i’m tired

Textling and artwork about Myalgic Encephalomyelitis by patient Marion Michell. Used with permission.    M.E. is like a burglar who steals from you every minute of every day. Its booty is your energy, half a sackful of cognitive functions, and whatever else it can find. Out goes your profession, your social life; your mobility, vision, memory; your ability to look after yourself without help; your idiosyncratic vitality – in short: the way you were in the world.    Hardest though: your intelligence curls up in a ball and rolls out of reach, and you lie in wait for those rare instants when you can seize it by the scruff of its scrawny neck and pull it from under bed, for a wee while.

Poem and artwork by Marion Michell, who has ME. Used with permission. (Click image to see it larger.)

dSavannah note: This post probably isn’t complete. It likely doesn’t make sense. That’s Myalgic Encephalomyelitis (MEcfs) for you. As my friend, who has had ME since he was 3 years old in 1984☆, said: “please help all of us find a biomarker and better treatments. I don’t want to be going up and down on psychotropics for the next 30 years. It’s a shit life.”

I agree. And as my title says, I’m tired, y’all.

☆He told me he didn’t want me to identify him because he doesn’t want to deal with the judgmental jerks on the internet, who will think he’s just made it all up.
 

Today is Tuesday, Feb 19, and it’s 11:53pm, which means it’s four days after publishing my last blog post. It also means that today is day four of a bad crash – during which I could do nothing but lay in bed, with the occasional whimper and full-out sobbing, feeling so much exhaustion, as if I’d run 100 marathons up Mt. Everest in a row – just from writing and publishing said blog post.

As a patient with Myalgic Encephalomyelitis (MEcfs) plus the other 50 or so other diagnoses, I knew that committing to publishing a blog post once a month would “cost” me in terms of energy, but it’s a payment (I told myself) I am willing to make. It helps me to be creative and express myself, and it also helps others who are suffering. (They’ve told me.) So, I do it, regardless of the cost.

The difficult thing is that I never know how much the payment will be. I figured one, maybe two days of a crash, but I guess I should have expected four. And perhaps, tomorrow will be day five of my crash. Who knows.

Update on Thurs, Feb 21: well, I had a very definitive four-day crash. On the fifth day, I thought, stupidly, oh, I’m okay, I can do a couple things… and what happened? I crashed really hard today. And I doubt I’ll be able to do much tomorrow, either.

ME_symptomsI can’t concentrate. And I can’t do the things I typically do to distract from the pain and exhaustion: I can’t watch TV – the noise and light and movement makes my head hurt; I can’t think correctly or process what anyone is saying to play around on social media; I can’t read – the words make no sense and I have no idea what’s going on…. So I lay in bed, and pray for death sleep, which is hard to come by, despite my exhaustion (which dictionary.com defines as “to drain of strength or energy, wear out, or fatigue greatly, as a person; to use up or consume completely; expend the whole of”. I’m drained, alright.)

And now it’s Monday, March 4 at 11:54pm. Today has been very stressful; I’ve been dealing with what I can only call a veritable shit-ton of bullshit regarding medical tests, results, records, and insurance. It’s enough to make me want to scream. (And I did.)

And the horrible storms and tornadoes that blew through Alabama and Georgia on Sunday? Thankfully, they missed us directly, but my body felt the storm coming on Friday – I had a full on fibromyalgia pain flare for three days. (That means every nerve in my body felt like it was on fire at a very high temperature. For three days. That’s over 250,000 minutes, if you’re wondering.) The flare only let up after the storm left yesterday (Sunday), but I’m still fighting exhaustion and an ungodly headache.

And now it’s Thursday, March 7 at 6:39pm, and I haven’t been able to spend a minute working on this blog, because all of my usable hours in the past few days has been spent continuing to deal with the medical tests, results, records, and insurance I was fighting on Monday. It never seems to end. I’m so tired of dealing with it all.

The storm on the radar of weather.com's app on 3/12/19. The storm that caused all my current misery.

The storm on the radar of weather.com’s app on 3/12/19. The storm that caused all my current misery.

And now it’s Wednesday, March 13, 3:52pm. Yesterday, as I lay in bed, in misery x1000, still dealing with the fatigue and also a giant migraine accompanied by a plethora of side effects (nausea, eyes hurting, any light or sound feeling like a dagger into my brain, etc.), I decided that I just could not force myself to work on, much less finish, the topic I wanted to publish for March (How to be a friend to someone with #ChronicIllness). My brain has been so sputtery, and I’ve had so many days of zero usable hours this past month, I decided the best thing for my health would be to just publish these notes for March.

And I’m tired, y’all. I’m exhausted. I’m tired of fighting for medical providers who don’t know their own program and pass me around to everyone in their department, with no answers.

I’m tired of dealing with the pharmacy to get my meds. The last three months, they’ve been out of one of my pain medications due to a backorder from the manufacturer. This meant, not only did I not have any of the pain medication I need to allow me to be a tiny bit functional, I had to make a bunch of calls to see if they could get my pain med from another pharmacy, then calling my doctor to see if they could just switch the med to the other formulation. (And by the way, the pharmacy is supposed to call the doctor to make a substitution, not me.)

Then, when I turned my script in for this month, the pharmacy saying insurance won’t allow them to fill it because it’s too soon – all because it wasn’t filled when it was ordered last month – because of their inventory! And now I have to worry about making sure I get that medication when it’s ready.

And, oh yeah, now they’re out of one of my anxiety meds. Until the end of the month.

I’m tired of having zero control over my own medical records. My former primary’s records did not properly make note of my symptoms and degeneration, and those shoddy records helped get my disability case denied.

And did you know that there’s a national database (the prescription drug monitoring program (PDMP)) that doctors have to check when prescribing certain medications? A state-by-state database that you have no idea what’s in it, and you didn’t give permission for your info to be in it?

At my last doctor appointment, the nurse asked if I was still taking {something unintelligible}. I literally had no idea what she was talking about, and told her that. A day or two later, I realized she was referring to a new sleep med that another doctor had prescribed a trial of, but that I haven’t started taking, so I didn’t even think about disclosing. A med they would only have known about by checking that database. It’s an invasion of my privacy, but there’s nothing I can do about it.

And speaking of privacy invasions, The New York Times recently posted an article “On Disability and on Facebook? Uncle Sam Wants to Watch What You Post“. People who have disability are terrified, all the time, of losing their benefits just for going out once and smiling for the camera, or receiving a tiny cash gift. We’re not allowed to have fun; if we do, we’re faking being ill. If we’re sad all the time, we’re “too negative”. If we can do a tiny bit of work, we can’t get paid for it or risk having benefits cut; the system is designed to keep us in poverty.

I’m tired of feeling powerless all the time, like when I got handed a bill before an appointment for $1,300 from a visit at that doctor six months ago! that insurance didn’t pay for some reason, that I now need to figure out what to do with.

I’m tired of having no control over my own body. I can’t fall asleep, no matter how long I lay in bed and do mindfulness exercises and count backwards from 400 and listen to sleep hypnosis tracks. And I can’t seem to get help for it – insurance denied an in-lab sleep study a few years back. (At-home sleep studies are only good for diagnosing sleep apnea, which I don’t have. But they didn’t care, not even when presented with evidence in an appeal.)

I’ve been trying once again to get a sleep study. My doctor ordered one in December, and after approximately 28 calls (not an exaggeration. I have nine pages of notes), I did the at-home study, which proved I indeed do not have sleep apnea. But now I have to wait another six weeks to see a sleep doctor. And have I mentioned I’m tired?!?

I’m tired of being unable to hold my medication, so it drops to the floor. I’m tired of shaking so much the liquid I’m drinking to take the meds goes all over the counter.

I’m tired of being doubted, unbelieved, misunderstood, forced to justify my very existence.

What’s truly sad is that all of these things I mentioned are only about half of what I’m dealing with right now.

For something different, here's a picture of an armadillo I shot in 2011. I think it was probably my backyard in Arkansas, but who knows?

For something different, here’s a picture of an armadillo I shot in 2011. I think it was probably my backyard in Arkansas, but who knows?

As I said on twitter under the hashtag #ThingsDisabledPeopleKnow: You are completely powerless over the vast majority of your own life, held hostage to the whims of drs, medical providers, insurance, pharmacies.

So, I’m tired. I’m worn out. And everything I wrote about in a post in Oct 2017 that I called “It’s not the forest … It’s the leaves” is still accurate. I’m still dealing with all of it, and more. (The “leaves” I refer to in that title are a metaphor for all the million things I have to deal with with regards to my illnesses.) And I stand by my statement that #ChronicIllness: the worst job in the world.

And if you wonder why I’m sharing this, instead of perhaps a “real” blog post, well: Obviously, I want to meet my goal of publishing a blog post each month. But mainly it’s because writing, even in tiny spurts of a few words here and there, is basically all I have left. The only “power” I have left in my life is my words. And my words are needed to educate and advocate, and to let people know what life with this horrible illness is like. So I persist.

And finally, it’s Friday, March 15 at 12:45pm. I’m just reading this over one last time to make sure I’ve included everything I wanted, and maybe catch a typo or two. I just counted (I keep track in my calendar), and since last month’s blog, I had 17 days where I felt so terrible, I could do nothing at all.

And right now, it’s pouring rain, which means my head is pounding again, and all my bones and joints ache, deep down. So I’m just gonna hit publish, and crawl back in bed, and wish for sleep that will never come.

This is what ME is like. Thank you for reading.

PS. Please don’t suggest I try something for my symptoms and illnesses. I’ve probably already done so and failed it. I don’t need to be reminded of things that don’t help.

PPS. The hashtag for those of us who have ME is #pwME, or “patient with ME”. Some people object to the word “patient”, as that makes them feel powerless, and just that, a patient with no other purpose. Personally, I think we should be using the hashtag #MEep – which is adorable, and both means you are a person with ME, but can also refer to your friends (peeps!) with ME. Pass it on. :)

PPSS. It looks like I might have found a new, better hosting service for my site and blog. So it might be down for a few days as they migrate it over. Please be patient!


Before you go:

I’ve never had ads on my blog, and never wanted them, but it’s expensive to have a website, what with the domain registration & hosting fees. And I haven’t been able to work in four years, and I get no disability benefits – and my medications alone cost me over $300 a month!

If you found this post useful or inspiring, please consider supporting me and my ramblings:

Your support keeps me going, even in tough times. Thank you for stopping by my blog.

Also, if you would like to help terribly ill #MEcfs patients like me, please consider donating to the Open Medicine Foundation or SolveMECFSInitiative, both of whom focus on research and looking for a cure; or #MEActionNet, an organization that focuses on advocacy. Donate online with a credit card, giftcard, or paypal!

More ramblings / other posts you might want to read...

dSavannah

About dSavannah

~ #disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ also #wife #feminist #ally #advocate #papyrophiliac #DogCatTurtleWrangler
This entry was posted in #dSavannahDefects, advocacy, chronicillness, community, depression, disability, hard work, health, hell, illness, insomnia, making a difference, perseverance, shining a light, the dark places. Bookmark the permalink.

4 Responses to i’m tired

  1. Mike says:

    You’re correct, the armadillo was in our backyard on the mountain, in AR.
    Xoxo

  2. Liz says:

    Love this post. Great stuff. Love that you stopped and showed a photo of an armadillo and seemed not entirely sure of where it came from! That’s chronic illness! Too stop right in the middle of everything and laugh at something nonsensical. Nice.

Whatcha think? Tell me, tell me!