what you should know about mono

Clearly I don’t have mono in these photos, but I was in bed for 3 weeks so it was only natural to do a photoshoot in bed! (Photos by Keely Chappell)

This is the first blog post that I’ve actually questioned, “should I share this?” I know that talking about an illness can be gross, and well, a little TMI. However, when I started my blogger/influencer journey I knew what I would be getting myself into, and that is sharing my life with my followers and sharing it honestly. That means sharing all of the ups and the downs. While mono definitely brought me down, I decided to write a blog on my experience with it because my mom and I often found ourselves googling my symptoms because we were so unsure of everything, having never had mono in our family. I found that those that get mono don’t really know a lot about it because its an illness that, for some reason, nobody talks about. I found that a person could have completely different symptoms from the next person and can experience it differently altogether. In fact, most of the MD websites I found wouldn’t have a symptom I was experiencing listed, yet when googling a direct symptom and finding online question forums, I found others asking about the same symptom. Upon figuring that out I could research my symptom farther on more trustworthy websites, knowing I’m not just weird and alone haha. For a disease with literally no cure besides time, I thought it may be nice to compile and share what I went through and learned to hopefully help inform the next person who starts out as completely clueless as I did.

Intro to mono 101:

(Disclosure: I am not a doctor, this is just what I found to be true)

First, some background on mononucleosis. It’s been nicknamed “the kissing-disease,” though I refuse to call it that in my blog, I will explain why it’s called that. It’s easily spread through bodily fluids such as saliva, mucus and naval secretions, coughing, sneezing, but also from sharing lipstick, eating off used utensils, and sharing drinks (it’s about as easy to catch as the common cold). Mono is most common among 15-17 year olds and usually breaks out in high schools but can effect anyone age 10-35. For older adults the illness is much harder on the body and can be really debilitating. The disease can lie dormant in your body for 2-6 weeks upon being exposed to it before you start showing symptoms, it’s for this reason that most people don’t recollect where they contracted the illness. I’m one of those people who don’t know how/when or why I got mono.

I wanna start out by saying, I didn’t know I had mono and neither did my nurse practitioner initially for a full week into it. Unknowingly, I caught mono at the peak of flu season and, from my symptoms, was actually nervous that I had caught the flu. I remember thinking, “I cannot have the flu and be down for 2 weeks, I’m too busy for that” (lol I had no clue what was coming). My initial symptoms were a headache between my eyes, fatigue, fever, and a swollen lymph node just behind my left ear (weirdest thing ever). Upon a visit to my local clinic, my nurse practitioner chalked my symptoms up to be an infection somewhere in my body. She did no blood or urine tests to be for sure because the symptoms really did resemble an infection. She prescribed me antibiotics, told me to drink lots of fluids and sent me on my way. I wasn’t allowed to return to school and work until I was fever free but I was so happy to be flu free..

I took those antibiotics for a week, however, in that time I noticed my symptoms were changing a bit — more for the worse. I would get the chills and be absolutely freezing yet hot to the touch. I would take Advil when this happened and then my body would break the fever I was experiencing and I would just sweat a ton for about an hour or two afterwards. This would happen about 3 times a day. Each time I would take the Advil to stop freezing, my body would break my fever — I still don’t understand this. The pain between my eyes became more severe when focusing on a screen, such as the TV or my phone. Brighter lights, such as my bedside lamp, also made the pain worsen. The lack of energy I had was so bad that I could barely shampoo and condition my hair while sitting in the bathtub without feeling like I was gonna pass out from the exertion of effort (standing in the shower wasn’t even an option). I had really bad stomach pain in the evening and sometimes it would go into the night. I had no appetite throughout the day and could barely eat much of anything when I would force myself to eat, I found the morning to be the time when I had the most appetite. I would fear falling asleep at night because I knew I would wake up to night sweats. Let me delve into this symptom for a moment because ew. The night sweats weren’t just, ‘oh it’s hot in here,’ oh no. I could literally take my night shirt off and wring it out with the amount of sweat that I was producing. TMI, TMI, TMI I know, but I would wake up every hour of the night like this. Pointing a fan at my face, cranking down the A/C, sleeping in the nude; nothing would prevent me from waking up throughout the night covered in sweat — it was exhausting and the worst symptom by far.

My mom grew incredibly worried about me and googled everything I would mention. I was getting anxious from missing a full week of work and class from being sick. I was stuck in bed and missing so much. The final straw came over that weekend when my urine turned to a rust color and resembled blood. I went to the Emergency Room the following Monday. We decided a blood and urine test was necessary to get to the bottom of why I was getting worse instead of better (I was nervous to hand over my scary-looking pee lol). After 3 hours of hospital time and 2 stabs of the needle in both arms because my veins were too hard to find, my blood test revealed that I had an excessively high number of liver enzymes in my blood, which is why my urine had turned to the rust color. A normal count of liver enzymes is between 10-42, my count was 293. Yikes. After further blood testing they told me I tested positive for mono and informed me that there would’ve been no way to see that I had mono a week ago even if I had done a blood test initially, because you have to be nearly knee-deep into the sickness before it’ll show up on a test — good to know. They also informed me there was nothing they could do to help me — great. I was told to drink plenty of fluids to flush out the over populated liver enzymes in my body and take Advil when I felt needed but otherwise, I left the hospital not knowing much of anything about mono.

My day-time fever had gone away a few days before I’d gone in to the hospital, but other than that, all of my symptoms lasted another 2-3 days, until one night the night sweats just stopped. Then the next day I didn’t need to take Advil to stop the pain between my eyes the whole day. Apart from still being insanely weak and fatigued, a symptom that lingers the whole duration of the sickness, I was feeling better! My mom and I learned from our research that mono comes in 4 stages. First, the incubation stage, which is when the illness can lie dormant in your body for 2-6 weeks before symptoms show. Then the prodromal stage, where you’re feeling like you’re coming down with something but you’re not feeling too sick yet – this lasts 3-5 days and is the period when mono will not show up on a blood test. Next is the acute stage and you are sick. You are in the dead middle of the illness and you feel it all over. This stage is the longest and can last between 7 and 20 days. The final stage is the convalescent period and can last 2-6 weeks to up to 3 months. This stage includes lingering symptoms such as fatigue and weakness, but depending on if your liver and spleen swells, and mine did considering the overwhelming amount of liver enzymes floating through my blood, I figured out you can develop jaundice and bilirubin in the last stage.

I didn’t notice the jaundice in my skin so much as my eyes. I always thought my eyes had a more pink tint than yellow, but I wasn’t concerned with my eyes at the time because I didn’t realize I had jaundice until some time later. Initially I noticed that I was scratching myself on the tops of my feet and the sides of my hands a lot, leaving them bright red afterward. The itching would just stop when I would prevent myself from scratching at myself. A day or two passed and I noticed I was itching around the waistband of my shorts and around where the bottom of my bra was. Another day passed and I was itching in spots where clothing wasn’t touching, such as my lower back and chest. It was at that moment I realized I should mention my new symptom to my mom. We went to google and learned that because my liver was swollen and inflamed it was processing too much bilirubin, a yellow pigment from my red blood cells. If bilirubin levels are high, substances formed when bile is broken down can accumulate and cause itching all over the body. There’s not really a quick fix for bilirubin and jaundice in adults, just eat healthy and avoid fast and processed foods, drink lots of water and be easy on your liver (no alcoholic drinks).

It’s important to mention that a day after my ER visit, my mom got a callback wanting me to return to the hospital to do some further blood testing. They wanted to test me for leukemia and lymphoma. I’ve gotta admit, hearing that they wanted to test me for something as major as cancer came as a total surprise and was terrifying to say the least. The reason for wanting to test me on this is because when they were looking at my blood in the lab, they noticed my white blood cells looked abnormal and sent them off to a pathologist for a better opinion. The pathologist agreed that they looked abnormal and issued the leukemia/lymphoma test. I had the test done and 3 days later the results came back as negative for leukemia/lymphoma. I felt so blessed when hearing the news but I had doubted that I had either leukemia/lymphoma because mono actually resembles leukemia so well under a microscope that the only way to know the clear difference in the two is to test for each. My doctors assured me I was most likely fine, but wanted to be for sure. Because I tested positive for mono, I felt reassured that I couldn’t have leukemia and I was so relieved to be right. Most patients that test positive for mono also usually get tested for leukemia/lymphoma, just to be safe. So if you find yourself in that same situation, don’t worry yourself too much — but still do the test!

If you have or ever had mono, there is some good news — you’ve been exposed, you’ve had it, and you can never come down with it again. Okay well you can if you had a super easy, light case of mono, but highly unlikely. Mono is in the same family as chickenpox; once you’ve had it, it just lingers in your body for life. This does mean that you’re now a carrier of mono. Once you’ve completely recovered, you can still spread the virus that causes mono. Ever so often you can produce the virus in your saliva and spread it to another person, even if you feel fine. Though, a person with mono is most contagious just before they feel sick and while they are sick, because this is the time when the most viral particles are produced in saliva. Honestly, yes, this means your significant other and probably your close friends should be afraid, and be very afraid to catch mono from you. But know that by age 18, most of us have been exposed to Epstein-Barr virus (EBV) and cytomegalovirus (CMV), the two viruses that cause mono. Exposure to these at a young age is usually asymptomatic, meaning that no symptoms result, and can make you immune to them later in life. This is why there aren’t major outbreaks of mono and why some people will never experience mono in their lifetime. Hopefully you, the person reading this, is lucky and will never have the pleasure of experiencing mono. But if you’re reading this for a reason, I hope you found my pain and reflection beneficial.

As always,

Ara

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