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 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 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’m able to squat again! That probably sounds like a weird thing to celebrate, but I’m absolutely ecstatic. The recovery from my back pain/sacroiliac joint dysfunction has been long and complicated. I still believe that exercise with an emphasis on functional movement is the closest thing to a cure. I stick to my core workout like a religion. That said, it’s a tough road and sometimes I’m exhausted from the dedication it takes to heal myself. My three major holdouts in the battle against back pain have been sleeping, sitting, and squatting.
Sleeping is a night-by-night ordeal. Sometimes I can get comfortable and sleep 3 or 4 hours without even changing positions. Other times I spend almost all night turning, getting up to stretch, stacking and re-stacking pillows under my legs, and generally feeling like shit. Overall, my sleep situation is vastly improved, but if my SI joints are misaligned and put pressure on a nerve or two, I have a miserable night.
Sitting, too, is much improved, although I still can’t tolerate a soft surface like a couch or recliner. I do a lot of computer work while sitting on a wooden piano bench and am grateful I can sit half an hour on my butt. There was a time, not that long ago, when half a minute was torture.
Squatting is a bigger deal than I first realized. For starters, picking anything up with good body mechanics almost always requires squatting, especially if something heavy needs lifting. Petting small dogs requires squatting. Tying shoes requires squatting. You get the idea. I’ve made several adaptations, including training my puppy to get on a chair so I can pet her without squatting (no kidding!), but of course I want to be able to squat. My fitness has somewhat plateaued due to the lack of squatting, since lots of major weightlifting and core exercises require a squat.
A few days ago, after trying some new kneeling exercises to open my hips, I decided to advance to a wide-stance squat. I needed to lift a piece of landscaping concrete and didn’t want to ask for help. Living with chronic pain means frequently asking for help, and I hate asking people to do things for me. I took a deep breath and separated my feet well beyond the width of my hips, then squatted slowly. I waited for the usual searing pain to shoot through my right SI and into my right buttock, but all I felt was a slight twinge. I held the squat for a few seconds and got tears in my eyes. That may sound crazy, but anyone who’s had a physical limitation will understand. When that limitation is lifted—even if only partially—it feels like a personal miracle.
I’m very, very careful with my newfound squatting ability. As much as I’d like to do air squats until I drop (seriously, that’s my idea of fun), I’m only doing ten per day until I’m sure my back can handle more. I’m also resisting the urge to add weight to my squats. Just being able to squat is a huge accomplishment and I don’t want to take it for granted and end up hurt worse than ever.
I don’t keep a gratitude journal, although I probably should. If I did, one of the first things on my list this week would be “ability to squat.” Sometimes the simple things really are the best.
I don’t worry about my activity level—it’s always high when I’m well enough to exercise—but I’m a sucker for data. I have an awesome, old Garmin Forerunner for tracking runs, and my iPod Nano can track runs with its built-in Nike+ app, but I wanted something more basic that I could wear all the time. I’m interested in knowing how active I am throughout the day, not just during exercise. My mom has a Fitbit Flex and likes it a lot, so when I saw a decent sale I got one for myself. I chose bright pink because it was $10 cheaper than the other colors.
When my Fitbit Flex box arrived, I found a small black tracker, two sizes of pink bands, a tiny wireless dongle, and a small USB charger inside the package. I have a prepaid iPhone 4 and can’t use much data, so I opted out of the Fitbit phone app and instead chose Fitbit’s MacBook-compatible program. The interface is user-friendly and easily customizable, and I checked it out while my new Fitbit charged.
From what I can tell, the Fitbit Flex works like a basic pedometer by detecting movement and translating that movement into an estimate of how many steps the wearer takes throughout the day. You can calculate your stride length and input your numbers for better accuracy, and add which arm you wear the tracker on to avoid dominant-hand movements counting as steps. From Fitbit’s website: “Changing this setting to “Dominant” will decrease the sensitivity of step counting and should reduce any over counting of steps when your body is not moving. The “Non Dominant” setting will increase the sensitivity of step counting, and we recommend this setting if your Flex is not counting enough steps.”
The sleep-tracking feature on the Flex intrigued me, since chronic pain often leaves me sleepless. My back pain has majorly decreased lately, which means I’m sleeping a lot more, but I still don’t sleep as well as I should. I hoped the Flex would help me analyze how often I stir around and disturb my sleep, but it didn’t work out for me. The first night that I put my tracker into sleep mode, I obsessed so much on having something around my wrist that I couldn’t go to sleep. Even without neuroses (yes, I can be a bit obsessive to say the least), the sleep tracking feature isn’t particularly sophisticated and can be prone to flaws, but I still wish it would’ve worked for me. It’s possible to lie still while wide awake and have the tracker register that you’re sleeping soundly, but when I’m in pain I don’t lie still, so that wouldn’t have been a problem for me.
If any of the Fitbit features are something I don’t want to use, I can easily remove them from my dashboard so I don’t have to look at them daily. I took off the sleep box to avoid reminders that I didn’t track my sleep. Another one I removed was the weight information and food tracking. I don’t have any desire to track my calories. The water-tracking feature can be helpful, though, especially since I’m prone to dehydration. It’s a serious concern for athletes in Florida.
My major gripe about the Flex so far is its sensitivity. It’s supposed to be compatible with an active lifestyle, but I’ve found that a lot of my daily movements put it into sleep mode. Sleep mode activates when you tap rapidly on the tracker for a few seconds. For me, it also activates when I mow the grass (vibration from the mower, I guess), pat the dog’s belly, or ride over bumpy terrain on my bicycle. I’m an old drummer and still have a habit of drumming my hands on the counter or my thighs, and that, too, sends the Flex into sleep mode. Not cool.
I saw a Black Friday sale that would’ve made it a lot cheaper than what I paid (even though I got mine on sale), and of course that was aggravating. I have concerns about the durability of the bands, and the expense of name-brand replacement bands is ridiculous. The bright pink has already gotten a bit dull after a couple of weeks, so I ordered a few off-brand (read: way cheaper) replacement bands, but I don’t appreciate having to do that. Can you imagine if we had to buy new watchbands every month? Fitbit needs to work on durability for sure.
I’ve worn the Flex while running several times, and it’s been fine. The tracker and band are lightweight and comfortable. Sweat sometimes collects inside the band, so I always take out the tracker after a run and make sure it’s dry. The Flex is water-resistant but not waterproof, which is annoying, but so far I haven’t had problems with sweat or shower water ruining it.
Despite some drawbacks, I like the Flex. It’s a great reminder if I’m working on the computer to get up and move around instead of melting into my chair. My mom and I are “friends” on Fitbit’s online program, and we can see each other’s step counts and cheer each other on if so inclined. I upped my goal to 15,000 steps per day from the stock 10,000, and I’ve found it pretty easy to reach 15,000, but the tracking software allows me to see my most active hours of the day rather than just displaying my number of steps. Which reminds me—it’s time to conclude this review and do my lower back a favor and go for a walk.
Pros: lightweight; choice of colors; easy and user-friendly online tracking program; comes with two sizes of bands; creates a good reminder to get up and move around throughout the day.
Cons: too sensitive—can go into sleep mode accidentally; bands aren’t durable and color doesn’t stay fresh; replacement bands are expensive; can be hard to snap onto wrist.
Sleep is a sticking point for a body in chronic pain. It’s what I crave the most—to just lie down and close my eyes and not wake up for hours—but it’s often a craving left unsatisfied. Most mornings begin one of three ways.
I wake up as the dogs rattle around in the kitchen, sniffing for errant kibble under their blankets and bowls. I take stock of the situation—is it really morning? How much sleep was I able to get? What muscles are spasming? Am I able to turn my head or is it stuck in one direction or the other? I’m stiff, sore, and need to get out of bed quickly before I can’t get up at all, but I’m thankful to have gotten a few hours of sleep.
Or, I wake up at 3 a.m., my hips throbbing, an electric-like pain shooting across my pelvis. My neck is stiff, my leg muscles are rigid, and nerves light up throughout my body. I stand up in the dark because I can’t stand the pressure on my body as I lie on the bed.
And there are the mornings that are merely extensions of the previous night. Those are the hardest, the ones where no matter how many times I change positions or alternate between the bed and a camping mattress on the floor, I can’t get comfortable. I’m exhausted but in too much pain to sleep. Midnight, two a.m., sunrise, all come and go. Eventually I get up, defeated by my own body, and try to start another day.
I used to take sleep for granted. In college, I’d fall asleep on a cheap blow-up mattress and wake up feeling like a million bucks. Before chronic pain, if I said I didn’t get enough sleep, I meant that I’d had four or five hours of rest. Now, those hours are days. My record is ninety-six hours without sleep, and by the time I finally took enough muscle relaxers to knock myself out, I was shaky and cold and thought I might die.
I hate prescription medication. I use vitamin B supplements, sublingual melatonin, and organic tea to try to sleep. But occasionally, on nights when nothing else works, I reach for a bottle of pills. It’s one of the worst kind of defeats—to admit that my body is attacking itself, trying to stay awake through the hours meant for sleep.
I try to look at chronic pain as a test, a puzzle that must be worked with through trial and error until my body and I come up with a livable solution. I exercise daily, often spending an hour working on my core muscles to help alleviate the pressure on my spine. I eat a restricted diet, avoiding sugar and corn and gluten and a lot of other things that seem to inflame my body. I have a pretty good survival system, but chronic pain is a fulltime job. Every bite of food, every push of a heavy door, every reach overhead to pull on a fan—every single thing has to be carefully planned, because a wrong move can leave me debilitated for days or weeks.
Sometimes, when I’m able to sleep, I drift off to lucid dreams in which I’m running half marathons again, or scoring goals on the soccer field, or finishing my first triathlon. They’re beautiful dreams, but because they’re lucid, I know there’s a certain sense of falsehood in them. Willpower and hope keep me fighting through the sleepless nights. I may not be able to run again yet, but I want to, and desire is a powerful thing. I get mad sometimes—a resentful, ugly mad—but I try to channel that anger into healing. Chronic pain owns the mind as much as it owns the body, and staying hopeful that one day I’ll be okay is my way of telling it to kiss my pain-free ass.
Has anybody tried a supplement called Calm Thoughts? I’ve been using it lately and have had a week of fantastic results. I’ve been sleeping almost normally for the first time in years, and my pain is way down.
I’m off all prescriptions, and so thankful to be out of the vicious cycle of one pill begetting another. Chronic pain and illness (including fibromyalgia) often necessitates prescriptions, but I hate taking them. I’m much happier if I can safely and effectively use homeopathic supplements.
Now that I’m sleeping, I wonder if the massive improvement in my symptoms is due to the supplements themselves or the repair my body is able to do while it sleeps. We all know how important sleep is to healing, so it stands to reason for me that my return to restful sleeping might be the best chronic pain medicine available.
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?
5. Wash your hands frequently and thoroughly. This seems like a no-brainer, but I stayed well through the entire fall season when a lot of people were sick. I think a lot of my wellness had to do with washing my hands with warm water and soap more often than I wanted to—especially after grocery shopping, checking the mail, and at work.
4. Sleep. Having fibromyalgia or any kind of chronic pain can make sleep very difficult, but do what you can to get as many hours as possible. I’ve taken to sleeping on my camping mattress on the floor with my legs on three pillows. I look ridiculous, but my back hurts less and I’m able to rest.
3. Try herbal supplements and teas. I like spirulina and Counter Attack. They taste bad and require a quick swallow and lots of water, but they make me feel energized. I also like Throat Coat tea. Of course, make sure your healthcare provider clears you to take supplements before you try them.
2. Exercise outdoors. Even if I only go for a short walk in the woods, I immediately feel better physically and mentally. The clean air and peacefulness helps me connect to the planet, and the movement helps with my stiff joints. I feel sick in general if I don’t get time outdoors.
1. Avoid processed foods—especially sugar. There are lots of studies that show the negative effects of processed sugar. Yes, it tastes good, but feeling like crap and/or getting very ill isn’t worth the momentary blissful taste. Fresh blueberries will taste super sweet after you get used to abstaining from processed sugar, so go for fruit if you need something sugary. As a side note, I ate some candy and cookies as the new year approached, and caught a very bad cold within a few days. Coincidence? Maybe, but I’d been healthy for 14 months before, and those were 14 processed-sugar-free months.