When I wrote my last post on September 20, 2017, I had no idea what the next few months would bring. (If you didn't read it; hop over and read the highlighted text in that post to get on board with this one.)
I had returned back to my regular work schedule and I guess looking back I was feeling "okay." It had been almost a month since the 3-week fever and 18 hour sleep sprints of August...days I was trying very hard to forget. I was going out to my car on my lunch break and falling asleep. Twice I fell asleep at my desk while my co-workers were in a meeting and the office was quiet. The endless blood tests revealed nothing; this was slightly elevated but still normal, that was slightly low but still within normal range. Multiple mono tests all came back negative. I had given up checking my lab results in my patient portal; my doctor had gone on vacation during the thick of it and the covering physician reported everything was normal. But I didn't feel NORMAL. I wondered if I was ever going to feel normal again.
I had a wellness-visit scheduled in late November. I got a reminder through the portal and logged in sometime in mid-November, the first time since the end of August. I noticed a red flag on the Lab Results tab. I just stared at it; how long had it been there? I was afraid to click on it. If they found something wouldn't they have called? Wait, I think I remember getting a voicemail to call the office...but that was months ago, did I ever call? Or did I forget, again...(because brain fog was still looming months later.) I looked at the date beside the lab: 8/22/17. Just a few days after the last time I had logged in...and a message from my PCP dated 8/24/17. I clicked on the red flag.
At first it was that "what in the world am I looking at" kind of disbelief because you've started to think your just crazy and that you weren't really as sick and tired as you were because all the blood tests said "You're FINE!" Well, it turns out, I wasn't. I had Epstein Barr Virus.
What is EBV? It's the virus that causes what most of us know as mono or Glandular Fever.
My doctor had forwarded the results to an Infectious Disease Specialist and they were baffled by my labs. My EBV Titers labs came back with acute negative, but recent, past & reactivation all positive. The lab statement said "Consistent with past infection or reactivation of past infection." But all my mono tests came back negative. Her note basically said that as long as the fever was gone they didn't need to see me, but if the fever returned I would have to go in immediately. And that was that. Finally. A diagnosis. Relief. But at the same time, not. Because I had no idea what EBV really was and what it meant going forward.
Being the research-freak that I am, I started reading everything I could about EBV. To say it is a complex and at times mysterious virus is an understatement. To say it knocks you on your butt like nothing else is also an understatement.
Just ask a few Olympic athletes:
"I was absolutely on my hands and knees...It was horrible. Honestly, you feel like you are never going to be able to do anything. That sounds exaggerated but when you are used to feeling tired from training and then you feel this bad and you haven't even done anything, as a professional athlete it's very hard to get your head around." ~ Mark Cavendish
"I am now more than £10,000 in debt, with an immune system ravaged by Epstein-Barr virus (or glandular fever), pride swallowed, confidence shattered and, most importantly, my dreams and goals of the last decade close to being laid out before me in tatters." ~ Andrew Steele
"I was in bed for weeks, until at least the early summer..."When I tried to walk I could only manage for 20 minutes, I had to start everything from the beginning, I'd try to run and really couldn't, it was a long, long process back. I had to start from zero after lying in bed with a fever." & “There I was, 22 years old, at the top of my career and I couldn’t even walk." "Heart wanted but body couldn't. This is the toughest day of my life (the day he retired at 26)" ~ Mario Ančić
As I read article after article either written by or quoting someone that had EBV, I began to feel less alone with it all. Because, unfortunately, a lot of people aren't very concerned/sympathetic when hearing you have EBV. It's not like you have cancer...(It can just GIVE you cancer 😞).
Most people have no idea what an insidious virus it is and many plop it into the "psychosomatic diseases" bin along with Chronic Fatigue Syndrome and Fibromyalgia. I can't speak as to whether those two conditions are "all in your head" (I definitely do not believe that is true) but I can tell you
that EBV is REAL. And I wouldn't wish it on anyone.
We spent the last week of the summer on the Vineyard. I slept a lot, read on the beach and that was about it. My husband (a chiropractor) and I talked about making some changes if I didn't feel I could keep up the pace of working full time, doing volunteer work and all the other responsibilities that go with being a parent & housewife and caring for my aging parents and close family members going through medical and financial issues. I did return to work but after a few months ended up giving a 3-week notice and resigning November 1st. Unfortunately, I didn't KNOW I had tested positive for EBV when I resigned so that robbed me of possible financial options and assistance I may have qualified for. So we lost my income, I lost my health insurance and because I voluntarily resigned, I can't apply for financial assistance in the state of RI. And before you ask, no, an EBV diagnosis doesn't qualify you for disability insurance.
Almost a year has passed since I first felt "off", almost six months from being diagnosed and about two months since I found out I had/have EBV. I'm glad I can say that, for the most part, I do feel like myself again...for now. The fact that I had a REACTIVATION of the virus means if my immune system gets compromised I will most likely go through it all over again. The scary thing about EBV is the virus hides in your cells and lies dormant and could attack again at any given time. That and the proven fact that it is linked to multiple sclerosis and cancer.
This is the most concise explanation I found that explains what happens to your cells when infected with EBV:
"The Epstein-Barr virus first enters the body through the mouth and throat. From there, it infects and “takes control” of immune cells called B-cells, the same cells that produce antibodies. Once inside cells, the virus is able to replicate and reproduce itself, churning out more and more copies of itself that can infect other B-cells. Your body’s best defense against interlopers, the immune system, including T-cells and natural killer cells, gear up to fight the foreign invader but is usually not completely successful at eliminating every Epstein-Barr infected B-cells. Even after signs of infection have cleared, the virus remains dormant, or inactive, inside B-cells. If all goes well, the immune system will keep the viral-infected B-cells in check so the virus isn’t reactivated and does no harm – but it’s a delicate balance. If the immune system “falls down on the job,” the virus can “wake up” and cause more serious health problems..." (read full article HERE)
The two biggest factors that could cause a reactivation are lack of restful sleep and stress. I have some control over the sleep thing, but as for stress, let's face it; LIFE is STRESS. Unless you live under a rock it's pretty hard to live a stress-free life. I've taken practical steps to try to limit the amount of stress in my life; for me that includes trying not to let everything affect me so much (see photo above) and keeping toxic relationships, environments & situations as far away as possible. I've also had to learn how to say no; to myself and others. Looking back, if I had listened to my body and said "no" back in August, maybe I could have avoided getting to know EBV up close and personal. The month was crazy, nonstop busy (and would have been a lot more FUN if I wasn't so exhausted) ~ We had our annual summer party, had house guests, a family reunion, took my daughter and her cousin to a Friday night concert in Boston (with a fever), went to a fabulous cocktail party (fever in tow), took my daughter and a bunch of her friends to Canobie Lake Park (also with a fever), took my mother to see her sisters in Maine for a long weekend (yes, with a fever), and went on vacation. Let's just say that won't happen again, especially if I feel run down or "off".
Because I am committed to doing whatever I have to do to NEVER have to deal with EBV again.
If you found your way here because you've had an EBV, mono, or glandular fever diagnosis or THINK you might have it despite a negative lab test: listen to your body. I don't care WHAT your doctor or the lab tests say; if you feel like something is wrong it probably is. I had to DEMAND that my PCP run further tests when the first round came back negative. She didn't take it seriously until the EBV Titers came back, and even then, her comment was "In any case, there's not much to do about it." I had to do my own research, figure out what I was up against and learn what I could do to fend off a reactivation of the virus. Looking back at my labs I had forgotten (again, the brain fog) that I had gone to my doctor feeling exhausted in February and June last year and was tested for mono each time - both times the mono spot came back negative. It wasn't until I was flat on my back with the fever in August and had another negative mono test that she finally agreed to order more bloodwork. (Thanks, Doc) I'm convinced the EBV was active earlier last year and reached a peak in August when I couldn't function anymore. Like I said, LISTEN TO YOUR BODY.
I think of the medical care and attention the above cited athletes must have received in an effort to find a diagnosis and I'm sure it was far superior to my experience as a 50 year old suburban housewife working in the non-profit sector with a side-hustle selling vintage clothing. At the same time, though, I can't imagine the stress they must have been under to "heal", to "feel better", to "push themselves", to "get over it"....with the stress of knowing that millions of dollars of sponsorships and for some, teams were depending on them to recover, and quickly; it's a wonder they were able to get well at all with that pressure hanging over them. So my heart goes out to them. I'm also comforted, in a way, to know that even those young, strong, healthy, strapping men weren't able to fight off EBV and it has helped me accept that I'm not a "weak" person because I got EBV (yes, the virus clouds your brain and the way people view it can make you feel like it is weakness on some level on YOUR part).
It doesn't matter if you "Fight Like A Girl" or like an Olympic athlete:
EBV always wins.
There are many more athletes and celebrities (“I was so sick I thought I was going to die. I went to doctor after doctor.” ~ CHER) that have battled with EBV and sadly for some, it has cost them their career. Many athletes have had to redefine themselves and find a way to make a living outside of the narrow niche of their athletic ability. No easy feat for an athlete and I applaud them.
Tom Brady is smart. He has his side-hustle up and running and even if he does play for another few years he already has a safety net in place should things take a dramatic turn for him athletically. Or if he gets EBV. Which I hope he doesn't, because, well,
I ❤️ Tom. Our grandfathers were both Johnson's and dairy farmers, and we're (as in The Patriots, not me personally 😄) going to SUPERBOWL LII!!
So now that I'm not hustling at a full-time job anymore, my vintage e-commerce side-hustle has become my MAIN hustle once again. I'm grateful I have it to fall back on and that I can work at a pace I control without getting run down again. That's the plan, anyway...because I'm #notdoneyet.