From 0 to 100 - My Medical Scare That Put Me to Sleep (Part 3)

Editor's note: This is part 3 of a 3-part series. You can read part 1 (what triggered a sudden onset of extreme exhaustion) and part 2 (adjusting to therapies and a new sleep pattern).

I'm lucky I have a support system. Usually, now, my partner and I have a good (non-verbal) system, and he is incredibly patient when I am not always able to speak when I'm still having symptoms.

Depending on how/where I fall, he knows how to roll me into a knee-to-chest position to sitting up legs to chest, to pull me up from behind, as I tend to sway and fall back when I am still experiencing the phases of an episode.

My partner's support

I'm incredibly lucky to have my partner around, as there have been too many times that we've waited a few minutes, gotten up, only to faint again and fall back on him, dead weight. When I say I'm lucky, it's an understatement.

Throughout all of this, he has been my safety net (literally, as well) but also reinforcement and a positive influence that if I have a good blood pressure reading or if I sleep the whole night, we high-five and make up a silly, fun handshake.

All my life, I prayed for the sleep I'm getting now, but WOW – I feel like I also haven't seen or talked to him the entire month, as if I went into hibernation.

Indescribable exhaustion

When I talk about exhaustion, it is so incredibly hard to put into words for your body to experience a neurological event like this – that affects your coordination, your speech, your cognitive abilities, and definitely puts you at a huge safety risk. I have not fully recovered yet, even after a stint in the ICU and then another hospitalization after that.

Though we have a diagnosis and a plan, it feels like I've missed out on so much since this all began. My body feels so far behind that I'm wondering where February even went – I mean, I quite literally slept through most of February.

Worried about my long-term sleep patterns

Normally, this might be an obvious sign of depression or a blip in mental health, social health, or even slight changes in one's emotional health. Too much sleep can be a bad thing, but in this case, I still need all the sleep I can get. While I'm not depressed, I'm certainly beginning to worry about how long-term this will be and when I will gain back my strength.

I do worry about my sleep pattern and how it will look long-term. I worry that the episodes I'm having may be more chronic/long-term than originally thought. I worry about eventually going back to work and not knowing if I'll have the energy and capacity to oversee all of the tasks required of me, especially the out-of-the-box ones where I have to think of a solution quickly. I worry about being tired forever because that's what it feels like right now. I never thought I'd say that in a million years.

The irony of sleeping around the clock

Insomnia has chased me for decades, and now I can barely keep my eyes open during the day. It's been such a change of pace and a massive shift in my schedule. Honestly? I really, really miss work. The only people I see are the home health care workers that come to my house to do therapy with me and change the dressing for my PICC line.

And because of the COVID-19 pandemic (as of writing this), no one can come to visit, and even if they could, I'd likely fall asleep mid-sentence. Also, I'm unbelievably lonely lately. I'm not a huge phone talker or texter, and even being anti-social, you begin to miss the things you once had the option of utilizing before.

This role reversal feels strange

I'm so incredibly independent that this feels so strange to me: relying on other people, feeling like a burden when someone needs to pick me up, sleeping all the time, etc. I'm usually the caretaker, the one who fills others' cups. It still feels really weird and incorrect that I'm now the full-time patient, with no obvious signs of returning to work anytime soon.

I give so much of myself so often that I forget to leave anything in the tank for myself. Maybe this is a huge sign that a couple of months of naps and weird sleep cycles need to happen in order to be my "old self."

Staying on the path to recovery

I never thought I'd say this...but I'm tired of being SO tired, to the point where I'm falling asleep mid-sentence. But, I know I still need so much more sleep to continue to recover and be even remotely close to what I was before this all happened.

I hope in time that with the new medication I am on, and with the oversight of my psychiatry, GI, and my new PCP, my care team and I will be able to figure out a short- and long-term plan for me. A plan for when things don't go as they should have, but also when I start to heal from all the trauma my body continues to go through on a daily basis.

I. Am. Exhausted.