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.
PaulaSeptember 30, 2014 at 1:03 am
Oh Nicole, I’m so sorry for this awful experience you’ve been through. You are a woman of great mental toughness, and you’re such a wonderful example of perseverance. The smile in your photo, after what you had been through, is such a blessing. My prayers will be with you for a full recovery!Reply
JanOctober 4, 2014 at 3:55 pm
Nicole, we’re with you in this fight! My wife (32 years old) has been diagnosed 6 months ago, but got infected 12 years ago. One day at a time, slowly but surely, Lymies come back to life. And when they do, they’re unstoppable. So keep your smile on whenever you can. This will end.Reply
nbottlesNovember 13, 2014 at 3:08 am
thank you so much! your words brought a smile to my face. i love meeting other warriors, so rock on! i agree…sometimes we’re handed something that feels impossible, and your whole life changes for the better because of it. which is pretty special. thanks for stopping by!
Beth TalbotOctober 20, 2014 at 12:41 am
After 4 days since my last dilaudid I am still nauseous with mild diarrhea and generalized fatigue. Worse symptom is a phantom odor I can’t escape, it is sweet, metalic and gross. it’s not just on me. My freshly laundered sheets, clothes-everything I had been on Dilaudid 3 weeks 12mg/24 and tapered only a little before quitting. I am over 60 and opiate naive.did you experience odors?Reply
nbottlesNovember 13, 2014 at 3:01 am
my phantom odors were of “smoke”…things burning. i put peppermint or lavender oil under my nose to help with that. i hope your withdrawal doesn’t last too long…it’s good you haven’t been on it too long. just to give you an idea, i’ve been on the drug for years and took about 3 months for all symptoms of withdrawal to stop. the worst is the first 72 hours. the first week is brutal. it gets better. stay strong!
JessFebruary 1, 2015 at 3:44 pm
Just stopping by to say that you certainly have come a long way since I first saw you on a CTV Documentary. You are smiling, you look wonderful, you have raised more awareness for Lyme than any other Canadian, your energy must be a lot lot better and you are so lucky to have your Mom to support you, many of us struggle on our own with few resources. Sometimes an objective view helps to show us how far we truly *have* come. I know it has been a long road, you have your age as well as the brief time you were sick to starting your treament, are you back taking classes? Knitting, the library, classes, shopping with friends, family, cooking – now to lose that wheelchair! You are truly blessed, I hope you realize that. bestReply