It's hard to believe that it's been just over two years since I heard that bombshell news - 'You have celiac disease' - a diagnosis that left me both elated that there was an answer to my persistent health problems and gutted at how my food-loving life would have to change. Two years felt like the magic bullet back then, the estimated time for a gut long-ravaged by unknown celiac to heal itself. Now that I'm here, I feel like I'm still wading in uncertain waters rather than crossing some imaginary finish line of recovery.
In all fairness, I am leaps and bounds better than I was then, no longer needing to receive my nutrition intravenously or requiring 12 hours of sleep a night. But my journey to better health is just that - a journey.
The realization in the last few years that my disease was not one with just one easy solution - 'eat gluten-free' - but that wellness is more evolving and fluctuating has been a helpful one in dealing with the frustrations of living with celiac. Often, I must keep my intake of inflammatories in check, like coffee, alcohol and sugar, as overdoing it sends my body and mind into a complete downward spiral. And I don't mean daily-hangovers-kind-of-overdoing, simply anything more than a couple times of week. This probably holds true for most people as well, but my autoimmune-ravaged body is pretty sensitive to anything that doesn't directly contribute to its strength.
Then there are the non-physical frustrations. Knowing I could never eat 100% at home - how would I travel? how would I eat out with friends? - means accepting that there is always the possibility of being glutened, even by the kindest of friends and restaurant workers who believe they have taken every precaution. And when I do get glutened, as I was back in August, there are emotional, as well as the physical fallouts: digestive issues, exhaustion, foggy brain, a bipolar-like roller coaster of emotions. It's infuriating to feel like something as simple as eating requires this constant tiptoeing around landmines, but such is the life of a celiac.
Aside from accepting this ebb and flow of feeling good (which I'm not gonna lie, is still a challenge), perhaps the greatest progress for me was made when I jumped into athletics for the first time in my life. Sure, I joined a gym at the behest of my doctor over a year ago, but it wasn't until I started training for roller derby that I really began to feel fulfilled, physically and emotionally. When I discovered that one of my leaguemates-to-be, the one I had watched at the first scrimmages I attended, mouth agape at her abilities, also had celiac, it gave me even more hope. While she is clearly a more natural athlete than I, it meant a lot to see someone who struggles with many of the same things succeed at such a physical endeavor and showed me the path I am on is the right one. I am not about to let this silly disease get the better of me.
That said... the struggle still gets me down sometimes, leaving my psyche to feel as if it's barely treading water, threatening to slip under at any moment. Our week in Barcelona showed me how good it could be in another European city, from the vast eating options to the superb awareness about cross-contamination - things that are practically non-existent in Berlin. To add further insult to injury, Barcelona was the other city we considered when moving almost three years ago - and ironically we chose the one that is more difficult to navigate with celiac.
Returning from skating in the sunshine and indulging at not just one, but two incredible gluten-free bakeries, I slipped into a bit of a funk. The self-indulgent pity parties started again, pouting any time a great event showed up in my Facebook feed, only to realize that I'm better off staying home because I won't be able to enjoy anything there. The voice in my head that whines: WHY can't it be as good here for gluten-free as it is in Portland? Or even Barcelona? Well, life isn't always fair and there is only one way to go: Forward.
Back at derby training after a league break and our Mediterranean holiday, I'm working to regain not only that physical strength I acquired thus far in my newbie class, but also the mental wellness that came with it. Chronic illness or not, we all have good days and bad days, I just need rise above pointing my finger only at my celiac on the bad days and letting it overshadow all the progress I have made.
Next up is my biennial endoscopy, the first since my recovery began, to ensure the damage has indeed repaired itself and I haven't gotten the lovely cancer that we celiacs are more prone to developing. With that, cutting back on the inflammatories (buh-bye, beloved coffee and alcohol), getting my ass back to the gym (so, so hard on top of my derby training schedule) and keeping my head clear of all those nagging negatives about living gluten-free in Berlin, I know I can keep moving forward in a way that is positive for my overall well-being. Ultimately, I have to listen to my body, something that I can thank celiac for teaching me to do.
I wrote specifically about my road to roller derby for the new online magazine Do It Well Co. Read it here and be sure to check out the rest of the great contributors to the issue!