I’ve been spending a lot of time at home, as you know, while I am recovering from Round 1 of Lemtrada that I had the first week of November. Home, as it turns out, isn’t even very safe for me these days but it’s safer than the alternatives right now, so here I stay.

I knew when I got into this Lemtrada treatment that it was a big step. I knew it was going to be a long haul. I knew that there was probably a good reason why people aren’t lining up to have this treatment when first diagnosed and why insurance makes you suffer before they let you in the club…it’s a big bad drug, Lemtrada is. And MS is a big bad disease and I was tired of fighting it with pansy drugs that my MS seemed to laugh at. I mean, imagine calling drugs that straight up come with death warnings pansy drugs! But there you have it. My MS is a bad ass. She refuses to be ignored. She laughs in the face of your run of the mill monoclonal antibody infusions like Tysabri and Ocrevus. She is a force to be reckoned with. The bane of my very existence, she is.

The new post-Lemtrada me is pretty pathetic, you guys. I can barely move. Getting around my house is an adventure, one where if I happen to catch a glimpse of myself in a mirror whilst stumbling around my home I find myself wondering, “Jesus…Who’s that poor old crippled lady gimping around my house?” Oh wait. That would be me. Fucking hell.

Even sleeping isn’t easy in this post-Lemtrada world. My body has become a thing that doesn’t move around so well so sleep is what the doctor ordered for the most part, sleep and lots of water. So, I sleep and I drink lots and lots of water because I’m that kind of over-achiever patient but I’ve found that if I lay down for too long or sit for too long without standing up or stretching, my legs just stop working at all. When I say “stop working” I mean I literally feel like I’m paralyzed.  

The first time this temporary paralysis hit me was on Lemtrada Round 1 Day 1. It wasn’t a good scene. I wrote about it at the time and it freaked me out so badly that I ugly cried like a champ right there in the infusion room. But it went away! I didn’t expect it to be a regular occurrence. Color me informed. It seems like I have to be in a constant state of movement, but not too much movement or I fall down. It’s a delicate balancing act. Man, I’m all about the bad puns today it seems, but I digress.

The first time this phantom paralysis hit me post-Round 1 was when I woke up one morning a few weeks ago feeling like I had to pee urgently. Not very unusual when you drink more than a gallon of water a day, but still not a pleasant way to greet the day. As my brain began to come to life and my body started to realize its urgency to urinate, my legs weren’t responding to my unspoken direction to swing over the side of my bed. Even as I swatted felines off of my burning bladder and willed my body to move with all of my might…nothing happened.

It’s obvious what I did next. I laid perfectly still with a burning bladder and freaked the fuck out. I still have some semblance of abdominal strength so I was able to lift my upper body off the bed a few inches, enough to see my unmoving lower extremities and loudly order them to wake the hell up.

Nothing happened. I imagined how much it was going to suck if I couldn’t hold my bladder long enough to get to the bathroom. I imagined how I’d have to call for help from my pee-soaked bed. I’d need help getting out of my wet pajamas, while keeping the cats away from my soiled bed. I’d need help changing the damn bed and laundering the bedding and re-making the bed. Not making it to the bathroom just seemed like the worst thing I could imagine but my legs appeared to be not connected to my actual body. I continued to lay there, borderline hyperventilating, while my bladder began to pound. Bad things were about to happen.

I lifted my upper body enough to lift one leg with my arms. It moved like a dead thing and dangled over the edge on the cusp of a massive muscle spasm in my calf but I considered that a good thing because a muscle spasm was at least a feeling. I pushed the other leg closer to the edge with my arms, then used my fancy wrought iron head board to hoist my upper body upright. My legs were dangling and spasming like mofos but I got them planted on the floor. If I peed now, I’d not soil the bed, that was my first thought upon standing. Eventually I inched one dead leg forward and then the other and little by little I lurched to the bathroom, clutching walls, furniture and the occasional cat to get me there.

Once I got myself back up off the toilet, I had a chance to reflect on how freaking scary that just was. It had to be a fluke. I got myself down the steps toward the coffee and put the whole horrible episode out of my mind. Until a few hours later when it happened again after my first hour long conference call of the day, once again when I realized I needed to pee I went to move my legs to get up from my chair and nothing happened. Now I was gonna pee on my brand new awesome giant green chair! What the motherfuck?!?!

To make this long story short, it wasn’t a fluke. This has been going on for weeks. I have to jump up every hour mostly to pee but my legs sometimes choose not to do my bidding. It can happen at any time, really.

One night it happened while laying on my couch enjoying an evening of Netflix and chill with my favorite person.

I was watching The Haunting of Hill House and it was nice to have a scary show to distract me from the shitshow that was happening in my own house. But getting up each hour to pee, I would go through the same leg paralysis routine every single time. The fear of almost peeing my pants has become my constant companion. My routine of drinking a liter of water every couple of hours is what I’m supposed to do to help my Lemtrada ravaged body recover and I am following orders on that front. My skin looks freaking amazing. My legs? Not so much. They look like any normal pair of legs, actually, but they don’t carry me up the steps to the bathroom so well. Or from room to room.

One night the episode I was watching created a weird parallel with my actual life when one of the characters on The Haunting of Hill House experienced sleep paralysis.

I could hardly believe what I was watching! Nell lay in bed, groaning through closed lips, looking desperately down on her lifeless body that refused to move while some horrible specter, the so-called bent neck lady, hovered over her or near her while she just mumbled in abject terror, her body refusing to budge. Guess who had to pee at just that moment? Guess who couldn’t move her legs to the floor? I looked up frantically hoping not to see my own bent neck lady or some other specter like the ghost of 25-year-old-bartenders from hookups past hovering over me on my couch while I willed my legs to move. Nothing. No terrifying ghostly specters so I was in better shape than Nell, but my legs still refused to budge. I eventually made it to the bathroom upstairs but it was harrowing even without the ghost.

After three weeks of this rather irritating phenomenon not letting up, I shot off a panicked email to The Great Scott to beg his wisdom. What the hell was I supposed to do with this new development in my life? Is this normal? Will it stop? I got nothing back for 24 hours. I began to panic. Every time the paralyzed leg thing happened I felt like screaming. How is a person supposed to live like this? I was desperate and I did a desperate thing. I turned to the internet.

This is hardly ever a good thing to do but I didn’t just go to any old site on the interwebs. I went to the Lemtrada support group page on Facebook and posted words I was shocked to see coming from my keyboard on an online support group page:

I’m almost two months post round one and they’ve been the worst two months yet of my MS. I can barely walk. My legs are so weak and heavy moving around is extremely difficult. I keep seeing people say “keep moving” but I literally feel like my legs are semi-paralyzed. I’m so frustrated. I’m trying so hard to be patient and not panic but this feels so bad! I’m barely able to leave my house I’m so weak and unsteady on my feet. Yeh. I’m kind of panicking. I cannot lie. I’ve yet to have any actual “good” days. Does this mean anything? Or do I just need to be patient? How can I move around when I can barely move inside my own home? Ugh. Guys this is so hard. Apologies for the panic post. I just need some moral support I think? 😕

Who even does things like that? I was ashamed of myself and immediately regretted my weakness to post in an online group to a bunch of strangers what I should be getting from my health care team. I was a sad, pathetic woman to go to such extremes

Shockingly, it was the best thing I’ve ever done. Well, that may be somewhat hyperbolic but it was a really good thing, in retrospect.

People came out of the woodwork. They told me their own stories of temporary paralysis. They told me not to panic. They explained that they had really, really bad experiences too but they got better. Some people didn’t get better for a really long time. Some people needed Lemtrada round 3 (Jesus…Round 2 has me freaked out enough, now people sometimes need a third hit?). But the horrifying mysterious pain and paralysis wasn’t permanent or unheard of. It passed. Now nothing is to say that I won’t defy the internet and remain intermittently paralyzed forever but just knowing there were people out there who had been where I am, who came out the other side and were there telling me to hang tough – call me foolish, dear BBADdies, but it made me feel so much better! It didn’t make my occasional paralysis any better but it made me feel less panicky. It made me calm down ever so little but enough to keep myself from freaking out every morning when I may or may not be able to get myself out of bed.

Two days after I sent the email to TGS, I got a reply from him (I’m writing about that in another post…stay tuned) but I ALSO got reply from Evil Nurse Carol. When I saw her name in the message center on My Chart I steeled myself to be pissed off and opened her message, fingers ready to fire off a reply dripping with righteous indignation and sarcasm. Here’s what she said:

RE: Visit Follow-Up Question

Happy New Year to you too! Don’t get discouraged with not feeling well. This is a VERY strong medication and most people do not feel well for 3-4 months after the first infusion. It is like getting chemotherapy for a malignancy.

Hang in there kid.

Wait, what?

We’ve progressed to the point in our relationship where we have pet names for each other now? I mean, I’ve always had one for her but she doesn’t know that. She called me “kid!” It almost sounded, dare I say it, affectionate? What am I supposed to do now? She can’t be Evil Nurse Carol when she tells me to “hang in there, kid!” She is teetering dangerously close to a nickname evolution. Do I have to call her Only Occasionally Evil Nurse Carol, now? It doesn’t quite roll off the tongue.

It threw me off, reader, I cannot lie. I’m still not quite over it. But hang in there, I did, and I’m still hanging in there. Between the help of the benevolent Internet support group comments, the actual response from TGS himself AND kind words from OOENC (see? I just doesn’t work as well), I felt myself reassured that while this might well be the longest two years of my damn life – on top of the longest three years of my life I’ve just experienced since my MSversary on December 1 – there might be some kind of very dim light at the end of this long dark frightening tunnel. I will get through this. Somehow.

It’s only a matter of time before ENC is back to her snippy ways. And maybe it’s only a matter of time, too, until my occasional paralysis is a thing of the past. A bad dream. A haunting that I don’t like to think about but one that did eventually move on. Maybe.