There are sayings out there that get tossed around in the MS/chronic illness community that are intended to help folks with MS have perspective on the unique nature of this relentless disease. You probably hear them a lot if you’re one of the lucky ones in the chronic illness club, things like “it’s a marathon not a sprint,” and “you’re playing a long game,” and “don’t get caught up in the small stuff, keep your eyes on the prize.”

I’m sure it’s not big surprise to you that I loathe these sayings.

It doesn’t help that most of them are sports or activity focused. I was for sure the girl who dreaded gym class in high school and it wasn’t just because the nuns made us wear hideous gym uniforms, a navy-blue cotton jersey shorts onesie kind of thing that was horizontal blue and white stripes on the top. I’d show you a picture but then you’d want to burn out your own eyes and that wouldn’t be nice. Me and sports are not really friends so these analogies that play to our intense human desire to persevere and win at something fall decidedly flat on my ears. I wouldn’t run a marathon if you told me there would be a brand-new set of legs at the end. I know myself too well. I wouldn’t run anywhere even if I had two good legs for doing that kind of thing. Maybe if I was chased by a pack of rabid hyenas?

Nah.

When I find myself in a swirl of no-good-very-bad-things happening on the MS front, I try to pump myself up by reminding myself that I’m playing the long game and my brain instantly responds to itself by thinking, “Well, fuck this, let’s just not play this stupid game.” Then I’m right back where I started. Wondering how this always happens, why does everything have to be so goddamn hard, and where do I get off this terminally long ride that I don’t remember asking to jump on.

I have been working so very hard to rebuild strength after a year of relative inactivity caused by my extreme spasticity and subsequent surgery for implanting my baclofen pump. I have a fantastic PT/OT team both of whom know how much I yearn to get back to being able to do grown up things like walk down my front steps to my car and take a nice drive with the top down on a gorgeous summer day (not too hot and humid but just right). They work me hard and I challenge myself accordingly in ways that are almost impressive to me. I never relate to words like “warrior” or “fighter” etc. for describing the MS experience because, another big surprise, I’m a peace-loving, relaxed kinda girl. Those words are far too competitive and active for me but when I’m doing my squats wearing a 20-pound weighted vest, I cannot lie. I do feel like a fighter. I feel like I refuse to give up. If my MS is a relentless bastard, I will be an even more relentless stubborn old woman. MS brings this out in me regardless how hard I try to resist.

I was making progress. I could see myself getting stronger, gaining more independence, enjoying the forward motion that had me seeing a very faint glimmer of hope that I could see a day in my mind’s eye where taking a drive on my favorite back roads on a summer day might actually happen. I could see myself driving to my office in downtown Pittsburgh and having the hotel valet across the street unload my motorized wheelchair so I could motor on in to the big wide world where I used to feel so integral. I knew I had more work to do. Progress is so slow when coming back from something like a year or so of not being able to move very well. Patience is not optional. I mean, you can try to be impatient, I’m sure you probably know I try all of the time because that’s how I roll, but you will likely fail as I have. Patience is adamant. Patience is insistent. Patience will not be ignored. I was even allowing patience to creep into my psyche, helped out by a global pandemic that inexplicably thrust the world of “the normals” into a tail spin that made patience a pervasive requirement even for them.

I hit a brick wall about three weeks ago.

My legs, formerly open to taking direction from my brain to move, just decided they were over that and refused to lift off of the floor. When Aaron my PT would ask me to walk across my first floor, 42 feet in one direction of walnut stained hardwood floors cleared of furniture and rugs to accommodate my physical therapy gym needs, I would shake and stutter and feel my toes catching on the floor, the squeal of rubber treads from my Adidas betraying me so Aaron knew, too, that my feet were dragging.

One day he decided it was time to challenge me to try walking with trekking poles and not my rollator. He was completely confident in my ability to do this, as I would have been too a few weeks ago, but he wasn’t living inside of my body where my leg muscles had started to feel like they were slowly freezing up from the inside. “I don’t think I can do this,” I said to him. “You never think you can do new things and you always do. I’m right here. I won’t let you go down,” he said. I did the 42-foot trek. I was blind with terror the entire time. I trust Aaron wouldn’t let me fall, but I also could feel the leaden hesitance of each foot as I silently commanded it to lift off of the floor to move my body forward.

Something is definitely wrong. Showers are again a nightmare. Steps are out of the question. I actually got stuck in bed one morning when my legs refused to bend on the edge of the bed to allow me to get up. The front porch is out of reach even with my mini-threshold ramp. I spend time in my big chair looking out the front door cursing my central nervous system for making everything so goddamn complicated.

My physiatrist is Dr. Franz affectionately dubbed Franzi by me whilst in the hospital for a month working together on getting my baclofen pump programmed correctly for delivering the right dose of liquid muscle-enabling juice directly to my spotted spinal cord. We’d gotten to what we thought was a good place with my pump settings but I have to be honest, I was always a bit suspicious because there’s no guide book for programming your pump dose. It’s all trial and error. Trial and error is easy peasy when one is in the hospital surrounded by helpful folk to help you if you get it wrong but I’m home now. My intense fear of going too heavy on the dose and waking up 24 hours later like a giant jelly fish inexplicably finding itself in my bed and not the ocean has prevented me from asking for a bit of a bump. I was working through it with physical therapy. Things were moving, slowly, but they were moving. But when I started having little tiny cramps in my feet in the morning when I woke up and strange calf spasms that had been a thing of the past, I knew it was time to ask for an adjustment. I had to go in for my refill anyway, so I geared up for a change. Things would get better. I’d get back to my former state of ability and get back to work improving even more.

The process for adjusting the dose of my baclofen pump involves me holding a small device that looks a bit like a white plastic remote control against my belly where the pump lives. The remote device connects my pump to the programmer that is housed on a small Samsung tablet. This is different from the older model Franzi and I used in the hospital – that one looked like a giant 1980’s cell phone and the remote connector was a gray plastic disc, about a ½ inch thick that I’d hold against my pump. The adjusting part is done by Franzi. He taps furiously on the screen, either with his finger or with a skinny gray stylus depending on which machine we’re using, making changes to various details within the programmer while we chat about what we think makes the most sense.

This chatting about what we think makes the most sense gives me enormous anxiety because of my intense fear of becoming a giant jellyfish while being in my home alone, helpless to function. Once we reconnect with my pump after he makes the various changes the new dosage instruction takes about 24 hours to activate. Ideally Franzi wants me to let it ride for 48 hours before we consider another tweak. That also involves challenges when one is outside of the hospital environment. I’ll be home, possibly alone, when the newness sets in so if something goes haywire there’s going to be a panic call – to my sister or my brother or my nephew – depending on who might happen to pick up their phone possibly in the middle of the night to come to my rescue to prevent me from doing something terrible like peeing my bed because I’ve turned into jelly and can’t move. This horrifies me to such an extent that I agreed to allow the installation of the dreaded potty chair back into my house but instead of in a corner of my dining room where it’s relatively out of sight, it is now positioned directly next to my bed in the hopes that I might be able to get to it even when in a semi-gelatinous state.

Every time I wake up the potty chair stares at me without eyes. It stares at me every time I walk into my beloved bedroom that now looks more like a room in a nursing home than the location of many the illicit hook up of days gone by. I haven’t had to use it yet. I’ll drag dead legs to the fucking bathroom about 20 feet away from my bedroom if it kills me because once I use the damn potty chair someone has to dump it out and that someone can’t be me. I can barely move myself while clutching my old-school metal walker for dear life let alone carry a bucket of urine to the bathroom. I can’t let that happen short of an actual emergency. I just can’t.

This brings me to the point in my story where I tell you that I’ve had three adjustments to my pump dosage. First, I got a five percent bump on the day I was in the doctor’s office for my pump refill anyway so it was fairly convenient to accomplish. I had help dragging myself there and back anyway. The doctor who did my pump refill did this adjustment. Dr. Wang felt like 5% was aggressive but we did it anyway. Needless to say, I woke up the next morning in the same condition I had woken up the day before. That 5% didn’t do squat. After another 24 hours of waiting for some positive change, I gave in and called for an appointment for another adjustment.

I wish I could tell you effectively using excellent detailed visceral words how difficult it is for me to get back and forth to the doctor when I’m in this condition. I will try but I will fail. First, I need to get out of my house and down the porch steps. I can step down with my right foot but my left foot often refuses to follow so I use all of my will to drag it down to the next cement step where it often lands directly on top of the right foot requiring someone to help position it properly so I can once again move my right foot down another step. There are four steps to the ground and I am tense with effort for each one. Once I make it down, I then have to ambulate toward my car, just across my grass about 15 feet. Easy, right? But no. Not at all. The ground is uneven under the grass and my rollator finds itself leaning to one side or the other at certain points when I somehow achieve moving one foot forward. One isn’t supposed to clutch one’s rollator for dear life when walking. That’s a mobility aid no-no. But what choice do I have? All I have to do is get to the car and inside to sit. It’s harrowing. By the time I get to Franzi’s office I can barely move at all hence why a nurse meets me out front with a wheelchair to get me to my final destination.

I’ve done this routine three times in June. First on June 3 when I went in for my pump refill when we did the first 5% bump. Then 48 hours later on June 5, I found myself needing to do the whole thing again when that 5% didn’t do squat so Franzi hit me with a 10% increase explaining that Dr. Wang had been too conservative. He never does an increase less than 10% on me. Good to know! I’m guessing you know what happens next. Forty-eight hours later I needed another bump but this time it was difficult to tell if I needed to go up or down. Here’s the rub. Too much medicine makes you feel weak, but do you know what also makes you feel really weak? Dragging around stiff, heavy limbs for 48 hours. I thought I went too high.

Then I explained the midnight phenomena and things got more complicated still.

On Wednesday and Thursday night I had my nephew Alex with me just in case I turned into a squid at midnight because my pump dose goes up at night when my spasms usually get worse. I was aware of this program setting and I didn’t want to get stuck not able to move once that time arrived so I asked Alex to hang out with me just in case. We sat on my bed watching Netflix until midnight hit when I’d then get up and go to the bathroom to test my new dose. And whoa. My legs moved almost effortlessly. I could easily weight shift and lift my leg forward hitting the floor with my heel and not my toe each time. Just for kicks, and to prove I wasn’t crazy, I stood in my bedroom where Alex could see me and attempted to lift my knees – kind of like the motion one would use when climbing a step. I held on to the plastic handles on my medicinal metal walker and prepared to hoist my usually immobile right knee upward when crack. My knee hit the cross bar on the walker. I’d lifted my leg that high. Then I did my left leg and hit the top cross bar on my walker again. So, I did it ten more times – five times on each side. It was like magic. But when I’d wake up in the morning my legs had gone back to their usual stiff condition and I’d find myself wondering if it had actually happened at all.

It seemed like a simple decision to me. I asked Franzi to program me at my midnight dose for the full 24 hours. I felt great at that dose. It should be easy. It turns out that the midnight dose is 11 micrograms of baclofen. It then switched to 8.2mcg at 8am and stayed there until midnight again when it went up to 11mcg again. But it wasn’t that easy at all. Franzi explained to me that increasing my daily dose to 11mcg for 24 hours a day was way too high of a % increase within a 24-hour period and he feared I would experience life as a jellyfish if we did that. I pushed him pretty hard on this point but his talk of becoming Jelly Girl scared me a lot so somehow, I found myself agreeing to another change. We agreed to see how it went at a steady lower dose of 7.74mcg for 24 hours.

When I got home and did the math, I realized we’d actually decreased my overall dose by about 10mcg. How had I agreed to that? I agreed to it out of sheer frustration with the trial and error reality of the situation, because I was sitting in that wheelchair in that stuffy exam room wearing a goddman mask that made me feel like I couldn’t breathe at all for nearly an hour going around and around about what stiffness felt like and what weakness felt like and becoming extremely confused because they both feel a lot alike. I also agreed to this change because I’m a writer with an English degree who can’t do even basic math in her head. So, sue me.

That was Monday June 8. It’s Thursday now and I’m here to tell you how much I miss my midnight marching. And operational legs that will move reliably. I’ve postponed physical therapy for the week because I find myself physically exhausted by the activities of daily living and I don’t want to get so tired that I fall and hurt myself. I could barely shower this weekend and I had a lot of help. I can barely walk well enough to get outside on my porch and back inside again. The weather broke yesterday finally and it’s officially no longer Hades hot and humid outside. It is in fact a gorgeous, dry and sunny 78 degrees and I am sitting in a chair looking outside cursing my central nervous system. Again.

Oh. And mentally preparing for my next adjustment appointment tomorrow at 2PM when various people will assist me with the task of getting back to that exam room to decide on another new plan.

I don’t tell you all of this for advice because I know what I have to do. I’ve agonized for nearly all of the hours since this process began on June 4th about all of the things. About selling my house, moving, getting some kind of better flatter living situation, or a ramp an external stairlift or whatever and even hand controls for driving my goddamn car. I know there are ways to make my situation at least marginally better. Believe me. I have obsessed and am currently obsessing more about all of those things. But I know what I want to do tomorrow and I’m not ready to give up yet. I am not ready to let those steps beat me. I’m at the beginning of this whole baclofen pump experience and I simply cannot throw in the towel at the beginning of the damn race.

See? Even I can’t avoid the sports analogies. That’s freaking annoying as hell.

My point in telling you this long, sordid, likely very boring story is that the relentless nature of this disease brings me to the point of panic so often it almost feels like my normal state of being these days. I have panic in my heart all day nearly every day. Every time I get up to walk and my legs lock like frozen tree trunks, I panic again.

When my eyes open in the morning I wish for a new day with semi-flexy operational legs and that hasn’t happened yet but it might happen this weekend after my appointment tomorrow and I have to keep that in my mind’s eye. I have to remember that even though it feels like I am missing out on life entirely, even though I can’t shower alone, even though I’m sad almost all of the time, this can’t be how my story ends. It just can’t be.

And that’s how I keep panic at bay. Remembering hope. No matter how silly it feels, under these circumstances. I try to remember hope.