I’m constantly fighting between what the heart wants and what my crap body can handle.

Sometimes we concentrate too hard on making big plans and doing big things, one thing followed by the next and the next. We could probably stand to slow down and smell the poinsettias now and then. But too, it’s nice remembering some of the best parts are in the prepping of the big thing, or the resting afterward, or story time before bed. All the little in-betweens.

Since I can’t keep up with it all, as my body proves to me year after year, I will try and be highly awake for all the smaller, do-nothing moments. Take little snapshots along the way of enjoyable times, even the quick ones, give them a name and collect them like pebbles. It helps to write, of course. Then when your memory fails you, you can read a list of the happy moments you had. It’s about the little things, so they say, so it helps to capture and really treasure those as much as you do the big ones. You don’t always have to make it to the zoo to make a memory that lasts.

Then again, going to the zoo is really freaking fun.

What do I know? I’m still working this out. But it’s on my to-do list this year: Keep it simple. Let people do what they want. Enjoy the time I have with whoever’s around me. It’s obvious and yet, none of these things are done easily in practice. I challenge us all.

You know last year it was my goal to write shorter blogs but more frequently? I totally failed! That’s the nice thing about years, a *new year* always shows up. But usually I’m too weak to move by then. KATHY CARTOON! Ack!

Health, Happiness, Keeping up

 

Woah Is Me

The setting is a little funny right now. I’m outside on the porch swing, it’s only 6:30 but very dark. It’s warm and damp, on the cusp of a light drizzle. It might as well be July. Monty insisted we come out of course, without a care that it’s almost completely dark or mosquitoey or that it’s now in fact raining. The dog is such a happy distraction. My head is pounding. 

I’m tired of even saying that or thinking about it, but it’s hard to escape. A change of setting always helps, at least psychologically. But Monty helps the most. He cracks me up. He’s playing fetch with an old sock right now. Really. The dog will retrieve anything. 

I remember once when he was a puppy, we lived in these stupid college apartments, and we played fetch with a rock in a concrete parking lot. I remember thinking My God, the idea of this is so depressing. And yet there was Monty, flopping and running back and forth, proudly prancing after he’d pick up the golf-ball sized rock and spit it out to bounce back to me. Monty turned 12 last month. 12! He doesn’t look or act that age at all. You should see him fetching this sock. We might as well be back in that barren cement lot.

Time to go in Monty. Time to ice my head and wait for things to calm down up there. It’s like a storm is brewing in my brain, just like the real one setting in outside. It will rain tonight and be freezing tomorrow. All the small talk will change from how miserably hot it is to how insanely cold. 

***

It happened just like they said. Winter showed up overnight. Monty doesn’t seem to mind at all. My head was pounding when I woke up and I didn’t want to move. 

I’m not in great form today. This happens sometimes. I’m already missing the scenery here. What I see out each window. I’m already missing Monty. I know it’s stupid to think that way and I try not to entertain those types of thoughts for long. But it’s hard to pretend otherwise. I’m just afraid of the changes I know are coming. I am very afraid of moving. 

I’ve been in a sort of denial about it, because I haven’t had reason to face it head on yet. And when you’re in physical pain, you don’t really have the capacity to think so far ahead anyway. That can be a good thing. But the times when the reality of it does seep in, I feel so overwhelmed I can hardly move. They say pain stems from spending too much time in the past or too much in the future. It makes perfect sense, but alas, I am imperfect. I already know how certain things will hurt. I’ve been through them before.

We haven’t even sold the house(s) yet, but I know we soon will. For what could’ve been an easily “tragic situation”, this all turned out OK. No, I never planned on living in my parents pool house and wouldn’t have chosen it. And yet it turned out to be ideal, given the reality. Help is 15 steps away, as is my independence and autonomy. Monty and I have really grown up here, a second childhood of sorts. Adjusting to a new normal—a lack of health— has meant learning to be soft where I used to be stubborn. You just don’t have the energy to fight against things, to be so particular. And the relief comes in realizing 95% of the things you fought and fussed over were useless—petty or temporary or out of your control anyway. It’s been a hard but good and practical lesson. It can only go two ways when you lose physical reliability. 

Monty is the master adjuster. All 12 years he’s wagged his tail and followed wherever we were to go. Whatever he does he plunges into with openness and playfulness and I need to lean in to this kind of thinking. But fear takes me over at the idea of upcoming change. It’s not just one thing, like the fear of what will be. What could be. It’s all this I’ll have to leave behind, too.

Even the painful parts. This house is so filled with receipts of life and pain and revelation and hope. It’s strange that even leaving something painful behind is painful itself.  

When I think of the fact that we are moving back into the house I grew up in, in the town I grew up in and hated at the time, I feel sick. But that’s putting it all pretty crudely, isn’t it? As I’ve learned over and over, it’s crucial that we write the story and not allow a fleeting feeling like fear to take over the script. It’s all in how you frame things, I know it. And of course I can do a better job than reduced, negative summaries like that. It’s almost tragically hilarious, which seems to be the theme of my life. I’m 35 and moving North into my parents basement! Who could write this stuff? 

I know, I know. I am lucky for so many reasons. I could always stay behind and see what living alone without any help from my parents would be like—then I’d see! Maybe I wouldn’t complain about moving once I saw how terribly worse this could all be. I’m fortunate to belong to a family who cares. To have family/friends who care one way or another. But I think that’s where the deeper sadness stems from here; The lack of choice that naturally exists from a lack of health. 

You really can’t complain when so many people are helping you. And as backwards as it is, sometimes you resent the help. Resent needing the help. You’re so grateful it makes you cry, and yet you’re tired of saying thank you. This is a feeling, not the truth, and I know the difference. Gratitude has saved me over and over. Maybe I shouldn’t give these feelings a voice. But they’re there, like a lump in my throat, and I thought maybe writing out the fear would help disempower it a bit.

I fantasize all the time about being on the other end of this. Of being the healthy person offering the sick person (or anyone) my home, my energy, my ability, my ear. I’ve played out multiple versions of a possible future. I am wearing coherent, trendy outfits in all of them, and my house is very clean. But who knows what the real one holds. Maybe I end up a success in dirty PJ’S?

I don’t mean to be whiny, I’m not so sure why this premature nostalgia and angst is hitting me hard today. I guess life catches up with all of us now and then. It’s OK to cry about it, although it makes my stupid pounding head worse. I should take it as a sign I’ve cried enough. I called Monty over and he yawned. Real nice Monty! 

Sniff sniff, wipe wipe. 

Tomorrow I see the neurosurgeon. We’re trying to find out if I have CCI, Stenosis, or other structural issues in my cranio-cervical junction. I have no idea what’s wrong, only that I probably shouldn’t be in so much pain all the time or have to take migraine medicine as much as I do and the idea that having an ice pack glued to my head has become normal is just absurd. We have entered the absurd, people! So, maybe we’ll find out something more tomorrow. I have zero expectations, as I tell most doctors I feel like I’m dying and they then tell me that my lab work reveals I’m the specimen of health! Perfect, if only I felt that way.

I don’t want to get my hopes up but then, why not let her fly? If nothing comes from tomorrow I’ll not really have lost anything. Just another box checked. In it’s own way, that’s progress. I think. I don’t know, my head is throbbing and my thinking is starting to fragment again.

Maybe tomorrow will be the start of change that I’ve been fearing but will actually mark the start of something new and great. We’re crazy to ever think we know how it will all unfold. I only know that hot or cold, New Orleans or Colorado, Monty is happy to be alive and play–with a sock or a rock. And that kind of adaptability is something I strive for. Oh Monty, will you ever know how insane and complete my love for you is? I hope.

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Wish me luck.

Health, Happiness, I’m Not Crying You’re Crying

 

We All Fall Down. The Stairs. Sometimes.

This all feels like some cosmic joke as I write this, but the sh*t show must go on. I wrote this piece intending to pay homage to the last month, which has marked an unexpected bump in my functionality. All due to a small but sufficient amount of useable energy I encountered, as if finding money in the street. Look energy! Pick it up! 

For nine months, this invisible life force–something you almost can’t really know you have until you lose it–has eluded me. And then, subtly and seemingly out of nowhere, it flipped on inside me like a light switch.

For the last month I’ve been hard at work on an important story about the opioid crisis; the data driving it, the policy, and the affect it’s having on millions of chronic pain patients. I’ve felt compelled to write it and share a side of the narrative that’s gone missing from the national conversation. The point is, I felt functional enough to devote myself to this article in a serious way. Almost every day for two weeks week, I put on real pants and drove to the downtown coffee shop, the one with terrible art work on the walls and unforgivable price tags, where I’d work for hours at a time. Most of you know 2019 has been a garbage pail of health issues, not really allowing exertion like that on my part.

The joke is, I’m trying to write a piece on how great I’ve felt, in one domain anyway, and I am continuously interrupted by how terrible I feel due to one of the more severe migraine cycles I’ve had all year. Also the ice pack strapped around my head keeps dripping water in my eye. Just great.

Despite the newfound strength I came into, my physical symptoms persisted. Migraines, face pain, POTS, cystitis, the badder disaster–all alive and well. The catch? Having this new, albeit small and yes, limited, amount of energy on board has been a game changer in terms of dealing with all the pieces that go into life with chronic illness and pain.

Finally room opened up in my brain and body for a resilience to deal with the symptoms  proactively, or distract myself from them (insofar as possible), or just enjoy the rare freedom you feel when you finally have a choice in how you’ll spend even 1/3rd of your day.

The relief it’s brought has left me in tears of gratitude. Not a relief of pain, but of burden, of carrying this heavy, physical weight around for so long. And finally taking it off.

It feels almost impossible to convey how much more tolerable the experience became,  finally having some amount of energy inside to help take it all on. It’s still a difficult and daily battle, but when you suddenly don’t feel the active force of gravity working against your every move, well, that helps.

What doesn’t help? Falling down a flight of stairs at your cousin Kenny’s house, the night before his moms funeral. Wait maybe that’s the joke. You know, this story is just so Gelpi.

So, maybe my month of reliable energy has begun to wind down. I’ll go out on a limb and say that becoming entangled with an industrialized fan on the steep fall down the stairs and breaking that fan with my face at the bottom, did not help. I had grill marks on my face people! Like some piece of George Foreman meat! Good Lord.

The point in all this was to pay homage to feeling GOOD, and the things you get to do when you’re not stuck in a dark HOLE. And so it shall remain. I’ll tell the Tumble-Down-Kenny’s-Basement-Stairs story soon, I swear it. I’d never hide such comedy gold.

It doesn’t easily escape my mind how bad one day in August was, just two months ago. I couldn’t lift my arms above my head, the weakness and heaviness and dizziness were relentless. My entire head throbbed with pressure, and I felt a total desperation wrap itself around me, barely able to keep my eyes open laying on the couch. I feared the physical feeling of that day would never end. And then less than two months later, I end up here…

Attending a Saints game with family and friends, yelling in the Dome to throw the Cowboys offsides, and most importantly, enjoying the hell out of myself. How could such a transformation occur in such a short time?

I can’t know. I stopped taking one of my anti-vitals. My mom prayed a novena for me after an especially bad few weeks. I pray my Hail Mary’s every morning, waiting for my head to calm down. All I know is the very terrible day in August did end, and for a while at least, I’ve been gifted with enough energy to participate in my own life. I’ve paid a price for things, but at least I did something to pay for. Most of 2019 has felt like a constant hangover without a sip of alcohol.

I just want to remind anyone who’s sick and in a crash or experiencing a rough patch to hang on. I know how desperate and forgotten and isolated it feels. How insufferably long the time can take to pass. (Trust me, this is the first time in 9 months I’ve had some level of functionality) The truth is we just can’t know the future. But given a chance to play out, turning (inward) as a spectator to our lives when we can’t participate in it firsthand, it will usually reveal some incredible grain of truth that will make life sweeter, easier, and closer to whole. At the very least, it will make us hugely grateful for the tiniest of things–and it’s hard to be unhappy when you harness true gratitude from within.

So what does the letup of a nine-month crash finally allow for? Well, really dumb but fun stuff that makes me happy. Like a few weeks ago when I gave Monty a bath. We came inside and I brushed him while watching college football. I noticed the little pile of hair was becoming pretty dense and also that it seemed it could be arranged, as if I worked at it, I could shape it into a smaller, furry replica of Monty. So that’s what I did…

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“Won’t my mommy be so proud of meeeee!”

And YEAH, I’m proud of my work, mkay? It took some real finessing. As you can see, the first few editions were not quite right.

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A bit too wispy…
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A bit too 1950’s mouse cartoon…

You can call this a waste of time and probably not be wrong. The thing is, when you’re feeling well enough to exert yourself in creative ways beyond just surviving, nothing feels like a waste. Things take on a new lightness and enjoyability. Even bathing the dog. Of course Monty was a wonderful and willing model. Speaking of which…

Monty’s good looks should have been earning us money ages ago. Thanks to the Aunt Becky scandal, I learned that “Instrgram Influencer” is a real thing and decided Monty needed to be one. We haven’t turned it into cash yet, but we do get a discount on merchandise from these brands that saw his picture and posted them on their pages. So yeah, we should be earning hundreds upon hundreds of dollars any day now.

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Who. Dat!
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This is what Monty thinks 23 hours a day.

Anyway, I’ve done more than make small, furry replicas of Monty and model him in bandanas. I finished The Snows of Kilimanjaro, which had me enamored for three days straight and I need more Hemingway to read. I’ve continued to work painfully slow on completing sudoku puzzles, as well do a lot of swimming because it’s October and 93 degrees and that’s just, you know, reality now.

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Panting. In the Pool. In October.

In the end, yes, I fell down Cousin Kenny’s stairs. But you know, the fact that I was well enough to be at Kenny’s in the first place, and subsequently do acrobatics with a fan down his stairs–well, that says something. Something good, believe or not.

Here’s hoping the recovery isn’t so bad. I write this as much as a reminder to myself as to others, of how fleeting all this is. That idea used to frighten me, as though nothing were solid and reliable. But now I find it revealing of a truth that’s freeing, a relief. This was always temporary. Changes can come hard and fast, but looking with creative eyes and a depth of perception, we can often find that they’re in our favor. We have to stay awake though. Give life a chance to show you how things turn out. As the adage goes: In the end, it will all be OK. If it’s not OK then it’s not the end. Cheesy, yes, but I can be on board with the idea. So march on soldiers. As always, we will get there.

I’ll just take the elevator wherever we’re going.

Health, Happiness, and the Bruise on my Thigh Has Given Me Three Butts. Three.

An Extremely Obvious Revelation

Captains Log: Day Four Million and Six. Still crashed, I guess. At what point do you stop considering yourself crashed and just accept that this new garbage state is just.…your new normal? Everything is acting up, like normal. But it’s been the challenge with my heart, wanting something it cannot have, which I’ve struggled hardest with. I don’t typically spend too much time in the “greener grass over the fence” world,  but something in me is willing hard for a life I don’t have. It’s also being imaginatively precise in the world it wants that cannot exist.

I’m in a rut, if that wasn’t clear. 

I’m reflecting on how it all began. I can at least say what helped inspire it: Ignoring what I knew I needed to do, which is one of those human behaviors I will never understand. My morale was low, which was linked to my motivation. It was still there, but it dissipated a little every day I went  on deflecting from the thing that would do me some good: writing. It was like a shooting star that burst in a short lived flash of light. But it would fade just as quickly if I didn’t act while it was illuminated. Then the sky would go back to black, and having failed to act, the brightness dwindled, as did the likelihood of me writing all the things pleading to be let out. 

That’s why they say strike while the iron’s hot, I suppose. Again and again and again I’d have the spark and ignore it. Or put it off. Or write in my notebook, which is something better than nothing, but I knew it’d little good there. It didn’t risk anything or challenge me in a way that makes me try harder whether the quality is better or not. Saying “tomorrow is just as good as today” became a dangerous motto I obeyed and it’s not even true. I was kidding myself and knew it inside, but I still couldn’t pull it together. 

Instead I worked on three sudoku puzzles from a Southwest magazine I snagged on my flight home from Miami. I made some dumb deal with myself if I could finish all three than I could trust my brain. I finished the Easy, then worked on the Medium for what probably took far too long, but finished, and then spent over a week on the Difficult until I messed up somewhere and it was impossible to fix. So I threw it out finally, assuming OK, now it’s time for writing. But then I studied Sudoku strategies online instead, which I’d never done before. Interesting stuff.

I went to Miami in the first place to see my real life hero, Dr. Nancy Klimas. I honestly feel little a star struck when I see her and I just want to run up and wrap my arms around her bear hug style and lift her off the ground. Do a twirl with her raised in the air! Hah, what a sight. She ordered a lot of blood work and neurotransmitter tests. One interesting thing she suggested was the use of a tens machine as means to stimulate the Vagus Nerve, which has gotten a lot of press in the MECFS world and has helped people with varying symptoms. One of those is headaches, and since I’ve had one of those for the last decade, I’m really hoping it will help provide some relief. 3 times a day for 15 minutes. I’ll report back. 

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Real Life 🦸‍♀️ Super Hero

It’s always hopeful to see a doctor who specializes in your disease, particularly when the other seven that you see have never heard of it. They’re doing your best, for obvious reasons, there limits to their help. Seeing Klimas was cathartic in that regard and other levels as I’m hopeful some of her ideas will help with multiple issues I’m having resolve, or at least improve. Particularly crashing almost every day about an hour after I awake. Also the cystitis and peeing every 10 minutes. And the daily migraines. And five months between periods. So, all of it, basically.

As for the rut, I think an envy began sprouting in me that at first I wasn’t so aware of. It started in a very dormant way, even though I was really enjoying my trip in Miami. I probably had more fun than I’d had in all of 2019 combined, which could fit in a thimble. It began with a very attentive observation of my surroundings, of simple things actually, and seeing up close how people who have their health are able to live and operate, day after day. I don’t know why this time I was so conscious of it and in such awe. On a general level at all times, I am amazed what man in a state of homeostasis can do. Maybe because 2019 had been such a burning trashcan of illness and life that I forgot what real health looked like. I was so amazed on one hand, and on the other, the envy for their ease of capability grew in me like a weed. 

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Singing the Beastie Boys

The logistics of family life, especially with four young children, is extremely difficult and doesn’t look easy. But it does look fun, too. I came from a family of six, so maybe some part of me naturally feels at home with that number. But to watch reliable bodies and all they could do became compelling and incredible. I’d listen to my brother and sister-in-law talk about plans, and I think I literally forgot about the concept of planning as a real thing. It’s not impossible and I still attempt it in my own life, but it is always tentative. Always. I am never, ever, a sure thing.  

Not a second thought about showers, grocery shopping, cooking big meals every night, meeting friends for dinner. How involved their social life was! I mean, they had one. How at ease everyday chores and tasks and errands (Or even just delegating them) were— not that they didn’t require work, but that no one was forced by potential physical repercussions to choose whether they would shower or grocery shop. They were solid people. They accomplished so much each day and were dead tired by the end of it, just when I’d start to feel a little more awake, strangely. They went to sleep with warranted exhaustion, and the sleep actually recharged them.

My sister-in-law was so alive in the mornings, which is incomprehensible to me. Both feeling alive at all, and being functional before 2 pm. When she wore workout clothes, it’s because she actually worked out. Not because she was a poser like me who wore leggings because sometimes just the thought of denim against my skin makes me cringe. 

I had truly forgotten what the privilege of health affords you across a day, a week, in all your many roles and expectations. I was amazed and then maybe progressively envious? Can’t say, but typically I’m overwhelmed watching the pace and the volume and the largeness of healthy peoples lives unfold. But for whatever reason, I finally felt it deeply in my bones, as though it’d been welling up there for years and I’d just never said it out loud despite it being glaringly obvious. To the point of it being useless to even repeat here. But it’s still flapping around in my brain, and I want to release it.  I’m warning you, it’s stupidly obvious: I am so, fucking, tired, of living life with this illness. 

How’s that for a Ted Talk?

It’s still there for some reason. It’s obvious, I get it, everyone in the world gets it– why it continues to circulate in my psyche like some grande revelation is beyond me. Maybe it just begged to be said plainly, without a “But” behind it or any justification for why having it has made me better in other regards! No, plain and simple. Just say it and leave out the decorum.

Pardon the F bomb, that’s just how the thought plays out. I write about hope and working with the hand you’re dealt and discerning ways to find meaning in the parts of life you don’t control. And suddenly it all faded quietly into the background. I felt like a hack. I looked around and could feel viscerally how much I wanted what I could not have. What was not mine to take. 

I can’t stay in that space long, even though I’ve still felt way a while now, though maybe not with such fervor. Zukav says that “The splintered personality must always choose between opposing parts of itself. The backbone of evolution.” I doubt it grows me any to want for what isn’t real. To live in a dimension where bad things happen without timely ways to always understand them. I am constantly walking the line between hope and despair. It is far easier to despair, I admit easily. I have to choose hope, consciously, with the intention that even if I can’t see the meaning in all of this yet, it will be revealed. Or at least if I’ll find salvation and treasure in it, the way I would try to in a life with my health. I can’t accept it’s all for nothing. I won’t.

Still, some days, some periods of time: So. Fucking. Tired. OK, won’t say it anymore. My mom will wag her finger.

Interestingly, I still had a great time in Miami. It wasn’t that I felt better there–I was crashed most the time. It was more of a simple enlightenment that being sick around people you love and like is better than being sick on your own. Obvious, I know. I  stayed in bed, sleeping on and off until around 3:30 pm. That’s when Olive and Miles (7 and 4) typically came home from school, and I’d reach down far for some strength and get up to greet them as they walked up the driveway smiling or skipping or holding art they made as though it were a proud flag.

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And the Tony Goes To….

It was nice being around them. I really do treasure my role as an aunt, even if I can’t do more and play longer without tiring out. I was able to see Olive’s first performance in a play: School Daze. It was about school, and how school is hard. Can’t disagree with that. It felt so fun to go and cheer her on.

I’d meet them at the beach, but it’d be four hours after they’d already been there. But that’s the great part about kids (and dogs.) No questions. No backstory required. They’re just glad you’re there.

A beautiful part of children is how adaptable they are. They don’t seem to mind that I’m supine 80% of the time we’re together. Kids can tire you out, but they can rejuvenate you too, much like the ocean. Luckily there, I had both. And those two made me feel more alive than I’d felt in a while.

I like these pictures because they fit in my fantasy world where things are normal and that’s fun to pretend sometimes.

I guess being around the whole family helped re-tether me to the world. Seemed I had floated away from it, or maybe it was the world that had floated on without me. Either way, once I was home, I didn’t bask in the solitude or the quiet, like usual. Reuniting with Monty always makes me happy, and is the symbol of “home” to me. Otherwise a harsh reality settled around me that suddenly I was sick with no one around during the day. But it didn’t feel like respite.

In Miami I would often just listen to Estee on the phone, or working on some project, prepping food for dinner that night, caring for the twins. As my grandma would say “She’s a busy body.” I got used to the background sounds of people living, and despite not participating in it, it was comfortable to me hearing it go on. Comforting. A reminder that life moves continues on, no matter what you’re wearing or what room you’re in. Of course that same fact when you’re in the same four walls for months can feel worse than unfair. It’s a pitiful thought, but it feels very real that the world doesn’t need you at all. (That is NOT true and I don’t believe that in any form at all. It’s your ego messing with you, and it’s dishonest. All of it)

I guess the drastic change, whether it was the lack of kids to make me laugh or of late-night life talks after the kids went to bed, they all made my life at home feel disconnected. My mom had left for a trip to Colorado the day after I returned and I suppose what I normally call solitude began to feel more like isolation. I had this feeling that I’d probably had enough solitude to last me thru another decade.

I surpassed my wordcount by about 5,000 words. I have too much to say because I put this off too long too long and that’s what happens. I’ll let this fly and hope things lighten up inside me, then I’ll do a little better by saying more with fewer words next time. That’s the ticket. Between now and then, Stella is working on getting her groove back. I’ll get there. I always do. 

Health, Happiness, Grooves

One Arrow Only

Want to hear a funny story?

Well first, some housekeeping. It’s been more than a while, I know. I feel like an idiot bear emerging from hibernation 3 months late and everyone’s like Dude, what have you even been doing? Getting crushed, that’s what.

A health update for 2019: mine is still mostly missing. Hate it when that happens! 2019 has continued to be a slow-rolling, sick train, punctuated by outings to every type of doctor, assuming I don’t call in sick to the appointment. Calling in sick to the doctor; what an absurd reality.

This elongated crash state feels like some kind of warped dream when I reflect on it. I would blame this on the repetitiveness of days that can start to feel indistinguishable from stagnancy. It feels like…

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Day
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After day…
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After Day…
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After Day…
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After Day…
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After Day OK I think you get it…

That last photo was on my way home from a cystoscopy, which they put you under for, thank Gawd. But I was a little…out of it. The procedure is supposed to help the interstitial cystitis, but low and behold, I still find myself having to pee like a racehorse a LOT, soooo, maybe it’s just taking a while to work. Here’s hoping.

As always the creative challenge of life with chronic illness continues. What a strange conundrum, living with a body that doesn’t know how to function as a body. So, what to do?

Reading Murikami’s 19Q4 followed by Killing Commendatore, which I’m sad to have just finished, have kept my imagination wild and busy, and I wish I could thank the guy personally for what joy he’s brought into my life. Reading Murikami’s stories doesn’t just give you ideas to reflect on–it’s a really involved experience just reading one of his books. It’s very involved somehow. As though a real exchange were taking place, but I don’t know how that is possible.

Before walking home from my parents some nights, I think of the characters inside the pages, waiting on me to get into bed and open the book so they can get on finding their way. It’s by far the deepest I’ve fallen into a body of work, fiction anyway, and I have absolutely no idea how he does it. I’m just glad to get lost in something so positive. It’s too easy to fall into counterproductive thoughts or habits when you’re so physically limited. So as always, it takes a good chunk of mental exertion to stay on the right side of the experience and to be cautious in how I tell myself this is all unfolding.

***

For no good reason at all, I get into bed at night and truly believe I’ll be improved tomorrow. I imagine all the things I’ll do. All the catching up and even what clothes I’ll wear while I’m busy bustling around the house. I can see myself cleaning out closets and on the phone, checking things off my list–Monty following me, room to room. I can envision it all, and drifting off, I always expect that tomorrow will be better. And yet for roughly 120 tomorrows, I’ve awoken to mostly a repeat of the day before. Oh real great Universe! 

Now and then I receive some improved feeling that I’m finally rounding the corner of this thing and the worst is over. Perfect! Then either hours later or two days later, I’m paying a high price for what feel like very petty offenses. The invisible line of this thing– it’s the most frustrating part. It makes any kind of management of it feel impossible.

It’s like driving through a backwoods town in the middle of the night without any headlights on. The “warning signals” of this illness are meek and inconsistent. You have to pay such careful attention to what can be a trigger, but even still, it seems sometimes you crash for no reason, or have a full month of migraines for no good reason. It can be hard to see straight at all and you wish you could just turn your danged headlights on!

I  am surprised this crash has endured so long. But maybe it’s silly to be surprised. It’s certainly worthless to take it personally, and yet it’s easy to feel that way. Waking up to the same fight day after day can easily fuel the ego, which will try to convince you of just that. That it’s personal and unfair, and going down that route doesn’t do one bit of good. I have to keep things straightened out in my mind and brush off ideas that are useless and untrue. Maybe the truth is simpler more often than it’s complex. As Tolle says, “It’s neutral. It always is as it as. Nothing more.”

The truth here is, this is the nature of the illness I have. It waxes and wanes, so there’s no reason to be caught off guard or believe I’ll never improve. The fact is this is a disease behaving like a disease. The physical toll and reality are hard enough, no sense getting hit with a second arrow, right? The second arrow is feeling bad about the first arrow. The first arrow is being chronically sick in the first place. One arrow only, please and thanks.

Defaulting back to simple truths is how I’ve been trying to handle all of this, psychologically, but of course it’s not always so easy. Actually it’s never really easy, but it is meaningful when I can find joy and purpose despite it. I’m happy to at least know what ideas and thoughts aren’t helpful to the situation and to vanquish them before they have a chance to take hold and grow. I’m happy to have the counsel and ear of my mom, who hears me out and comforts me when the struggle feels too big, without me barely having to say a word. Talk about gifts you cannot buy.

Despite knowing certain truths consciously, I find myself always questioning myself. I lay in bed thinking This is obnoxious. There must be something I can do. But some days really are just bed-to-bathroom days, and I have to be honest about what I’m capable of. My life feels split in two sometimes, because so much of my communication with people is through text. So I’ll be lying in bed feeling deadly, but texting smiling emoji’s with plenty of exclamation points to show my love and enthusiasm for other people, and I think how strange it is, the dichotomy of the life I project sometimes and the one I’m actually living. I imagine maybe everybody struggles with that, in their own way. We all contain multitudes.

The timing of all this is crappy, of course. There’s never a good time for a crash, I suppose, like there’s never a good time to break up. But there are worse times for each. Being this crashed in the middle of trying to pack and prepare for a move is like the timing of getting dumped on your birthday. Oh well. Even after birthday breakups, people recover. I think.

***

The story!

Last week I was tired of waking up and feeling like I was on my deathbed, naturally. So, I figured there had to be some good meditations on waking up and getting your body psyched for the day. Right now, waking up feels like I went to sleep by getting hit in the head hard with a frying pan, like the characters in cartoons. I’ve also been very weak in the mornings and getting out of bed has been really challenging.

So, I find a mediation easily on youtube, geared toward waking up and energizing the body. It’s 15 minutes. Great. I press play. 25 minutes later, I wake up to a commercial playing and realize the meditation meant to wake me up peacefully sent me back to sleep. Swing and a miss! So, I try another.

This one is also 15 minutes and looks promising. Energizing! it claims. So, I make it through the first 13 minutes. I’m having a hard time focusing because I’m really weak, I’m fighting the bone-crushing fatigue and my migraine is back. But on with the show. The woman guiding the meditation says to repeat the phrases she’s about to say out loud. OK… “Repeat after me” says the slow, assertive voice emitting from my phone. “I feel strong and powerful.” I can’t help but let a smile melt across my face. I say it anyway. “I feel strong and powerful!” “I feel energized and ready to take on the day.” My smile grows bigger. “I feel energized and ready to take on the day.” Now I can’t help but actually laugh. “My body is healthy and my state of mind is focused.” Ummmm…

At this point I am half repeating and half laughing, because I don’t feel these things the woman is saying, like at all. But the fact that it’s making me laugh feels like a success all on its own. A few minutes later, I fall back asleep. BUT, it’ a very peaceful sleep. So maybe it wasn’t a total loss. I imagine once asleep I was “energized and ready to take on the dream.” ;)

Maybe when I’m a little stronger it will work. I don’t think it will be long now, yet I still have no idea why I think that. Owell, it feels good to believe it anyway.

Health, Happiness, and I FEEL STRONG AND POWERFUL

 

The List of Broken Things

Everything has been breaking lately. The dryer, the tractor, my phone, the pressure washer, leaks in the ceiling, moisture stuck in the windowpane. (I could go on.) And for the last I don’t know how many months: me. Just add my body to the list of broken things. That was the thought I had while my mom listed everything going ka-putz on us.

I am getting in to bed and once again praying for the normal things, that we can find the right people to fix what’s broken, expressing gratitude for all I have, all I’ve been given, and a special intention that tomorrow will be better than it was today. A prayer I’ve been saying basically since Christmas.

2019 has been such an immense challenge. I feel like there’s some secret virus within trying to take me down, then I remember that Oh right, this is what a bad crash feels like, I’m just not used to them lasting so long. The last few weeks have been really trying.

I haven’t been getting out of bed until after 3–not really waking up I mean. As soon as I feed Monty then feed myself, I’ve reached my limit. The first ‘mini’ crash of extreme tiredness and weakness rolls in like a heavy fog, and I feel like I can do nothing but collapse under the weight of my newly dense body and immediately fall asleep. This isn’t so typical of my crashes. I rarely actually sleep that much at all. I’m horizontal, but not dead asleep. This feels new and I just can’t figure out what’s going on.

I’m writing this on my phone because trying to type on my computer from this position just doesn’t work. I have so much I’ve been writing and wanting to write and post, but finishing anything has been nearly impossible. I feel so angsty leaving the blog blank, so I figured I’d let it be known that I’m alive, I’m just probably asleep as you read this now.

It’s been hard accepting the strict terms of this crash, which has been very little upright time, and littler awake time, so it feels anyway. The weather has been beautiful, and this being my last Spring in this house, I’d prefer to enjoy more of it before I go. But for whatever reason I have really been taken down by such a “late blooming” crash. Typically by this time, the inevitable “Christmas Crash” has faded, and the good weather usually gives me a health boost. I don’t remember ever being so debilitated in the Springtime, but me no likey.

My parents are busy trying to prep the house to go on the market and cleaning and fixing things, yada yada yada, but I’ve been more of a useless flesh tube than ever! It’s crappy timing because I know they could use the extra man power, but luckily people like the amazing Matt has donated so much of his time to help any way he can. And I know friends like that are something to stay grateful for during all this.

And Miss B, the woman who cleans my house and literally makes it a sunnier place as soon as she walks in. She calls me “sugar” and “baby” and when she leaves she hugs me big and says “I’m prayin for ya Mary.” I tell her the same and she says “I love you, you’ll be better one of these days.” I tell her thanks. That I love her too. And that I believe her. And for whatever reason, I do. Cleaning lady? No, she’s like some angel who happens to clean up while she’s around.

She was here this morning and I slept through 3 of the hours she worked. The sound of the vacuum tracing lines in and out of my dreams. I never sleep while she’s here. We normally talk and laugh and even cry sometimes, covering all the bases while I drink coffee and she cleans in circles around me. I watch her energy in amazement.

Then Matt came around 2 and has been pressure washing all the cement around the house outside. Talk about back breaking work. I tried it for 10 minutes yesterday and had to come inside to take a breather. (Pathetic, I know) As soon as the machine started, I laid my head down and fell immediately asleep, not waking up until well after 5, feeling terrible. Matt was still working and I watched him outside as he worked, his headphones in and in his own little world as he managed to clean so much surface area. It feels like a miracle when I watch capable people do hard work. But these things that seem like miracles maybe actually aren’t–it’s just what you’re able to do when your body knows how to be a functioning human body. The miracle is the kindness of people who are so willing to help. I guess it’s just been so long, I can’t remember anymore what that physical capability must feel like. But let’s just say I fantasize about it more than ever.

I believe I’ll get there one day. That all of us will. I can’t explain it, but there is this solidity in my gut, magic ball that shows me living a life where I’m well, usually I’m outside pushing a kid on a swing. My kid? Don’t know, I hope. But I just have to believe this will happen in my lifetime. If I’m 60 well then, I’m 60. But my gut shows it far earlier than that. So just hang on yall. I know we will get there, we just have to make it through this ridiculous, tough middle part. It’s only like the 3rd hardest thing in the world! But we can do it. Our time of health is waiting for us. In the meantime, I’m lucky for people like Matt and Miss B, more grateful than ever.

So it’s back to my usual routine– getting in bed, saying my prayers and asking God to please, PLEASE (just to make sure she’s paying attention) give me some energy tomorrow and let my rest actually refuel me. There is so much I want and need to do. Like take a shower– it’s not asking so much! I know I will break from this crash soon, or I am hopeful and expect that outcome. I also know the toughest part of the game (for me) is surrendering while you’re in it. Remembering this too shall pass. Right? Right.

I feel I’ve been doing too much surrendering, and I wish there was a way to successfully fight back against this thing. But I’m out of ideas. And I’ve been sick long enough to know what happens when I do push against it. Might as well run my head into a wall. I can’t afford to pay anymore. I’m broke! Body broke. I know I just have to wait it out, and I will emerge eventually.

At any rate, maybe God reads blogs in all that spare time she must have. So maybe she can check this one out and throw me (and a few million others) a bone. Oh and Monty too, not because he likes bones but because he injured his leg yesterday and now he’s out of commission too. When I say everything is breaking, I mean it. Just great.

Anyway, I’m laying my trust in the universe, in an intelligence that knows more and better than me. But I am hopeful too, always hopeful, that tomorrow might be the day things start to turn around. And if it’s not, well, maybe I need to send a package of pill bottles and a petition to Heaven and get their attention up there.

A final thing- next to my bed is a medicine stick that was given to my dad by a traditional Indian medicine woman, back when we lived in Colorado. It’s made with a coyote skull on it and has a bunch of different symbolic items painted all over it, with feathers hanging down and other things I don’t know the meaning of. Of course my dad was sick and dying from cancer when she gave it to him. But I remember him in his compression stockings walking laps through the kitchen, living room and dining room, carrying that stick with him, with a smile on his face. Obviously it didn’t cure him, but maybe it made his struggle less. Maybe it gave him courage in the face of pain and fear. Maybe it gave him strength to fight for just the right amount of time before he knew his work here was done. At any rate, I look at that coyote face and ask my dad for my own kind of help, whatever kind I need the most. Hah, I don’t even know anymore. But it gives me hope anyway, having it here, having seen me through some very sick times and also seen me emerge through them as well. Not breaking. That’s about as much as I can hope for, for now.

OK, time to sleep for the seventh time today. I have many more happy things to write about, once I’m able to stay awake long enough to put them together and edit them properly. My mind of course has struggled too lately and been a bit scattered. It can hardly distinguish between dream life and reality anymore. Which makes sense considering how much time I spend on the other side of things. But I don’t think it will be much longer now. Hoping this coyote skull will bring some healing this way. Or at least the strength to smile through it, just like my dad did, who was up against far more than I am. Now that’s remaining unbroken. I’m so happy he showed me that was possible.

All the best to everyone, and I expect to be back on the up and up soon.

Health, Happiness, & Unbroken Things

Why Is It So Hard to Pee Into Those Urine Sample Cups?

Is it just me?

If it is, then I should feel pretty vulnerable and embarrassed after this. I’m sorry mom. I really do try and make you proud.

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It’s hard to say but I don’t think so. I do think requires more skill on behalf of the woman, I would think. Then again I wouldn’t know, I’ve never peed into one of those “specimen catchers” standing up. It seems like all you have to do is aim and shoot. Though I imagine splash-back could be a problem. Also I’ve heard dudes talking about the “split stream”, which would make producing a clean catch pretty tricky. But that happens to the lady folk too. So I’m a making a leap of faith in assuming I’m not the only one who has issues here. Right? Guys? Right guys? 

I’ve had to give so many urine samples via those small plastic lidded cups over the last ten years, you’d think I’d at least have a technique mastered by now. But there’s just so little prediction in the direction that things will go once the golden exit begins.

You know the order of operations. First you go a little to see what direction your body has decided for the sample to go that day. Cool, you have a good idea. Place the cup in position. Aaaand begin. Aaaaand what is happening. 

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Somethings gone wrong.

It starts to go awry when a renegade stream breaks off from the group for no reason at
all.
Whyyyy. I can’t yell at my pee mid stream and direct it on where to go! It doesn’t respond to verbal orders or worried yelling.  Why would half of this small waterfall decide to break apart from the its fluid crew and travel backwards? Return to the team you idiot!

 

Obviously, things don’t get better from there. The cup can’t catch the rebellious run off and the original stream simultaneously because they’re too far apart, so now I have to guess which one has a higher volume and catch that one. And because I’m indecisive, I start to get a little panicky, I can’t tell which is better. Now I’m going back and forth with the cup between streams because I’m worried the collection isn’t enough, and I’m right. I often miss more than I catch in the chaos. Great. Now there’s pee in places I’d rather there not be pee.  It’s just my hand don’t freak out. (I’m talking to myself now) I mean urine is sterile, so I hear. That was the whole point of those deep breaths I took before beginning the process. You can do this Mary, just pretend it’s a game at the carnival, you’re a competitive gal.

I liken the stress to that of being on a motor bike and panicking that you’re going too fast but in the frenzy you keep hitting the gas, gunning it, instead of the break. You increase in speed until you crash and your shoe flies off. That actually happened to my friend Cody and I once. My shoe really flew off!

Anyway I guess it’s just the stress of getting it right and knowing there’s a limited amount

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The Hell is she doing in there?

of material to work with that I end up internally yelling with my head down “WHAT. IS GOING ON DOWN THERE?! GET. IT. TOGETHER!” It’s like yelling at some kids I’m babysitting who I can hear are misbehaving in the basement. I hope I’m not accidentally
yelling that out loud in the stress of those 30 seconds. I can just see the nurses faces upon hearing the racket inside the bathroom, shaking their heads in resignation, Where did we go wrong with our children?

Now I have to place the cup on the counter, but why is the counter always wet? Is that someone else’s renegade pee? Impossible to know. Also, eeeew. So I awkwardly wipe down the counter, (still squatting on the toilet by the way), place the cup down, screw on the lid, make sure that’s wiped down and examine my sample. It’s like I want the nurses to be impressed with it. “Wow, did you check out Gelpi’s specimen cup? Not even a droplet on the outside!” I realize they’re wearing gloves and couldn’t care less about any of this.

Then you open that little stainless steel door to drop off your cup, and you see all the other specimens. Woah! I’m always surprised by the array of yellow colors that make up peoples urine. It’s like 50 shades of pee in there! I can only hope mine is the right shade of neon.

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This is clearly Ms Gelpi’s perfect clean catch. How DOES she do it!?

It feels like an unnecessarily stressful event that I’ve had to do so many times, I just can’t figure out why I’m not better at it. Is there some method I’m unaware of? I had to give a sample yesterday just like I did last week and the week before that and a month before that, for all kinds of fun reasons. And still, I entered that bathroom, wrote my name on the cup, took a few deep breaths, and once again the urinary chaos began.

At least this time I didn’t fall. Yes, that is a true and exceptionally unfortunate story. It happened in the E.R. and I’m pretty sure they gave me a horse tranquilizer or something close to it prior to calm down the excessive adrenaline. I was in SVT (Supra Ventricular Tacchacardia) and flopping around like a fish out of water. Then I was tranked and expected to give a sample without help! So yeah, I fell. Let that image settle in and make the rest of your day happy.

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Wait, where am I. 

Anyway, maybe I’ll develop a better method over the next few months. Or maybe giving urine samples will always just be one of those things we all have to do that are oddly more difficult than they should be, like hanging curtains. Don’t worry, because I know you might, I’ll let you know if there’s improvement. Stay golden yall! (I had to)

Health, Happiness, A Clean Catch

Day 5

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*my general editors note here would be that maybe writing through one of my more serious crashes in the last few years wasn’t the best idea because I imagine it can become a little daunting on the reader to read over and over again. Of course, that is the reality of living chronically ill, and it’s surviving the resilient day after day after month after month that is the most difficult part. But also this wan’t exactly intended for people to read and enjoy, although that would be a SUPERB secondary outcome. It was to clean house.

BUT,  if I’m going to document such tough times, I have to be very cognizant about not letting the work feel tortured, even if I do. Torture in general is not the most entertaining subject matter, I think we can all agree. The point is not to let the sickness win and be the teller of the story. It should be the lens but not the primary subject matter. The challenge is to express and respect the experience authentically, be honest when it feels like torture, but allow enough distance and space from the part of me that wants to try to make this personal (the ego) so that humor and optimism and hope can carry at least half the narrative, the ‘happenings’–or ‘non-happenings’ as it were.

I thought I remembered by day 5 things were beginning to improve, and I read here that my weakness had finally started to just barely let up, and yet it was still an incredibly difficult day, mentally. I was still in really rough physical shape and I remember well just staring out of those windows and feeling an absolute absence of willpower–to do anything. I felt an emptiness inside and a certainty that anything I chose to do made no difference whatsoever. Talk about fun times! But I do remember seeing the bright red of that type-writer, this project I told myself I’d start and finish, and in my 1% battery charge of life force, I made my way and just started to type. It felt like a long exhale.

I actually remember the moment I began to feel better, in the midst of writing this piece. When I wrote “It seemed like a better idea to write at the type writer than to continue staring out the window, wishing things were different,” I realized how huge my role was in keeping my brain and mind active in positive ways when my body wasn’t strong enough. It makes a difference where you look, what you’re looking at, and how long you let your thoughts take the wheel away from you. In that paragraph I knew writing was a big way  of living through something unpleasant and of changing how I felt about it, just by making a lot of small decisions that were opposite of what I felt like doing.

That role is so crucial, and like baby-sitting a two-year-old, you have to sometimes run around after your meandering mind, make it sit in time out, and remind it of true and happy and important things. Facts, not stories. That’s where you find gratitude and humility and grace and remember love and kindness and hopefulness. (All below the surface) You have to reach down far, and the willfulness to reach is for some reason so incredibly difficult it feels next to impossible. And yet when you do reach and feel something reach back, your entire outlook, even for an hour, can change massively. I think done enough times, we can remove a lot of the unnecessary pain we feel no matter what we’re going through..

For me, it’s sitting in time out and not letting toxic thoughts convince me of anything that isn’t true. Its not that I can’t acknowledge how extremely hard this situation is or allow the deep emotional parts of it to rise and let them out. In fact I have to do that. All parts of the spectrum need an outlet.  It’s not about making those thoughts forbidden. It’s about acknowledging them but also then to keep going. Not to stay glued to some idea about fairness or unfairness that eventually keeps you from trying, keeps you from remembering who you are–buried underneath all the hardship that can feel piled on top of you. Writing is magic for me in the miraculous way it reminds me of the truth when I can’t think of or remember it on my own. It will literally turn bitterness into gratitude in just a few sentences, and that’s why it’s important.

Well, I’ve veered off track again. I just felt like taking some notes that maybe I’ll refer back to in the future.

Dammit, I just remembered the Super Bowl is tomorrow and how as a Saints fan I’m boycotting it, but as a curious person I’d like to watch some of it and also observe what 15 million dollar commercials the ad people came up with. I imagine my mom will be dressed all in black and if we had an American flag on our porch, you can bet it would be hanging at half mast. Hah. Football.

Ok Mary well it’s been real. Yeah Mary I agree. Have a happy Saturday. Yeah cool you too. See you tomorrow. Same bat time, same blog place.

 

Day 3

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OK, there’s a lot of crap in this piece that needs to be re-written or scrapped. Taking on a writing project in the midst of a heavy crash may have been a bad idea in terms of writings to share because than crap like this emerges and I told myself I’d stick to the rules. Even reading it now I can see how convoluted my mind way, how easy it was to stray off topic. I’ve begun to improve since Sunday, particularly cognitively, and the writing really does emulate what’s going on during fog. I had to cross some out because it just meandered and was so clunky and unclean, it was very far from conveying my ideas properly at all. Anyway, as uncomfortable as I feel posting writing I don’t like and probably 2/3 of which I would change, or burn, this was partially the point of the project. So just trust and let go. Besides, there’s like 11 people reading this. I think we’ll all be OK.

Anyway, hopefully I’ve written a little better for day 4, or perhaps I’ll have more crap to share! Either way, it might be enjoyable. Just let go Mary. OK, I’m going. So go then. I’m gone. So go! I’m going! Just. Press. Publish. You Nitwit. Alright, see you tomorrow.

The NIH Response to the Petition/Package

Since not everyone receives emails from change.org, which is how the updates regarding the petition are delivered, and it’s the beginning of the year, I wanted to make the NIH response available here so everyone had a chance to see it. Get everyone up to date and on the same page. I can’t thank all of you enough for helping make this happen. I’ll post my and some advocates responses to the letter in the next post. So stay tuned.

The response from the NIH was interesting for a few reasons. Just for clarity’s sake, I’ll say it was not an official response–it was a personal letter emailed strictly to Matt. While they never mention the package and only briefly acknowledge the existence of the petition, I know that Collins receieved the whole kit and kaboodle. How? Because a receipt was sent to my email that the package was delivered and signed for by none other than the big MAN himself! Santa Clause! Or Santa Collins…you know what I mean.

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So, now we don’t have to wonder. Anyway, I’ll begin by posting the letter Matt wrote (rubber-banded to mine) that we included inside the box. Following it is the response from the NIH.

Matt’s Letter:

Dear Mr. Collins,

My name is Matt Tyler. Until just a few years ago, I had never heard of anything called Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. And that’s kind of what’s so crazy about the disease. It’s hidden from the majority of us. It wasn’t until I ran into an acquaintance from my younger years, someone who had sort of disappeared from my circle of friends when I was in my mid-twenties. I just assumed she had relocated, had become consumed with beginning a family or a career. You know, normal late-twenties life stuff. Turns out she was dealing with ME/CFS. She had faded into the background not because she had other things in the background to do, but because she was forced to recoil into a bed by a mysterious disease that most of us had never heard of.

I’ve grown very close to her recently and in turn have grown very close to the life that suffering from Myalgic Encephalomyelitis brings with it.  She’s not even on the most severe end of the spectrum, but it still baffles me how she’s able to get up every day (most days, some days just have to involve being in bed all day) and deal with the pain and exhaustion that she feels just because she’s awake. Because she made a sandwich and then walked to the couch.  Because she needed to bathe. And she never complains or whines about her circumstance. She has every right to, but instead she fights however she can. She does things like create the included petition. She exerts the very limited supply of energy she has to give a voice and some hope to the millions of people suffering with this debilitating disease. The millions of people who have been robbed of years of their lives.

You once lived a life where you searched for hidden genes responsible for these types of things. I remember reading once that you would put a sticker on your motorcycle helmet every time you discovered a gene responsible for a disease. I’m sure it was a proud moment applying the sticker representing Cystic Fibrosis. I know that’s not the life you live anymore. Now you get to direct and inspire young versions of yourself. Young scientists trying to make a change in the world. That’s why we need your help. Your influence. Your voice.

The reason for this petition is simple: Allocate more funds toward the research of Myalgic Encephalomyelitis. That’s what we are asking. That’s what the people behind the more than 50,000 signatures are requesting. But I’m sure you understand more so than most of us that by doing that, you are immediately impacting all those millions of people who have been pushed into shadows. If this increased funding happens, not only will the impact happen long term with better diagnostic tools and possible treatments, but you’ll give the people suffering an injection of hope. Hope that they can return to their jobs. Hope that the life they once had and enjoyed is not forever lost. Someone with as much prominence in the scientific world as you making a decision to increase research funding and speaking out about ME/CFS spreads the word about the disease. It might inspire some grad student somewhere to decide this is going to be something they want to attempt to tackle. Some blossoming scientist might decide they want to put a dent in or even end this terrible disease.

I understand that giving more funds to ME/CFS research likely means another diseases’ funding might be reduced. I don’t envy you having to make those decisions. But I can say this. I would imagine in the world where your career exists, the phrase “return on investment” is not foreign. I run a small family business and it’s something I have to consider almost daily. I’m sure it’s a much more difficult metric to calculate in the domain where you must apply it. But I’ll leave you with this: any additional money put towards ME/CFS research, especially if some sort of formal announcement or press release is attached, will yield an exponentially higher return on investment than most other diseases. Because outside of simply robbing people of their careers, health and happiness, ME/CFS robs people of hope. And a life without hope is no life at all.

You have the chance to not only bring about scientific change to help millions of people in need, but the chance to reinvigorate them with hope.

Thank you for your time,

Matt Tyler

P.S.  If you do decide to do what is being asked for in the petition, I will design, make and hand deliver a sticker representing ME/CFS for your motorcycle helmet in hopes that in the very near future you’ll be able to apply it.

***The NIH Response***

Dear Mr. Tyler:

Tell your friend Mary and the supporters of this petition and the me/cfs community to go find the fattest worms they can find, take a seat on a nearby stomp, and eat them at a slow, slow, pace. OK? Thank you and we’ll check back in with you in roughly 10 years from now, mkay? Happy Holidays gbyyyyyyyye!

KIDDING. I had to. OK, Here is their actual response.

Dear Mr. Tyler:

Thank you for your letter to National Institutes of Health (NIH) Director Dr. Francis S. Collins concerning myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).  We appreciate your kind words about his work.  Dr. Collins requested that I respond to you on his behalf.

I am sorry to learn that a friend of yours has ME/CFS.  Your description of her experiences underscores the devastating effects of this disease.  With your letter, you included a petition that asked the NIH to increase funding for ME/CFS research to $100 million.

We at the NIH understand the necessity of improving diagnostics and finding effective therapies for ME/CFS as quickly as possible.  We agree that there is a tremendous need for quality research in ME/CFS.  It may be helpful for you to know that the NIH system is open for any researchers to submit their best ideas for funding excellent science in ME/CFS.  The NIH grant system primarily funds work performed in individual laboratories or clinics by teams of scientists working at academic, medical, and other biomedical research institutions, including industry.  Individual investigators interested in pursuing ME/CFS research can submit detailed proposals through their institutions to answer a broad range of research questions.  Proposals can be submitted three times per year.  Proposed projects undergo a rigorous peer review process at the NIH and are then considered for funding.  Investigators receive critiques of their proposals and have the option to revise them and resubmit.

The Trans-NIH ME/CFS Working Group recognizes the acute need to cultivate more research and investigators to work on ME/CFS.  In pursuit of this goal, NIH plans to bring scientists together with patients and ME/CFS advocacy groups in April 2019 to discuss the opportunities in ME/CFS research.  We also plan a meeting intended to engage early-stage career scientists in ME/CFS.  More information about these meetings is available at https://www.nih.gov/mecfs/events

In addition, the NIH is conducting a study on ME/CFS at the NIH Clinical Center in Bethesda, Maryland.  This study, led by renowned neuroimmunologist Dr. Avindra Nath, is exploring the clinical and biological characteristics of ME/CFS following a probable infection to improve understanding of the disease’s cause and progression.  Recruitment of healthy volunteers and people with ME/CFS is underway.  The study is currently recruiting patients who have had ME/CFS for 5 years or fewer.  You can read about the study at this website:  https://mecfs.ctss.nih.gov/index.html  The following site provides a contact email address and the telephone number for the NIH’s Office of Patient Recruitment:  https://mecfs.ctss.nih.gov/contact.html

Please be aware that the NIH generally does not stipulate the amount of funds for specific diseases.  There have been times when Congress provided funds to the NIH for specific purposes, but those instances have been rare—HIV, cancer, Alzheimer’s disease, and more recently, the crisis resulting from opioid overuse disorder.  In special cases there are NIH-driven exceptions, for example, when one or more NIH Institutes set aside funds by issuing a Request for Applications (RFA).  The RFAs for the ME/CFS Collaborative Research Centers (CRCs) and Data Management and Coordinating Center (DMCC) are examples.

As a result of the RFAs, in September 2017, the NIH awarded four grants to support the creation of a ME/CFS research consortium composed of three CRCs and a DMCC.  These centers will help to build a strong foundation for expanding research on ME/CFS.  The CRCs will each conduct independent research but will also collaborate on several projects, forming a network to help advance knowledge on ME/CFS.  The data will be managed by the DMCC and will be shared among researchers within the CRCs and more broadly with the research community.  You can read about the awards at https://www.nih.gov/news-events/news-releases/nih-announces-centers-myalgic-encephalomyelitis-chronic-fatigue-syndrome-research  We hope that the new centers and other NIH efforts will attract researchers from other areas to propose research on ME/CFS and increase the number of young investigators entering the field.

The awards are just one result of the NIH’s efforts to advance research on ME/CFS with the goals of identifying its cause and finding biomarkers to study disease progression and monitor response to treatment.  You can read about these plans in the following NIH news article from October 2015:  https://www.nih.gov/news-events/news-releases/nih-takes-action-bolster-research-myalgic-encephalomyelitis/chronic-fatigue-syndrome  As part of these actions, the NIH has renewed the focus and efforts of the Trans-NIH ME/CFS Working Group, which is carefully exploring the gaps in our knowledge and identifying the opportunities for research on ME/CFS.  The Working Group will continue to discuss next steps to attract more researchers to this field and expand research on this disease.  You may wish to visit the Trans-NIH ME/CFS Working Group website at www.nih.gov/mecfs

The NIH continues to post research funding opportunities related to ME/CFS in the “Funding” section of that site.  In addition, the information at the “Resources” section of the site may be helpful.  If you would like to receive periodic updates about NIH activities related to ME/CFS via email, please go to that website and click on the link to “Join our listserv” at the bottom of the left sidebar.  The NIH hosts regular telebriefings with the ME/CFS community to provide updates on our activities and answer questions.  Announcements about upcoming telebriefings are emailed via the listserv.

In addition, the National Institute of Neurological Disorders and Stroke, which is the lead Institute for the Trans-NIH ME/CFS Working Group along with the National Institute of Allergy and Infectious Diseases, has recently formed a working group of its advisory council to provide scientific guidance on how best to advance ME/CFS research at NIH.  The working group includes basic scientists, clinicians, Federal partners, advocates, and people with ME/CFS.

We hope that the steps the NIH has taken over the past 2 years and the future progress of the Centers will grow into a major scientific effort in ME/CFS research funded by grants submitted to NIH.  We look forward to working with the community to gain further insights into ME/CFS that will lead to the development of effective treatments and improve the quality of life for people coping with this disease.

Sincerely,

Walter J. Koroshetz, M.D.

Chair, Trans-NIH ME/CFS Research Working Group

*****

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“This is great! We got a response from the NIH!”                                                                        “Yeah, this is a big deal!”                                                                                                                                 “This is bullshit.”

Don’t worry, this may not be exactly what I/We might’ve hoped for, but this provides us good information straight from the horses mouth. There is a great deal of value in seeing how the NIH looks at this issue and what they consider “enough” in terms of how they’re approaching the situation around MECFS. Since some of their advice involved going to congress, this letter can help convey the exact issues we’re talking about when we say there’s a lack of urgency and an overall tone-deaf, dismissiveness when it comes to this disease. Either way, I’m very happy and grateful we received this response, and trust me when I say it will be put to good use. Stay tuned.

Health, Happiness, More to Come!

Meaning in the Mud

Family, Friends, Strangers, Enemies, Grandmas, and the future class of 2019: hi. I’m not dead. Figured I should get that out of the way.

It’s been so long. I’ve missed you. I’ve missed writing here. I have an underlying angst that eats at me when I know zero words are emitting from the blog of roughly 12 readers a day. Still, I don’t like it. Mostly because I still so often spend hours a day writing, , but reading it back over it the next day, the coherency is lacking and it’s clear my spaghetti brain is hindering a collective blog, so I don’t post it. The next day I write, I try to edit, and the process just repeats itself. All of it resulting in DEAD AIR! Boooo.

Anyway, as you might’ve guessed, I’m still crashed. Or on very shaky ground anyway, and I’m not really sure why. Weakness comes and goes, my restless legs/crawly skin is constantly flaring, but it’s this damn pain in my head that is consuming, constant, and just plain exhaustive. More than weakness or any other symptom, it’s a resilient pain like this that keeps me from writing long enough to edit and post, which makes me hate it all the more.

This head/face pain started to get to me psychologically a few months ago. I’d find myself looking forward to sleep given the escape it offered from the pain. That’s not a grrrreat way to live, but it is A way to live, so there’s that. It’s just the reality right now, but I do genuinely believe we’ll find the answer to this. Or we’ll at least find a remedy for the pain. Even if it is some South American JuJu bean sprout mixed with Norwegian honey bee oil and antler-fuzz brewed into a tea. I’d drink that crap-tasting tea 10 times a day. The point is, I know it won’t feel like this forever, so I’m just hanging on and HOPING THAT A FIX COMES ALONG PRETTY QUICKLY. Sorry I thought if I shout-typed it that God or someone might hear me better.

For now there is pain medicine, dousing my face in peppermint oil, and putting a frozen ice pack on top. Then I lay there, like a useless slug waiting to get stepped on. I’m destined for greatness!

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#Useless Slugs Unite

On Monday I had my face injected with steroids and lidocaine to see if that would do anything. I do think it helped the back of my head, but so far not a lot of luck on the face or top of the head. Although the injections did give me temporary human horns, appropriately in time for Halloween. This picture is actually after they’d gone down a bit.

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She-devils Unite!

Walking back into the waiting room I told the secretaries not to judge my she-devil horns and they burst out laughing. I guess in a place that is usually so serious and nearly tense like the sign-out counter at a doctor’s office, something about that interaction made me feel lighter. 

Other than that, life remains a constant search for balance in-between hope and despair. Obviously, it feels much better to be hopeful. But damn if despair doesn’t grab you by the feet like an anchor and drag you under. It can be so easy to fall down that hole, and much harder to make your way out.

I know I write about it a lot, but it’s because chronic illness is such a marathon. Staying optimistic, believing your life can be good, finding meaning in the mud, laughing when it’s funny even though it’d be just as easy to cry, are all your job on top of the physical battle. It’s so hard not knowing where the finish line is or what it even might look like once you get there. If you’re like me, you’re always trying to calculate how your life might go if you’re sick 2 more years, 5 more years, 20 more years. It’s infinite…

It’s an impossible hypothetical that will only leave you confused and anxiety-ridden. Marc Nepo said confusion is the result of trying to make sense of things too soon, and I am constantly trying to do that. Make things fit before they’re fully formed. It’s hard to trust that wherever you are is where you’re supposed to be, and yet in hindsight, it seems that somehow it always turns out that’s the case, even when things have resulted in pain or anguish.

Nepo also said the repeated hindrance to joy in his life over and over has been hesitation. So I’m continually trying to just live the moment I’m in–1 because honestly it’s all I can handle. But 2 because when I start thinking too far into the future or assuming I could possibly change things that have happened in the past is when I actually suffer. When I interrupt my thinking and say Mary, all you have to do is make a cup of tea right now, I’m brought back to the only thing that matters and where I have any power, which is now.

It’s been an interesting experiment, this whole chronically sick life thing that I think I may have signed up for ambitiously before I was born because I’m stupid and don’t think things through. Still, it’s interesting, because it’s a perpetual challenge, especially creatively and in thinking. Like this idea–that you can be in a lot of pain, but also laugh hysterically in your living room, alone, at something you’ve seen twice before. This week I was watching jeopardy casually with my parents and I filled up with an overwhelming sense of gratitude, and despite my raging head and restless, squirming legs, such a strong positive feeling made it’s way to the surface anyway.

The same happened when Matt brought me lunch out of nowhere on Tuesday, because he happened to be eating at a place nearby. I had a migraine, but when I woke up I had a meal to eat and didn’t have to think about it or muster the strength to make one. Just deciding on food can be totally exhausting. My gratitude was overflowing. And when Monty was afraid during the rainstorm and I laid with him on the floor, because I could, petting his velvety ears as the poor guy shook with fear at the rumbles of thunder, the love I felt for him welled up inside me, to where I could feel an actual warmth in my chest. I think how lucky I am to have such incredible people (and dogs) in my life and it makes the physical pain feel less powerful.

There are many, small moments like that, where gratitude and humility and laughing out loud at something stupid all pop up and show their beauty despite whatever physical pain I’m feeling. The dichotomy of those two things and experiencing them at once is an intriguing piece of the puzzle that’s teaching me how to be a human being. I think I’m getting pretty good! But I’ll never be as good as Monty, the happiest, most grateful, and present person I know.

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Actually Destined for Greatness

Case in point, he was not at all upset when his ball became stuck under a huge flat rock that was filled with muddy rain water underneath. He spent 30 minutes digging and splashing and maneuvering for that ball, and a half hour later he came trotting to the porch, a newly chocolate lab, victorious with said ball that was almost a goner. Seeing how happy, proud, and brown he was made me laugh so hard, I couldn’t help but feel happy to be alive, despite feeling like death. Witnessing the fulfilled, unflinching life that Monty lives, it’s fair to say that dog does not hesitate or miss lifes’ moments. His joy is infectious, and I will always be grateful he’s been by my side for as long as he has.

My head is starting to fill with pressure and expand like a balloon, or so it feels, so it’s time to slug it up for a while. Then maybe I’ll enjoy Wheel of Fortune with my parents. See? I have to laugh at it. Was this the life I envisioned at age 34? Would I have chosen this? Maybe not. And yet I am learning, learning, how to find a sense of fulfillment and wander in the unchosen existence that is uniquely my own all the time. Each time I inch toward trusting this experience, the more momentous life becomes, the brighter the mundane moments explode into something special, and the more my soul awakens at how incredible it is to be here at all.

Health, Happiness, Muddy Waters

Petition On A Mission

I realize not everyone receives the updates sent out on the status of the petition from change.org, so this is a basic copy and paste of that update with a few additions so we’re all in the know. It shares  the latest action we took and where things stand as of today.

I’ve been effectively in and out of a crash, and trying to manage pain that seems to have surpassed manageability. This has made it difficult to be the sort of advocate that executes all my ideas, completes so many goals, and more simply, publishes all the writing I do but bury in miscellaneous places.  I will be better at posting here like I used to do. Apologies for going AWOL a while. I suppose that’s another matter altogether. ANYway…

***

The box was too big for Matt’s car, so we assumed my moms car would suffice: a larger mid-size sedan. Still the corners jammed against the dashboard and window panels. The trunk? No, the trunk would not contain it either. So finally we had to put it in the bed of my step-dads old Toyota truck. I say ‘we’ but who am I kidding? Matt did all the literal heavy lifting. I actually took a photo by accident that perfectly depicts this point.

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On the way to Kinko’s, storm clouds of a distinctly Southern nature darkened and began thickening across half of the sky. A small part of me worried it’d start to rain and the box would get wet. But a bigger part of me felt more alive and hopeful than I’d felt in a while. Finally this thing was happening. But let me backtrack.

On Friday morning, (Sept 14th), I sat at my type writer fuzzy-headed after a crappy night of painsomnia and two hours sleep. But I was determined to finish this letter and write the words I felt Francis Collins would ultimately read. Something about that day, despite my feeling like a rotting banana, told me this long-ago set goal needed to happen without further delay. Time for that damn ginormous box that’s turned into a veritable piece of my living room furniture to finally leave. Time to begin the vital journey to its’ intended recipient in Bethesda, Maryland. (The NIH) (Francis Collins) (You get it)

This all took much longer than anticipated– to finish this part of the project. We printed the rest of the accumulated signatures since hitting 50,000. (!)  Printed the hundreds of pages of public comments left on the feedback page. Painstakingly blacked out all personal information on the 350+ prescription bottles I’d be using in lieu of packing peanuts. We’d completed everything but the personal letter to Collins I wanted to go on top of everything, Should he see or look through none of the rest of it, my hope was he would at least read a letter. A last attempt, if you will.

It was so hard to know which route to take in writing to him–what angle would really reach the guy. So many ideas had swirled through my head for weeks every time I laid down and stared at the ceiling, a hundred different drafts sat waiting inside me. I had to trust that the right words would emerge that day.  So I sat at my desk and banged at the keys of my typewriter. Intuition told me it might speak to him in a more immediate way for some reason. By the end it looked like a telegram to the president in the 40’s on the status of the war. (Not so far off, hardy har.)

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My healthy ally, close friend, and now fellow ME/CFS advocate Matt, told me a week earlier he’d also written a letter. We could include it if I wanted to. When I read it and saw how incredible it was–saw the effectiveness and resonance of words from someone watching this disease from the outside, I knew it needed to be included too.

Anyway, it was time to finish this last part of the job. When it was done, I began to pack the last of everything.

***

The box was filled with two tall stacks of paper on the bottom, comprising more than 2,300 pages of printed names. That’s what 51,000 signatures of support looks like. Cushioning and surrounding those bricks of names were the hundreds of empty pill bottles. (We don’t have recycling in my parish so I mean, why not?)  On top of the orange plastic ocean sat a brown box, just about the size of a Life cereal box. Inside were nearly 500 pages of your words–everyone that signed who had something to say. Voices of support for change, personal stories, loved ones stories, people sick for decades still holding out hope, and people sick at the end of their rope.

I was surprised how poignant and succinct so many of these messages were. These were the voices our government needed to see and hear (an ongoing need), so that box of papers went on top. Then of course, our letters.

The point is, we did it. We all did it. We came together and hit more than 50,000 signatures. People spoke up. The pill bottles piled up. Letters written, stories shared. Everything made it’s way into that box. And on Friday the whole kit and caboodle was taped up, sitting in the bed of a truck to Kinko’s, about to begin it’s travels to NIH. I kept looking out of the back window at it, as if it were a dog we were bringing to a farm for a better suited family to adopt.

At Kinko’s, a mostly disinterested, monotoned man asked us the typical questions and entered my uncertain answers into the computer. I was told to double check the info before hitting “accept.” National Institute of Health, Office of the Director. It felt dreamlike. I forget this man actually exists. Accept. And just like that, all that work, all our voices–in a box and carried with a grunt over to “outgoing.” Not without a picture first, of course.

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This mission so far has been possible because of the digital world we live in. Undoubtedly, none of it could be achieved without the accessibility and capability to assemble provided by the Internet and social media. For that, I am so grateful to live in the age we do.

But by putting this work onto actual paper made this crisis and our words come to life. I am one of the “millions missing”, and yet sometimes I have to remind myself my life isn’t normal. We can just do so much better, and the simple act of printing out each of your names made this reality, this need for change take on a visceral urgency in a way that names and numbers on a glowing screen can’t always do.

This was one of my major intentions in sending a box with everything printed. I wanted something people at the NIH could feel the literal weight of, could touch and hold. Something concrete they could carry with their hands. They’d be able to see what thousands of names demanding change looked like, and read our actual stories on paper. Holding our voices and stories and pleas for help in his hands, maybe Collins and those at the NIH might realize our fate is in their hands, too. They have the power to fix it. This is so much more than just a box of names.

My other point in all of this was to disrupt in a way that was not easily ignored. I wanted to get our truth and demands and personal messages delivered in an unconventional way–one that for instance, couldn’t be sent to spam. So thank you for providing me with material to disrupt with. A 24 x 24 box weighing in at just under 50 lbs should at least spark some curiosity on their end. So long as someone opens that box, I think something important is going to transpire.

I want you all to know, I realize this mission is far from over. The petition will stay open and running for as long possible. Sending this obnoxiously sized box with the things it contained was just one attempt at reaching the NIH. It’s certainly not the last, and I realize it may not work. But to really try always involves taking a risk. If this doesn’t work as intended, I can’t see it as a failure. It will only make me try harder.

So. 48.8 pounds. $100. And a lot of hope and prayers this box reaches the target. Thank you to my healthy ally Matt, for doing so much heavy lifting in all this. And thank YOU, if you’re still reading. For signing, sharing, speaking up, and helping demand change. It’s because of you we have something concrete to disrupt with. My gratitude is immense.

Out of everything, we cannot underestimate the power of our voices in this fight, and I intend for this petition to stay open as one channel where we can come together and say what needs saying. Thank you all who have spoken up and continue to. Thank you for making all of this possible.

Health, Happiness, O’ Little Town Of Bethesda

The Reward and the Wake of ME/CFS Advocacy

Two weeks ago, my family came together for an advocacy event coordinated by incredible friends and family in our old hometown, Grand Junction Colorado. The function was a success and took a lot of hard work by people who cared and put in major time and heart behind the scenes. My sisters friends Avery and Jordana, Jordana’s dad Harry (awesome dad name) and my Uncle Mike who was under the impression that months earlier he’d retired (Nope!) Besides them many more came together, helped fund, offered services, and sponsored the event in order to make it happen. As for me, I sort of just had to show up.

Beyond friends and family that put in the effort to sort out logistics doing an incredible job, the article in our local paper impressed me majorly–not just with it’s advertising of the event, but by publishing a full page color spread, covering our families stories respectively and including a digestible narrative about the reality of MECFS and giving it a wider context. I felt happy and surprised to read this article right out of my humble hometown, when such a surprising amount of press from noteworthy and “big league” media can completely miss the mark.

The dense, nearly unbelievable history mixed with present political roadblocks and numerous scandals all under the M.E. umbrella make the disease particularly hard to write about and convey in one article without writing a novel. Not to mention the personal, human interest side of this, and the toll it takes on patients and families. Very few articles contain both, and many more are simply clumsy, neglecting essential facts or even accurate data. Due to our general lacking presence in the media, I know someone might think “Well any press is good press, right?” But I struggle with that adage. When you’re fighting a thirty year old false narrative, not all press is good. In fact it can easily be bad by perpetuating fallacies, inaccuracies or misconstrued data, and even celebrate studies (like the PACE Trial) or treatments which have done the MECFS community incalculable harm.

So I guess, no, not all of it’s good. Too often I’m excited to see press about MECFS only to be disappointed beginning just the title, which will call the disease “chronic fatigue” or in the first line, inaccurately label the number one symptom as tiredness. *facepalm* But I digress, I didn’t mean for this to get into the media missing the mark, or the missing media in general, because today is about advocacy. And when people with this disease, their caregivers and loved ones, researchers and doctors are out there fighting for it, none of them will get it wrong. All of them know the numbers, the history, the truth, and the unfortunate personal toll.

The event in Colorado was a success. And maybe I’m a romantic and would call it that if even 3 people showed up, because that’d be 3 more people who were aware of something that is so rarely seen, heard, talked about, or understood. But many more showed up, family and friends we hadn’t seen in decades, strangers too, all to learn about a disease on a Sunday night, when it would be so so so easy to stay home and just forget it. It’s hard to express the humility and gratitude you feel seeing people show up, tell you they’re thinking or praying for you or your family, or even a stranger offering his hope and encouragement for the future. It all meant a lot, really. So THANK YOU again and again.

After the screening of Unrest, the 3 of us (my mom sister and I) spoke and were followed by Linda Tenanbaum, the CEO of the Open Medicine Foundation and human firecracker, who infused hope back into the audience, who were probably mostly thinking Dang, this is a shitty situation. Shituation?  She closed out the night before it was on to the reception. The firecracker (Linda) is an amazing speaker and doer, and having her attend the event only amped it up. Getting filled in on the OMF’s work and most up to date findings was a truly optimistic breath of fresh air.

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The OMF is at the forefront of research and work purely off donations, as in every cent goes into the science. All participants–brilliant researchers, doctors, scientists and logistical coordinators work on their own dime. Why? Some of them have a child or loved one with this disease, others just a determination to find answers to something with so few. Due to the explicit lack of urgency in the government when it came to MECFS interest, when submitted applications for funding biomedical research were repeatedly turned down by the NIH, these guys got together and decided it was time to do the work themselves. And thanks to the generous donations of so many people, they’ve been able to achieve and find incredible things. There is still a lot to do and this kind of science will require a lot of GREEN. But hey, maybe the #MillionsMissing protestors out there today in the streets will help change studying a disease with public charity to adequate funding provided by the Agency whose job it is to fund.

When we attended another event much like this one in California in October, it took me roughly 30 days to recover. I know because I videotaped myself everyday for a month to track how each day went after we returned. It’s a long trip and these events, while incredible and worthwhile, take a toll. The socializing alone is just like physical exertion, and the event in GJ lasted roughly 6 hours. While I’ve recently undergone an upswing in my health, I watched my mom that night—speaking and catching up with many old friends. Sitting as much as possible, not having even one glass of wine or “playing with fire” by any stretch of the imagination. She played it safe and did what she could to pace herself. You’d never guess anything might be wrong by looking at a photo from that night.

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Yours truly, My Sister Amelie, Linda Tenanbaum, Mama Gelpi, and my Aunt Amy. You probably know her.

Yet at 6 AM the next morning, I woke up on the couch just in time to see her collapsing, my stepdad with his arms outstretched underneath hers, catching her as she slowly went down, muscles twitching and trying not to pass out. She’d woken with a crushing migraine and often if she doesn’t take her medicine in time, some epic vomiting is soon to follow. She’d taken the meds but sometimes the migraine wins and all you can do is endure it until it’s had its way with you. She’d run to the first bathroom feeling her mouth start to water and knowing what was to follow, but my brother had just moments earlier gone in to shower before his early fight home. (Way to go NICK)

So she was on a quick race to the bathroom on the other side of the house, but midway through started to black out, and was luckily caught by my stepdad from behind while her muscles seem to go limp and the room blurred in and out. I can’t remember what was said but I knew she was going to spew quickly and ran as fast as I could for a bowl. I made it back just in time, with a casserole dish, which isn’t the best of bowls to puke in if we’re getting technical, but hey, better than the carpet.

After a nice little vomit session on the floor, we both pulled her up to the chair where we put ice on her neck and wrapped her feet in heat packs to try to get the blood to flow downward. She sat with her eyes closed, as though she were concentrating hard on something. But when you’ve experienced that kind of pain, you know just what it looks like, and that was it. She waited and Marc sat nearby for anything she might need. After an hour she was finally able to walk back to the bed and eventually get back to sleep. So, that was her morning.

And from what? From doing what healthy people do all the time. Watching a movie, catching up with friends, eating, hanging out. This is what put her over her envelope. Watching her I just kept thinking about the invisibility of it all. That no one would guess the woman they were with last night was in the extremely painful and scary position she was in now. But this is the story MECFS and those who suffer with it live it all the time. You see us when we’re well enough to be seen. Otherwise most of the suffering goes on behind closed doors, and no one presumes otherwise.

Today is #MECFS Awareness Day, and thousands of people around the world are taking part in the #MillionsMissing protest thanks to MEAction and many more. I wish I were one of them but I just couldn’t make it happen. So I made my sign with shoes attached on behalf of the three of us in the family to represent. It was only a tweet, but it was the best I could do.

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I hope anyone reading this who participated in the #MillionsMissing event knows the immense gratitude and unity from millions of us who couldn’t physically be there. This kind of advocacy isn’t easy, particularly on those who have the disease. They will all pay for it in terms of their health in big and small ways. And yet it’s what must be done in order to make the invisible seen, give the silenced a voice, and the truth a solid platform on which to land. My gratitude runs so deep to all those who organized to make THIS happen, and you know as well as I do, it doesn’t end here. We’ll fight even if we’re left beat up until things change the way they’ve needed to for decades. Hang tough, all of you. The Gelpi’s are with you in spirit. Thank you for your bravery, for caring, and for risking your own health so that we might all have a chance at actual health in the future. Thank you, in every language ;)

Health, Happiness, In Solidarity–Happy May 12th

Restlessness, Unrest, Doin Your Best, Zombies

For nearly  a month now, I’ve been writing a blog that would normally take me a few 3-4 hours to write and a few days to edit, if I were in “regular” enough health and other things were ordinary. I catch myself in a strange predicament, so I’ve abandoned that last post, which may have been THE BEST THING YOU EVER READ because I can’t damn well get more than a paragraph written on a good day, and the editing has become arduous for numerous reasons outside the one I’m about to describe, but to the point where writing, my one constant among chaos has taken a further hit. And since I’ve learned, for me, writing a simple status of things in my own life is easier than trying to put some thesis about technology together (one day) I’ll just bring you up to speed, because I’m not sure how long it will be like this. 

If you read in my past blog, you saw I’ve been fighting some switcht that seemed to turn on a charged degree of restless body syndrome and skin crawling, which have been part of my symptoms for years. With a switch of pain medicine that didn’t seem to improve anything and cause the hugely uncomfortable side effect of skin crawling and an insatiable necessity to move my limbs ,Unfortunately, when we stopped the medicine and returned to the regular regimen, for some reason, the RLS (or restless body syndrome + skin crawling) did not, which turned up a conundrum. 

We’ve yet been unable to find out what “fliped the switch” that made these symptoms turn on with the cherry on top of skin crawling, and why stopping the med that seemingly caused it to start wouldn’t naturally cause it to turn off. If anything the symptom has stayed the same and many, many restless days and nights become worse, and well, hellish. Waking up to squirming legs and little charges running through your body with your skin crawling on top, Is Foldiers in your cup! Kidding, its awful. I think I’d prefer pain. And since the pain has continued, now I get both, yeah! But if i had to pick between the two, I’d choose pain. It’s discomfort is different from that of squirming limbs, electrical bolts and your skin feeling like the audio equivalent of nails on a chalkboard, if that makes any sense. Besides all that, for whatever reason, the medicine I’ve been taking for nearly a decade that has controlled the symptoms 90% of the time, seemed to just suddenly stop being effective. It’s as if this clinically same symptom is originating or set off by something else in the body, and that has rendered my old meds useless. 

Where I am lucky, is that we found a medication that has been effective in controlling these symptoms, which truly, at times, feel more tortuous than pain. Where I’m a little unfortunate is that the medicine which calms down the lightning/snow/hail storm going on inside me, is the same medicine I’ve been taking for sleep for the last 2.5 years. At night it has done me wonders, since for years, even with the help of a sleep aid, I rarely made it through a full night a of sleep, saw a lot of sunrises, and often had tangible nightmares and at times became trapped in night terrors. (NO fun) Luckily this RX has not only worked best for my quality of sleep out of all the meds I’ve tried in the last decade, but it also seemed to reduce my nightmares, or at least made me sleep so well, I don’t remember them, which is, you know, fine by me. The obvious problem is that when you’re taking a pill so incredibly effective at helping you sleep, but you’re now taking it at 10 AM…you’re going to run into some issues. Like, um, what’s that word? Functioning, that’s right, you’re going to have problems functioning in daylinght. But without the meds, life is even less functional with misery stirred in. I wish I could say I were stronger and I could do it without the meds, but believe me, when you feel like you’re being tickled from the inside of your skin and your legs wanna kick and squirm and flex outta control when you just want to sit or lay and some strange shock or charge is making its way from head to toe frequently, it’s just not doable. You’re fighting the whole day. 

So, I went from misery and fighting, to z o m b I f i e d and tired and unbalanced (pysically) because that’s some of the med’s effects, which I”ll add, are HUGELY more tolerable than life without them. But, taking a sleep med during daylight, as I’ve explained, is draining me. I move slower than before. My cognitive ability feels like it’s being run by a fat hamster with heart disease. I can feel the effects that I know are from the meds, but it takes just the thought of one morning in January to make the “pick your poison” choice easy.

At a bitterly coincidental time, I was told to ween off that pill by my doctor because the FDA had been coming down hard on physisicians and who they prescribe to and how many doctors are prescribing to one patient could compromise their license. Sweet. I’d have to wait to find another doctor to prescribe it before I could refill it (I’ll write more when I’m not so z o m b i f i e d)  I found myself stuck between a few pills left and a hard place. The only thing relieving me from the misery was this med, but because of new regulations, only certain doctors were allowed or were choosing to prescribe it out of caution. I was prescribed some other conventional prescriptions to control RLS (Miripex, Bacloven and others) which did nothing, and my Lyrica and then Gabapentin had for whatever reason ceased to worked. Now I was stuck. 

I tried to talk myself into the belief that slowly weening off the Central Nervous Depressant and changing to the Bacloven that I could rid myself of this new, annoying, persisting symptom if I just believed hard enough the new meds would. But by the time I had taken the last pill and it was all up to the bacloven, I went 1.5 days and did what I guess we could call, ” possibly acceptable” but not at all “controlled” on the symtome scale. The morning I woke when I knew the last of the weening med had left my body, I was in hell. Really. I thought if I couldn’t get rid of this feeling, which was the truly inescapable task of needing to crawl out of your skin and also throwing all your limps off, I could see how and why people ended it. I know, that sounds extremely dark, because it is. But when you’re in that much extreme discomfort, you finally see why people could have it in them to do something that seems so far away and impossible in your own world. I wasn’t in hell, I had help and luckily one doctor to prescribe a partial dose until my appointment with the neurologist. Saved. 

But that morning for those hours where I tried everything I could think of and could not find relief, I thought of the many who came before me and those now who experience similar symptoms to a much higher degree and do not have the safety net of their health systems or family to fight for them and find them relief of their pain or quell their discomfort. This letter from a past advocate, one I never knew until I read her letter, who experienced unspeakable greater pain and hell than I did, and lacked the help of her countries support of MECFS more or maybe as much as the US had me thinking how in fact fortunate I was. At the least, I had a family that would step in and demand or find a solution I wouldn’ve have been capable of myself.

Another thing stuck with me. When leaving one of my 14,000 doctors, one who is actually very good and informed particularly in the filed of dysnautonomia (a huge aspect of ME/CFS for most) he said something. “You need to be getting as ltitle medicine as possible from as few doctors as possible, otherwise, you and I will be flagged.” I felt such anger on that ride home. This is where so many MECFS patients are stuck. It’s suspicious of us to have too many doctors all prescribing different meds, and yet, there’s no one doctor for us to go….This disease multi-systemic, and most patients, if they can make it there, have at least 5 different doctors monitoring different parts of their malfucntionng bodies. How on earth would we break this puzzle without research and education to show these medical entities the truth about a disease it simply does not undestand, and who some are plainwright just choosing not to look at.

I always try to take as little of the meds as I can because I know they will wipe me, which would make a lot of people, then find a way to withstand it or another solution. We’ve tried magnesium, checked iron levels, yes I have lyme disease, I take multiple supplements and I’m pretty sure I can’t The Shape of Water-it and just live in a bathtub for eternity, so for the time, this is my limited option to escape the suffering of this strange, insidious symptom that we just can’t figure out. Last month I saw Dr. Klimas, (my hero!) who is running a whole scope of tests, and all our fingers are crossed that we may find answers.  Not everyday is spent zombified, but my mom recently told me she was worried because every time she came over I sounded like a zombie and not myself and I said “maybe that’s just cause you come over at zombie hour” and she said that couldn’t be ruled out. But we both knew.

So, I try to get rid of the guilt that there is so much more I could be doing but that I am held back by from the very medicine that makes life bearable, but that can also make it very a slow moving, zombie-esque and unproductive experience. We can only do what we can do. When you’re already fighting “fatigue” (a really shitty word to describe a symptom of a really shittily named “chronic fatigue syndrome”, hmmm) a med like this is like 4,000 cherries on top. I definitely believe that either my body will very slowly adjust from whatever through it out of whack in October, or that I actually will be able to ween from these meds and get back to the thing I love more often—writing, advocating, and creating. 

And by the way, check this out! If you live in Colorado, please come to this advocacy event; it’ll be a good time with a good cause. The Gelpi’s will be there, Grandma Bell (you’ll know soon enough) and lots of others. Not Monty, sorry to disappoint 90% of readers :(

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Read more here about the event. And read more HERE for the write-up on our stories in The Daily Sentinel. Thank you Anne Wright for the article and for everyone who has helped make this event possible, which has been many, but especially Jordanna, (her dad) and my Uncle Mike who thought he was retired. Haha, sucker! Love ya.

Health, Happiness, Keep On Zombie-ing On