Sick, Snow, Sounds, Spring

Oh, and two new favorite songs. At the bottom ——>>>>

This morning I was lucky to wake up to one of my favorite scenes: a thin blanket of white glistening atop every surface as far as I could see. Smoky, colorless pearls of clouds covered the sky, simulating life within a snow globe. No one had shaken it yet. A pristine world shimmered untouched, au naturale. The flakes were still falling, and as the morning went on they would oscillate from quarter-sized to barely visible. I love snow so much. And miss it! We barely received any this year, so this felt like a nice treat, despite it hardly reaching an inch. It’d be gone by late afternoon, but still it carried with it the sentiment of an anonymous gift.

I drank my coffee and watched as River hippity hopped around on this fluffy new texture, wholly excited simply by the feeling of something new under her feet. I imagine most dogs are this way, and the ones who aren’t are usually cats. Most people around here would say “It’s about time!” as it’s been an incredibly dry and mild winter Our first *real* snow arriving February 20th!? Everything in due time, I suppose. Else we are slowly succumbing to the unnatural phenomenon of everything warming until none of this is habitable anymore. By that time maybe, Mars will step in. If not, we self destruct, which Tolle describes as “not really a problem at all.” We’re all going to go, one way or another.

I am weaker than I’d like to be—which is not weak at all, of course. Even though I had inched my way to improvement over the last week, for some reason I woke up on Tuesday to the physical news that my muscles had turned to lead over night. Life is full of such creative surprises! My upper body and arms in particular strain to do very basic things, like brush my teeth—and that’s a great way to feel even more pathetic than you look. But I know the drill: no matter how many tasks remain written, undone, on the list that I’d like to start and even, gasp, finish in the near future, will all just have to wait. And I’ll just have to wait until my strength returns, which seems to happen inevitably in time, for no good reason at all— Just the same as how it arrived.

The kind part of laundry, dishes, the spice cabinet I’ve really been wanting to organize, is that they’re all very patient, so lucky me! In reality, when I can’t do these tasks it means someone else will have to, and I can’t tell you how bothersome that is. Not bothersome, but something more adjacent to guilt. I want to be a clean and organized and helpful person, and nothing disrupts that possibility more than a body reliable purely for its unreliability. Infuriating! But those are the rules dear. You can rest, waiting, either angry or surrendered; *that* choice is always mine.

The only real way to *wait* for some level of wellness to return with any sanity is to embrace to the present. Continually try to re-renter and stay in the now, reminding myself everything is actually fine. I *wish* it were different, yes. But it’s not life and death here. It’s mostly tolerance, humility, and patience. I have to remember (again and again on days like this) that all things of priority are operating, and all secondary things will be tended to when I’m able. The pile of laundry waiting to be folded has turned into a sculpture like heap in the hallway. Interesting color combinations and whatnot. More life surprises!

This thing called surrender comes highly into play throughout times like this, but it must always be discerned and separated from the idea of giving up. Yes, the two are mutually exclusive,as one implies befriending the present moment and accepting what’s possible and not; reality as is. The other has to do more solely with will power and throwing in the towel. As anyone and everyone with ME/CFS knows, if you could will-power your way out of this thing, we’d all be healthy as an ox. As Oxen? Who decided Oxen were the emblem of health anyway? Wait, who cares.

Despite the inch of snow disappearing by evening, remnants will remain. In the shady areas small patches it will last for a week. And in the yards where children play, sad looking snowmen will slowly shrink and deform until just two twigs-once-appendages lie in the wreckage pile. Perhaps with a rotting carrot somewhere in the mix. But for now it can simply be appreciated and enjoyed. One of my true great pleasures in life is experiencing the silence of snow, falling or freshly fallen. If you’ve ever stood in freshly fallen snow, or caught it still coming down, you know exactly the tenure of silence it conveys. It’s a sacredness proximal to watching the sun rise or set, or looking out into the oceans without a spec of land in site, or into the depths of canyons thousands of feet deep.

It offers to me the feeling of how much bigger than me the world is- how the earth inhabits a living autonomy, apart from the humans who occupy it. And yet, I have to believe we’re connected on some unseeable, unknowable field. I feel small in a good way—protected, overseen. A feeling of trust emerges because nature and all its phenomena far surpass me and my little life. It knows exactly what it’s doing. Which is reassuring personally, because I certainly do not.

(Here are some polaroids I took across the day. Polaroids: Because there’s just not enough damn photos out there.

Snow gives good reason to pause and reflect. Not to mention it makes for nice scenery when you’re sick and essentially useless. I would surmise too few of us really stop and take it all in as much as we ought to. Easy to get lost in the frustration of scraping down your car windshield or having to shovel the driveway. For me it’s the audible nature of it, both the particular sounds it makes and the muteness it creates. If you close your eyes, nearly everyone can hear the crackle and crunch of footsteps in the snow. But you can also hear the insulated silence, the voices and sounds muffled by the accumulation. As it turns out, there’s a scientific reason why snow leaves such a pervasive, distinct quiet: Each snowflake acts as its own tiny sponge, as does the amassed snow on the ground. In this capacity, the snow is actually absorbing sound, leaving a sanctified hush in the place of the typical, unbuffered world and its noise. Is nature neat or what?! I DO declare.

(Two Weeks Later)

The snow is long gone, the birds are chirping, and it’s in the upper 60’s. February is over! I was starting to doubt that might never happen and I may personally enter a ground Hogs Day situation. Anyway, this weather is a tease. We’ll get hit with a few more cold snaps before the warmth really settles in. Guess what? I’m still weak. ME/CFS is a resilient disease. Rain/snow/or shine: It can and will thrive through anything! Oh well, I had a fun and more energetic weekend, which is probably why I’m paying a physical price now. So it’s back to to-do lists undone, River ansy for her walk, and all the sounds of nature crystallized and clear, animating another day of rest.

I have learned to do this, and work constantly not to forget. I’ve gotten pretty good at doing very, very little. Can you imagine that being anything to be proud of? Ridiculous. And normally, no. But for the hand millions of people and I have been dealt, it’s a teeny, tiny victory. With patience, all of what we must do, all of nature, and all we wish to achieve will unfold as time and space allow. In the meantime, we have to continue to find and adapt to who we are, no matter what transpires on the outside of us all.

Health, Happiness, Unfolding

P.S. Listen to these two songs: They’re my faves right now.

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