Sleep

Sleep has always been a bit of an issue for me since I first became ill.

At first it was pain and bathroom breaks. I would be up several times throughout the night racing to the washroom and I would doubled over in pain for the most part.

Then the side effects of medications were added to the mixture. Prednisone was the catalyst for so many issues with sleeping. It started with basic insomnia, then the nightmares, night terrors, and the racing heartbeat started. Have you ever tried sleeping when your heart rate is above 100bpm? Pretty tough to relax, especially when there are so many other factors working against you.

Those night terrors went from pretty basic to all-encompassing fear. Suddenly I needed to do everything I could to stop myself from even having the slightest cat-nap. Those terrors were so vivid that I could not handle them - emotionally or psychologically.

Then the hallucinations started. Small at first, seeing a spider in a corner that wasn't actually there. Trying to pick up a towel that had fallen off of the bathroom counter, that wasn't there at all. My eyes playing tricks on me, seeing bats in my bedroom or other critters. But it got worse. I began having phone conversations that weren't actually happening. I saw a friend standing in my kitchen cooking while we had a conversation, only to blink and be standing in the middle of the basement suite all alone.
That escalated to daytime hallucinations. Speaking to a substitute teacher in the middle of my high school - who did not exist. Soon I had to ask for help from friends deciphering whether what I was seeing, hearing, and who I was speaking with was real or not. I had to verify with people on whether or not we had had specific conversations. I saw green windows in the middle of someone's front yard in the grass. I stopped for a pedestrian using a crosswalk, only to realize that the pedestrian was only in my mind. Not only was I terrified to sleep, now I couldn't drive either. I could not trust my own senses.

As if insomnia, night terrors, hallucinations, a racing heartbeat, bathroom breaks, and pain weren't enough...

The sicker I got, the more issues I developed. I started grinding my teeth when I DID happen to sleep. I would sleepwalk and find myself in the living room, or the kitchen, and several times on the bathroom floor. I would yell in my sleep. I would flail. I would start shouting in languages no one could pinpoint.
Then, of course, came the 'common' symptoms of having an Inflammatory Bowel Disease. Soon I needed mattress protectors and other embarrassing supplies.

If I don't take certain medications to help me sleep, I will sometimes suffer insomnia, often for weeks at a time. But when I take the medications to help me sleep, it feels like a medicated sleep and I never quite feel well-rested. And then there is the energy rollercoaster... where often for months on end I will suffer the complete opposite side of the spectrum and I will be sleeping nearly 20 hours each day and can never quite get myself to fully wake up.

Right now things are much calmer. I still need help getting to sleep sometimes, and still go through bouts of insomnia (like right now). I hallucinate much less, I haven't walked in my sleep for a couple of years, and my nightmares/night terrors occur every few weeks instead of every single time I close my eyes. I think a major part of this improvement comes from feeling safer. The extra supplies are needed every couple of months, unfortunately, my heart still races, the nausea & pain & bathroom breaks remain frequent, and I still grind my teeth if I am extra sick, but at least I am not so paralyzed with fear that I purposely prevent myself from sleeping.

When I am able to sleep soundly it is glorious.

I have a complicated love/hate relationship with sleep... and sometimes I need to force myself to stay awake for so long that my body finally just gives up and allows me to pass out without extra medication.

I think my body will finally let me sleep now... at 6:30am... after my Berinert treatment.

Happy Friday.

Fatigue Friday.