Wow. It’s been a long time.

I don’t think I’ve ever not written words for this blog or even just for myself for this long before. I wish I could define it – that thing that’s getting in the way of my writing. But wait! I can! Sometimes I am horrifically obtuse.

The thing that’s getting in the way of my writing about this strange period of my life is the completely overwhelming nature of adjusting to hitting ever new levels of disability that are happening so fast my brain isn’t able to absorb them. The transition to becoming a new version of me that is a full-time very, very sick human with ever-increasing levels of disability she never ever could have imagined has fully taken over all available space in my brain that isn’t completely focused on the fact that I am in horrific amounts of pain all of time and trying to survive.

I’m not talking about the usual annoying pains I was always in before that are very typical for those of us with aggressive chronic illness. I’m talking about capital P Pain. This major Pain requires higher level meds to attempt to manage it. Those meds mess up my brain and make me want to sleep (which I can’t do because that makes the pain worse, not to mention the negative impact sleeping all of the time has on my delicate state of mental health). Those meds also don’t really work all that well. So, short of moving toward scarier narcotic meds that I will not try, I’m left half awake but still in Pain. Constant Pain.

Docs like to measure pain on the typical 1-10 scale. I find that scale ineffective but being at a 9-10 at baseline for daily pain makes it hard for a person, for me anyway, to focus on just about anything other than the Pain. Those other things I have trouble focusing on include everything from conversations with visitors to interfering with relationships with people as important to me as members of my own family and forever friends who are more important to me than I can express.

My sister recently told me she didn’t know how to relate to me. My mom struggles. Some members of my family have just quietly disappeared from my life as this new person I’m becoming continues to evolve into someone who sometimes says terrible things without thinking and has nothing to talk about but how bad she feels. “How are you today” texts are fraught with complexity. I often don’t know how to answer. I joke sometimes with things like, “Oh, not quite as terrible as usual” but what does the recipient even do with that basic truth of my life?

How does a non-sick person begin to understand the terribly, terribly sick person?

I used to make somewhat of an effort to spend quality time with my small list of close friends who have stuck it out with me through this mess. I’ve stopped doing it in the past few months since my last stay at Inpatient Rehab because I don’t even want to be around me in this state – why would I expect anyone else to want to be in company like that? What would we do after I stopped sobbing about what’s become of me, mentally and physically? Where does a conversation go after that?

I haven’t had the energy to keep up my stream-of-consciousness constant social media posting. How many pictures of the same views from the same beautiful windows of the same beautiful leaves can one post? Like I said. Even I bore me.

I’m often found sitting at my kitchen table staring out the window at my oak tree, the squirrels, the birds, the chipmunks (all manner of woodland creatures) with a completely blank look on my face. I feel everything and nothing. I feel angry while also feeling mildly proud of the power of my crazy ass disease. I mean, as MS goes, she’s a real over achiever.

My MS is my constant companion much like the folks I pay for enabling my life as I know it these days. Those amazing folks called Care Givers. I’m not used to being so…disabled? Like if there were merit badges I’d have gained a whole bunch since last we spoke. We also all know how well I do with having constant companions of any kind so that’s a thing all its own. This never-being-aloneness. It’s been almost 6 months since I’ve been able to stand on my own two feet – so six months of needing 24/7 care.. I’d have expected me to be used to it by now. And Dr. KB would remind me that I lived blissfully alone for over 30 years. Of course I’m not used to this never-aloneness. Or in your native language a better way to say that might be constant companionship.

See what I mean about the nature of my scrambled brains? Writing. The one thing that’s always easy for me, has always been easy for me – well. Let’s just say the idea that nothing gold can stay has been proven to me once again.

There is one time of each day when I am alone. It’s at the end of the night when I’m transferred by another human being from my relaxing recliner to my bed recliner. But before that relatively “content-adjacent” state can be accomplished there’s still more to do. There are tasks to be done before my alone time begins. So many tasks!

First, whomever is my caregiver that day gets my body on my Sit-to-Stand lift from my living room recliner where I’ve likely been staring dead eyed at some show on some streaming service for several hours. My caregiver has to remove the leg lifters i use for keeping my feet flexed and set at right angles on the chair legrest. Then she removes the rubber toe separators that have been holding my toes wide apart since I sat down three or four hours ago. Once that’s done, I push the button for the chair leg rest to go down. She notices my legs are stiff and refusing to land on the floor when I’m no longer reclined. She pushes my feet to the hardwood floor. They need to be bent at the ankle to get on the standing platform so we give those feet a minute to settle. If they settle. If they don’t settle, my caregiver will have to fight them even more aggressively to get them on to the platform. Then I have to scoot forward to the edge of the chair for being in ultimate lift-from-chair position. I use my caregiver as a human shield because we often notice that my unruly legs don’t want to just settle nice and flat on the hardwood floor in front of the chair so scooting can be dicey. Sometimes my caregiver has to stand on my feet to hold them in place. Or hold the feet on the floor with her hands in some oddly timed downward dog. Both work. Both are less than comfortable for the person who has to perform the tasks.

There is a piece of black shiny material that sits on the platform of the lift. The strip of shiny black stuff is about 10” wide and 8” tall to accommodate my feet. This material is called Dycem and if you’re disabled and you don’t buy Dycem by the roll I don’t know how you manage. Dycem is miracle stuff with so many uses! For me it keeps my feet from sliding on all of the surfaces upon which my feet will be placed: the lift platform, the tile floor in front of my toilet where my feet will be placed by another human person’s hands, one-by-one, on to the floor. The fact that I buy black Dycem by the roll and that it looks like the kind of material that kinky sex outfits would be made of, amuses me sometimes.

Now to get those feet and legs on to the lift platform so I can be lifted to a standing position. I have to stand on this thing I refer to as THE MACHINE. There’s also another thing we call the SLEST (combination sling/vest) that has to be wrapped around me by another human and then secured there. As I typed those words I nearly snorted at how simple that sounds. “Wrapped around me.” It’s more like a painful wrestling match between my human caregiver, the various parts of the machine and my unruly body. Doing this utterly ridiculous and horrifically hard task multiple times a day to move my useless carcass around causes all sorts of repetitive use injuries for my caregivers. All to wheel me from chair to chair while I hold my arms up and grab the world’s most awkward lift handles – a position that hurts me in so many different places it’s kind of amazing. Obviously it hurts my arms and my neck. It makes my neck feel like it’s being twisted by the devil’s own hot bony hands. But it also hurts my ankles that have to be positioned just-so to prevent ankle and knee pain during the short trips between the five places upon which I am able to sit: wheelchair, relaxing recliner lift chair in the living room, identical (except color) chair in my bedroom where I sleep, toilet and shower bench.

I get rolled around this house like so many very heavy awkwardly shaped shipping boxes coming off of a FedEx truck. Or I also like to imagine myself as Hannibal Lecter. I get a chuckle sometimes by saying “hello Clarice” to any visitor who witnesses this debacle of me being rolled from place to place on what looks like a human dolly/hand truck. That iconic scene from The Silence of the Lambs were Hannibal the Cannibal is strapped in to be moved from jail to jail. I do the whole “hello, Clarice” routine because that shit is just funny but also because it’s also more awkward for me to have non-sick people see I struggle to find the best words to describe this singularly unique mode of transportation.  There’s the way I kind of hang forward on the lift where the Slest makes my belly hang out like that fat guy at the beer bar in the too-tight pants despite my furious attempts to stretch my shirts down long enough to cover the undesirable parts of me. That’s kind of a sick joke too because I find all of me undesirable – like how my legs swell around my compression socks by the end of the day that anyone can see because I only wear shorts in my house. Pajama shorts from Amazon to be exact. The same shorts that help me cool off when my fucked up central nervous system tells my body it is hot when it’s anything but in my tightly climate-controlled environment. I wear all black for daytime (duh) and various objectionable colors for sleep/relaxing time. Me. The girl who used to have a wardrobe to die for. I buy my shorts from Amazon and I am just so relieved they have these particular shorts because they’re comfy and very practical for threading the tubes through the leg holes for perfect placement of my supra pubic catheter tubes that carry the pee from my bladder to the giant bag that hangs off of the side of every chair I place the bag as close to the floor as possible because GRAVITY is how the pee flows best. My Giant Pee Bag (MGPB) even comes to the shower with me. (There’s an even MORE giant pee bag for nighttime because my pee needs scoff at the idea that a 2000ml pee bag could possibly hold a full night’s worth of pee).

[Aside…if you click that link above you’ll be taken to a page on the interwebs for B&B The Bladder & Bowel community. These are my people. Screw vintage fashion and Fluevogs, tell me all the tricks to get an air bubble out of my cath tube. Now that is helpful compelling content that is now a regular part of my life.]

The tasks involved in getting me ready for bed are a bit staggering and I have to tell you that I lack the energy to share them. I will get to it. I keep telling myself that I’m going to get to all of the ideas for posts/essays/books when I have more energy. When I get used to this new reality. When I have a reliable routine (even if it is ridiculously complex). When I finally adjust to these new levels of sick and disabled that I keep achieving with such ease I’m like the American Ninja Warrior world champion of taking on new symptoms or worsening of the old reliables that bring me to this weird stage of my life. There’s even been talk recently of a possible side-kick autoimmune disorder that might have attached itself to my MS motorcycle like the sidecar in which nobody wants to ride that might be wreaking havoc in yet more not-fun ways! Yay me! Over achieving even in the complex chronic illness Olympics.

For what it’s worth, there aren’t any such things as the Complex Chronic Illness Olympics.

I used to think there were and I’d read posts from folks in even worse condition than I on the Insta-sick community and maybe a part of me felt secret relief that I was still only winning bronze medals with my paltry manual wheelchair and fleet of fancy expensive Danish rollators. I wasn’t sick like THOSE people with tubes, lifts, devices and whatnot. I would never be THAT sick. I’d just continue to be me, my twisted version of disabled-light where I could still floof up my hair and put on some fabulous red lipstick and kind of pull off a decent selfie for Sickstagram. Isn’t that amusing now to the girl going bankrupt paying out of pocket for 24-hour-caregiving that includes shaving my lady parts (for hygiene!) and changing my pee bag from MGPB daytime edition to MRGPB that will get me through a full night of sleep in my sleep recliner. That’s not even CLOSE to the level of intimacy I’ve had to achieve with some friends who are truly too-good-to-be-true and some former-strangers who are in my employ. I’ve spent over $58K in cash in fewer than 6 full months paying these amazing humans (there will be an entire post some day about the bizarre-and-yet-not world of caregiving for disabled adult humans…I promise). I didn’t have $58K in cash to pay these people. I’m on track to pay caregivers more money than I used to make in a single year.

Money stress! It’s also a category of the Complex Chronic Illness Olympics I thought I was winning. I’d just been named Chief Growth Officer for a giant advertising agency when last we spoke! Holy crap! Look at ME being all sick and C-suite ready. Until I was in Inpatient Rehab (again) for a month and upon release forced to accept that full-time executive level bullshit wasn’t gonna be part of my life anymore. I am officially medically retired. You read that right.

Talk about a topic for an entirely different post! This post is too long already and the topic of executive realness among the SEVERELY chronically ill and disabled community is fraught with many danger zones. That post will take me one helluva long time to write. The short story is that for the first time in more than forty years of working some kind of job, I am no longer among the ranks of corporate wanks who give a shit about things like growth projections and having a robust pipeline. Those words sound like gibberish to me now. Those words ARE gibberish in more ways than one but we who used them used them as key parts of our identities that came with stupid-big paychecks that make things feel important that truly aren’t. I mean, not outside of the bubble of global advertising behemoths.

That bubble was my life for the last 15 years. It is not my life any longer. Even thinking about it, let alone writing about it, feels like science fiction to my powerchair, MBGPB-having, chronically in ridiculous before-unimaginable levels of pain self.

Jigga what? Jigga who? (If you know you know).

Anyway. I miss you. I miss me. I miss this community! I miss the bubble I live in now that contains some of the best people you could even begin to imagine but do require some occasional interacting with to avoid complete isolation. I’m flirting with complete isolation. But I’m working on it. Thanks for sticking around for wherever this blog-place goes from here.