Tales from the puffy village

That's it up there. The puffy village. The place I love most in the world, where I come for comfort, where I lay my head when the world out there becomes too much. An old boyfriend dubbed my overly comfortable bed the puffy village a long time ago because he said it was so insanely comfortable you could live there happily for all time. The boyfriend is long gone. The puffy remains.

I take a lot of care making her as comfy as possible. I choose my sheets and bedding with obsessive care the way I used to select designer shoes. Currently, I'm in a mixed print phase.
Just looking at this picture makes me happy.


See, I've spent a whole lot of time in the puffy since being sprung from the hospital on Monday evening. I mean, I'm glad I got out. I couldn't stand the idea of that hideous torture chamber they call Allegheny General Hospital for even one more second. I guess I thought it would be better at home. I'd feel better. The ruse I performed for the overly attentive PT team would turn out to be real and I'd go back to being able to stand up, walk around, bend over touch my toes and do a little jig. But as I'm sure you've figured out by now, things actually haven't gotten much better at all.

I'm so dizzy it's ridiculous. I can barely remain on my feet. I hold on to anything and everything in order to do basic things like walk to the bathroom or down the steps to the kitchen. My legs are weak on top of the dizziness I feel in my brain. I feel like my house has been transformed into a fancy house boat that happens to always traverse super rough waters.

The antivert I'm taking for the dizziness makes me tired and doesn't seem to help the vertigo much at all. I haven't left the house since getting home Monday night. I've been asleep approximately 85% of the time since. I'm still in pajamas all day and I've yet to risk the shower. I'm deathly afraid of falling and ending up in the hospital again – and lord knows, that's just not gonna be something I allow to happen.

Family and friends are at my beck and call to handle chores, to feed me, to make deliveries and make me laugh. Mostly they're there to help me up and down the steps and take care of my very spoiled menagerie of felines. Damn, I have a lot of cats.

I can't read because my right eye is wonky. I can type if I keep one eye closed. Television is hard, again, because of the wonky eye. My list of things I can do consecutively has grown shorter. I'm down to one thing at a time before I need to rest. I used to have at least two things in me, sometimes even three.

It's hitting me hard because I'm finally realizing that this just is what it is! The part I thought was the worst, where I was waiting for the magical drug to kick in and make me more human, that was the good part! I thought it was the bad part. I thought I could only get better.

Turns out, it's super easy to get so much worse. I wonder how long it's going to take me to bounce back from this episode? What will my new normal be? Will I ever get back to my doing three small things in a row self? How long will I be the queen of the puffy village?

At what point do I simply cease to exist?

I know. I'm super dramatic. Spending so much time alone in deep thought whilst listening to one's body fail all around her will do that to a girl. And that pisses me off even more!

I'm the queen of the loners! Ask anyone who knows me and they will tell you how much I enjoy my own company. It's probably a giant character flaw but it's true. These last few days I feel like I'm in the twilight zone where I'm walking from familiar room to familiar room, holding on to walls and chairs, looking for the person I used to be and not finding her. There's someone else here now. She can barely stand up and her hair is atrocious. Don't even look at her eyebrows! The horrors.

I keep telling myself this too shall pass. That's what everyone, literally everyone I know both in real life and in MS life, has told me and I believe those people. They're so much better at this MS thing than I am. They've gone to the darkest places and clawed their way back. I keep thinking I've accepted this thing in my life then something happens that turns my life ass over teacups and I'm back at the beginning looking around thinking, "what the hell just happened?"

I just want to not be dizzy so badly! I want to will it so with my broken brain. I want to sleep the sick away and wake up magically feeling a little worse for wear but generally just a little gimpy and slow. I thought that was the bad part! I thought things could only get better. As if I didn't know the truth.

The truth is that was probably as good as it gets. That whole time before this hospital incident when I felt like I'd hit rock bottom wasn't even close to the bottom! I'm looking at getting my first assistive walking device (form tbd hopefully with the help of some outpatient PT once I feel a bit more able). Once I get a cane, I'll probably need a walker soon after that. The wheel chair can't be too far behind right? At least a scooter…

I know how lucky I am to have the luxury of sleep in the world's most comfortable bed. After being deprived of sleep for so long, being in the puffy feels almost like heaven. And yet the whole thing changes a little tiny bit when you realize you're not in the bed by choice. You're in the bed because your body flat gave up on you. No combination of high thread count mixed print sheets can help you in that situation. You just have to suck it up. Try to be grateful and go back to sleep.

Every time I close my eyes these last few days I have this intense hope in my heart that when my eyes open again I'll be off this houseboat version of my life and back to my happy place where a shower isn't life threatening and awesome sheets are enough to make me feel happy.

Until then, here I lay. Flat on my back. Cultivating happy hopeful thoughts and functioning as a speed bump for my very many cats. It could be worse. It could be much worse.

Remember the hospital? Exactly. Shivers.

What a dumb day

Today started out pretty nice, really. I woke up around noon after a lovely sleep. I had pancakes with my niece at my favorite breakfast place (who cares if it was lunchtime for the rest of the world). 

I had a few chores I wanted to tackle today and I was feeling like I could probably make it happen. But what should have been an easy jaunt to the laundromat turned into the most stupid day ever. 

See, it’s shedding season. The cats are dropping fur in clumps all over my house but they are especially fond of leaving their fur all over my bed. I mean, we all spend a lot of time there. It was pretty gross this morning when I dragged myself out of bed.

I resolved to get my big bedding – comforters, quilts that kind of thing, to the laundromat because they’re just too big to do properly at home. And it would take very many steps to get it done at home – physical steps from the second floor to the basement and up and down and up and down. The laundromat is so much easier. They have giant machines and even better than that, there’s an attendant who will do your laundry for you. You drop it off and pick it up when it’s done. Easy peasy!

I mustered up my energy and dragged three giant laundry bags from my second floor to the first floor then out the door to my car. I figured since I was going I should do all of the dirty comforters and quilts. I have a few. It’s kind of a sickness in and of itself, my obsession with my bedding. I made it to the car and felt pretty victorious. 

That is my laundry in the vestibule of the local laundromat. I dragged it in there all by myself. I dialed the number I usually dial for the attendant – but nobody answered. There was a sign that said “attendant will be back shortly.” There were some moderately shady people hanging around the laundromat and I wasn’t sure it was wise to leave my precious bedding unattended. So I thought, no big deal! I’ll just wait. 

One of the guys in the place walked to the back of the laundromat where I was waiting and told me that the attendant would be back. “He usually pops in every hour or so. He should be back soon.” So I waited. I called the number a few (15) more times and still got no answer. And I waited some more. 

“Sometimes Clark is over at the St. Vincent de Paul store hanging out with the girls there. You could walk over and check.” Ok. That’s not so far. I can do that. I’ve been there for like half an hour now and I’m starting to feel stupid. I head toward the front door and I notice that it is now pouring down rain. I turn around and walk back in to the back of the laundromat and plop back down on the little chair by the unattended attendant’s desk. I wait some more. 

I’m chatting with the other patrons by now. Making friends. Trying to gauge whether or not they seem like the kinda folk who would steal a person’s bedding. It’s really hard to tell! I walk back to the front of the store, notice the rain has stopped, then head out the front door down the street to the St. Vincent de Paul store about a block down Main Street. 

“Hey is Clark here? I’m looking for the laundromat guy,” I say, to the girl with the green hair who works in the charity store. 

“I think he’s gone. He left around four,” she says to me. It’s now 4:45pm. And I’ve been hanging around the laundromat like a creeper for almost an hour completely torn about my next move. Walking back and forth. CallIng that stupid telephone number over and over again. Should I stay or should I go now? The Clash had no idea how deep those lyrics were. 

I begin to ponder my situation. This whole thing is happening because I don’t have it in me physically to drag those three giant bags back to my car and then back into my house all without getting them cleaned, goddamit. I had a goal! I wanted this goal accomplished. But my body was about kaput. I knew if I dragged those three bags back to the car I’d never come back. 

This is life with multiple sclerosis. 

You plan elaborate schemes for accomplishing ordinary tasks. You obsess over these tasks and how doing them shouldn’t be so hard. For Christ’s sake, I looked like the healthiest person in that place. I definitely had the most teeth. I should not be having an existential crisis over my bedding. 

I wait for twenty more minutes before deciding to leave a goddamn note and walk out the door (without my dirty bedding). Screw it. If someone wants my cat hair infested comforters that badly they can have them. I just didn’t care anymore. 

I took myself to get ice cream out of sheer frustration. I’d wasted a whole lot of this day trying to get one goddamn thing accomplished. Just one! And I was really, really tired from the effort. And I still didn’t have clean bedding. I think I deserved that ice cream. 

People will say (I can hear them saying it, as I type), why don’t you ask for help? Wait until someone is available to carry the heavy shit. Call someone! Ask a friend. Or a relative. Or anyone at all really! Don’t waste your energy doing stupid things like carrying laundry all around town and doing a walk about looking for Clark. 

Sometimes you just want to do the silly, stupid things yourself. Sometimes asking for help just makes you feel like someone helpless who can’t even do the littlest, most basic life tasks.  Believe it or not, sometimes having to ask for help to do little, stupid things just feels dumb so you do them yourself. And you end up feeling trapped in the laundromat because you don’t know how to muster the energy to leave and come back again. 

About an hour after I finally got home my phone rang. It was Rick from the laundromat. He had my laundry and I’d probably be able to pick it up a couple of hours or so. He’d give me a call. He starts work at 5:30pm on Saturdays. “You could have just left your stuff it would have been fine,” he tells me. 

He called me back when it was time for pick up. I saved that number in my phone. I will never be held hostage by my bedding ever again. I’ll just call Rick. Get the info, then leave and do something slightly more pleasant than feeling stranded at the laundromat. 

It occurred to me that I could have done the laundry myself in all of that time I sat there waiting. It would have been done. Of course I didn’t have this brilliant thought until after I got home with those giant bags of clean laundry and dragged them back to the second floor so I could put clean bedding back on the bed. Finally. 

This is the best part of world’s dumbest story: Look who’s all snuggled up on top of me and my newly laundered comforter. If you could see his kitty facial expression you’d notice he’s looking rather smug. 

Today was a dumb day.  But I did get pancakes (and ice cream).  I have clean bedding. I have Rick’s digits saved in my phone for all eternity (so this stupidity does not ever need to be repeated). And I’m back in the happiest place on earth. 

And I did it myself. Take that, MS. Take that.