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 going through a weird stage with back pain. It’s not new, but it seems especially magnified in recent months. I’m stronger than I have been in a long time, despite being almost completely unable to run. But almost magically (and not in a good way!) when I lie down in bed, the pain starts with a vengeance. I don’t know exactly what’s happening, but even my usual trick of elevating my legs isn’t helping as much as it used to. Something is definitely shifting when I get in bed, and it’s happening no matter what mattress I try— new, old, foam, springs, etc.
I get sciatica-type symptoms that start with a burning/tingling pain in my right butt cheek and trace down my leg to the hamstring, lateral thigh, and sometimes all the way to the heel. Next comes intense pain in the right front hip, and once it starts, it’s very hard to stop it.
I got a new bike— a cruiser with a very stable seat to keep my SI joints from getting angry— and can ride it without aggravating my back, which is awesome. It’s easy on my neck, too, since I sit upright in the seat rather than leaning over to reach the handlebars. I walk 5 or more miles every day, lift light weights, do a core workout like it’s my religion, and row a mile on our awesome Concept2 machine. For these reasons, I’m pretty strong, although I really want to return to more freedom and running. The lack of comfortable sleep position is maddening, and the pain can be crazy-making. Sometimes I change positions for three hours before I can go to sleep, but other times I get lucky and only move around for about an hour before conking out. It’s very frustrating to go to bed exhausted but unable to sleep because of pain. Lately, I sometimes have no pain at all until I lie down, which is quite bizarre.
No matter how long this shit goes on with chronic pain, I’m never able to get to used to it. There’s still some huge part of me that thinks it’s temporary, or maybe fake, despite making some serious strides toward peace with reality. But when I watch soccer on TV, I still feel the field under my cleans, the ball against my feet, and the rush of adrenaline from scoring a goal. I’m not sure that longing to play sports, to compete, to be free, will ever go away.
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 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.
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.
I woke up at 7:59 this morning with my back in alignment and my neck mostly mobile. My wife and dogs snored lightly in rhythm, and as I took stock of my body and nothing hurt, I knew it would be a great day.
I decided to go for eight miles instead of ten, partly because I’d recently fought a sinus infection and partly because I wanted to get back home ASAP and deal with my visions of waffles and bacon (although I eventually ate roasted chicken and mixed greens).
The air was colder and windier than I’d hoped, but the sun made my goose bumps lie flat, and by the fourth mile, I was actually sweating while wearing shorts in February.
I rounded a corner near a cemetery and the bright yellow butt of a plastic pony stuck out of the dirt like a beacon. I didn’t know how badly she was wounded, but I knew we needed each other. I tugged on her back legs and plucked her like a mushroom out of the dirt. Dirt dulled her sheen and filled the swoop between her pink hair and yellow face. The turquoise paint that colored her eyes was partly worn away and she had linear cuts through her plastic flesh. One of her ears was almost shorn off. She’d obviously been hit by a mower, but she was beautiful.
I ran with the little plastic pony in my palm, the space between her legs and belly perfectly suited for my fingers to grip her securely. I resisted the urge to talk to her as the miles ticked by. I didn’t just feel good—I felt great, like I didn’t really have chronic pain anymore. I felt like a normal, healthy runner, and I smiled with every footfall. A real, entire night of sleep is rare for me, but last night I’d scored one, and the difference in my body and mind was incredible.
I dodged potholes and broken sidewalks and thought about the last couple of years of rebuilding my writing career that I threw away for a long list of stupid reasons. I thought about how those same years haven’t been good to my body, despite my addiction to health food and exercise. I’ve busted my ass and scored new writing and editing jobs, but I still work in healthcare to pay my bills. I used to obsess over wanting to rewind my life to that moment when I walked away from a potentially awesome book contract, but recently I realized that the anxiety over what could have been was literally killing me. My body hurt anyway, but when I thought about what I’d given up, my muscles went into lockdown and I slipped into misery. My fingers curled around the plastic pony and I realized I’d buried myself headfirst in dirt and hit myself with a mower. You dumbass, I thought, not for the first time.
Of course I’d known for years (and beaten myself up for it daily) that I’d made poor choices and possibly squandered the rest of my life as a writer, but only recently did I understand that I have to move on. Not just want to move on—I have to move on. Maybe a combination of friends’ Facebook-posted internet memes—I particularly like the ones that tell you to go after what you want no matter what—and my erratic health helped me see the light. While I may never forgive myself for some of my questionable choices, the worst choice of all would be to give up again just as I start to rebuild.
I stared into the shabby eye of my new pony as I rounded out the eighth mile of the morning run. I realized I’d pulled my own head out of the sand when I decided to reclaim my health and writing career. Lots of days I feel like I’ve been hit by a mower, but so what? Life is short whether I feel well or not, so I might as well live it wide open.
I’m about to travel to Boston soon, and I’m super excited. I love Boston and will get to spend time with a much-loved friend from college days. However, chronic conditions threaten to put a kink in my travel plans, and I’ve been running around town and spending lots of time on the internet trying to make my travels as smooth as possible.
One of my concerns, secondary to my chronic neck and back pain, is psoriasis. I’ve been dealing with an outbreak of guttate psoriasis for almost two months now, and it’s tedious to say the least. It’s currently under control on my limbs, but my torso is covered in angry red patches. My insurance company—this makes me so freakin’ furious I almost can’t see straight—is attempting to deny coverage for the topical medication my doctor prescribed to rid me of the psoriasis outbreak, so I’m walking around itchy and feeling gross. The medicine would be $800+ if I paid out of pocket, and not only can I not afford that, but I absolutely refuse to pay out of pocket for something insurance should cover. We pay more than $1,000 per month for the married couple’s policy, yet it doesn’t cover the one prescription medication I’ve needed in a long time.
I’m trying to deal with the psoriasis without prescriptions and so far haven’t gotten good results at all. Gluten-free, dairy-free, sugar-free diet—yes. Scent-free hypoallergenic bath soap—yes. While a restrictive, healthy diet and organic soap likely help my overall health, the psoriasis persists. I’m very lucky that it’s only guttate and not a more serious form, but it still sucks. I don’t want to compound the discomfort of travel by itching like hell, but it looks like I may not have a choice.
What really worries me about travel is my insomnia and chronic pain. I still can’t sit on a soft surface, despite experience massive improvement in pelvic stability since dedicating myself to a challenging core workout routine. I’ve even returned to running—a huge, happy milestone—but sitting on a soft surface (like a plane seat) is almost impossible. Something about cushioned seating makes my pelvis shift, which causes instant misery. I plan to stand as much as possible and kneel in my seat if I have too. I’m a small person, so hopefully I can do what I need to do without bothering my fellow travelers. If not, I guess I’ll probably end up inspiring someone’s bitchy Facebook post about a squirming seatmate. Sorry in advance.
I always worry about an impending attack of cervical dystonia, and change is my enemy as far as muscle spasms are concerned. I’m going to try to fit my cervical pillow into my suitcase so at least I’ll have a familiar place to rest my head and neck at night. Flying up the coast and sleeping in an unfamiliar bed worry me, but I refuse to let my sketchy health rule my life.
I bought some homeopathic zinc lozenges today and will use Counter Attack supplements to try to help my body through the germs it’ll encounter in airports and new cities. I also bought some hypoallergenic cleansing wipes and will make sure to scrub my phone with wipes, too. I’m not paranoid, just realistic, and I imagine anyone with chronic pain and/or chronic disease can relate.
I have some great news! I’m able to run again. I’ve actually been running for a couple of weeks, but I waited to share until I was sure I was going to be able to return to running consistently. I took a picture of my watch this morning to help me document my celebration. That’s 40 minutes of running! This is a huge victory for me. I already feel my sanity returning and my thoughts clearing.
In other news, I’m battling hives again. Do any other fibromyalgia patients get unexplained skin issues? I’ve had two punch biopsies (ouch!) over the years. One dermatologist said the hives are an allergic reaction. To what, he didn’t know. The other dermatologist said I have guttate psoriasis. I tend to disbelieve both of them. Either way, my hives itch. They’re currently on my trunk, elbows, wrists, left breast, and right knee pit. Luckily they’re not nearly as bad as they have been in the past, although I wish they’d go away. It’s so much easier to deal with the hives since I’m running again. There’s something about running that makes me feel like I can take on anything.
I’m not sure what my next running goals are. I’m hesitant to make any new goals since I’m still just grateful to be able to get out there and run. The core exercises that I do every day have made a huge difference in my life. I’m convinced that increasing my core strength and stability has helped stabilize my SI joints. The spinal support offered by strong muscles is fantastic. And the proof is in my return to running. Planks suck, but they work. I have to be very careful with my movements to keep my back pain-free, but I’m running again, so I feel pretty damn good.
Chronic pain can keep even the most dedicated exercisers from their daily workout. Over the past year, the pain in my back and right hip was so debilitating that I couldn’t get comfortable anywhere. I gave up running (but recently made a comeback!) and weightlifting on top of everything else I’ve given up to fibromyalgia and dystonia over the years. But almost every day, I made a point to get myself out of the house to walk, with the exception of a few days when muscles spasms kept me locked in a fetal ball in the bedroom. My trial and error workouts through fifteen months of low back/hip pain helped me come up with some advice for people who also deal with chronic pain but still want to exercise.
Unless weather-prohibitive, getting outside is often the first step to activity. Chronic pain is depressing and disheartening and can feel like it steals your soul. Stepping or wheeling outside to feel fresh air and hear bird sing is instantly uplifting. Once you’re outside, you’re more likely to at least walk/wheel around the block.
Find Something That Works For You
Maybe you’re a lifelong athlete like me, and “exercise” means soccer, running, or other high-intensity sports. Recognizing that your body no longer cooperates with your mind’s desires is no easy pill to swallow. Find something that works for you. Swimming and water aerobics are usually great workouts for people with chronic pain issues because there’s little impact on the body. While it doesn’t carry the same adrenaline rush of running fast down a hill, walking around your neighborhood can be mentally cleansing and physically uplifting. Just because you can’t do what you used to do doesn’t mean there isn’t something out there that will work for you.
Mind Your Medications
I’ve experienced medication side effects that were worse than the original problem I suffered. Even medications that you might have taken for years can suddenly start reacting differently in your body. Take a few days to list all the medications you take, the time(s) of day you take them, and how they effect your mind and body. You might find that something either doesn’t work for you at all anymore and you need to call your doctor, or that a certain prescription makes you feel exhausted. Once you’re more aware of what you’re taking and what it’s doing to you, it can be easier to decide on a time of day that’s best for activity.
If At First You Don’t Succeed…
Keep trying. Chronic pain is a nasty demon, but some days you might be capable of things that other days just won’t work. I’ve started running again despite feeling for a year that I’d never be able to run a step. I stuck to a strict stretching routine every night, and eventually the flexibility gained in my legs helped me return to running about 20 minutes every other day. That’s nothing compared to the 2+ hours per day I used to run, but it’s empowering to be back in action. I was afraid to hurt myself and took my return very slowly and carefully and definitely got bad results the first few times I tried. But, eventually, I ran for 5 minutes and felt pretty good, then used that short run as a steppingstone.
Flexibility is so important for everybody, but especially for chronic pain patients. Range of motion in joints can be severely limited by tight muscles, and the less you move around, the tighter those muscles become. Many medical conditions contribute to severe muscle spasms (I have cervical dystonia) that can’t be undone, but for the most part, at least some area of your body is probably accessible to stretch. I found that even on my worst days, stretching my hamstrings helped relieve low back pain. You don’t have to do anything drastic—just gentle stretching will help. A physical therapist can be a great resource to set you on a safe path to a more flexible body.
Good luck to you! Chronic pain is awful, but reclaiming your life and moving your body can do worlds of good.
Of course, like all things health-related, ask your healthcare professional before undertaking anything out of the ordinary. Everybody’s medical conditions are different and should be respected as such. Exercise is great medicine, but make sure you get cleared to participate first!
Fibromyalgia sucks. It really does. I decided to start using Mondays as an opportunity to create some smiles, because we all need humor whether we have chronic illnesses or not.
Otis, my sweet beagle (or at least he’s mostly beagle) always helps me feel better no matter what’s wrong. He’s been my loving companion for 9 ½ years and is the gentlest little guy I know. In the spirit of sharing, I hope this picture makes your day better!
Fibromyalgia sucks. Dogs rule. Have a great day, friends!
Has anyone tried creative visualization? As best as I understand it, focusing on something that you want is supposed to help make it happen. It’s a lot like envisioning how you want your life to be, focusing on that vision, and making it happen.
My visualization of my life has always included sports and outdoor activities. Fibromyalgia has tried very hard to take that vision away. Lately, in part thanks to awesome words from a reader (thanks Stephanie AC), I’m trying creative visualization for the first time. Rather than just imagining something and feeling defeated because it can’t happen, I’m going to imagine it as an attainable reality.
My (hopefully) attainable reality is returning to running. I don’t even have to close my eyes to imagine what it will be like to return to the freedom of moving quickly on my own two feet. Earlier today I drove over the bayou bridge near my house and could almost feel what it would be like to run across that bridge like I did for years. I imagined the salty smell, the hard wind, and the sound of seagulls. I imagined the childlike joy of running so fast down the hill before the bridge that it would feel like flying.
I’m shifting those visions that I’ve always had into energy toward reality rather than disappointment. We’re having almost spring-like weather in northwest Florida right now, and I would love—no, I WILL love to go outside and run in the sun.
I’m curious what you do when you want to do something so bad but you know it’s potentially disastrous for your health. Bottom line—with every fiber of my being I want to return to running, but I’m scared to death of the post-run nighttime pain that made me howl like a wounded animal the last time I ran.
When I see people running, I feel a mixture of hope and bitterness and excitement and disappointment and jealousy. I’m happy for them that they get to experience the joy and challenge of running, but I desperately want to return to one of the last things I had to give up. Soccer is unrealistic. Tennis is probably unrealistic, too. Same with rollerblading. But running was my holdout, the final thing I kept for myself for peace, clarity, adventure, and release.
My internal debate gets more heated every day. I’m walking several miles (and sometimes as many as 5 hours) daily, so it seems like running a few minutes in the midst of all that walking wouldn’t be a big deal. But every time I almost embrace freedom and take off, I think about the way my hips and back felt the night after the last time I ran, and I keep walking instead.
Is there anything you’ve given up for fibromyalgia that you’ve reclaimed? If so, did it come with a price, and is the price worth it?