Insomnia. If you know, you know.

I have to be honest, until last year, I had no idea what it really was. I mean, I knew that insomnia was when someone couldn’t sleep, but I never truly understood someone not being able to sleep. How does that even happen? What the heck? It’s not that hard. You lay down, close your eyes, and BOOM, you are out until morning. It was a concept I couldn’t wrap my head around because I had never experienced it. I have been blessed – I can fall asleep fast, almost anywhere, and can sleep through just about anything. It was heaven. That is, until last year when it all turned to hell. Only now do I truly understand the meaning of the word, insomnia. It sucks, and I wouldn’t wish it on anyone. Well, I actually have a few that I do wish it on, along with explosive diarrhea while stuck in traffic, coupled with uncontrollable sneezing, but that’s a story for another day.

I was an early-to-bed kind of kid. Bedtime was 9:00 p.m. in our house, and I was happy to oblige. My mom likes to talk about how adult friends and their kids would come over, and if it got later in the evening, I would put my pajamas on and pretty much say goodnight. Nothing got between me and my sleep. This was pre-cell phone and internet days, so shutting your brain off and falling asleep was much easier, and I took full advantage of it. And once I was out, let me tell ya, I was out cold. No background noise, no fans, no music, no white noise machine, just silence and the occasional sounds of the old house we lived in. Built in 1948, it had lots of sounds – creaking, popping, tapping, you name it. It was normal, comforting, and relaxing to me. Perfect for a wonderful night’s sleep.

Turns out, my husband and I couldn’t have been more different when it came to sleeping habits. Where I was used to sleeping in silence, my husband couldn’t sleep without some sort of background noise. And even with that, he would wake at the tiniest sound, leave bed to investigate, and then struggle to fall back asleep. Whereas I could sleep soundly through a home invasion by elephants during a thunderstorm that violently shakes the house while fireworks are going off in the next room. We were night and day. So, married life began with me adjusting to the sound of a box fan running all night, and him adjusting to the fact that I can sleep through, well, anything. Almost 25 years later, I have adjusted to the sound of the fan (and can’t sleep without it now), and he still wakes at every sound, most turning out to be nothing. Well, except for the time he thought he heard something running through the house. I’ll give him some slack on that evening. He did indeed hear squirrels running through the house. Yes, squirrels. Plural. Fluffy little bastards.

My entire life, sleep never eluded me. Until I woke up numb in the spring of 2022 and then, in the blink of an eye, it was gone. My restful nights came to an abrupt end and still haven’t returned. In the last 549 days, I have slept through the night twice. You read that correctly. Twice. Numero dos. And those two times, I enjoyed a restful and complete night of snoozing because I had been electrocuted and broken. Literally. I’ll get back to that shortly. But let’s rewind first.

Quick summary. Girl wakes up numb. Girl goes to doctor. Girl finds out she has MS. Plot twist! That wasn’t the hard part. Yes, sleep became a little more difficult following my diagnosis, but it wasn’t the cause of my debilitating insomnia. That, my friends, was courtesy of my employer. If you have been a regular reader, then you know the story. Company girl has worked for 20+ years is sold. Owner that valued and respected girl, retired. Company now left in the hands of evil sibling. Evil sibling doesn’t like anyone associated with retired owner. Evil sibling teams up with evil henchmen to create an evil empire. Evil Empire searches for ways to push those out they don’t like. Most leave on their own. Girl stays. Girl likes her job. Girl really likes her salary and health insurance. Girl tells employer she has MS, thinking it might offer some protection. Evil Empire doesn’t care and plots to eliminate girl. However, the plan is not a quick end. It is carried out as a slow, painful, agonizing, and disturbing process. Girl suffers immensely.

As much as I would love to outline every single incident that occurred, and publicly throw each and every person under a bus, I’m going to skip those details, at least for now. I realize how I have moved on and how much happier I am when I start reliving it. It makes me sick to my stomach to think about it too much, which is what is happening as I write this. I’m nauseous, my anxiety is building, and my heart is palpitating with the memories. Sometimes I think to myself, maybe I am remembering it wrong, or maybe it didn’t really happen like that. Then, I read over my notes. Pages upon pages documenting the wrongdoings committed by those that I had been friends with and worked for/with for years. Those who should have been some of my biggest supporters. All it takes is a quick scan of the information. It was as bad as I remember.

It started slowly. Small changes here and there, but all together they caused my stress level to rise. When I adjusted and carried on, more changes started coming, these a little bigger, and a little harder to handle. Again, I adjusted and carried on, all while being told that I was indeed being targeted. More changes, requests, and ridiculous demands as time went on, yet, I continued, offering very little pushback, hoping it would pass and I would ultimately be left alone to do my job. But, deep down, I knew better. I knew there was evil at work, and since revealing my diagnosis, I had offered up the game plan that was being used to target my weak spots. I fought at each and every turn, but I was falling apart. The stress of the situation, the fear of what was coming, coupled with the overwhelming workload that I typically managed as part of my job, became too much. I felt like I was drowning, and I couldn’t find any way to get my head above water long enough to recharge. By the time each day was done, I couldn’t settle down and recharge for the next day. Sleep was no longer something I looked forward to, but a block of time each day that I dreaded. I averaged maybe 2-3 hours of broken, weird dream-filled sleep before I was wide awake, usually around 2:00 a.m., and I would spend the rest of the early morning staring at the ceiling until it was time to wake the kids up for school. During that time in bed, I replayed the events of the day before, strategized how to handle the upcoming day, planned for an unknown future, and prayed for an answer to it all. My brain would not stop. I cried all the time. I shuffled around the house in a daze. I stopped eating and started losing weight. I was scaring my husband. I was scaring my kids. I was scaring my parents. I was scaring myself. Finally, enough was enough. I sought help from my doctors, therapists, and friends, and by mid-September, my body and my mind threw in the towel. MS comes with its own set of challenges by itself, but adding factors such as stress, lack of sleep, poor diet, and anxiety makes it worse, and at that time, I found myself smack dab in the middle of a flare-up. I couldn’t go on the way I had been, and I was scared if I tried, there would be horrible consequences. Not just to my health, but the possibility of my mother and husband going to prison. They were fired up and ready to drive to my office at any given second and have words with key players in the plot against me. Thankfully, I calmed them down, however, I still wouldn’t be surprised to see my mom on security footage hunched down in the parking lot slashing tires. I decided on a temporary solution – medical leave. If I could just get away long enough to get myself back together, figure out what to do, and come back with a fresh start, maybe it would be okay. I walked out on September 16, 2022, not sure if I would ever be back.

The weeks following the beginning of my medical leave were a blur. I honestly don’t remember most of it. People kept telling me that once I took a break and walked away, I would be able to relax, and good, restful sleep would follow. And then once sleep was better, I would feel better overall. Nope. I felt like I had a whole new level of stress not working. I still couldn’t eat. I couldn’t stomach the thought of food, and when I did eat, it was like it would sit in my throat, trying to decide which direction to go…back out or in. My mom would constantly cook things and bring them over, trying to tempt me into eating more. When the family got together, I could see her watching my plate to see what I put on it, and then she would inspect it again at the end of the meal to see how much I ate. I continued to lose weight and finally had to purchase smaller clothes, so I didn’t look as disheveled as I felt. Lack of sleep continued, and my body finally got the memo that it was time to pitch in with some physical issues to go along with the mental ones. Getting out of bed in the morning was torture. My bones felt like they hadn’t moved in days. Before I could sit up, I would stretch my legs, which triggered the spasms that shook me from hip to foot. In the beginning, my husband freaked out thinking I was having a seizure. Once those spasms passed, I could sit on the side of the bed and have the pep talk with my feet, asking them to hold me up until I could get the rest of my body moving. Then, it was up and walking. Some days it worked well, and everything went as planned. Other days, I walked directly into the wall or stumbled across the room like people who spin around and around with their heads on a baseball bat and try to run away for fun. It was miserable, awkward, and sad, but I swear, sometimes the giggles that ensued from both me and my husband were a welcome sound. Some days it was easier to laugh at the ridiculousness of it all than others.

We tried to make things as normal as possible for our kids. My son noticed some things were a little off and different, but in typical teenage boy fashion, nothing really stood out or worried him terribly much, which was fine with me. My daughter was a different story. She’s very curious and perceptive, and even though we tried to shield her from everything we could – the wrongdoings at my company, the worry over the medical issues, and the future we weren’t sure about – she still knew something wasn’t right. At one point, she began sleeping in our bedroom at night. It was a phase that eventually passed, but we realized while it was happening that it made her feel better to be closer to us, even if she didn’t know 100% of what was going on.

You can only go so long without sleep before you feel like you are completely losing your mind and falling apart. I tried everything within my power to remedy it on my own, ignored my husband’s suggestions, because I can promise you those things will NOT help insomnia, and finally spoke to my therapist about it at one of my appointments. She prescribed a medication that her patients have had lots of luck with, and she thought I would too. I thought, yay, this is going to be a turning point. That night, I popped a pill as soon as I crawled into bed and closed my eyes waiting for the return of sweet, sweet sleep. What I got was an evening of hallucinations, uncontrollable jitters, middle-of-the-night pantry raiding (that I discovered the next morning), and a hangover like nothing I had ever felt before. And I have had some pretty intense hangovers. The highlight of the evening was having a heart-to-heart with Betty White and taking her to my office to show her what I was dealing with. I remember we walked into the building, and we had about 100 dogs following us. Coworkers kept telling me I could come back to work if Betty came too. WTH?? PSA: Don’t fall in and out of consciousness on questionable medication while The Golden Girls is on the television. Shew. Needless to say, that was the first and last time I took that medication. I followed up with my therapist and reported the side effects and ended up switching medications to something else later, as suggested by my Neurologist. This one was a game-changer, but it came with its own challenges. A high chance of addiction, and the possibility I could murder my husband in the middle of the night without even remembering it. No stress there. It’s what my doctor called an “every third-night medication”. Once I reached three nights of no sleep, I could take one of the pills and then follow that routine until my sleeping habits returned to normal. I will say, the medication did help me fall asleep faster, but what sucks is it is not what I call “real” sleep. It’s like getting knocked out with a baseball bat and coming to a few hours later, feeling groggy, and then passing back out. Headache included. And my poor husband sleeps with one eye open those nights. Smart fellow.

I wish I could report that my sleeping habits have improved, but they have not. I’ve weaned off the medication because in my case, it really doesn’t serve any purpose. I honestly feel more rested when I don’t take it, and only sleep a few hours versus taking it and sleeping longer periods of time. Weird, I know. Maybe it is MS, maybe it is getting older, maybe it is the stress of raising teenagers, who knows? I’ll keep trying different things in the meantime looking for some relief while relying on concealer and caffeine more than ever.

Now, let’s get back to the 2 nights that I did sleep, out of the last 549. Those times I fell asleep fast, stayed asleep all night and woke up bright-eyed and bushy-tailed. I remember those nights well. I also vividly remember the days that led up to them.

November 1, 2022 –

Nerve Conduction Study, AKA Electrocution Day. Po-ta-to. Po-tah-ta.

When my neurologist told me I needed a nerve conduction study to investigate the problems I was having in my arm and hand, I knew nothing about what it entailed. I left my appointment with him and told the receptionist that I needed to schedule the procedure. She made a noise. Was it a grunt? Was it a sigh? Was it because of what I told her, or was it possibly nothing to do with me? She pulled up the schedule to check availability, and I pulled my calendar out to compare. My husband was with me that day, and as I turned to tell him not to worry about his schedule, and that I could handle the appointment alone, I heard it again. She made the same noise. Before I could question it, she began to speak, telling me I may want to have someone with me for the appointment. And before I could take it back, the word popped out of my mouth. Why? There are two types of people in the medical field – those that tell you just enough and those that tell you way too much. She was of the latter group. She held nothing back. Nothing. She told me that she used to work in that department and could hear the reactions of people having the studies done. They screamed, they cursed, they were completely wiped out and emotional by the time they left. She said I would probably want someone to drive me in case my limbs were still jumpy or not at 100% when I was done. She kept going on and on. I’m pretty sure all the color drained from my face. We scheduled the follow-up appointment and she happily told me to have a nice day before we left. Ugh.

Now, I will say, once the day arrived, it wasn’t quite as bad as I expected, but it was no freaking picnic either. I had electrodes attached to both hands and arms, and at the press of a button, a shock was sent through my body, causing involuntary movements to my fingers, hands, and arms. It was the weirdest, most stressful, and most annoying experience. I wouldn’t necessarily call it painful, but I don’t want to do it ever again. But something amazing happened. That night, I fell asleep right after dinner and slept completely through the night until morning light. It was the first time that had happened in almost 6 months. The next day, I had hope that this was the start of something new and my insomnia streak was broken. Not so much. The nights that followed found me back in my insomniac state. I longed for that night of sleep that I had, so I came up with a plan. I headed to the bathtub and asked my husband to plug the hairdryer in and toss it in the water to see if that helped me sleep that night. He refused. He doesn’t love me.

September 17, 2023 –

Quincy 0 – Stairs 1. I told you I was as graceful as a giraffe in high heels.

I woke up that September morning and headed downstairs. It was a Sunday, and we were able to take our time before getting ready to head out for our 10:00 a.m. church service. I was the last one to come down the stairs, and as is the norm now, I took each step slowly, holding on to the handrail. MS has forced me to slow down and really think about where I am going and how to get there as safely as possible. I remember making it to the bottom step, and as I stepped off to the floor below, something went terribly wrong. I’m not sure if I thought I was already at the bottom, if I was distracted by something downstairs, or if I was just careless, I’m not certain. I just know when my foot made contact with the hardwood floor, it was turned the wrong way, and I heard this insane pop. I remember thinking, “Well, crap” as I watched everything change direction and I finally found myself in a heap on the entryway floor. I can’t imagine what my family thought when I screamed. I had no clue what they looked like when they made their way to me because I had my eyes shut tight in pain. I have never had anything hurt quite like that. The initial sharp pain that made me feel like I was going to throw up thankfully only lasted a few short minutes, and as it subsided, I finally opened my eyes and looked up from the floor to see my family above me. My kids were teary-eyed and terrified, and my husband looked at me lovingly and said, “You know, if you didn’t want to go to church, you could have just told me.” It’s probably a good thing he keeps one eye open on the nights I medicate. Just saying.

I spent the day on the couch, elevating my foot and watching it blow up like a black and blue balloon right before my eyes. My family headed out for a quick grocery trip that would get us through a few days, and after promising my husband I wouldn’t move a muscle after they left (he knows me too well), I dragged myself up to the second floor on my backside so I could paint my toenails since I was more than likely seeing a doctor soon. Yes, I know my priorities might be a bit warped at times. One urgent care visit, a set of X-rays, one ridiculously expensive boot, and many hours later, I was the owner of my very first broken bone. Yay me! But the really twisted part? I slept like a baby that night. No pain medicine to thank for it, just a good ole broken bone and a crazy, exhausting day to thank for it. I really thought, maybe this is it, maybe this is the turning point. Nope. Insomnia returned the next night, and I was back to my old ways. I asked my husband what I could break next that wasn’t too serious so I could sleep through the night again. He rolled his eyes and told me I was not funny. I think I am hilarious.

Before last year, I was never one to sleep during the day. Why would I? I never needed to since I was able to get the recharging that I needed overnight. But my current stretch of 549 days of interrupted sleep (minus those 2 wonderful nights), tells me those dreamy nights are gone. Sigh. MS can cause insomnia, and insomnia can make MS symptoms worse. It’s a weird cycle and one that has forced me to learn to nap. It has always amazed me how people can “power nap” – my husband included. He can sit straight up on the couch, close his eyes for 15 minutes, and like Wall-E in the sunlight, he’s fully recharged and ready to go once he opens his eyes. It’s a concept that I am still adjusting to, like all those years ago when I had to learn to sleep with a box fan at night. Most days if I do fall asleep for a nap, I have no idea what day it is or what planet I am on when I wake, but I’m getting better at it. And apparently, I need to get sleep whenever I can, because if not, I might be forced to rely on medication that will eventually have me featured on an upcoming episode of Snapped – Women Who Kill.