It’s never just one thing, is it? On top of celiac disease and narcolepsy, I have a bit of a ramshackle crew of maladies hanging around. I hope to find a lot of these complications dissipate as a result of my narcolepsy treatment. It would be great to wake without widespread pain in places that just don’t make sense.
I was diagnosed with fibromyalgia in my late 20s, and it’s been suggested that I also have chronic fatigue syndrome (CFS), but now I think I know why many of my symptoms didn’t line up with CFS–because they’re actually narcolepsy symptoms. In addition, I was always irritable and became pretty argumentative (to put it nicely) as a teen, and when we sought relief, I was diagnosed as “manic depressive” (manic depression has been reclassified as bipolar disorder). As an adult, enough doctors agreed with the manic depression/bipolar diagnosis that I accepted it, even though my symptoms didn’t align with any bipolar models. The bipolar diagnosis became a problem rather than an answer—no doctors seemed to settle on the same form of bipolar. Some said type I, some said type II, one even said this mouthful: type II, mixed-states, rapid-cycling! I was apparently a bit of a handful as a teen.
In hopes of one day feeling stable, I took the prescriptions offered, and experienced little relief, but loads of side effects. So I got more prescriptions to take care of the side effects. (Such logic. So health.) By June of 2011, I was on 8 different meds and several supplements, taking upwards of 30 pills per day, and wearing a patch that constantly delivered opiates to my sad nervous system. And the pain and depression were still there. In fact, the depression was a gravity well that I was pretty sure I’d never escape. So I stopped taking those meds on July 1, 2011. I knew that the withdrawal from the opiates alone could kill me, and I was just fine with that being a potential outcome. Anything was better than where I was at.
I don’t remember much of that month. I know it must have been rough because the man I had been seeing for several months dumped me right in the middle of it all. He was a good man, too—not the sort to just bail on anything—so I can’t imagine what a state I must have been in to push him away like that. (I’m better off. Life has introduced many new and wonderful people whose smiles more than make up for the actions of a socially awkward bagpiper who wasn’t up to the challenge of loving a sick partner.)
I kinda diverged from my original target there… So, all that to say this: It’s been a very difficult road that has almost completely eroded my trust in doctors and pharmaceuticals. I tried so many different therapies: acupuncture, resonant acupuncture (sound therapy with acupuncture), chiropractic, physical therapy, opiates, supplements, muscle relaxers, benzodiazepines, ALL the antidepressants (they started me on high doses of lithium as a teen, to no avail, so it’s been a little of this, and a little of that ever since), massage, and so on. It was enough action and money on my part without any resolution (or return on investment!) that I finally just stopped going to doctors. (I don’t advise this self-destructive pattern. Had I kept searching, I may have found my answer sooner!)
I’m lucky to live in a state that’s had a medical cannabis program for many years. I became a patient in 2009, and have found great relief in cannabis. Mind you, it’s not for everyone, and I don’t think it’s wise to experiment with cannabis until your brain is fully-developed and comfortable with its daily tasks (studies indicate the human brain continues to develop until the mid-20s). That said, it’s been a wonderful addition to my tool kit. When I can’t wind my brain down at the end of a long day, a little indica that’s high in sedating CBN cannabinoids (i.e., White Widow) will calm things down enough that I can drift off fairly well. When my celiac gut is throwing fits, a strain with high-CBG cannabinoids (i.e., The White) will calm the beast. When I just cannot break the brain fog in the morning, a little high-CBD sativa (i.e., Harlequin or Sour Tsunami) will at least get me motivated to make breakfast. Once I’m fed, I’m usually good to go.
Which reminds me…I need to write about food. I don’t think I’ve mentioned how I smashed the crap out of another massive hurdle: obesity. I’ll save the details for another post, but I’ve shed over 100 lbs by eliminating foods I don’t process well, and learning about portion control. Who knew a full meat portion is only as big as a deck of cards!? Once I shifted away from starchy foods and explored fruit and veggies more, everything became easier. When I finally cut gluten, my life changed in ways I probably won’t ever find the words for. It’s been a miracle. (And being in a size 8 body for the first time in my adult life feels pretty great!)
I’m excited to get to the bottom of all these complications to see what will be sorted out when the narcolepsy is treated. I feel like I put all my energy into simply staying upright and keeping a pleasant expression on my face. It would be amazing if that came naturally, without effort. The best part is that I truly believe that can happen. I’ve seen how possible it is—not easy, but certainly possible—to reshape your body and mind. I’m ready for a new chapter. Hopefully one with naps!