I’ve been trying to remember exactly how long it’s been that my body took a turn for the worse. I can’t put my finger on the day it all went sideways (again) for no apparent reason (again). No infection, no UTI, no rhyme no reason just body malfunctioning happening all over the place and confining me to an even more limited space (my second floor) within what is already a limited space (my home).

Once again, it is threatening to make me lose what’s left of my mind.

It calls to mind the Great Relapse of 2017 when I landed myself in the hospital for a few days. I feel almost that desperate but not quite since my second floor is confining but is nothing like the prison ward I found myself in that summer of 2017. That place was a living hell. Not even exaggerating. This place is the opposite of a living hell but it still feels wrong to me no matter how much I try to talk myself into things not being all that bad. I am still barely able to stand up, barely able to walk, barely able to do just about any damn thing.

I had a fifteen-minute conversation on my front porch just now with Granny, my 92-year-old neighbor about how much it sucks to get old (or not so old, but chronically ill). We both look like we’ve seen better days but Granny has birthed 13 children in her lifetime and lord knows how many grandchildren and great grandchildren she has. I’m down to 2 cats. I feel I’ve not done quite enough to achieve this level of decrepitude. I feel like I’m crashing Granny’s party but thank goodness she’s super welcoming and she is even a bit jealous of my fancy walker. “I always almost trip over mine,” she tells me. “I think I lean over too far forward and then I’m going down like a tree in the woods in a bad storm.”  I feel that, Granny, I really do. Walker use is not all fun and games the way it looks in Instagram pics. Sometimes a walker isn’t even enough!

On Friday I had to be driven to a doctor appointment because I knew I didn’t have the steps in me to get myself to the office, parked, to the doctor appointment and back again. That’s probably about ten times the number of steps I can currently take before reaching the limits of my functional reserve. There’s a new term for ya! I learned that one from my good friend Dr. Aaron Boster at OhioHealth. Actually, I learned it by watching his video on YouTube but it’s practically the same thing. In my mind, me and Aaron Boster are buddies. I’ve learned more from him about this MS mess than from my own moderately genius-level specialist with poor communication skills, so Dr. Boster is in my inner circle whether he knows that or not.

Functional reserve is your central nervous system’s ability to handle some sort of insult – be it an infection or lack of sleep or pushing yourself too far and running out of gas for basic life tasks. I’m explaining this poorly. Just go watch the video. Dr. Boster does a much better job of explaining this idea and it was fairly groundbreaking for me because this is what I’ve been struggling with practically since diagnosis. When I push myself to do things that put stress on my CNS – often these are normal everyday things like working or socializing or moving from point A to point B – I often find myself at the end of the day without the bodily reserve needed to do even MORE basic things. Things like getting up and down stairs, doing chores or simply getting myself safely to bed.

For me, it’s always a crap shoot how much energy my body will have after doing something audacious like attending a client meeting in person. Will I have enough energy left to get inside of my house safely? That is usually the $64,000 question. How far can I go before it’s too far? Living alone is kind of important to me so managing my functional reserve is critical to me being able to safely continue doing that. It’s a constant struggle that gets even more dire when my body decides to give up and stop functioning as a body should, as it recently decided to do.

I had that particular doctor appointment to get a shot of cortisone in my left hip to hopefully reduce the mind-numbing pain that settles in my hips during the night, but just getting me there required a significant amount of effort even if I didn’t drive myself. My nephew had to push me in a wheelchair to get to the actual office. I held Clara, my fancy Danish rollator, on my lap because I would need her to help hold me up once we got to the doctor’s office. I was moving so slowly when I walked with Clara it was like my forward motion was undetectable to the naked eye. But I got there and got my shot and then we went to breakfast at a local pancake house. More rollating, so slowly it felt like I’d never get to the door of the restaurant. Once inside, the hostess took one look at me and my struggle and sat us in the very first booth inside the door, minimal walking required. I could have kissed her on the mouth.

As we munched pancakes and laughed about our fun with wheelchairs, I mentioned to my nephew how it feels like I’ve become a giant garden slug. I just blob around, so slowly it barely registers to passers-by that I’m actually ambulating at all. When I get myself into bed at night I can’t flip myself around to get comfortable. I have to cling to the wrought iron headboard to get my stiff body to move. I’ve had to cancel two home massages in the last two weeks because I had no idea how I’d be able to flip myself over on a massage table. How sad is that? At this point my nephew looked up over his second breakfast of bananas foster French toast and said, “I guess you don’t choose that slug life, AB, the slug life chooses you.”

And we laughed and laughed and laughed. That slug life has indeed chosen me. I wish it would move on already. When moving around is so difficult it makes a person not want to actually do it very much which is kind of a depressing way to live. When I think of the fact that this month is so full of medical appointments almost one every week of May, I realize that I won’t have energy to do much of anything else besides get myself to and from these appointments. Sounds awesome, huh?

On Thursday of this week I will be meeting with a physiatrist by the name of Dr. Barbara Swan. I didn’t even know that’s what she was when I made the appointment. I thought she was a doctor of physical therapy but it turns out I was wrong. That’s only part of what a physiatrist does. According to the American Academy of Physical Medicine and Rehabilitation, physiatrists are “… medical doctors who have completed training in the specialty of Physical Medicine and Rehabilitation (PM&R), and may be subspecialty certified in Brain Injury.”  Physiatrists are also often experts in pain medication. I was referred to Dr. Swan to discuss options for supporting my mobility. I need some direction on what the right thing to do might be. Which device should I drop my cash on? What would help me most? So, I’m kind of looking forward to this appointment and kind of dreading it all at the same time. On the upside, though, she seems like she could be the missing piece of my vast medical team so I’m also kind of excited to meet her.

The week after that I am road tripping with my sister to that fair city, that mistake on the lake, Cleveland Ohio where I will be meeting with a Dr. Mary Willis at Cleveland Clinic to get my second opinion at The Great Scott’s suggestion. I have never felt more pressure for a doctor appointment in my life. I am already organizing my thoughts, questions and general agenda for this meeting. I’ve collected all of my scans. I’ve given releases for the records. Hell. I may create a fancy PowerPoint deck like we do for big advertising pitch meetings. It’s all good to go…and I’m so full of anxiety about this particular road trip it’s hard to articulate it properly. I feel like there’s no outcome to this meeting that isn’t going to be a huge disappointment. I’m almost certain of this. I’m not sure how I will handle that disappointment when it hits me. How’s that for realist/pessimist thinking? At least I know who I am. Right? Right.

Then I return to Pittsburgh and the offices of my beloved TGS to see Dr. Liang, the neurologist who is going to shoot my legs and feet full of Botox. Tuesday May 28 is that exciting day and I’m probably most excited about this appointment. I take the highest dose you can take safely of baclofen, a drug used by MS patients for muscle spasticity. It feels like it does next to nothing to help my stiff legs from being in constant spasm. My toes curl under themselves from this spasticity which makes walking even more super fun than it usually is. If this Botox treatment helps me loosen up even a little bit it will be a huge improvement in my quality of life (which at present isn’t all that much to crow about). If I can move my legs more readily and get through a night without mind-numbing spasms in my calves, I might smile a little more because less pain would be cause for smiling. As would muscle-spasm free sleeping. My hopes are probably most high for Dr. Liang. I hope she’s up to the task.

You can see why I’m exhausted just thinking about taking this slug life on the road.

Movement of any kind physically exhausts me to the point of not being able to lift legs off the ground for walking up steps or walking even on flat ground. I may be at my physical lowest point since diagnosis and that is saying something. Things are progressing either way too fast or not fast enough. My life feels like it’s in the worst kind of limbo where I’m not sure if this current spell is a new normal or if it’s going to ease up so I feel more human again soon. Before this hit I was feeling borderline good! Well. Good for me. Good-ish. Not terrible? Anyway. It was a lot better than this. Almost 2,000 steps a day, good! I won’t even tell you what my daily counts have been since this flare started. It’s that bad.

Actually, I don’t even know what to call these last couple of weeks! Is it a flare? Is it a worsening? Is it a relapse without MRI activity? Is it a pseudo-relapse brought on by a pseudo-infection I turned out not to have? Is this what progression feels like? Does progressive MS usually progress this quickly? Do I have progressive MS? Do I have something completely different? What the hell is actually going on up in this messed up slug brain? Will this slug life have me for the foreseeable future? Can you say “hell no” to Slug life?

All due respect to Tupac, I’d like to say no thank you to this slug life. But just like he said, this slug life chose me and I have to figure out how to make the best of it somehow even if it means another 17 doctors in another 17 states. That’s just the way it’s gonna be.