And it’s good to know. I mean, I was haunted by the idea that I’d find out what it felt like for my baclofen pump settings to be too high when I was at home without any support for figuring out how to function in said floppy state. So this is the best case scenario. But after living as the modern version of the Tin Woman for so very long, this is some weird business. Just so very freaking weird.
In some ways it feels like I’m walking in a bouncy house that kids play in. The floors feel rubbery. Or more accurately my legs feel rubbery. It also feels like walking on a janky rickety bridge on an outdoor obstacle course – as if that’s something I’d ever do by choice.
Walking in general is a big challenge as are other important things like getting myself off the damn toilet and standing up in general. I pee a LOT people. Not only because of MS bladder issues but because I take lasix for the strange swelling that plagues my feet and ankles. There’s no actual medical reason for this swelling that anyone can find but it makes already challenging ankle mobility even worse so I suck it up and swallow that dreaded pill. When floppy, this makes me fear the toilet like the crazy killer guy in The Shining. The toilet changes colors in the night and growls at me. Not really but it feels that way.
Floppy makes me (wait for it) super tired. And if you’re following along at home you may recall that dragging around limbs that feel stiff like dead tree trunks is also incredibly tiring. So yeh. There’s that. MS is the gift that keeps on giving, y’all. So I’m not on the killer pain meds anymore thanks to my epidural steroid injection but now I’m a zombie because my muscle tone has given up the ghost.
I’m so flexible right now that my therapist nearly lifted my leg around my neck this afternoon during my physical therapy before either of us realized what was happening. She’s used to having to fight me. And oddly, even when rigid with intense spasticity, I am already very flexible. So much so that people comment on it in the PT room. Like how is that woman so bendy and yet…not. I know! Again. I’m blessed. But today’s level of bendy made me a little sad that it was a Sunday and I was alone in the gym without any other patients or therapists to wow with my Gumby impression.
I do this thing where I need to take what I call standing breaks. It’s a way to keep my legs strong and mobile when I can’t walk so great, like right now. Previously my standing breaks can easily last ten to fifteen minutes. Yesterday on my day off from therapy I was struggling to stand for four minutes. It scared the shit out of me. Days off from therapy where you can’t stand for longer than four minutes are close to my worst nightmare. I obsess about sitting too much. I obsess about most things but sitting too much is at the top of the list and Friday and Saturday after my injection were straight up sit-a-thons that haunt my dreams.
When I saw my regular weekly therapist in the house on a Sunday I could have kissed her. You get what you get on the weekends in inpatient rehab and it’s exhausting to go through three weeks of complex issues with someone brand new – let alone explain that floppy feels a lot like rigid in a lot of ways and I need help validating what’s actually happening to my body. Bethany, my PT, is like a communication genius. She gets me. She gets what I need. She explained why floppy feels like rigid sometimes and why it was floppy I was actually feeling. It must sound insane to you! That two polar opposite physical conditions could produce similar feelings in my body. It blows my mind too. And it makes me feel crazy.
Add to this that I had therapy hours to make up for since I missed Friday and Saturday so I did four hours of PT and OT today. Four. Hours. I honestly don’t know how it happened but somehow it did.
On top of that, I’m in the middle of drama about the reality that I bought a new house. I know. Who does that? Who even does that when in the actual hospital? Turns out I do. I’m too exhausted to write more about that now. Trust me when I tell you there will be epic writing about how much I hate the idea of leaving my current home but how much I can no longer deny that my living situation is actually physically hurting me. Nothing like another month in the hospital for generating massive teachable moments.
There are varying levels of support (and outright horror) for my decision among those closest to me. This has turned me into an emotional powder keg. I cry buckets at the drop of a hat. I cry when my cat sitter sends me video of my cat Fred. I cry every time I look at the listing for my current home and yes, I tend to look at it every fifteen minutes because that’s totally healthy. I also cry when I see other patients struggle in the gym which is what happened today. I honestly don’t know who has taken over my being right now but I’m a goddamn human sprinkler. Crying has now become my hobby and I feel safe saying that no matter how much I am 100% sure I made the right decision for the hope of getting back any semblance of an actual life moving forward, I will likely cry for months after I move. My current home is my heart. Leaving it is one of the hardest things I’ve ever had to do.
So, floppy, weepy old me is still in rehab and it’s probably likely that I will be here for another week at least while we try to unravel the mysterious art of making me a tad less limp without going too far in the rigid direction. I’ve been down this road before. I know this is the place to be for making this magic happen but damn. However, you should know that it is going to take a missing limb or something to get me to agree to going to the ER ever again. I’m officially afraid of being held hostage in the hospital every time I’m driven by the building. The people here are straight up angels on earth. I am so incredibly lucky to have familiar faces who fall all over themselves taking care of my every need. On top of that, they encourage me to the point where even I believe I’m amazing and working so hard and so intensely that MS should be afraid of me. But another month in the hospital? Sigh.
But there’s a purpose here. Operation Get Beth a New Life. I’m going back to work on August 14. I’m moving into a new house shortly thereafter that will allow me to be more independent, comfortable and productive than I’ve been in five years. I’m being fitted for my first official wheelchair which is key to this plan. And I’m exploring hand controls for my car.
I am finding my way. It might kill me and it took a fucking age to get started. It will not be easy. It already isn’t easy. It’s already so hard that every tear feels not only earned but fully appropriate and almost necessary. I’m as overwhelmed as a person can be.
But off we go. Buckle up.
Jean
July 19, 2020 8:23 pmI think you are a super badass inspiration.
Bethy
July 25, 2020 5:54 pmI bet you are too, Jean. <3
Doreen M Espinosa
July 19, 2020 9:20 pmJust look at where you are today as opposed to where you were last week at this time. What a difference a week makes!!! I, too, am waiting for an epidural. I fractured my tailbone and what I wouldn’t do for an epidural right now is downright scary. You are on the right path, you know it, and it is scary. Nobody said this is going to be easy, but it is new, and sometimes new can be exciting and adventurous. Relax, remember to look in the rear view mirror and keep your eyes open forward too. There are so many new views for you to see………and for you to show us. Looking forward to taking this trip along with you!!
Bethy
July 25, 2020 5:54 pmI’m lucky to have you along for this crazy ride, Doreen. <3
Stephanie
July 19, 2020 10:36 pmHoly Shit Beth… You Go Girl!!!
Kristin Hardy
July 20, 2020 10:11 amTo the tune of “Cleveland Rocks”
(Ahem)
Bethy rocks, Bethy rocks, Bethy rocks, Bethy rocks.
You know you do!
Bethy
July 25, 2020 5:53 pmYou are hilarious my friend. 🙂
Ruth
July 23, 2020 11:57 amWhat an amazing blog this is. I’m sorry but I chuckled at your description of the toilet. So much ahead to get ready for. All the best. I look forward to reading of the new life ahead xxx
So glad that you have great therapists in your corner
Bethy
July 25, 2020 5:52 pmThanks for the kind words, Ruth. It means the world. <3