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.
Fresh air can make a world of difference when I feel extra anxious.
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.
This is me on the last day I ran before making a deal with my acupuncturist to take a break.
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.
Acupuncture
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.)
Progress
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.
Running Again
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.
Screenshot of my article’s promotion in the Trail Sisters newsletter. More photos available on the Trail Sisters site.
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.
The book is a spinoff of the Fibromyalgia Athlete blog and tells some backstory and a lot more details of my journey with chronic pain.
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 bought a Tuft & Needle mattress last week and it arrived yesterday. I’d heard great things about their mattresses and ordered one to try. I hate the high pressure and high prices in mattress stores and have never felt that lying on a bed in a showroom gave me a realistic impression of how the mattress would perform at home. Tuft & Needle has a great guarantee and their mattresses are made in the US. Their prices seem fair— not dirt-cheap, but they shouldn’t be, since they’re good quality— and they use a patented type of foam that’s supposed to be awesome. The mattress arrived within a few days, as promised, and was tightly rolled in plastic for shipping. It was heavier than I expected, but two of us were able to get it into the house and out of the box.
After we cut away the plastic, the mattress expanded. It was like magic. Not only did it get much bigger than its shipping size, but it quickly took nice, firm shape. Tuft & Needle advises waiting 2-3 hours before lying on it, so I let it air out in the bedroom while I went for a long walk and played with my dogs. The mattress had a bit of an odor, but nothing like the horrific, chemically smell I’ve experienced with other new mattresses. When it was time for bed, the odor was only detectable if I put my nose against the mattress.
I stretched out on the mattress with high but cautious hope. Sleeping—especially getting comfortable at night— is still a major problem for me. I’d done a two-hour private yoga session that morning to try to work on my rigid legs, and my back was aggravated from the new movements. The Tuft & Needle mattress had to be perfect if I was going to get any sleep at all.
And it was perfect. I mean, literally perfect. I still had to stack pillows under my knees to keep my back comfortable, but that’s no fault of any mattress. Once I arranged myself into my usual sleeping position, I laid there and closed my eyes and waited for discomfort that never came. The mattress was absolutely awesome— the best surface I’ve slept on in many years.
I needed to shift to my side once during the night, and because the T&N is quite firm, I had to make sure the fatter part of my cervical pillow was stuffed under my neck just right. Twenty seconds or so of pillow placement yielded good results, and I slept for another two hours without disturbance.
When I woke up this morning, my usual aches and pains weren’t cured (and I didn’t expect them to be), but I’d slept well and actually look forward to going to bed tonight. I haven’t looked forward to going to bed in as long as I can remember, because it’s usually a disappointing battle that leaves me stiff and in pain. Assuming the T&N keeps up its quality, I can see where sleeping on it could be life-changing.
This afternoon, I contacted one of their customer service reps to ask if they make camping versions of their mattresses. They don’t (yet?!), but the rep was not only instantly available via online chat, but extremely helpful and polite. What a relief, and a departure from the norm for a lot of purchases— a good product, good customer service, and made in the United States.
I have no connection at all to Tuft & Needle. I paid full price for my mattress and only wrote this review because I hope other people will read it and potentially find something that may help them sleep comfortably. Night-night, y’all.
I’m making a major effort to organize and restructure my life. The reasons are varied, but the bottom line is I need to be more productive if I’m going to have a shot at accomplishing my major life goals. Lately I’ve dedicated a lot of thought to what I want my life to look like, and I realized (no shock) that my lack of Type-A tendencies hold me back from getting the most from my days. My brain is scattered, my workspace is scattered, and there’s no way I’m maxing out my potential in the midst of chaos. I could make excuses, some of which are legitimate (like how exhausting it is to fight chronic health issues), but the crux of the problem remains the same—I have goals, and I can’t accomplish them if I don’t get organized.
I put together some inspiration to hang over my newly organized desk. These are just simple notecards I wrote on and laid out before tacking them onto a cork board.
I printed a simple Excel spreadsheet to itemize my days and times, and started yesterday by filling in what I did with each time block. My ultimate plan is to write myself a schedule and adhere to it come hell or high water, but for now I’m just feeling out what a truly organized life will be like. I spent three hours going through stacks of paper, drawers of random stuff, and bins with pens that don’t write anymore. I chose to work meticulously rather than just tidying my space, and the task definitely started to drag. However, when I was done, I had a usable, organized desk. A large paper grocery bag full of recyclables proved just how much crap I’d kept for years.
I also confirmed what I suspected—I’ve let my health problems dictate too much of my days. There are times when that can’t be helped, but overall, even attention to a health crisis can be scheduled in a spreadsheet. I’ve been nearly killing myself by running too late in the mornings. By the time I get around to running, it’s usually 92-95 degrees in the shade. I struggle with getting comfortable at night, which means I often don’t sleep well, which, in turn, means I don’t move very efficiently in the morning. When I do get up, I take a lot of time to traction and stretch my back, rub Cryoderm on my neck, and/or do whatever else my body demands. It’s sometimes 10 a.m. before I run, and that’s not the smartest routine in the summer in the Deep South. It’s also a productivity-killer.
Fix number one was definitely organizing my desk. I’m not entirely sure if it’s true that a cluttered space equals a cluttered mind, but I feel better when I look at my newly arranged workspace. It’s been a source of embarrassment for years, and the piles of junk on it have definitely hindered my productivity. Now it’s a place that signifies pride in myself and my work and dedication to my future. Seriously, it seems that important.
Fix number two is saying to hell with my health problems and insomnia and getting up early anyway. (I used to work the 5 a.m. – 5 p.m. shift, so it’s not like I’ve never had to get up early.) I set my alarm for 6:30 a.m., but when I still couldn’t get comfortable enough to sleep at 1 a.m., I grabbed my phone and changed the alarm to 7. It felt a little like defeat, but I respect my body enough not to punish myself too much for my pain. Guilt over health conditions is absolutely counter-productive. At 6:57, I woke up anyway and turned off the alarm before it could blare. That small action empowered me, and I headed to the kitchen to wake the dogs and put them out to do their business.
Side note—as far as “doing business,” like many runners, I much prefer to do mine before I run. I knew there was a possibility that last night’s dinner wouldn’t get moving at such an early hour, and I was right. Luckily, nothing catastrophic happened, although it was a little weird to head out the door to run before using the bathroom.
I drank ½ a cup of coffee and ate a Larabar, rubbed sunscreen on my face, and put on the running clothes I’d laid out the night before. I paced around the house as a preliminary warm-up, and played with our puppy for some dynamic movement. I sat on the porch stairs for a minute and self-tractioned my back, then knocked my SI joints into alignment against the tiled steps. So far, so good, and I was out the door before 8 a.m. to start my warm-up walk.
Electronic proof of a solid run. I used my refurbished iPod Nano and the Nike+ app to track my route, and the nice background pic belongs to the app.
The run wasn’t glorious or amazing or any of those other words I’d hoped would apply, but it was pretty damn good. The sun was still low enough that the mature trees in our neighborhood blocked it from directly cooking me, and the asphalt hadn’t heated up to the point of steam and odor yet. The bayou looked peaceful, almost like it was just waking up, too. I was covered in sweat by the end of my five-mile route, but not completely drenched like I am when I run later. The best part was, I wasn’t exhausted. I came home completely sold on running early in the morning and determined to back that alarm up to 6:30 and eventually to 6.
So far, my time log looks a lot better than yesterday’s. I couldn’t sleep two nights ago, partly because a nasty outbreak of psoriasis itched so bad that it kept me up. The skin calamity was the main reason I didn’t get up until almost 9 yesterday, but it had a strong effect on my productivity. What I’ve also realized is, staying in bed later doesn’t make me any less tired or any less itchy or really affect my pain and discomfort at all. In fact, I was less stiff this morning than usual after less time in bed.
Today’s To Do list is long, and it’s a good feeling to be partway through it at only 10:25 in the morning. I’m figuring out that I thrive off the sense of control I get from being extremely organized. Chronic pain demands so much attention, and it’s nice to fight back by telling my body that it’ll still get the help it needs, but that it’ll have to be helped efficiently and within my schedule. I truly feel empowered (also somewhat due to being able to squat again, which I’m sure makes me mentally and physically stronger!), and “empowerment” is something I haven’t really experienced in years. It’s a damn good feeling.
Our local co-op was full of beautiful, fresh foods today. I brought home several bags full of organic fruits and vegetables and made lunch. I have a weakness for commercial salad dressing, but otherwise my lunch was about as healthy as food gets. I try not to take for granted how lucky I am to live a life that allows me daily access to clean food. Today’s veggies were too pretty to keep to myself!
Love can’t beat chronic pain, but it’s some of the best medicine available. Last week we adopted a little puppy who’d spent her entire life in a cage at the county animal shelter. She was terrified when I first set her down on the grass, but when I rubbed her back and encouraged her with kind words, she jumped up and down and spun around like a maniac.
It took her a few days to get used to a real home, but now she’s blending in beautifully and doing all the adorable and troublesome things young puppies do. She and our 10-year-old beagle, Otis, have already bonded pretty well, and even our grumpy old terrier, Abbie, has played with her a few times. All three dogs are asleep right now and it’s a beautiful sight.
We needed two days to settle on a name for her and finally chose Roo, like kangaroo, since she has long back legs and jumps like she’s made of rubber. She’s a sweet, sweet girl, and we already love her very much. Rubbing her soft belly or massaging her chubby paws is very calming to me and beats the hell out of any painkiller I’ve ever been prescribed.
I wrapped my ankle with a soft icepack and a bandage, then elevated it while Otis watched from the couch.
I don’t often have a so-called normal injury, but when I do, it’s a tough battle to force myself to take care of it. I worked on some posts about chronic pain and insomnia this weekend (which I’ll publish soon), then ironically got a relatively great night of sleep. I woke up Sunday morning ready to run. The weather was beautiful, I’d actually gotten some rest, and my back and neck were behaving pretty well. I decided to go 9-10 miles, depending on how I felt on the road.
I took off on terrain I’ve run on for years and was quickly bored with the usual sights and sounds. On a whim, I ducked behind some fenced-off private property (no location details here, but don’t try this at home, kids) and discovered a network of hidden trails in the middle of suburbia. Birds sung loudly, the air felt fresher, and all I could see were trees—real, hardwood trees! I had no idea how long the trails would last, but I hoped for at least five minutes of traffic-free running.
As I rounded a corner under a canopy of oaks, I realized I’d been in the woods for at least a mile. I was thrilled. So thrilled that I stopped paying close attention to the leaf-covered ground ahead. I ran at a 7:30 per mile pace, fast for me on a long run, and felt carefree. My feet landed on soft ground and I couldn’t smell smog or see any cars. I looked up at a cardinal in a tree and my right foot came down on a small stump. My ankle rolled so badly that I felt my fibula slam into the ground. I heard and felt a “pop” but instinctively kept running. Continuing to move was my way of assessing damage.
A few steps later I decided, despite the pop and severity of the roll, nothing was badly damaged. Pain shot up from my ankle to my knee on initial impact, but the sharpness dulled to an ache as I kept running. “Stupid,” I said aloud. “Watch where you’re going.” I was lucky, for sure, but I also make a habit of running in grassy medians and through debris-strewn parks as much as possible to help keep my ankles strong. I’m pretty sure Sunday’s outcome would’ve been a lot worse if I hadn’t spent lots of time strengthening my ankles.
I managed another eight miles after the trail ended and returned home full of excitement, energy and nagging concern for my ankle. I drank coconut water and described the trails to my wife, who smiled but expressed her disapproval at my adventure. She was right—I should at least tell her where I’m going if I decide to cover new ground. Oh, well. Live to die another day.
I spent the rest of the day like normal, throwing toys for the dogs, reading magazines, and stretching my tired body. My Achilles tendon ached, but my ankle didn’t show any swelling. I pinched along the margins of the tendon and it was sore, but everything seemed relatively in order. Then, as is the case with many sports injuries, nightfall brought pain and stiffness.
By the next morning my ankle and Achilles throbbed. My foot, ankle, and knee were stiff, and I tried everything I could think of to remain in denial about the injury (although I ordered some K Tape, so I wasn’t in complete denial). I have chronic pain—not normal injuries! I don’t have time for normal injuries! A sprained ankle and a sore tendon seem so alien.
The ankle felt unstable, so I bought a cheap drugstore compression sleeve to add support. I was able to walk around the neighborhood, but that was probably stupid. I felt worse after the walk. I hoped to run this morning—not quite two days after the initial injury—but when I woke up (yes, I slept again!) I knew it would be a very dumb idea to run. I probably could, but what if I turned the ankle again? I’ve seen friends with horrific Achilles injuries, and I don’t ever want one of my own. I put the compression sleeve on and set out for a walk. Too much pain. Time for plan B.
I ended up riding my bike around the neighborhood, but if I put the bike into a gear that offered much resistance, my Achilles screamed at me. I managed 25 minutes and headed for home. I couldn’t believe that all of my chronic pain issues were finally, blessedly feeling under control, but I was sidelined by an avoidable, normal injury.
As soon as I finish typing I’ll wrap my ankle in ice and elevate it for 15-20 minutes. I’m trying not to jump out of my skin about being unable to run. My perspective is weird—on one hand, I’ve dealt with horrific health issues that kept me from running (or doing much of anything) for a long time, so a few days off for a sprained ankle shouldn’t be a big deal. But, because of those stolen years when pain and bad health kept me down, I don’t want to lay off another day. More down time seems unbearable.
The reality is, those of us with chronic pain still get routine injuries, too, and we have to treat them with respect. Time to ice my ankle, dammit.
