Disabled at the age of twenty-eight by the mysterious illnesses chronic fatigue syndrome and fibromyalgia, five years later I survived two life-threatening strokes. Clinging to life and determined to change my trajectory, I embarked upon a journey to reclaim my lost health. Never easy but always worth it, I write to share the reality of both embracing and overcoming a life most unexpected.
Friday was a day for the record books. I don't know what was wrong with me, but I woke up off. I was moody and melancholy and all-together miserable. The world was a dark, awful, hopeless place where I didn't belong and couldn't find a spec of beauty. I hadn't felt this down-and-out in months. It's not that I thought my sick days were behind me, per se, but I was beginning to believe we'd taken a break for a while so I could actually make some progress in my life.
But not on Friday. No, Friday was one of those days where I poured myself a stiff one at four-thirty in the afternoon. Once that was done, I decided to set my sights on social media. I have a terrible relationship with social media and usually try and avoid it. Especially when I've been drinking. It's become a platform for bullying and hate, and I find my mood, faith in the future, and self-esteem significantly lower if I spend too much time on it.
Especially on Friday. I was relatively tame on Instagram. It was a picture of my first drink. In hindsight, I realize I was warning the world to watch out for what was to come. But how was I supposed to know that at the time? I drank two more and started posting smart-aleck comments on a few big "influencer" pages I follow. Well that got my toe wet, but apparently I was looking for something more akin to a full-body soak. So I moved on to Twitter. By then the ranting raver had come out. I blasted the writer of my favorite show about how disrespectful the season premiere was to the characters' arcs. Then I went to a couple websites that had reviewed the episode and gave my peace of mind to the comments section. But apparently that was too impersonal for me.
So I sunk my teeth into Facebook, which is the most convoluted place I could've possibly gone. And by this point, I was really in a tizzy. All the pent-up rage I've been suppressing by utilizing the site as little as possible started flowing outa me like lava. On my fibro support page, I went off on Facebook for not circulating my posts because I don't pay them. They've decided I'm a business, which I'm not, and are going out of their way to ignore my content until they get their paper. So what's next? I went to my feed and scrolled. It only took a few minutes before I completely freaked out. The post I wrote on my profile page was definitely more of a rant. I mean, everyone's blatant political agenda and lack of human decency really offended me. Except what I wrote was extremely dramatic and made people start asking if I was okay...
Then my computer, literally, died. Now I'm a conspiracy theorist from jump so that sent me over the edge. I know my phone and computer are already recording everything I do and say. Now it seemed like they were going so far as to send the information to the appropriate parties. And my punishment was instantaneous! Is it fair to say I went wild?
I woke up Saturday morning having returned to a refreshingly normal state of mind. Thank God. I had to figure out what was wrong with my computer and felt a little sheepish for acting like such a freak online. But as my grandpa loved to say, there's no use crying over spilt milk. My frustration at social media met one too many bourbon drinks and bubbled over. Good riddance.
I realized the other day that I'm unhappy. Not depressed, miserable, anxiety riddled, or on the verge of a meltdown, but just that general feeling of melancholy that means I spend my days in a touchy state of unhappiness. I may be doing worlds better as far as my illness goes. But the coping mechanisms I relied upon to get through my three-year relapse--basically bourbon, Taco Bell, and watching excessive amounts of television--are still very much ruling my day-to-day existence. My bad habits, and the results of said bad habits, are making me unhappy.
But this is good. Because unhappy I can work with. Unhappy I can do something about. Unhappy doesn't mean I'm descending into a cesspool of misery with no ability to pull myself out. Unhappy isn't me freaking out because I'm too sick to exert a modicum of control over my own existence. And unhappy certainly doesn't indicate I'm so full of anger, it's all I can see. Lord knows I've spent enough of my life in those places. No, unhappy simply means I've grown complacent with my life. And as a result, I'm making some not-so-great choices in order to distract myself.
Now that I recognize it, I suppose it's time to get to work. I've got to clean up the bad habits being so sick for so long left me with. But where to start when, like, everything needs to be fixed? Yes, I may have more energy, but I also have more pain now because I'm doing more. That delicate balance of taking care of me and taking care of life is something I've got to continue to respect if I want to remain on this trajectory...
This new inspiration to get my crap together is most likely inspired by epic amounts of indulgence over the holidays. My answer: on Thursday I walked/ran on the treadmill for 23 minutes. So much exertion caused a vicious stomachache of epic proportions. I had to come home and lay on the floor in writhing pain for a while. Then I was shaky and weak the rest of the afternoon and evening.
Sigh...I forgot how hard this is. Nevertheless I did eat better, stayed off the sauce, and managed to annihilate myself by doing a little exercise. No, the laundry didn't get done. But that's what tomorrow is for, isn't it? Provided I didn't just send myself into an epic flare.
Shortly after Thanksgiving my 101-year-old grandmother choked on a piece of food. She came through surgery okay, but after a week or so there was fluid collecting around her lungs and her heart wasn't functioning properly. Like most do when one happens to be 101, her doctors recommended hospice. I haven't seen her since her 100th birthday party, which pretty much consisted of her sitting in her wheelchair while the rest of us ran around having a blast. So last week I decided to hop on a plane and head to Arizona for a 24-hour whirlwind visit with grandma.
It was a terrifying decision. I had to weigh the potential sabotage of my newly-reclaimed health against not seeing my grandmother one last time. Which one would be easier to live with? After hemming and hawing and considering all the potential outcomes, I decided to go. I also decided I was going for me. Not to meet expectations or because of guilt or out of a sense of obligation, but because I wanted to see my grandmother when she was hopefully still coherent enough to have a conversation with me. I convinced myself if I stayed really mellow and positive the whole time, and expected to get through it without a major backslide, it just might be possible.
By the time I got there grandma had a miraculous turnaround, which isn't anything she hasn't done before. Talk of hospice had gone by the wayside as she was efficiently discharged into a skilled nursing facility as a transitional step before going home. I also remembered, in pretty short order, my family is anything but mellow. Nevertheless, it was a good visit and I'm glad I went.
Unfortunately once I returned home, I only had one day to self-care before my husband's darn company holiday party. The one I was supposed to lose ten pounds in twelve days for, but because my week was spent preparing for, executing, and recovering from this trip instead of going to the gym and obsessing over how much I wasn't eating, it didn't even come close to happening. Whatever.
So yesterday it all caught up with me. As I was sitting here watching football, all I could focus on was the feeling of my symptoms coming to life. Yet I couldn't tell if it was a flare of the flu that was on my horizon. I prayed for a flare. Paralyzed with fear, all I could think about was how many germs I was exposed to while sitting in the hospital for two days, not to mention flying on an airplane. I remembered how I was doing really well in 2015 until I got the flu, and here I am three years later just starting to pick up the pieces. It's one of those things where time is the only way to tell. This morning I woke up feeling achy and sluggish but clearly without the flu. Hallelujah! It's a flare!
It's tough, this living sick thing. As much as I'm determined to put my health first, it's an afterthought to everyone else. For years it was an afterthought to me, and I didn't do very well because of it. But last week gives me hope. I'm caring less about what people expect from me, which while making me quite unpopular (what's new), has helped stabilize my illness exponentially. As a result I'm less emotional and more in control of my life, which has made me want to start living it again. Enough so that I was able to hop on a plane, visit my grandma, come home with a flare, and not experience one bit of resentment. That's progress.
I wish I could blame my thirty-five-pound weight gain solely on my sickness. For a long time I was too fatigued to empty the dishwasher and shower within five hours of each other. So naturally anything more aerobic than light stretching went by the wayside. Unfortunately for my sense of scapegoat, I only gained like eight pounds during the first year of my relapse. Although annoying, it seemed like a reasonable consequence to no longer being able to workout.
Then I turned forty. It wasn't so much a birthday. No, the week I hit the big 4-0 was more about damage control. Coincidentally, a friend gave me a bottle of delicious spiced rum as a gift. Well in order to cope with my misery over how sick I was and how bad I was failing at life, I proceeded to turn that one-time gift into a lifestyle. I started drinking way too much and eating bad as well. They seem to go hand in hand with me.
Somewhere along the line I graduated from spiced rum to bourbon. Fast food sneaked its way back into my lexicon. As my body got bigger, my clothes got bigger, and I got madder about the whole thing. Now it's been three years, to the month, since I gave up working out. And I'm like a rapidly expanding blimp over here, as evidenced by the size-large outfit I had to go buy Sunday night for my husband's company holiday party in two weeks. And that's with a girdle.
Yet I'm feeling physically better than I have in years. So my motivation to change is stuck in low-gear. Until Sunday night, that is. I've never accepted my larger size and have totally allowed it to impact my self-esteem. Showing up to the family Thanksgiving gathering was rough because I was ashamed by my appearance. In true paranoid fashion, felt like everyone spent the night whispering about how fat I'd gotten. Like anybody really cares.
So now I'm determined to lose ten pounds before the party next Friday. That gave me twelve days as of yesterday. It's a stupid and unhealthy goal, but I'm going to see what I can do. On Monday I did yoga and went to bed hungry. This morning I lost two ounces under a pound. So today, which was a harrowing and stressful day, I went to the gym when I wanted to go have a drink. And then I didn't even pour a stiff one when I eventually got home. It wasn't as much fun, but I'm teeming for another pound lost tomorrow. With ten days to go...
In the past I've assumed an absurd amount of culpability for my sickness. Perhaps it started when I was told by doctors that there was nothing wrong with me, as far as my blood was concerned. So I needed to look elsewhere for the source of my extreme muscular pain and unrelenting fatigue. Symptoms so ridiculous, they rendered me unable to work.
Fast forward a decade. I'd changed my diet, was juicing vegetables, and started lifting weights. It was easy to assume the changes I'd made were responsible for the management of my illness. I was even healthy enough to get a part-time job. Then I got the flu and all that progress went away. Watching my life slip out of my hands, the life I'd so painfully fought to rebuild, was an undeniably catastrophic experience.
After three years of hibernation, I'm starting to exist in the world again. Funny thing is, I have no clue what to attribute my upswing to. I'm eating like crap. I'm drinking way too much bourbon. And while I'm finally physically capable of doing so, of course I'm not exercising nearly enough. The only thing I am doing with a modicum of consistency is drinking fresh vegetable juice, yet even that effort is frequently half-assed. And while my general "health" isn't nearly as good as it was when I was lifting and eating quinoa every day, I feel better than I have in years. My energy is good, insomnia somewhat managed, pain present but not excruciating. And the mental psychosis this illness paralyzes me in is simply nonexistent.
What else can I do but surmise this son of a bitch, whatever it is, is an honest to goodness real disease? Can I finally let myself off the hook for even getting sick in the first place? I tried everything under the sun to get myself managed. Then I burnt out on all things healthy. These days, it's all I can do to take my daily dose of vitamins without gagging as I wash 'em down with Taco Bell. Yet now is when I start feeling better. Like loads better.
So I guess fibromyalgia has, thirteen years in, finally earned my respect. Based on what this last relapse taught me, whether I'm sick or healthy is ultimately out of my control. Something inside of me gets triggered. I can bitch and moan and whine and cry and throw a pity-party tantrum all I want, but it won't change a thing. I can eat vegan or paleo or keto or gluten-free to my heart's content, but diet is only a fraction of what it takes for me to get control of this illness.
This latest experience has shook me. Challenged everything I thought I knew about both my body and this disease. Everything I built my philosophy on about how to succeed while living with chronic illness has been flipped. Because what the last few years taught me is once that switch gets flipped, it takes time and a whole lot of self-care to get this thing settled down. Thanks for joining, Leah
I watched her for the better part of six months. Ever since I saw her in the elevator on that spring day and realized she was pregnant, I started paying attention. She lived on the same floor of my apartment building, two doors down. Yet we never spoke beyond the occasional head bob or mumbled hello. Nevertheless, like a fly on the wall, I watched.
I watched as her tummy grew round and husband doted over her. I listened to her chatter to our neighbors about how excited she was to be having her first child. I watched her family haul the abundance of a baby-shower blessing onto said elevator and up to our third-floor landing. I even rode that elevator to the ground with her, during her first moments of labor, as she fluttered around her husband and best friend in a freak-out of nerve-riddled happiness.
And then everything sat silent. I didn't see a single one of them for weeks. Eventually I saw her husband. He looked pale and withdrawn. A while later I saw a woman entering their apartment. Like a grandmother who'd been dealt a blow she couldn't quite comprehend, her face was forlorn and sad. Clueless as to what happened, but possessing no license to inquire, I was only left to surmise.
Then one day I saw her. My neighbor. She came home, broken and disheveled, without her baby. I went into my apartment and wept. How could I imagine anything but the worst? Yet slowly her world started to come to life again. People were coming and going from her domicile, and a smile seemed to have found her guest's faces.
Eventually the baby came home. He was tiny and beautiful. Ultimately the sound of a wailing child met my ears every time I passed by her threshold. I didn't know what she was dealing with concerning the health of her child. But to me, nobody more important than the stranger down the hall, those cries sounded like the joyful proclamation of faith answered: baby and mama had both come home.
She moved shortly thereafter, or I did, thereby severing my ability to Peeping Tom her life. Yet I still think about her every so often. I wonder how things turned out, how the child is doing. How did the story end for her? Was the trauma of early motherhood a temporary experience, or did it leave her life forever changed?
In July my family went on vacation. On the first day, my thirteen-year-old Yorkie was injured. More precisely, he stopped walking on his left leg and started hopping around like a little bunny. So we took him to the vet and were informed he most likely had a partially torn knee ligament. Anti-inflammatory meds and rest were prescribed, with the hope that the ligament would resolve itself. It didn't. So on August 24th, he had major reconstructive knee surgery. Turns out in addition to the fully torn ligament, he also had a slew of genetic knee disorders his arthritis and advanced age had exacerbated.
I thought his recovery from that surgery was going to be the end of both of us. My little dog came home pissed. He stood in the barricaded living room, with the cone of shame surrounding his head, barking at me incessantly. I didn't sleep for three nights. On the fourth night I slept a little. Until I got up in the middle of the night, tripped over one of his barricades, and face planted into a wall. That resulted in a black eye that lasted for two weeks.
Nevertheless, his progress progressed and he started slowly but surely walking on his left leg again. Until two days after his first physical therapy session, when he started hopping and refused to put pressure on his left leg in any way, shape, or form.
Back to the surgeon's we went, where she informed us the band replacing his ligament had come loose and the surgery had to be done again. It may have been something the PT did, but there was no way to tell for sure. All I knew was my baby boy had to go through that horrible, exorbitantly expensive surgery again. It was the worst possible outcome I'd have given anything to avoid.
So on October 10th he had surgery #2. Luckily this time his recovery was but a fraction of the nightmare. In fact, he started walking, slow and stable, on his left leg the day after coming home from the hospital. He did that steadily until Monday. That's when, again, the left leg went up and my little bunny started to hop. Again.
I have completely altered my life to accommodate my dog, who is much more of a son, in order to rehab his disability. In an effort to eliminate his jumping, I got rid of my box springs and bed frame and invested in a low platform bed. I also got a huge coffee table that blocks his ability to jump up on the sofa. When we walk, three times a day, he spends three-quarters of it in a stroller. Each night he sleeps barricaded between pillows at my feet in order to prevent him from moving around. He's on more supplements to support his joints and ease his arthritic pain than I've ever taken for mine. There isn't a damn thing more I could have possibly done to ensure these surgeries stuck.
Mentally I'm preparing to have a permanently disabled dog. It's heartbreaking, especially considering how youthful, energetic, and vibrant my puppy still is. He's in perfect health, save for his damn left leg. Putting him through another major surgery, considering the success of the other two, is the last thing I'm willing to consider.
But I'm furious. Outraged. I feel duped. And I can't believe that after all this, my dog doesn't have use of his leg.
It was October of 2016. To say I was not doing well would be a monumental understatement. I was, in fact, losing it. Mind, body, and soul, I was sicker than I'd been in years. My CFS/ME was in full charge of my physical capabilities, major depression had taken over my mind, and I'd lost my faith in...everything.
My husband decided we needed to get away. He figured removing me from my environment might allow me to reset, gain some perspective, find some hope, who knows. All we both knew was I was in desperate need of serious help. But for people like me, there isn't any. Not from external forces. Any success I'd ever achieved in managing my chronic health issues came about because I found a resolve inside myself and fought like hell to get there.
We were driving up the 101 Highway toward Cambria. I was looking at Instagram. My husband had tagged me in a post. It was 2 side-by-side images of a former anorexic turned fitness competitor. He was impressed by her shocking transformation. She'd gone from a 68-pound girl who, quite frankly, hurt to look at and turned into to a sculpted and toned woman any chica I knew would've loved to look like. But it was a sentence in her caption that rocked my world:
"Life cannot compromise with death, the same way strength cannot compromise with defeat." That simple statement reminded me that I don't have the luxury of giving up. For while my fight for health may be insurmountable at times, it's still a fight I'm required to win if I want to stay alive.
My husband looked over and tears were streaming down my cheeks. For what he saw that inspired him to tag me was a girl who looked a lot better now than she did before. What I saw was a woman who had healed, in perhaps the most remarkable way imaginable. As a way to combat her eating disorder, she decided to embrace true health in every possible way: mentally, physically, and emotionally.
It'd be so nice to write about how I woke up on that fall day in 2016 and slowly but surely started to climb my way up. No, that took another year. I was severely sick, and it took quite a while longer before my physical illness settled down enough that I could begin to address what had happened to my life. Yet that day gave me the first spark that reminded me overcoming odds is not an impossibility. It's essential, in fact, if I want to continue to do this thing called living.
I'm officially reentering society. I've joined two writer's groups and have read my material aloud and received critical feedback from both. I'm attending a conference on Saturday. I'm making commitments and able to see them through, for quite a few weeks now. Somehow, finally, miraculously, I've found myself in a position to start living again.
Yet as I dip my toes back into the living waters of life, I'm scared. I'm scared of who I've become. I'm scared to let people know who I am. I'm scared to tell people about what I've been through. I don't want their judgment, and I don't want their sympathy. And I certainly don't want to have to explain and try to make people understand...
But I don't really know what I want. Perhaps to pretend the whole mess never happened? To never let anyone see anything past skin-deep? To be taken at face value, like somehow my life could become as superficial as it looks from the outside perspective, if only I don't address my truth?
If only. So I have to decide. Who am I going to present myself to the world as? This was a big issue last time I got healthy enough to work. I learned that when it comes to me and other people, I look too healthy to say I'm sick. Trying to exist in that dichotomy felt like a really big burden was placed on top of an already insurmountable struggle. They would look at me like I was nuts and treat me like I clearly didn't understand what true hardship was. So now I find myself electing to stay silent.
The result: people think I'm a happily kept housewife who grew bored so she decided to write a novel. Nothing could be further from the truth, but I find myself doing zilch to change perceptions. It's too hard to try and convince the world that what I'm dealing with is real. Ironically, that's the entire reason I wrote the book in the first place. And why I continue to write this blog. So yeah, I have a decision to make; how much of myself do I keep to the vest, and how much do I let be known.
I'm stupid competitive. The need to succeed and be the best is deeply ingrained in me. So deep, I have a terrible time accepting when I'm not. Perhaps this is part of the reason this illness is so difficult for me to live with. I know plenty of patients who, by year thirteen, have accepted their limitations and gone on to create meaningful existences where they are reasonably happy. They have filled their lives with loving, supportive people and respect themselves despite the struggles living with chronic illness puts them through. As much as I wish I was one of them, I most decidedly am not.
I seem to exist in one of two states. Either I'm beating this beast into submission, or I'm writhing around on the ground throwing a tantrum because I'm not winning, fibro is. There's no middle ground with me. It's almost like every time I relapse, just like when I got sick in the first place, I take it beyond personally. A shining example of how bad I'm failing. I can spend years twirling in the question vortex of "How could I let this happen?" Which is a really pointless question to ask myself after the fact, when my focus should be on loving myself so I can stand back up as quickly as possible.
No, instead I spend years adulating my anger at what is. Furthermore, it's only when I've stabilized enough to climb about halfway up that I can stop my foolishness. Luckily, for the first time since 2015, I'm here. Stabilized. Starting to live life again. About half as sick half as much as the time as I was those first two years. Finally. For a while there, I didn't know if I'd ever reach this place again. I'd done it before so knew it was possible, but couldn't stop bathing in my fury long enough to have faith.
But this is nothing if not a slow climb. As much as I'd give anything for life to be as simple as a decision for me, it's not. I'm starting to exercise again with a modicum of regularity and it's no longer sending me into major flares, but of course it's not nearly as frequent as I'd like. I'm getting out more and starting to be able to keep commitments again. But it feels small and pathetic considering what I've done in the past and what I aim to do in the future. There's still a tremendous gap between the me I am and the me I need to be.
Yet being able to do a little has calmed me down a lot. While I constantly have to remind myself that there are many other roles to play in life other than winner or loser, I find I'm generally getting a grip. A productive day followed by a down day isn't the worst thing anymore. After all, it's worlds away from being too sick to turn off the TV and get up off the sofa for months on end.