Archive of ‘senses’ category

Withdrawal ~ A life Affirming Experience

Whoa. Hold the phone. Did I just type that? A part of me – the part most closely connected to today’s symptoms of feverishness, anxiety, nausea, convulsions – just rolled it’s eyes. And last week, my title would have been radically different. Which is why I waited 3 weeks after my last dose of dilaudid to write this. That’s right. It’s been 3 weeks. *fistpump*.

I’ve been on oral hydromorphone (dilaudid), a narcotic pain killer, for several years. It works, kind of, but not without side effects (forgetting to breathe tops my list!). I used it for “break-through pain” during the day, like many people. I was on a tiny dose, and figured getting off of it would be “easy”. Oh silly, past Nicole!

First, let’s take a trip down memory lane. I’d been tapering off the dilaudid for over a year. And this year has been *brutal* in ways that, to me, have felt utterly un-Lyme-ish. I’m preeetttyyyy used to feeling like crap, and in pain everyday, 24/7, so it’s usually easy to pinpoint when something else is going on. For some reason this year a number of unusual (for me), unexplained symptoms have been cramping my style regularly. Some of these fun things include:

– hot/cold sweats

-intense abdominal pain

-involuntary muscle tensing/stretching

-shaking, chattering teeth

-mild depression (took getting off it to realize this!)

-utter exhaustion / complete insomnia [staying awake for 2-6 days at a time:(]

-complete loss of appetite

And et cetera. I know. I thought too that these problems sound like my ‘usual’ sick self, but something felt off. I felt off. I felt strange.

Naturally, these symptoms intensified the closer I got to eliminating the hydromorphone. Until sh!t really went crazy. My mother didn’t tell me I was completely off it until 2 days in. The first few days and nights were awful. Hell. Excruciating convulsions wracked my body every 5-15 seconds, making sleep out of the question. Intense nausea, head pressure, bone pain, my body jumping from hot to cold…the list goes on an on. I was completely uninterested in food or drink, and began to unwillingly loose weight, weakening my body still further. For the first few days, I mostly stayed in bed, not even knitting *gasp*, only able to get up for an hour or two at a time before by body would beg for me to return to bed. I could not believe how intense the experience was.

My amazing Mum held my hand for hours as I twisted with painful convulsions, my body freezing, stretching, pulling-apart from the inside out. She repeated the mantra, “It’s going to be okay”, and I would say, “I know”. And somehow, amazingly I did. I had this overwhelming feeling that everything was going to be fine. Better than fine. It was excruciating, challenging, utterly mind-rendingly exhausting, but I knew I was going to be just fine, in every sense of the word. I knew it was going to happen, and it would keep happening until it was over, and everything would be right again. Until my body and brain adjusted to life without Hydromorphone. I was utterly at peace with the entire experience, which struck me as a bit strange, but the calm was welcoming. For the past year, I’ve struggled returning to the place of inner calm and peace I had perpetually occupied. It came to me only fleetingly, and left me feeling anxious, agitated, and restless. And somehow, it had found me in the darkest time. I couldn’t meditate during the withdrawal experience, and oddly, relaxing and calming my brain seemed to intensify the withdrawal symptoms. So I focused mindfully on other things. A book, music. I’ve never gotten that far through my “Classical Music Playlist” (it has about 2,000 songs. don’t judge me :P!), but  listening to the soaring “Cypresses” by Dvořák, wild landscapes of Sibelius and Copeland, the unabashed liberation of Ravel’s “Miroirs“, the willful wanderings of Satie’s “Gnossienne” and many more for endless hours gave me strength and a welcome distraction. The pain could pass in swirl of musical colors, I, adrift.

As I said, I wasn’t prepared for the intensity of the experience. The sheer scale of pain and misery that your body and mind can create. The pain was so overwhelming, all-consuming, and I had to forcibly make room for living. After 12 hours of spasming pain, I’d arise, whip across my curtains, and look out at the sun. I’d made it. Another day. More hours to check off. I’d ask my mum for an update on how many hours I’d been without hydromorphone. And grin from ear to ear.

There is no respite. No break for the first 72 hours. You simply must enure. Sorrryyyyyyy. Sometimes life’s like that. But I made it. And if you are facing a similar experience, be prepared. Be ready. It freakin sucks. But you’ll survive, you’ll only feel life you’re dying.



You know, life is very exciting when you do nothing. When there is nothing, I find, that I suddenly notice so much more about the so-called ‘nothing’ than before. A ceiling has so many little dots, blimp and swirls. The way a chair always leans a little to one side, like its tired of being squished. The whoosh of an air vent, and the way dust clings to it in twisting strands. The sound of a room breathing; the cracks and creaks of it, like the sterile stomach of a living beast. A tense smell. The tang of MicroScan. Dust in the corners of a room, hiding from the broad sweeps of a plastic broom. Such things are nothing when you have something to do, but I find are actually quite fascinating when you are just waiting.

The stupid MePore (sp?) – a kind of clear dressing – doesn’t stick to my skin. In fact, I believe that it repels my skin with astonishing force. Why, only a day after it was put on, it was peeling up away from my skin, inching itself to the outer edges of the bandage and freedom. Of course this is all well and good for it, but rather unfortunate for the 1/2 needle in my port. It loves the sickening sharpness of CholoraPrep and nitrile gloves. Even taping all of the sides down more securely didn’t keep the dressing on, so a few days later we were back in ER, getting it changed again! How annoying!!! Anyway, tonight it wasn’t too bad, and we were out of there in like, 2 hours, which isn’t bad. Hell, you can wait that long in a doctors office, reading bad, out-of-date magazines no one cares about.

I am really really zonked today. Everything is infinitely worse when you are tired. I fainted and fell out of my chair on the way to the bathroom, and fell in a way that my chest hit the ground, my bodyweight pushing the needle and port deeper into me. A little uncomfortable, to say the least. Haahaa. It’s kinda throbbing, deep down inside, in a way I don’t like. It isn’t helped by the cold IV ball I am currently infusing with.

Oh well. At least in a few days it will be out for a little longer. A respite! At last, a shower!

“We can’t solve problems by using the same kind of thinking we used when we created them.”

~ Albert Einstein 

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