Prior to the onset of my illness, I was a triathlete, an energetic mom of an energetic toddler, a graduate student and a teacher. I ran, went to the gym about five times a week, and played tennis.
In the late spring of 2014, I went to the doctor, assuming I had the worst flu ever—had never felt so badly- I’d had the flu and viruses before of course, but never this bad. In fact, I was so sick, I was honestly afraid the I had the big C. What else could this be?Instead, I was diagnosed with Mono. Mono, at forty three years old? Yes. I don’t know how or why but I personally believe that genetic predispositions existed and waited for the perfect confluence of virus and a suitable environment, specifically, elementary school. MAGIC!
When the mono symptoms didn’t go away and I continued to drag myself to the concerned but bewildered doctor once every couple of weeks , she eventually diagnosed me with ME (otherwise known by the the dirty little acronym “CFS”–inadequate, cliched dumpster diagnosis). I had never in my life, EVER, felt so sick. . . and nothing seemed to help. I WAS SO TIRED—like drugged tired. Every time I went to the doctor’s office, the minute I would walk into the room, I would lie down down on the little bed—you know the one where you’re really supposed to sit unless you’re there to have your belly checked. I literally could NOT stay up. Every where I went, I looked for a place to lie down. I was often unable to drive my daughter to and from school. Mind kept losing to Matter,no matter how hard I tried. I even tried easier and THAT didn’t work! On the days that I did drive, I would park under the shade of a tree and away from too many other cars and sleep until I heard the bell. Who’s the weirdo sleeping in their car? I slept in many parking lots, as I experienced a severe and crushing fatigue unlike I’d ever known. No matter how much I slept, I never awoke feeling refreshed. I was a afraid to go to sleep at night because I was afraid to wake up and feel as if I’d never slept–again. Groundhog’s Day. I was afraid to drive for fear of falling asleep at the wheel.
And it never went away. Ever.
I’m lucky though, I hear. I have the remittent type of ME. That means I can go for a month or so and feel fairly normal and live as a high-ish functioning adult (nothing crazy like triathlons or a job though). If I’m in a period of remittance, I can play doubles tennis as long as it’s not too hot or cold, walk the dogs and volunteer sparingly at my daughter’s school. I’ve always prided myself on being the type of person that said what I meant and meant what I said. You could count on me. Not anymore. Sorry, but now there’s a good chance that we’ll make plans and I have to make the call of shame. Hard to play doubles with three people. Hey, it’s me, sorry but…
So it comes and goes. Going is my favorite.
When I’m sick, in addition to the debilitating fatigue, my face hurts and swells (really the only outward sign that something is very wrong). I look SO weird! An ever-present pressure and a throbbing pain at the bottom of my skull and down through my back prevents me from getting comfortable. I have to lie sideways. How many times has it been suggested (with the best of intentions) that I take a shower? When I’m really sick, I just can’t. It takes everything out of me. When I coerce myself into the shower, I use one arm to rest my head and the other arm to wash. By the time I execute the one-armed shower, I am so exhausted that I have to lie back down. Right away. My gums hurt, my throat feels raw and I feel like I can’t swallow. The sensation is as if something inside is obstructing my throat. I seem to get one UTI after another (so many that a urologist prescribed a daily dose of antibiotics so I take them with my probiotics!). My migraines increase in frequency as well as severity. I’m often very cold, shivering cold and then suddenly flushed and hot, as well as thirsty but too nauseas to drink.
Three years ago, I had to leave the job I loved. My principal cast doubt—-I looked normal—I looked like I felt ok. This INVISIBILITY is often one of the most disheartening aspects of the illness. I actually like when my face swells because you can tell I’m not full of shit. I sought the help of an infectious disease doctor, several rheumatologists, sleep specialists, neurologists and more. MAYO wouldn’t accept me and they couldn’t tell me why. One rheumatologist in Richmond (Mihail Moroianu) refused to see me after seeing my charted diagnosis of CFS. I had already been sitting in the waiting room and was told I couldn’t be seen-by the office manager. The doctor didn’t even come out. Talk about hanging your head. Keep in mind—I did not welcome this diagnosis. First of all the word fatigue did not go with my personality. I had been happy and energetic, athletic and fully engaged in life. I don’t think I believed CFS was real myself. I just wanted/want help.
“Perhaps you are depressed,” I’d hear from professionals and a few friends. Um, depressed? YES I was depressed! I couldn’t do anything I loved. I spent most of my time lying in bed. Sorry, but that IS depressing. Well-meaning people would tell me to exercise more. Exercise exacerbated every symptom —-and then I’d be exceptionally useless to my family. Mom’s in bed..she ran three miles this morning. Bad mom–no running! We all know that exercise is a great antidote for depression, but not with this. THIS wasn’t abiding by any rules. ME makes it’s own.
When I’m sick, I lie in bed with my phone and research this baffling disease—one that I was (kind of still am) afraid to tell people about because it sounds like its made up! Some think that it IS made up! When it comes to this, most doctors are clueless. In fact, when a doctor admits his or her cluelessness, it’s usually a good sign because at least it’s start! Denial and ignorance in medicine regarding ME is just too much of a battle for me to fight. So I’ll just take opportunities to throw people under the bus in hopes that future negligence is diminished. Typically, doctors of this persuasion, are convinced that they are right AND, guess what…I’m too tired to convince you! For fear of sounding like a hypochondriac, or worse, lazy, I just tell acquaintances that I have a rare autoimmune disease. You’d be surprised how many people don’t ask questions.
A couple of years ago, I found Dr. Derek Enlander, an ME Specialist with a degree in Moluceular Medicine from Mount Sinai. Nicest man ever. His office was in Manhattan so I took the train from Virginia to New York. . For the first time, I felt as if a professional understood my condition and believed me! He sent me home with orders for a needle biopsy of the lump in my neck, a Valtrex prescription and heppapressin injections. The ENT doctor back in Virginia tried twice to get a sample of the lump in my neck but was unable to obtain any results—positive or negative. I had to just let that go. Talk about picking your battles.
I don’t believe the hepapressin made much of a difference but continued on Valtrex. Dr. Enlander then retired (pity) and I found Dr. Lapp in Charlotte, North Carolina. Dr. Lapp was unavailable so I saw his mentor, Dr. Black. They confirmed that I had CFS/ME remittent type and increased the Valtrex from 1500 mg daily to 3000 mg daily and wrote me a prescription for Low Dose Naltrexone (LDN). I’ve been on this cocktail (in addition to vitamins, supplements and a gluten free diet) for about two years. Unfortunately, it has been extremely difficult to get appointments with Dr. Black (and to be frank the staff is SUPER condescending). They also will not call in prescriptions. I plan to ask my primary care doctor for Valtrex and LDN. I feel like I have to go around begging for medicines that I need to just stay well some of the time! Additionally, because of my periods of remittance (for which I’m thankful), I often really do feel fine and just look more the imposter.
In a month, I’m flying across the United States to Stanford. Apparently, they have a cutting-edge, research-based ME clinic. Hopefully, they will call in prescriptions! Insurance covers my appointment but obviously doesn’t cover the travel or accommodations. I feel very grateful to be in the position to be able to go. Being your own advocate when you’re sick can be demoralizing. It saddens me to think of all the suffering people out there that have given up as a result of inadequate resources. And then to get the vague impression that some people don’t even believe that what you have is real. It’s a lonely, isolated place to be.
Ill keep you posted on Stanford.
As for today, I’m not well. Typically, I’ll be well for about a month and try to modify my exercise (keep heart rate below 120 and play only doubles tennis) and take time to slow down in general. I usually end up over-doing it, like a puppy at play, and then get sick again. It’s just that the line of pushing too hard or not enough is so blurry. All of my life, I’ve followed the “no pain, no gain” approach to just about everything. Not with ME!
In the past, I have tried juicing, a vegetarian diet, drinking a gallon of water a day (current), Juice Plus, herbs, plants, special pillows, walking instead of running, no dairy, no soy, mostly organic diet (currently), gluten-free (current) and 1 million supplements. A million–verifiable by Amazon Prime. I’ve gulped down stuff that tastes like ASS. I didn’t care! Rocky drank raw eggs, so.. I’ve tried chiropractic, adrenal support programs, cognitive therapy (including sessions with an Olympic trainer via Skype), several different oils, balms, tinctures and powders, massage, juicing, smoothy-ing, cooking with organic ingredients, ad infinitum. I believe all of these approaches help but I’m not sure to what extent or in what combination! Too many variables. At least I don’t think any of the aforementioned approaches make matters worse. Next, I’m going to try eating two cloves of garlic everyday. In pill form.
I am nearly positive that this disease is in part, hereditary, My mother has been dealing with this (undiagnosed) illness her entire life. She—-and her doctors—believe that she simply gets the flu about once a month. Not normal!! I remember her being in bed a lot when I was kid. Now, sometimes, I’m that mom. I’ll have to write a completely separate blog about ME and mom guilt. Anyway, her doctors, either confounded or suspicious, treat her with antibiotics and send her home. She is a funny and vibrant woman and is mostly in sick in bed. And NO, I didn’t learn this behavior from my mother. Who the hell wants to lie in bed? I don’t even like TV! Before my mom got sick, she won local golf tournaments, hosted cocktail parties and travelled around the world.
I no longer care about cutting time on the swim portion of a triathlon. I don’t care about running a sub-seven minute mile. More than anything, I just want to feel better. Maybe you feel the same way. I want you to feel better too!! Maybe reading this and knowing you’re not alone helps you in some way. I know it helps ME.