When You Can't Sleep Because You're Chronically Ill – Part 2

This is a 3-part author series. You can read Part 1 which explains how I got into this conundrum in the first place.

I’ve had a medical intervention and am now being fed medically through my peripherally inserted central catheter (PICC) line. My entire care team has stated that all of my sleep habits, dehydration, vomiting, and ability to thrive would significantly improve. I do infusions for dehydration, in addition to being “fed” through a central line, using all of the same tubings inside my inner/upper arm.

While it's an inconvenience to have and shower with, it has been helpful for the many blood draws that I need to check all of my levels in order to be provided the right nutrition for the deficits of not being able to eat or drink.

Preparing my TPN bag each night

So my PICC line is used for blood draws, saline infusions 3 times a week, an anti-emetic (anti-vomiting) medication, and, of course, the formula that makes up TPN. TPN stands for total parenteral nutrition. There is a basic chemistry involved to a bag of TPN, but also things may be added that you lack extra of – certain vitamins, as well as fats/lipids.

When I prepare my bag for the night, I inject those things into my bag, which makes the preparation a little bit longer. Every day is the same thing. Every day I develop fatigue in terms that can't be described. I'm tired all the time. Organ failure will also apparently do that to you.

Preparation, anxiety, exhaustion

It’s time-consuming – all the setting up, having everything needing to be absolutely sterile so I don’t develop a blood infection. Honestly, just the thought of setting up everything affects you emotionally and makes you sink into your chair. You'd think I'd be tired of hooking up, mixing my fats and lipids inside the TPN bag, priming my line, and getting ready to hook up since right now I'm connected to it 24 hours a day. Yes. 24 hours a day.

And that still doesn't feel comfortable in my insides. Let's talk about showers and how to navigate timing, finding the time to put my PICC water-resistant protector on, and make sure my dressing doesn't get wet. This brings me a ton of anxiety which itself is tiring and absolutely exhausting.

What I really need is rest

(And probably a really light massage). But still, I can't sleep. In the beginning/middle of this crisis, I dropped 20 pounds and thankfully have put some of that back on. But the pain from muscle atrophy keeps me awake all night and in agony all day.

What I need most right now is rest, and that is just not something that happens, even if I don’t sleep. I’ve talked about my father’s advice to just let my body “rest" even if it means staying still and not sleeping but having the time and ability to physically recover from what’s happened in that day. I try to remember this and take his advice the best I can, but it’s hard when every part of your body hurts, and you feel like if you move at all, you’ll vomit and become sicker.

Stay tuned for part 3, coming soon!