I cannot lie, reader, using the particular image I chose from my stock photo service for this post made me chuckle right out loud because as I’m sure you can guess, that perky fun beach limbo is decidedly not the kind of limbo I am about to write about.

No, there is no beach limbo with ridiculously good-looking stock model friends in my future and yet I am, indeed, most definitely in another kind of limbo that just might drive me mad before it comes to an end.

The really odd thing is that when this particular limbo ends, I’ll find myself smack dab back in the hospital all snug like a bug in a rug with Franzi and his new team at his new Inpatient Rehab (IPR) facility where I don’t really want to be at all because who ever wants to be in the hospital let alone a strange one? But at the same time, not being at IPR isn’t terribly productive right now either. So there’s the rub.

It’s odd not being well enough for regular life but not being unwell enough for hospital life.

That’s also not entirely true. I am definitely unwell enough for IPR as is evidenced by the number of times I’ve had the physical ability to dress myself for work (even from the waist up) in the past few months. And I’m kind of doing real life? But oh my stars. It’s messy.

I spend my life pretty much full-time in pajamas and while I fully accept that there’s no chronic-illness-having individual who doesn’t know that there’s no shame in that full-time pajama game – I did a meeting this week with our company CEO while in day-two jammies where I had an active speaking role. Granted they don’t look like jammies and he obviously didn’t give a rat’s ass what I had on (nor does anyone else, really) yet it still did a number on my reliably ableist brain.

I’m the one judging me. I’m the one goddamned tired of looking at myself in pajamas every day and night for months on end. As the internet memes might say: IT ME.

It’s not only the harsh self-judgement that encapsulates this weird not-well place in which I find myself as of late. The short story is that I miss getting even half dressed. I miss putting on a little bit of makeup on some days. I miss finding joy in my ridiculously elaborate twice daily skincare routine.

I miss finding joy in anything at all because when you feel like such week-old ass all of the time, it sucks the joy out of life. Even the little joys. Even the little joys you didn’t realize were joys at all like being able to stand long enough to set up your own elaborate and annoying Cuisinart Grind and Brew coffee pot every day…yes. It’s a pain. And yes…I love my stupid complicated coffee maker. So shoot me.

My entire medical team believes I can get back to my previously regular base level of standing, functional ambulation (being able to walk just a few feet! nothing crazy), not breaking my arms by using them so damn much to make up for my weak legs – maybe even sleeping in an actual bed some day.

They all believe I can get back there because I could do those things and more in the days before my second Covid vaccine dose and then a week after my vaccine I couldn’t. That kind of sharp and sudden decline isn’t typically how MS progression works – even when your MS is as fucked up as mine is. There is some legit medical literature that documents this weird resurgence of neurological reaction to the Covid vaccine but it’s very complex and I won’t even try to explain it. When I shared it with Franzi and The Great Scott, my MS specialist they both validated it as coming from a valid source of medical knowledge and research. But nobody really knows what to do about it. So. It was like a night and day, overnight kind of change. My pump settings even changed dramatically and are now in the process of being dramatically changed back. Slowly.

Because slow drama won’t drive me crazy at all, now, will it?

Well, if you’re a regular reader you know that I’m definitely not handling this set back well.

I know. I fucking KNOW. It’s a marathon and not a sprint blah blah blah. I know this is why it’s called “chronic illness” and not “continually improving fun.”

No matter how well I know these truths it makes them no easier to stomach. Even nearly six years in. I should be better at this living while chronically ill thing and yet I’m still a rank amateur. No two ways about it. Every time a downturn like this hits me it feels like my life is over. It feels like I don’t have it in me to recover. It feels like another come back is just so many kinds of impossible.

Every time a downturn like this occurs it would appear I am also prone to all new levels of self-pity and dramatic effect. I’m on my own nerves. Again.

When I thought I was going to IPR in early September just after Labor Day, I alerted my superiors, peers and team at work that I was going to be out. As a responsible department lead does. I mean, I did a damn blog video in practical tears over the mere thought of going to IPR at any moment (you know I was feeling desperate to do a video). I couldn’t concentrate on important things like work because my illness was screaming at me all day and into the night about how we were in danger girl, DANGER, and without Whoopi Goldberg to guide us safely to the other side.

I took vacation time from work to give myself time to ease into the IPR reality like one does. I prepared the troops and packed a bag. Actually I packed two bags of clothing and one set of sheets and two smaller bags full of toiletries and skincare. I set my email to deliver vague automatic replies about me being away from my office for “some” time.

Until there was no date of admission when I was expecting to be admitted.

One IPR social worker whiffed and went on vacation before getting the insurance approval ball rolling and it took a week for anyone to notice. Then the second social worker jumped all over it but we needed detailed notes from my home health care team etc etc etc. Which we did. Easy peasy. Then the paperwork for sent to the wrong insurance location. Then we (and by we I mean me) straightened that out and got the paperwork to the right insurance when someone happened to notice that my admission target date of this coming Monday (a full two weeks after my original target date) was also the first day of a much deserved vacation for Dr. Franz.

Um. We only call him DR. FRANZ when he’s taking vacation from a hospital location where there is no other doc qualified to manage my baclofen pump. Not a one. It’s like when the nuns in high school used to sternly call me MARIBETH when I was in trouble.

I told the hospital people I’d check myself in anyway and just wait for pump adjusting until Franzi got back. I was so frustrated with the state of my home life situation and the level of pain I’m attempting to manage with ineffective drugs you could say I was willing to do anything.

We pushed the insurance company for urgent pre-authorization (again, we is me…).

Let me take a quick side bar here about managing a complex chronic illness in this health care system we have in America.

I wish I had the right words to explain how much time and how many years I probably took off of my life trying to get all of these various medical entities on the same page…those words would be things like “blerg, gah, howzit, what the actual fuck” then repeat. I’m a writer and I don’t have words for what health care wrangling of this kind of thing takes out of a person. It’s brutal. And this is for something rather commonplace like inpatient rehab admission. I have friends I love dearly who are so much more medically complex than I am currently who have to manage so many more complicated health care situations. Just imagining it blows what’s left of my mind. Doctors, nurses, insurance companies, health care providers of all sorts just don’t connect with each other well. Systems aren’t set up properly. It feels actively intentional. It feels like it’s made the way it is, this health care “system” to keep sick people sick. Hard stop.

So while all of this wrangling is going on, your girl is over here leaking water from her eyes in torrents with very little ability to control when or how often it came out. When I wasn’t crying I was ranting in such red-faced overwhelming anger I thought I’d spontaneously combust from the pressure cooker that was brewing in my brain.

So what did I do? I needed something to think about that wasn’t this mess of healthcare flotsam and jetsam.

Of course, I tried to work. But I’d already told everyone I couldn’t work. But then I’d randomly show up in meetings or respond to email chains with random opinions or perspectives and obvious chair-head (my version of bed head) in my little Teams meeting video block.

I wanted to explain to my work people why this was happening but it was just too complicated and I was too weary to explain that dipping in and out of “real” life was the only thing keeping me going at the moment so I decided people would just roll with it until I could properly explain myself one-on-one to the like thirty people I interact with on a weekly basis. I wasn’t going to send ANOTHER boring email about the insane nature of what I was actually doing while not actually being in the hospital as I’d already prepared everyone to expect me to be.

Sigh.

So yeh. I’m still home. I’m still sobbing in the presence of not one but two mental health professionals on a weekly basis, as well as in front of family, my roommate and various delivery people.

I’m still unwell and still having trouble doing basic stuff but the longer it goes on, the more surreal it all becomes. The days blur together and the nights offer the only refuge there is and even that isn’t without complication. I’m in some kind of in-between fugue state where I can’t live one life or the other and where the blend of the two feels every kind of wrong.

My therapist tells me my personality type and my ultra-capable professional self can’t see how this level of stress is just not something one can sustain for very long.

We talk about the psychological theories and modalities that explain why I shift so seamlessly into “I can fix anything so stand back” while I do two video meetings and two cell phone calls at the same time whilst sending MyChart communiques about the reasons I’m not taking some drugs but am taking others so that when I finally AM admitted to a hospital, it won’t take me a week to straighten out my meds with the nursing staff I’ve never met before while also commenting on a pricing brief for our team’s latest new business submission.

And then I cry.

I cry so much I almost miss the days when I wasn’t good at crying. Dr. KB gives me top marks for mastering the concepts around Acceptance and Commitment Therapy (ACT) which led me to become such an expert at sobbing though I challenge her aggressively on that belief nearly every week. She just laughs in her lovely way, telling me our next foray will be into the concept of Radical Openness (I’m forgetting the full name of the rest of this psychological method because I was too busy crying to take notes).

In this phase of therapy, I’m going to learn how to successfully combine my Fixed Mind with my Fatalistic Mind into the Venn diagram of the nirvana-sounding state called the Flexible Mind.

Reader, I am not being hyperbolic when I tell you that just typing those words exhausted me mentally and physically on some kind of metaphysical level. I’m sure you can also imagine how really excellently honed are both my Fixed and Fatalistic Minds. I’ve got Olympic level skills in both areas. I’m the Simone Biles of the F/F Mind combo. I’m adding another “F” to that combo in my mind.

Don’t worry. I have handouts. I’ll get it eventually.

Incidentally, I’ve introduced Dr. KB to the device that Cheryl, my precious original therapist, created and used on me with great success for many, many years. This brilliant and devious device is called “Client of the Year.” As you might expect, I am committed to winning. I also explained to Dr. KB that I was quite certain that Cheryl told each of her clients that they won client of the year, each and every year, but it only took me like 12 years to figure it out and call her on it. The concept still works. Dr. KB is already searching for an appropriate trophy.

All of these many, many thumb-typed words are simply to say…well. I’m not in the hospital yet? Franzi is enjoying a Mai Tai on a beach somewhere (or he fucking better be) and I AM at home feeling as not-at-home as it could be possible to feel while actually in your home.

That the prize at the bottom of this Cracker Jack mess of my current life is another hospital stay in a year in which I vowed I would never allow it to happen while shaking my fist at the heavens for dramatic effect is just kind of par for the Bethy Bright and Dark course.

As it happens, in addition to being a master of the F/F/F Mindset theory of psychology, I am also grand empress queen of the drama queens.

I’m so not ok.

The handouts tell me that I should embrace my state(s) of not-OK-ness and ask them to guide me.

Right. Got it. Any questions? I mean other than, “how low can you go?”