When You Can't Sleep Because You're Chronically Ill – Part 3

This is a 3-part author series. You can read Part 1 which explains how I got into this conundrum in the first place and Part 2 which talks about my recovery and using a total parenteral nutrition (TPN) bag.

Short- and long-term goals for better sleep

Our goal is for me to get back on my post-traumatic stress disorder (PTSD) medication, which helps me sleep and prevents terrible recurring night terrors from my past, which have dramatically affected me in the last few months. When I’m not able to take it, I fear falling asleep even for half-hour increments - dripping in sweat – in addition to the night terrors and inability to wake up due to sleep paralysis.

That goal to get me back on the medication also includes eventually being able to go back on the medication for PTSD during the day. Essentially, to get back on and keep down the medications that calm me down at night and help prevent PTSD flashbacks.

Challenges with my blood pressure

Due to my PTSD medication being a blood pressure medication that significantly can lower your blood pressure, mine has been running super low for months as we needed to keep adding more blood pressure meds. We originally thought it was my post orthostatic tachycardia syndrome (POTS) - cue the terrible falls and frequent spells of blacking out due to malnutrition and muscle atrophy pain at a 15/10.

Getting back to where I was

I honestly can’t wait for the day I'm done with this and give major props and have a deep admiration for people living on TPN as their lifeline. The last few months, I’ve been medically failing to thrive, and it's affected me in every way – socially, mentally, physically, emotionally, etc. My long-term goal is to get back on my PTSD medication during the day, too, like I was previous.

30 years of insomnia - never this bad. I never thought I’d say, “Can I just go back to my 'regular,' terrible insomnia versus the kind I’m experiencing now?”

Following my treatment plan

But I've been lucky. Despite all the setbacks and nights spent awake in the hospital and ICU, I realize how drastic it would be to my overall (lack thereof) health had I not accepted this medical intervention.

We have a plan (that will likely change, given my luck) to be off of TPN and able to thrive much better in about 2 months. I'm already starting to feel better and be able to take down liquids and occasionally can try soft foods. But since my nutrition is not there yet, I'm still weak and a bit slow with everything I do.

Looking forward to the future

I don't anticipate this being a long-term thing, though it very well could be. But there are so many factors that go into play when you have a total lack of sleep, sleep routine, and ever feeling any sense of normalcy being hooked up to a pump that feeds you through your heart and into your bloodstream. I also can't wait to not be woken up by beeping from my feeding pump.

The most I've gotten out of this experience is the new feeling of how painful no sleep and rapid malnutrition and even a dose of organ failure can make you feel. I'm happy to say I'm not lying down at night (knowing I won't sleep), but I am also now not lying on the couch the entire day, and soon, I expect to be back to work. And though it's heavy on my body and mind at times, there's no place else I'd rather be.