More like everything old is old again, if I’m honest. I’m back at the beginning. A very fine place to start, or so said Fraulein Maria, but I’m almost certain she wasn’t singing about dealing with a most annoying chronic illness, was she?

If my pump is working properly, as they tell me it is, now we have to figure out how to re-set it, re-start it and re-jigger our plan to get me feeling less like the amazing stone girl. This means a few things.

First, it means the old routine starts all over again. Franzi makes an adjustment to my pump settings – specifically the rate at which baclofen is delivered to my spinal cord. Then we wait for 36 to 48 hours to see what effect that adjustment has on my spastic muscles. While we’re waiting, I’m back to my daily inpatient rehab schedule of OT and PT four times a day, usually back to back with a break for lunch. From 10:30am through 2:30pm or sometimes 3pm we exercise. It’s like Groundhog Day.

I struggle out of bed. I test my legs to see if I can stand up (did we accidentally make me too weak?). So far, this has never happened. I’ve never been too weak so that I am unable to bear weight. But that’s a good thing because this is an art and not a science.

As it turns out spasticity makes it hard for your legs to move but guess what else makes it hard for your legs to move? Weakness. Weakness makes it hard for your legs to move, too, and to this extremely exhausted patient, those two feelings feel a lot alike. Seriously. It’s almost impossible to tell which is which.

But my therapists! They can tell. So they manipulate my legs. They measure angles with weird little measuring devices. They discern where my body is spastic and where it’s weak and where it might be both at the same time. They explain that at times, they don’t feel the “catch” in my legs that indicates spasticity when I’m lying down or sitting with relaxed muscles. But as soon as I stand up and try to move, everything goes rigid city. Is this “spastic when I exert myself” feeling really a thing, I ask them desperately. Of course it is. Sigh.

We can’t just do some of the things to test my legs we need to do all of the things at various times and under various conditions to make the decision about whether or not in the next 36-48 hours I should get another pump adjustment. Like I said. Ground hog day but without famous comediennes and fuzzy rodents.

It’s not just the time waiting to see if the latest rate of delivery is going to have a good effect on my body and its ability to move that we are monkeying with, we’re now talking about changing two other specific details: the concentration of the medicine inside my pump and the form of the medicine itself. Currently my concentration is fairly low (500) and my liquid baclofen is a hybrid substance called gablofen. Another liquid version of baclofen can also be used called Lioresal. I’ve googled and googled and still have come up with a whole lotta nothing to explain why one of these drugs is different than the other. I just know we’re currently using Gablofen at a 500 concentration and in my next refill, likely early next week, we’re going to use Lioresal at 2000 concentration.

So once we make that change I’m guessing we’re going to be back to making adjustments to the rate of delivery because 2000 is obviously stronger than 500. I mean, duh. Meaning the whole make an adjustment, wait 36-48 hours, torture me for a good portion of those hours while we wait then repeat when my legs are still stiff routine begins again . Or if my legs suddenly go limp and floppy, same outcome really.

And in between all of that I am working so hard in physical and occupational therapy that I can’t keep my eyes open long enough to watch Jeopardy when I finally hoist myself back into bed each night. Er, each evening. Hell. Each late afternoon.

Because I’m so janky, I’m not allowed to do anything myself. I can’t get out of bed or use the toilet myself. I also can’t dress myself or shower myself. I’m not allowed to transfer from my chair to any other place or surface without supervision. It’s so…demoralizing.

On top of all of this crap, it turns out that the hospital IPR isn’t as well staffed as it used to be. Aides are scarce. Nurses are frazzled. Not being able to do anything on demand is frustrating as hell. I’m sure having to deal with an entire ward of people like me who aren’t allowed to do anything for themselves either is frustrating as hell for the nurses, too. It’s just not a good time here at the IPR right now. It’s a bit nerve wracking to be honest and that’s why I came here in the first place – to have a little less stress in my life. To try to get stronger while in the care of a squad of people who are here to help me do just that. My squad is frazzled and it’s not very reassuring.

I know I have at least another week of this routine in my future. Realistically it’s more likely to be two more weeks. And that’s just the beginning of the work. Then the whole home therapy portion of our program begins anew, wherein I attempt to get stronger at home while also unpacking a new house, managing the old outside world ADLs (or activities of daily living for those not in the IPR club) and starting a new (sort of) role at my job while all of this other stuff is going on.

I’m tired y’all. I’m very very tired.

I miss old lazy Beth. The one who could lounge and not cause herself great pain. The unjust nature of a lazy person such as myself somehow acquiring a chronic incurable illness that makes rest and relaxation actually bad for my physical body is just a bit on the nose. It’s irritating. I miss being lazy. I miss my old joyfully lolling about general disposition.

Accepting the role of the wheelchair in my life doesn’t eliminate the need for me to be able to bear weight on my legs or even more, to be able to sit comfortably without constant pain. All of that requires constant work. So. Much. Work. I’m tired of this job of trying to force my body into some kind of submission. I’m crushed by it, honestly. And it is my life. It will be my life for as long as I have the ability to move about the world in some way. It’s just the facts.

I am bored with this update to my story. I’m bored of the banal exhaustion that hits me every late afternoon and the same exhaustion with which I shall arise the next morning. I’m tired of this food. I’m tired of the bed. Saturday and Sunday are looming and those are usually therapy-free days. I’m tired of my ass being sore from sitting in my chair or my hospital bed when I actually get what I think I want. A couple of days of blissful rest. Or are they?

I’m on my own damn nerves. I wouldn’t be surprised if I’m not on yours too with this self-indulgent display of self pity. I mean, the pandemic is raging outside! Nobody is going to have the traditional Thanksgiving holiday of yore when we’re not supposed to be gathering with groups even inside of our own homes. It’s not just me who will miss Thanksgiving. Everyone is going to miss it too! This doesn’t make me feel even a tiny bit better.

This weekend on Saturday my cat Fred will move into my new home before I do. He’s going to be there with my awesome helper Maddi who will be living with me for a while until I develop some new routines and confidence in my new house. I’m hoping I will be following soon behind them but I need to be a little more functional before I can do that. To get more functional, I have to do exactly what I’ve been doing. There’s just no other way to get there.

The only way out is through. Again.

I have notes in my phone for some uplifting IPR blog posts about daily life here that I’m dying to write. There are really a lot of great stories all around me here! I feel fortunate to be among these people even while hating it to my core. This is obviously not one of those uplifting IPR posts. Maybe next week?