From 0 to 100 – My Medical Scare That Put Me to Sleep (Part 2)

In Part 2 of this series, I talk about all things medical, some medications and therapies I have been doing since my hospital stays, and how hard it has been to adjust to a major life event that has altered my entire sleep pattern.

If you missed it, check out Part 1 of this series.

Major adjustments after my medical crises

I've struggled with sleep since I was an infant and have needed sleep aids and sedatives since I was a teenager to get an average of maybe 4 to 5 hours of sleep a night. Now, I'm taking less than half of my nighttime med dosages, and I'm still falling asleep at 8 PM and waking up around 4 to 5 AM. Sometimes 9 or 10 AM!

In the morning, I feel pretty awake – I mean, I got pretty used to working third shift for those couple months I was allowed to start back up working part-time. It felt amazing to be back, doing something I love while serving others. It didn't feel so amazing when my recovery turned into, "I'll see you back in a month, or more, to reevaluate. You've got a long road ahead of you."

With that, we came up with an initial game plan to start a med, specifically for post orthostatic tachycardia syndrome (POTS) patients, that helps regulate my vitals and would hopefully get me on the path to where I was, physically, before this all started.

Where did the days go?

A whole month has now gone by since I had the medical crises that led me to become sick, and now, I finally feel like I'm "weaning" off of that sleep schedule. Other days, though, like today, not so much. I've been awake since 4 AM, hooked up to IVs, just trying to stay awake while I wait for my occupational therapist to come.

While some days it felt glorious to sleep all I needed to (doctor's orders), other days have just seemed to float by, as if night and day had no distinguishable difference. The whole month of February just seemed like one really long, sleepy week.

What my exhaustion feels like

After I have a huge event that completely drops all of my dead weight straight to the floor with no warning, my tank is absolutely empty. Getting up requires help and a lot of time to let my body recalibrate and acquire my vision back.

If I could compare the pure, utter exhaustion to some sort of physical activity, it would feel like nearing the end of a half marathon you never really trained for. But just when you think you've crossed the finish line, you realize you're actually running a marathon, and you still have 13.1 more miles to go. But this time, you are wearing weights on every part of your body.

What episodes of syncope look like

When I have episodes of syncope, it sometimes looks incredibly goofy, as if I'm slowly drifting to the floor in quicksand. Other times, when I have a catastrophic event, I have no warning, and my whole entire body drops. Sometimes I am unconscious for a few moments, sometimes a minute or 2, depending on if there is someone near me.

By the grace of something watching over me, I have not acquired a head injury, which is mind-boggling given the times I've fallen like a ton of bricks on a cement floor. Or have taken out a row of kitchen chairs, first landing on the table, then waking up on the floor covered in pet food and water.

New and constant worries

It's terrifying. It's completely, physically overwhelming to try and recover from an episode like that. Especially because it also affects me cognitively, especially my speech (at least that is one warning to act quick). But admittedly, I now constantly worry that I will not have my partner around when "the big spill" comes.

So I guess instead of me chasing sleep, it's turned into me (figuratively) running in fear from massive drops in blood pressure and trying to find new ways to adapt my old ways into newer, more constructive, safer ways of getting even the smallest tasks done without my safety being an issue.

Each event is different

Falling this ill so quickly (and sleeping so heavily) has not given me much time to process what my body has gone through. But it's pretty evident I've endured a lot of trauma when it needs to recover for 6 to 8 hours after I have an episode of syncope.

Each event/episode may be different. Some have been small falls. Some I have been able to feel coming on and can grab something (like furniture) to stabilize my fall. But the really big, exaggerated falls I am not able to prepare for at all? Those wipe me out entirely.

The light may turn back on, but nobody is home. Sometimes the symptoms of my syncope will only last a couple of minutes, and sometimes, when I'm able, I get right back up and fall right back down.

Regaining my sense of surroundings

But the hard falls...those require 10 to 15 minutes on the floor to regain my sense of surroundings. After that, it often takes another 10 to 15 minutes after I'm standing to a) make sure I don't pass out again, b) am able to communicate and c) give the "OK" that I don't need anyone but my partner.

Sometimes it takes several attempts (if I'm coherent) to try and get to a vertical position, only to be laid back down in a horizontal position pretty immediately. Lastly, we do body checks to make sure I am not bleeding anywhere, or nothing seems broken or dislocated.

In the next and final part of this series, I talk about my amazing support system and partner, what this type of exhaustion really feels like, the transition from caregiver to a full-time patient, and moving forward treatment-wise, hoping this will all be short-term.

Continue reading Part 3.