For those of us with chronic illness, the unprecedented outbreak of the coronavirus presents a challenge with an extra layer of fear and concern. My white blood cell count is already low. I’ve been in relative social isolation for two months, way before I knew anything about COVID-19 (coronavirus). Having something new to fear is ramping up both my anxiety and my fear. Neither of those are good for general wellbeing, especially in someone who’s already chronically ill.
Strategies for Sanity for People with Chronic Illness During the Coronavirus Outbreak
I’ve come up with a short list of things that are essential for me during this time of uncertainty and fear. The spread of the coronavirus and the panic that comes along with it is making life difficult for everyone. I hope this list helps you have a better day.
Go outside, especially when you feel extra anxious. Fresh air (away from other people) is a game-changer.
Breathe deeply. This is obvious, but it’s something I forget almost constantly. When I fear extremely worried, I tend to take shallow breaths. Stopping to focus on taking a few deep, slow breaths really does make a positive difference.
Read. Find books that are totally unrelated to current events and news. I read too much news, but at night, I only allow myself to read non-news items. I’m currently reading the entire 1930s Nancy Drew series.
Document your symptoms and include a few sentences about why you think certain things are better or worse. Documentation is valuable for you as a patient and for any caregiver who may need to know what’s going on with you. Medication, food, hydration, and/or supplements can then be adjusted accordingly to help you live a better life.
Drop any social media that’s causing you to feel bad or inflame existing negativity. I don’t get much good from Facebook nowadays, but Instagram is inspirational and socially connective.
Lyme disease sucks. One of the most frustrating things about Lyme disease in general, and perhaps more so for runners, is the conflicting advice offered by everyone from MDs to herbalists to bloggers. If you’re running with Lyme disease, get ready for an onslaught of “STOP IT RIGHT NOW” from the peanut gallery, combined with other, softer voices that tell you to continue to do what you love. I’ve only been diagnosed with Lyme disease for a couple months, and I’ve already heard more advice (welcome and unwelcome) than I can manage.
All I can speak of is my personal experience. One of my worst, strongest symptoms of Lyme disease is cognitive deficiency. On days when I was able (as in, not exhausted or in too much pain), running literally saved my life. Running became my only outlet for relief. The increased circulation, the endorphins, the outdoor air– I’m sure all these things and more contributed to my improved ability to think on the days I ran. Unfortunately, like many people running with Lyme disease, I hit a point where my physical symptoms became too severe to allow me to run. Reduced mileage wasn’t enough.
Taking a Break from Running
I’m currently in the midst of a break from running. It sucks. A lot. But the muscle spasms in my legs– and I mean every damn muscle from ankle to hip– became so severe that I would wake up in the middle of the night unable to stand up. The pain was incredible. Because the lateral thigh muscles spasmed the hardest, my kneecaps began to track laterally and grind against my femurs. I’m not exaggerating when I say the leg pain became some of the worst, possibly the worst pain I’ve ever felt in my life. There was no way I could run anymore when I couldn’t even walk.
As my legs got worse, I increased my chiropractic treatment frequency, my foam-rolling time, and my stretching routine. Nothing helped. Not magnesium supplements, not a super-clean diet, not topical creams, not ice, not heat. You name it, I tried it. My coworker is a highly experienced massage therapist and referred me to an acupuncturist. I was doubtful, not of acupuncture in general, but of anything helping me. Lyme disease also dishes out a hearty dose of depression and anxiety along with cognitive disfunction, so my cynicism was at an all-time high. I made an acupuncture appointment with little hope for anything more than another pile of confusing advice.
During the initial evaluation, the acupuncturist told me she wasn’t going to target Lyme disease, but rather would target other problems to help with overall health. Her approach made sense to me, and she immediately noted a major deficit in my circulation. I had no doubt she was right, since I’d been spasming so much and my hands and feet are always ice-cold. She told me that, at least for a while, running with Lyme disease should not be on my agenda. I’m not a crier, but I came close to sobbing in front of her. Running was my last grasp on sanity, or at least it felt that way at the time.
I made a deal with her to stop running for a week (not that hard, in some ways, since my leg spasms were so severe). She wanted more time, but I only agreed to stop for a week. She explained that acupuncture, like most natural medicine that works with the body, takes time. I was essentially undoing her work if I kept depleting myself by running while in such poor health. I protested a bit more but eventually agreed to work with her twice per week. There was nothing to lose besides a little time and a lot of money. (The money is for a different post, but as anyone with chronic pain or chronic disease knows, it ain’t cheap to survive, let alone thrive.)
Fast forward to three acupuncture treatments later, and I’m doing better. It’s not just acupuncture– I take more supplements than most people will in a lifetime, wear compression garments, and use epsom salts– but I really feel a difference. It’s not fast, definitely not immediate, but something good is happening. My hands aren’t so cold, and my feet are a little less cold. My spasms decreased to the point that last night, for the first time in weeks, I didn’t wake up in agony or use compression garments in the middle of the night.
Of course my goals are to get extremely healthy, feel great, and beat Lyme disease. At this point, though, I want to get back to running. The reality is, I have to stop for a while so I can start again one day soon. I was well enough yesterday to slowly hike for a couple hours at the national seashore near my house, and that’s a major victory. I want so badly to run again, but I’ve had so many setbacks over the past decade that I’m trying to look at this as just one more temporary speed bump.
My next appointment with the acupuncturist is tomorrow and I actually look forward to it. It’s working, and that’s what matters. Anyway, if you’d like more info on herbal aids for the fight with Lyme, I’ve gotten a ton of help from Stephen Buhner’s book, and his website is archived at this link: Buhner Healing Lyme.
I’m sure I’ll run again, and probably sooner than later. Lyme disease is rarely completely curable unless caught immediately, so “running with Lyme disease” is pretty much my new reality. Running with herniated discs, running with dystonia, and running with fibromyalgia have all been my reality, so here’s another one for the list. I’ll get back out there, just not tomorrow. In the meantime, I’m going to walk, hike, and do as much as I can to stay strong and relatively healthy. It’s pretty cool to say I have a good acupuncturist on my side now. I’m cautiously hopeful and wildly dreaming of running again.
I write about serious health stuff a lot, but I also love to talk about lighthearted and upbeat topics. Life’s about balance, right? So, along with my very serious Lyme disease post, I’m also finishing 2019 by writing a quick highlight of three of my favorite pieces of running gear that I acquired this year.
I was ridiculously devastated when Altra decided to discontinue their Intuition, but their new Kayenta helped dry my tears. They’re different from any shoes I’ve ever worn, but once I got over the novelty, I fell in love. They’re lightweight, flexible, (zero-drop like all Altras), and shaped like my feet. I like the colors, too.
I spent 2019 as a first-year ambassador for Team Headsweats, and it was such a cool experience. Not only did I get to connect with other outdoors-loving athletes, but I also got some really awesome gear from Headsweats. It’s hard to pick my favorite, but their Bigfoot collection wins in my book. I usually run in their high-visibility race hats and hike in the Bigfoot trucker. All of them are comfortable, have a black underside to the brim, and help keep sweat and sun out of my eyes.
AfterShokz Titanium Mini
Many years ago, I ran with a tiny iPod shuffle and conventional headphones. After almost getting hit by a car– like, really almost getting hit– I never wore headphones outdoors again. I ran the wire up my abdomen and stuck the earbuds in my bra. Turning the volume all the way up basically turned them into tiny, horrible-quality speakers, and I sometimes got little raw circles on my chest from where the headphones rubbed. And then (cue the movie music for the big reveal) I read about AfterShokz, a company that produces open-ear, bone-conduction headphones for athletes. They’re life-changing. This photo is of them in action, not bouncing, rubbing, or making me deaf while I run across an intersection. The sound quality is excellent, although I refuse to admit to some of the bizarre and embarrassing stuff that’s on my playlist.
Did you get any new favorite running gear this year? If so, I’d love to hear about it. And here’s to the new year!
I’m constantly on the hunt for healthy recipes that use food as medicine. I’ve tried almost every reasonable anti-inflammatory diet under the sun and found that works best for me is something between paleo and vegan. While those two diets may seem opposite, if you do them right, they can be quite similar. Both diets can, and should, emphasize hearty servings of plant-based nutrition.
Under paleo rules, processed food is a no-go, but a lot of vegan foods are highly processed. No one forces a vegan to buy processed foods, but at least for me, the temptation to do so was difficult to avoid. Now, I take the paleo idea of fresh, whole foods and apply it to veganism— for example, eating a plate of vegetables and fruits instead of a plate of soy cheese and chips. When I was strictly vegan, I fell into the processed food trap way too often and ended up eating “cheese” that had enough mysterious ingredients to be a science experiment. When I went paleo, and then strict paleo under Whole30, I gave up all the junk and focused on truly healthy food. I didn’t like the amount of meat required under paleo, so I eventually merged the two concepts and now feel better than I have in years.
A wonderful woman I met through Instagram posted about some awesome meals she made last week, and I followed the trail to figure out where the recipes originated. That trail led me to Every Last Bite, a food blog run by a woman who manages autoimmune disease through healthy— and delicious— meals. My eyes went straight to her recipe for broccoli fritters, and after a five-mile run through the rain, I decided to give them a try.
My dad brought us three giant heads of broccoli earlier this week, and I’ve been wondering what to do with all of them. The broccoli fritters recipe seemed like the perfect way to use up a good bit of what my dad brought, and it was. There’s only half a head left, which is a pretty big deal considering how much he gave us. The only thing the recipe called for that I wasn’t sure we had on hand was nutritional yeast, but after a quick look through the cabinets, I found I still had plenty in a tightly sealed glass jar. The other ingredient that some people may not have on hand— almond flour— is a staple in our house, and I had a fresh bag ready to use for the fritters.
I don’t have a food processor (well, I do somewhere, but it has yet to show up since our recent move), so I used the small carafe on my Ninja blender. While the broccoli steamed, I blended all the other ingredients into a surprisingly good-smelling batter. When the broccoli was done, I let it cool a little, then sliced it according to the recipe directions. After the olive oil got hot in the pan, I got ready to drop my first spoonfuls into the oil and, hopefully, make something delicious for lunch. I was a little skeptical, mostly because I’m not always the best recipe-follower, but the batter smelled good enough to make me optimistic.
After a few minutes and even more good smells, the first two fritters were ready. I barely waited for them to cool enough before chomping a big bite out of one. It’d been an hour since my run and I’d only had a few grapes, so I was super hungry. I couldn’t believe how good the fritters tasted. They were somewhat like broccoli cheese soup (the cheese flavor comes from the nutritional yeast) mixed with something that tasted fried. Food heaven. I made four large fritters instead of several small ones, and the first two were gone quickly. My wife isn’t usually a fan of broccoli, but I suspected she’d love the fritters, so I reluctantly practiced restraint and waited for her to come home and eat the remaining two. She loved them too, and couldn’t believe how good they were. She even said, “the broccoli is really good in here,” which is a sentence I never thought I’d hear.
I wrote an article about trail running and chronic pain, and it was recently published by Trail Sisters. It’s an unfortunate reality that so many people can relate to stories about living with chronic pain, and while I’m always excited to get my work published, I’d rather see a day when there’s not much market for writing about chronic pain.
Trail Sisters is a group that promotes women’s inclusion in the trail running community, and I’m excited to be part of their mission. Whether you have fibromyalgia, spinal problems, and/or any other kind of chronic health issues, I believe that getting outdoors and moving your body is key to mental health and stress relief. I don’t always feel up to running, and sometimes my body doesn’t cooperate with my mind, but I never regret trying. Click here to read my article on the Trail Sisters website.
I got word this morning that my book won a Florida Authors and Publishers President’s Book Award! There are so many letdowns, rejections, and silences in the publishing industry, and getting a little validation is a really nice feeling. I appreciate everyone’s support along the way.
I had a rough few days and haven’t slept much, so some good news was extra appreciated this morning. Something’s been going on with my low back, and the radiculopathy got way out of control a few nights ago. I’m not sure what’s angered my back this time, but something definitely got it fired up.
The pain and tingling in my legs got so bad that I couldn’t get comfortable in any position. Eventually, out of middle-of-the-night desperation, I took a chance and rotated my torso until I felt and heard a tremendous pop in the upper lumbar area. Even though it was a little scary to twist and crack my spine, the relief was almost instant. I’m still not where I was a week ago, but I was able to run 4 miles this morning and even put in some decent pace on the final mile. I’m sure the morning news that my book is an award-winner helped me speed up a bit on that last mile. Good news helps everything.
I had a really bad day that mostly sucked because something I’d felt a lot of hope about turned out to be nothing. I’m always cautious with my hope, especially about things that seems like long shots anyway, but I guess I was more hopeful than I thought this time, and the letdown was shockingly crushing. It’s just a work thing, not life or death, but sometimes wanting something really bad and working hard for it and then not getting it is devastating. My rational mind says it’s part of a learning process, but that’s easier to say than it is to feel when the letdown is fresh and the pain is raw.
I’m usually not one to eat my feelings, but last night, after a healthy dinner at the local co-op, I eyed a big bag of ranch-flavored tortilla chips. In mild defense of my transgression, the chips were organic (LOL, I know, still fried junk). I decided that if I took a long walk and still wanted them, I’d allow myself to stray from my normally strict diet and indulge a little. The walk didn’t help lift my sadness, and I walked back to the co-op with fifteen minutes to spare before closing and plunked down $2 for the bag of chips. Then, of course, I ate them all. Every single one of them, even though the serving size was for a family.
It was a rare slip for me, and I felt the familiar guilt of eating crap while dealing with chronic health problems, but damn, those chips were good. I tried pouring some in a bowl and eating just that amount, but it wasn’t long before I dumped the whole bag out and feasted. The free-for-all didn’t make the disappointment of the day go away, but I truly enjoyed eating some junk for a change, and that brief feeling of pleasure was a nice distraction.
I worried that I wouldn’t sleep much and would get achy from the processed food, but I ended up sleeping longer (and uninterrupted!) than I have in months. I didn’t even wake up to pee in the middle of the night, which was probably due to the massive salt load I put in my body with my chow fest. And when I woke up this morning, I felt better and less achy than usual.
I’m not advocating a junk food diet, but I think there’s a lesson here for me, and that is to relax and enjoy a treat every now and then. That’s something that can be hard for someone who feels guilt over poor dietary choices, but maybe my thinking should shift to allow more occasional treats. When I woke up this morning, I felt great, ran 4 miles in a thunderstorm, and am way less stiff and sore than usual. Cheers to chips, at least every once in a while.
I got word from my publisher that the Kindle version of my book will be temporarily discounted. Now’s your chance to snag the e-book for less than the price of artisanal coffee!Click here to check it out.
My book, Hurting Like Hell, Living with Gusto: My Battle with Chronic Pain, is helping me spread the word about those of us living with less-than-ideal health. I have no idea where the journey will end, but I’m happy with all the chances I’m getting to advocate for chronic pain patients.
As for my health, I’m having ups and downs as usual, but I keep seeking new information and trying new solutions. I met two awesome chiropractors while I was in metro Atlanta for book tour events, and they gave me invaluable feedback after taking specialized x-rays to analyze my posture. Since meeting with them, I’ve been able to return to running, albeit carefully and not easily. I work hard every day to correct my excessive lumbar lordosis along with the other postural misalignments they showed me on x-ray. Good health is definitely a work in progress, but the work pays off slowly and surely.
I’ve been very busy with the release of my book (yay!) plus continuing to work some healthcare shifts, and the best way to catch up here is a series of random updates. Here they are:
The regenerative medicine doctor is awesome. After several comprehensive blood tests, he settled on a supplement regimen to help me restore some of my health. Based on the results of my blood work (and OMG it was a TON of blood work– never want to do that again), I’m taking more than a dozen supplements twice a day to address things like low testosterone, gut yeast, and inflammation. All of the supplements are purified and/or hypoallergenic. Some of the supplements I take are fish oil, magnesium, turmeric, DHEA, and an interesting little combo called “cognitive aminos.” I feel much better in general, have less anxiety, and have pretty much gotten used to swallowing a zillion capsules a day. All of this, of course, comes at a steep financial price and is NOT covered by my extremely expensive health insurance policy.
I’m midway through Class IV laser treatments on my back. It, too is expensive and not covered by insurance, but it’s really helping. Almost all of the referred pain is gone from my butt, and there’s much less referred pain in my groin and abdomen. I’m still having a hell of a time when I lie down, and I’m losing my mind not being able to work out as much as I want, but the lack of butt pain is miraculous.
Despite trying not to, I still have to take occasional prescription meds. Two nights ago, I took one muscle relaxer because it was 3 a.m. and I was in misery. I don’t even think it did anything clinically except knock me out, but it was nice to have lights out, if only for a few hours.
I started the first round of paperwork to get medical marijuana for muscle spasms. It is an absolutely ridiculous process and it, too, will not be covered by insurance– assuming I’m approved, which is a big assumption. Soap box– I could go get a prescription for something a lot stronger, a lot more addictive, and a lot heavier on the side effects tomorrow and fill it the same day. There’s something very, very wrong with that.
I’m highly skeptical of our modern medical industry— not because of practitioners so much as insurance companies’ influence on patient care. I’ve heard of boutique medicine, which as I understand it is essentially cash-pay for individualized treatment outside the bounds of insurers, but I’d never had experience with that type of doctor. I already pay more than my mortgage every month for our health insurance, then still owe co-pays and deductibles if I actually use the insurance, so the idea of paying fully out of pocket isn’t appealing at all. But desperation breeds willingness to try new things, so I went to an open house for a regenerative medicine doctor who practices outside the confines of insurance interference.
The facility was nice and clean, but not overly ornate. It had less of a clinical feeling and more of a personal vibe, and the doctor and physician’s assistant were welcoming and engaging as they greeted visitors. Instead of a waiting room full of literature about prescription drugs, I saw holistic supplements and bone broth for sale. The doc and PA looked extremely fit and healthy, and while of course looks can be deceiving, as an athlete, I was impressed that they appeared to work hard for their physiques. Cautiously, I began to feel hopeful and wonder if I’d finally found some real medical help. I registered for my first appointment, then went home to fill out a dozen pages of online paperwork.
The questions asked by the clinic’s online health history program were shockingly personal, in a good way. Even for the gender identifier, their were options beyond just male/female. I’m not transgender, but if I were, there was a space to identify as myself. What a breath of fresh air! I listed the various diagnoses I’d received over the years (fibromyalgia, cervical dystonia, guttate psoriasis, etc.), but also answered questions about my diet, exercise, and sleep habits. The forms were more thorough and probing than anything I’d seen at an insurance-accepted place.
A few days later, I sat in my truck outside the office and tried to calm myself with a few deep breaths. I wasn’t nervous about what would happen at the appointment, but I was very nervous that even the cash-pay, uninhibited-by-insurance doctor couldn’t help me. I’d put so much hope in the hands of medical professionals in the past and usually been slapped with disappointment, so I’d mostly quit seeking medical interventions. But May was a really, really hard month for me, and I needed help ASAP.
My appointment was over an hour long— 60+ minutes with just the doctor and me! No interruptions, no hurried feelings, no bullshit. It was more like a conversation than a medical appointment, even though he examined my back and talked about symptoms and tests and nutrition. I pulled out my usual stack of photographic evidence— pictures of my ghost-white fingers (Raynaud’s), rash-covered torso, and a few other oldies-but-goodies. He listened, talked, and drew diagrams on a dry-erase board. Unlike every other doctor’s appointment I’ve ever been to, I never once felt like I was keeping him from something more important than our time together.
I left with orders for comprehensive blood work and a kit for finger-prick testing and urinalysis. The doctor would start investigating from the most basic upward, and would look at everything from my cholesterol levels to potential food sensitivities. Only one lab in town could perform the tests, which told me how out-of-the-ordinary this doctor’s protocols were compared to most MDs. The first test was SpectraCell’s CardioMetabolic Panel (plus a few other things, like hormone levels), and next week I’ll find out the name of the next test.
I also bought several supplements that he recommended, including a highly concentrated and purified version of fish oil capsules. His goal is to attack the systemic inflammation in my body, and while he looks for the cause through blood work, he wants to knock it down as much as possible in the meantime. And no NSAIDs! That was one of the most shocking things he said. I’ve been on and off (mostly on) the NSAID train for so many years, but he’s adamant that NSAIDs actually inhibit healing. I’m sure there are skeptics, but after years of NSAIDs and chronic pain, I’m very willing to try new theories.
I’ve had one blood draw already and will go for the next one next week. Once the results come back, maybe I’ll finally have a path to wellness. Of all the things I’ve tried over the years, this line of medical treatment seems to make the most sense, and for the first time in a long time, I’m hopeful again.