Welcome to “How to Go to the Doctor,” our twice-monthly advice column started by Eva Hagberg Fisher, and inherited by Jackie Shea: actress, wellness advocate, and writer of the blog, Too Sick and Naked, the “hilarious” stories out of her chronically ill and traumatic life dealing with Lyme disease, immune disorders, and PTSD.
Dear Jackie, I used to be bedridden and now I have a really full life, but I find myself feeling like I’ll never feel better than I do right now, which is kinda crappy. I push through even though I learned not to push through, and then I crash, and then I’m like oh shit, but then I feel better so I do more—it goes on and on. How do I both embrace that I’m not bedridden from mystery illness but not forget that I also need to take care of myself? Last night I went online and totally freaked myself out that I’d never get better. Today I had an amazing day. But these ups and downs are hard to handle emotionally. Help.
I relate. Like you, I’m so much better. Case in point: I went skiing last Thursday. Skiing! That means I had enough energy and stamina to endure a high altitude and slightly chilly weather (it was freakishly warm). I was able to stay on my feet, on the slopes, for an hour and a half and use the muscles in my legs for something that is considered an extreme sport—albeit there was nothing extreme about my novice play. As though that’s not triumphant enough, post-ski I I was able to do normal things like sit through lunch and take a shower and do some work and dance in the kitchen as I cooked dinner with my boyfriend! My main complaint was knee pain while skiing and some irritating fatigue. But so what? Exactly 14 months ago, I took a trip to the same ski-town and I barely made it out of the house, let alone to the mountain. In fact, I sobbed in bed while the others got their adventure on. The altitude was too much, the traveling too much, the depression … way too much.
While that is all cause for celebration, I also have to be careful. I have to try to remember that a couple of weeks ago, I was stuck in bed for a couple of days. Yes, I was “stuck” with more of a double- sided scotch tape than professional-grade super-glue if you catch my drift, but for all intents and purposes, I WAS stuck in bed. When I feel good (as a product of next-level-self-care) and do things like go skiing, I conveniently forget the bed-ridden episodes/headaches/nausea/inflammation. The better I feel, the easier it is to forget to take my supplements or meditate or drink celery juice or whatever one of the ten thousand things I do to feel decent. I push it. And I push it some more. And, slowly but surely, I forget to do most of the things that make me feel good long-term and end up eating things like crispy french fries or dark chocolate bars.
Soon enough, I am blind-sided by my hellish symptoms, scaring me down the cliff I’m about to jump off of. The cycle continues. Reemerging from that darkness into the dawn is so exciting, so thrilling, that I run at it like an excited puppy, burning out quickly again. BUT sadly, I can’t actually always pinpoint what it is that’s making me feel bad. What’s even more real and devastating is that sometimes my ups and downs have nothing to do with how I treat my body and everything to do with something I’m powerless over: chronic illness.
Ouch. Chronic illness. Me? I erratically move in and out of acceptance that I am, in fact, chronically ill (for today). It’s hard to digest as a reality. I’m young, I didn’t see this for myself. I didn’t want this path. In fact, I keep trying to reroute. But no matter how many back roads I take, I keep ending up here—on this bumpy, thin, slow, windy road that if traveled with patience, faith, and persistence is adorned with the most stunning views. Sometimes, the scenery is worth the 10 MPH speed limit; sometimes it’s fucking not. And, today, because I’m so much better, I “can” risk it and put my foot on the gas when it is advised that I don’t. But can you blame me? I really, for a moment after years of being sedentary, want to feel the damn wind in my hair.
It is nice to be able to push through. Quite frankly, I’m grateful I can. There was a time where that wasn’t an option because I literally couldn’t hold my own head up. Maybe there’s nothing wrong with pushing through. Maybe you are like me, and you push the boundaries because you love life. In a way, that’s not only a beautiful thing, but a human thing. We WANT to feel good and we want to participate in life so when we have the energy, we pursue that natural desire. And when we feel good, it’s convenient to forget that certain things can make us feel bad—denial kicks in. Why wouldn’t it? Maggie Nelson writes in “The Argonauts” about the experience of forgetting pain: “People say women forget about the pain of labor, due to some kind of God-given amnesia that keeps the species reproducing. But that isn’t quite right—after all, what does it mean for pain to be ‘memorable’? You’re either in pain or you’re not. “
I think the ups and downs, the denial, the high-speed-maneuvering in and out of acceptance, the pushing it because we want to live—these things are all just part of the “chronic illness” definition. We fall back in bed sometimes because we push it, but sometimes we fall back in bed just because we are unlucky. For example, I am not suffering after skiing and a couple of nights of rough sleep and altitiude adjustment. However, two weeks ago seemingly nothing provoked a nasty flare. “Was it the bath? Am I getting my period? Am I over stressed? Did I not sleep well?” I racked my brain trying to find “the thing” because I really wish it was something that was in my control but maybe my system just made decisions without running them by me? Bummer.
I have no problem embracing that I’m not bedridden when I’m not bedridden. Like you, I get so excited that “I push it” and participate in my full life. At those times, while I might fall short in some levels of extreme self-care (because who wouldn’t?). I do have solid habits in place that keep me from descending completely into the unknown depths of suffering. First, I urge you to take a look at your daily life. I bet you already have your personal habits that keep you semi-stable, and I suggest you give yourself some credit for that. It’s badass. Here are my strategies for a smooth ride when the path is riddled with potholes:
-I start each day with 16 ounces of either celery juice or lemon and cayenne water.
-I bring snacks almost everywhere and my snacks are always very healthy. Never go hungry!
-Once a week, I do something healing like an infrared sauna or massage or acupuncture or Reiki.
-I eat one healthy meal a day. If I’m feeling really good, I get lazy about my food choices. I feel good knowing that, at minimum, I will eat one healthy meal a day because that is routine for me. (My version of a healthy meal is probably different from yours.)
-I get eight hours of sleep. Or, I make sure I’m in bed for eight hours. This is an absolute must.
-Once a day, I put my phone in airplane mode for one hour. One hour with nothing but a book or television (although TV isn’t very relaxing either) or some meditation podcast. I usually get some sleep in this time. I find that it’s really important to reassess what my energy level is and what I’m capable of. It really stops the pushing through train. Again, the more habitual I make this, the better. To keep it feeling sexy, you can call it your siesta and pretend you’re in Europe!
– I limit caffeine. Caffeine is the ultimate fuel for pushing through. Three months ago, I replaced my coffee habit with green tea. I still do about two cups a day but the caffeine intake is so much less that it helps me to gauge how much energy I actually have and when to rest.
– And when I’m really down, I send an SOS text to someone who gets it. I have one main check, a friend who is in a very similar position to me. We remind each other to rest. We remind each other that it will pass, that we are enough even if we are bed bound, and most importantly, we laugh a lot about the (sometimes hilarious) experiences that come with illness. Objective witnesses that have been—or are—where I am, can give me great feedback and support.
I have a feeling that, like me, you are already doing a smashing job at self-care and that you are simply one of the unlucky ones, struck with chronic illness and also in a brilliant perspective shift, you’re one of the lucky ones, healing from chronic illness.
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