We used to call it Happy Time, those few hours after work on a Friday, sometimes on another random day if we’d had a worse time of it than usual in the office that day, but it happened around 4PM when we’d brazenly walk out of the office together – my best friend Sandy and me – because we were the bosses and goddammit we’d worked for a really long time to earn the right to enjoy those few hours before the bar got too crowded.

Sometimes we’d stop in the lady’s room before we left to check make-up and pretty up a bit which was actually more than a little hilarious because we’d for sure be the youngest women in the bar, our favorite bar, by a good 10, maybe even 15 years and we had no interest in meeting guys at this bar. It was like a bar out of the movie Cocoon, where most folks had retired a good ten years ago but still looked forward to gussying themselves up to troll the bar for blue-haired singles who may not have to work anymore but still loved them a good martini at happy hour. We were regulars just like they were. We got to know some of them over the years we hung out at the Cocoon bar.

There was Diane, the stylish, tall, thin 65-ish woman with perfectly coiffed hair and impeccable makeup wearing an expensive outfit color-coordinated from head to toe, always dressed to the nines. We met her on the night she was there meeting a date from a recent Match.com hookup. Our Cocoon bar was usually just the first stop on Diane’s Friday night bar hop. She’d cut out around 7, right around the time Sandy and I would be paying our tab, but we’d be excited to get home before dark to put on jammies and relax with our respective kitties. Diane would be heading to another bar on up the highway where local bands played into the night and the scene got a bit more action than our martini bar. There was the guy who was a dead ringer for Ted Kennedy. The happy hour when I succeeded in snapping his picture when he wasn’t looking made for a lot of laughs. Dead. Ringer. Ted Kennedy sipping on an expensive micro-brew. The bartenders knew our names, our back stories and our drink orders. We’d text or call ahead with the high sign that we were on the way and Kim or Bobby, the two regular Friday night bartenders, would put glasses of water and place settings in front of our end-of-the-bar seats to prevent anyone from getting to our game and sitting in our seats before we could get there.

Sandy and I just wanted to sit at the end of the bar on our reserved high-bar stools in front of the video game unit where we’d look to see if anyone beat our scores from the week before on our favorite games. We were usually first in our favorite games but we had one particular bar patron who liked to thwart us in our quest for bar video game supremacy by one-upping us on a particular game, the one that resembled Mah Jong. It drove us pretty nuts. We really wanted to beat Diane at Tai Play and we’d play and play until we bested her and got to put our name in the number one spot. Our shared handle was BANDS, not bands but B and S, those two women at the end of the bar every Friday sometimes laughing, sometimes bitching, sometimes crying then laughing again. Happy time was the best time. Especially because we could have our drinks, play our games and usually make it home before it got dark for couch surfing in our respective homes wearing our respective jammies. It gave me an excuse to look cute for a few hours while spending time with my favorite person and that’s all I needed to end a week right.

It was during one of those Friday happy times when I first noticed symptoms of spasticity. Of course, I had no idea at the time what spasticity was but I remember mentioning to Sandy about this weird trembling in my legs that happened sometimes after we’d arrive at the bar and got out of the car. When I stood up, my legs would do this strange shaking thing – I had no other, better words to describe it. I mentioned it to Sandy more than one time. I made a joke about it more than one time, also. I joked that I hoped I didn’t end up falling off of my ridiculous 4-inch high platform designer sandals while my legs did their involuntary and unannounced shimmy. That weird shimmy started long before my official diagnosis. I recognize it now as a symptom but back then it was just one thing on an ever-longer list of crazy ass things that were happening to my supposedly totally healthy 45-year-old body.

I couldn’t have known at the time what a big role spasticity would play in my life.

It sounded relatively non-threatening! So I’d be a little stiff from time to time! My muscles wouldn’t play nice every now and then, but how bad could that be? I would stretch and work it out. I’d work around it. When it began getting a bit worse, much worse than my original little leg shimmy, The Great Scott put me on a muscle relaxer called baclofen. I took 20 mg twice a day and it helped a bit. I’d still turn into the Tin Man when the weather got very cold but it was manageable. Spasticity was just another annoying thing about having MS. Not nearly even in the top three position of the most annoying things about my MS. I barely even thought about it.

Then I had round 1 of Lemtrada in November of 2018 and all hell broke loose.

All of the sudden my spasticity morphed from a little stiffness every now and then to full on spasms that made my legs jolt straight out in front of me every time I laid flat on my back, wracked by what felt like a Charlie horse on steroids but in both legs from toe to hip. Sometimes if I laid in one position for too long, my legs would go stiff and I’d have a good minute, sometimes longer, when I’d be completely unable to move my legs at all. This phantom paralysis freaked me out a whole lot. I’d have to contort my body into a position where I could reach my legs with my arms so I could manually lift one leg into a position that allowed me to move. It made me feel panicky. It still makes me feel panicky every time it happens.

Spasticity has become the bane of my existence. It prevents me from lifting my legs to climb steps. It prevents me from lying in bed in any remotely comfortable position because the wrong position will set me to spasming full on. I’m on two medications now for spasticity and while they definitely help, they also definitely do not stop me from being taken on a frequent muscle spasm ride that I never want to go on again. My bed used to be one of my favorite places on the earth. Now? I dread it. When I lay in it now I know it’s inviting the muscle spasms to pop up and take full control of my legs, rendering all effort to be comfortable and to sleep basically impossible.

Now, to help ease my spastic legs, I have to wake up in the middle of the night to take a couple of pills in the hopes that those pills will render my muscles cooperative and not wake me up with waves of mind-numbing pain when it’s time to get myself out of bed in the morning. After I down the pills, I have to stand up and do some stretching. It’s 3AM and there I am with my yoga strap trying to work out my calves, my hamstrings and my hips. I lace my fingers through my toes that clench up like tiny little claws. I have very small toes. I had no idea something so small could hurt so much. Color me informed. Once I complete my pill popping and my full body stretching (and usually a trip to the bathroom to pee), I try to lay back in bed and get myself back to sleep for a few hours – at least until 6AM or so when I have to go downstairs and feed the cats. Once that’s done, I go back upstairs to sleep for two or three more hours until it’s time to wake up feeling paralyzed (again) to start my actual work day.

Between the medication and the sleeping in spurts, I’m so exhausted all of the time I can barely function. I have every conceivable support pillow/foam support device a person could possibly buy to the point where my bedroom looks like a nursing home or a physical therapy gym. None of them really make any difference. I still wake up in screaming pain almost every single day. I count the hours off on my fingers to tell me when it’s OK to take my next dose of my two different muscle relaxers, like a full-on junkie. I can’t live without those pills! But I have to be careful I don’t take too many and make it so that I run out before I can get my prescription refilled again. An empty pill bottle throws me into a stone-cold panic.

I had Botox in my calves and toes about a month ago and it did basically nothing. The nurse who works with the Botox neurologist told me they suspected the dose the insurance company approved for me to start with wasn’t going to do squat. It kind of sucks that you have to do something that medical professionals pretty much know won’t work just to get the chance to get a heavier dose the second time. I’m scheduled for that appointment in August but I’m going to call on Monday to see if we can’t move it up. Walking around on tiny claw toes is not fun. I’d like to make that stop sometime soon, please and thank you.

I’d be a liar if I told you that this latest combination of summer heat wave and body in full on spasms most of the time isn’t getting the best of me. It would be awesome to hide from the heat and just stay in bed until it passes! But bed hurts. Out of bed hurts. Everything hurts. My new medication for pain makes me a little bit loopy so I can only take it at night and it does nothing for the muscle spasm pain. So many different kinds of pain! So many pills that only help just a tiny little bit. I keep wondering if this is my new normal but then I try to stop myself from wondering that because just entertaining that thought depresses me to such an extent that I’ve been randomly bursting into tears at night, during the day, while watching TV or trying to read. I’ve not even been able to really enjoy reading! I’m stuck on book #10 for 2019 but every book I try to pick up to stop my slump ends up tossed aside. Nothing distracts me. Nothing.

Remembering happy time and the days when my little weird shimmy thing was just that and not some creeping disease-caused effect of my body turning to stone from the toes up makes me long for the days when I didn’t know what was happening to me. I can’t even believe that I even just typed those words but sometimes it feels like the second we gave these weird symptoms a name, the minute we called it multiple sclerosis and it stopped being those little odd things that happened to my body from time to time, that’s when shit started rolling downhill so quickly it dizzied me with its momentum.

I want my old life back when I wasn’t tracking time on my fingers to note the time for my next pill. I want to be blissfully ignorant again! I want to be able to walk in my own house without grabbing furniture, walls and the occasional cat to keep myself from falling over. I don’t want to need a rollator in my damn house. I don’t want to have to figure out which goddamn motorized wheelchair to buy. I want to be happy again. Blissfully unaware and happy, sipping my Chardonnay while trying to beat Diane at video Mah-Jong while wearing cute clothes and four-inch platform heels sitting next to my bestie, laughing about the patrons in our Cocoon bar. I want to love my bed again. I want to stop being a person who can’t stop herself from sobbing just thinking about how things used to be. I want to stop wishing for what can never be and start figuring out how to want to do things again. Any things. Any things at all.

I don’t yet know how to do that. I keep trying to have faith that a time is coming when this disease won’t occupy my every waking conscious thought but I don’t know if that time is ever going to come for me. Someone once told me that the first three to five years after diagnosis were absolute hell and after that time, things would start making more sense. Here I am chasing down my fourth MS-versary wondering if that, too, no longer applies to me much like the notion of remission.

Maybe a nice day will come soon when it’s not 90 degrees and 100% humidity and I can take a drive with the top down and sing myself out of this soul crushing funk. Something has to give. Right?