Hello and welcome! I’m Capricious Lestrange and there’s much hinted about me in that moniker, but I’ll let you ruminate on that alone. Once when asked about myself, I might have told you that I’m a poet and writer, I work in human resources, hold an MFA, and have a graduate certificate in HR management. I might have told you that I love nature and enjoy spending my weekends hiking, attending festivals and concerts, plays and the opera. I may have told you about my fascination with human behavior or my obsession with what made the beats so esteemed when some were truly awful, or that some of my most cherished memories are of hanging out with a bunch of toddlers and my best friend in the world who is also my husband. I could have mentioned that I drove a taxi in Orlando, sold Avon in Marion, Indiana and pre-planned funerals in Trenton, Ohio. I may have told you I had a mother and father, two sisters, and a brother I raised almost by myself. Now these are experiences and attributes that belong to someone else, someone I read about or saw in a movie or daydreamed. Now I find myself defined by one thing alone; an ME/CFS patient.
Calling one’s self a “patient” is something to which one can never really adjust. Through the last two decades I have never become comfortable with the term, though I find it occasionally falling out of my mouth, as now. It’s difficult not to incorporate such titles into one’s self image and self worth; patient, chronically ill, sufferer, victim. It’s difficult not to become those things, in whole or part, all their meanings about the feet like cement shoes.
Unlike some, I’ve never been clear on when I contracted or developed Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or when the first symptoms appeared, but I have no doubt that’s what I have. I fought it for many years, these terms that make me different than my husband, my sister, the woman next door; though I appear no less whole and healthy than they much of the time. Part of this doubt about when I became ill comes from the many misdiagnoses and incorrect guesses of a medical community in denial about ME/CFS and Fibromyalgia (FM), which was my first diagnosis and remains on the list of illnesses I am labeled by today. My other diagnoses include osteoarthritis, degenerative disc disease, irritable bowel syndrome, glaucoma “suspect,” polycystic ovarian disorder, endometriosis, orthostatic intolerance, chronic migraines and kidney disease, some of which are directly attributable to ME/CFS and FM, others are not yet directly linked, though common sense and more than one practitioner has speculated about their possible relationships when treating me.
What I do know, what every cell of my being has screamed to me almost daily for the last 20-25 years, is that there is nothing “normal” about my physiology. Often, I have felt worn down, tired before I could even get my day started, usually in pain and plagued by one infection or injury after another. I have injured more tendons than not, never doing any daredevil thing, but in the process of simply living my life. In my teens and twenties, I often missed work or school because I was plagued by chronic bronchitis. In my thirties, sinusitis harangued me four to six times a year. Then came the scary and excruciating bowel infections such as diverticulitis and c-diff (clostridium difficile), all too frequent staph fueled boils, UTI’s and kidney infections; All this plus the amazing ability to contract any flu, virus or infection of every person who ever stood within a 10 foot radius of me, or my husband who seems ever the viral incubator though he’s rarely ever sick.
My first taste of muscular injury came after my first year as a certified nurse’s aide at nineteen. According to the doctor who treated me, I damaged every muscle in my lower back and it was over a week before I could stand without excruciating pain.
I sometimes wonder if the origin of my ME/CFS began with a mandatory vaccination for Hepatitis B as part of my certification as a Nurse’s Aide the year before. Hepatitis B vaccination was found in a court of law to be a direct cause of ME/CFS in a recent case, and it’s gotten me thinking a lot about that time and how my body was already beginning to change. At the time these changes seemed mostly unremarkable, easily explained by being overweight and a smoker despite the fact that I’d always been a very robust individual who could never simply sit and do nothing. I remember even then struggling to get through my day, waking up feeling tired, having constant foot and leg pain that often interfered with my mood and my ability to sustain such a life. After the injury to my back, I left the nursing home I worked for and never returned to that work, but being a waitress or warehouse picker/packer or even a gas station attendant became equally difficult; I could never get through my day without a lot of Advil and grumbling. I never understood how my coworkers could make it through their day without the pain showing on their faces, leaning against whatever was available to prop them up as I did.
By the time I made it through my first degree—an attempt to escape manual labor and a hope to do something more significant with my life—my fatigue and pain were to the level that even working a desk job was a great challenge. The physical portions of my administrative job was becoming more and more difficult for me to perform and I worried constantly that people thought me lazy or uninterested in doing my best, though that’s always been contrary to my very nature. In college, I ripped my Achilles tendon making the usual hike up two stories of stairs in a building that was born long before there were elevators or laws about them and the pain of that injury never subsided completely, nor any other, just as it had been with every torn muscle, tendon or ligament. In the course of trying to stay healthy and active, I suffered tendonitis in so many parts of my body, I’m no longer sure I have any healthy connective tissue left.
Still, it wasn’t until my late thirties that I began to insist to my doctors that there was something seriously wrong. I’d begun working out regularly and eating healthy. I lost sixty pounds and lived a healthier lifestyle than ever, but still the pain and fatigue could not be subdued and my back was becoming a near daily problem, shooting pain from my lower spine and spilling down my right leg. I related my ever growing fatigue with the pain I lived in daily, sometimes completely crippling, at others a dull ache. A CT revealed that my two lowest discs were herniated, along with one in the thoracic region and two in my cervical spine. Eventually the pain forced me from my job, a third of the duties beyond my ability to handle. When I finally gave in and accepted a surgical option to repair the discs, I thought I’d be home-free from that terrible tiredness, able to work and function normally again.
In September of 2009, I came out of back surgery with raging nausea and a right leg that buzzed like an angry beehive of pain, but the unending severe pain I’d become accustomed to had vanished and has remained a rare visitor ever since. Only on special occasions does my back pain return, but that angry beehive fell to a dull buzz and remains today, from my knee down on the right half of my leg and nearly my entire foot. To this day, I consider the exchange a good one.
A few weeks out of surgery and I was bound for physical therapy. The only problem; I was still in pain in many other parts of my body and the fatigue I had associated with living in that level of constant pain never subsided. If I look back at my history it makes perfect sense, but at the time, I was flabbergasted. I couldn’t walk a mile without being wiped out for the remainder of the day and so complained to my General Practitioner (GP) at the time, a newbie in the residency program at the local hospital.
“So, I’m through the surgery and my back feels worlds better, but I don’t feel better. I’ve got no energy to do anything and no matter how hard I try to build up stamina, it doesn’t seem to change anything. I ache all the time, all over my body, my joints all hurt something awful and I can’t seem to get back to where I was before the surgery.” This was all the description she needed to perform the tender point test for Fibromyalgia. She would press in a spot and get a rise out of me. “Ow!”
After six or so of these ow’s, she stopped, explaining to me that she was only applying the minutest of pressures to these tender points. Did it really hurt so bad, she inquired? It did. After apologizing, she went on to test the remaining tender points, excitement becoming a mixture with the keen intelligence that showed on her face. By the time she finished, she had confirmed pain in 14 of the 18 spots she knew to test.
It felt like déjà vu, this test. Barely a decade earlier I’d seen it given to my ex partner. Even then I wondered if I too should be tested, but fear of stigma forced my silence.
“Do you know what this means?”
“I have a feeling you’re going to tell me I have Fibromyalgia.”
“That’s right; undeniably so. This is the cause of your pain, your fatigue, your sleeplessness. I’m going to write you a prescription for a drug that usually helps quite a lot with the sleeplessness, which should also decrease your pain and of course the fatigue. It was once used as an anti-depressant, but it’s been found to be much more helpful for FM.” She handed me the prescription that read; Amitriptyline, 50mg. “Take one of these every night before bed and let me know how it does.” She wrote me an additional script for pain medication, making me sign a contract that stated I wouldn’t accept pain medication from any other doctor.
I’ve never been so thrilled and petrified at the same time. Finally, a doctor who validated what I’d been feeling for years, an actual diagnosis, which meant something could be done about it. Boy was I naïve. The wonderful resident who diagnosed me graduated and moved on to a shared practice, one that didn’t accept my insurance. Her former Resident Supervisor was not of the same opinion as to the nature or truth of an FM diagnosis and when I went in to ask for additional treatment, I faced my first instance of prejudice about my illness. I wasn’t sick, she told me, I just needed to exercise and lose weight. For two years this woman tormented me every time I came in, regardless of what resident I was assigned to, with lectures about my diet and my physical fitness. Of course through all this she could have at least attempted to be helpful in that regard and given me some meaningful information or written a script for physical therapy, or anything of the kind. Instead, she’d deny me any and all treatments and refused to give me any more pain reliever, intimating that I was a drug addict seeking a fix.
You might think that I should have stormed out of that office never to return right off the bat and maybe I should have. But to think so is to deny a serious issue with the American medical system and to ignore the history of the medical community’s denial of Fibromyalgia and Myalgic Encephalomyelitis as actual diseases. This is something I knew all along and it bred in me a certain level of doubt, despite what I was experiencing with my own senses. So I put up with it, swearing I’d find another doctor soon, but dreading that a new doctor would think the same way. It wasn’t until what little relief I’d been getting from the Amitriptyline began to fail me that I was finally forced to make a move.
My new doctor was not exactly a go getter. I’ve always gotten the impression that she simply wanted to treat the basics and isn’t interested in pursuing anything beyond the most common and boring of ailments known to man and perhaps this is why she’s a GP in the first place. Any complaint I had out of the ordinary got shipped off to a specialist. There were times when this annoyed me to no end: But what she did do was to take my concerns and complaints seriously, taking the time to listen and attempting to find me solutions even when they were more than she could handle. She also introduced me to my first ever Rheumatologist, who would finally diagnose me with ME/CFS. Of course, it took me almost a year to realize that I had a second diagnosis because she never bothered to tell me or explain what it meant. The only way I knew was because the office had gone to a computerized system and she began handing me a print out that summarized my appointment. After I left, I read the sheet she handed me, which listed my diagnoses at the top.
At first, I ignored this additional diagnosis. She didn’t call it ME/CFS, but rather Chronic Fatigue Syndrome (CFS) and I’d already heard plenty about CFS. Somewhat like FM, it was a diagnosis attained by ruling out other possible diagnoses coupled with patient symptoms. There is no tender point test for ME/CFS, nor were there any biological markers which made a foolproof diagnosis at the time. There is now, but it’s still being developed and is not widely available, so I’ve never been tested.
Many people believed CFS to be a catch all diagnosis that simply meant they didn’t know what was wrong with you and I was among them in this thinking. But as my symptoms continued to grow and change, I began to seek new answers and finally began researching the disease that will probably be the death of me, though the American medical establishment denies that ME/CFS kills. Like AIDS, it’s never the disease itself that takes the life of its victim, it’s a related complication, not that the medical establishment would ever list “ME/CFS related Kidney Failure” on a death certificate as is done with those suffering from AIDS. In other countries, however, this is not the case and more and more deaths are directly attributed to the disease every year.
Since these diagnoses, my diseases—or syndromes as they call them—have been very active, ever changing and often growing in their horror. I’ve gone from a life as an active career woman, writer and scholar with a desire to experience everything life has to offer to completely home bound and often too sick, fatigued, and plagued by dizziness from simply standing to even consider venturing further from my bed than my trusty recliner in the next room. Even more significant for me, a person who prided herself immensely on graduating college magna cum laude with a fistful of writing awards and won a President’s fellowship for grad school, ME/CFS and FM began effecting both my short and long term memory as well as my cognitive and reasoning skills. Some days I can no longer remember where to properly place a comma or how to spell the word “which.” Other days, I cannot concentrate long enough to read a paragraph of someone else’s writing, let alone create a sentence for myself.
I struggle often with depression and anxiety, which is not only common for folks with ME/CFS and FMS, but as most of us argue, “Would you feel cheerful, hopeful and calm if you had an illness that has stripped you of all your hopes, dreams, money, family, friends and your entire future?”
Sometimes these symptoms can be attributed to the side effects of the myriad drugs I have been on over the last six years, others it’s the disease itself, constantly waxing and waning as it does. And the legions of doctors I see are rarely ever helpful in my quest for stability, let alone the treatment of many of my symptoms. That’s why I’m finally doing this blog, now while I can. Not only are there lots of things patients can learn from one another, I’m convinced that for many of us, it’s about the only reliable resource we have shy of reading hundreds of hours of old and current studies that hint at help in some magical future where there will finally be enough funding and organization around ME/CFS and FM to do us some good.
And then there are the endless questions doctors can’t answer for you now or in the future, like how to apply for disability and how to survive on the tiny amount they give you if they do eventually approve you, how to help people understand what you’ve got, and how to deal with the horde of people in your life who are more likely to abandon you than send you a get well card. They certainly won’t help you find additional resources, make ends meet, offer emotional support, or give you more than a cursory explanation of what’s wrong with your body, tell you how to obtain more information about your illness and rarely if ever offer treatments that aren’t drug related.
That’s where I hope to come in with this blog, sharing my own personal experiences, sources for credible information and a perspective with which you can hopefully commiserate. Most importantly, I hope to share with you something I’m still learning to do; how to be more than just a patient with an all-consuming disease. I invite you to interact, offer your own experiences and advice, and ask plenty of questions. Together, we might just be able to make a difference in our own lives as well as the lives of others.
If you’re curious about my poetry and other writing endeavors, take a look at my other blog; https://capriciouslestrange.wordpress.com/