Introduction: My Story

Hello there! It is nice to have you here! My name is Megan, and thank you for checking out this blog! I am 28 years old and live in Boston with my amazing husband Brandt. He is a life sciences consultant and is just about everything a girl could want in a hubby (insert fluttering doves, heart-eyed emojis, and romantic violins). I was diagnosed with ME/CFS in October of 2018 but have been sick since January 2015. I wanted to start this blog to talk about my struggles with the disease and create a place to learn, grow, and hope together. I hope to speak to those interested in my journey as well as to reach out to others with a chronic illness and share things I am trying to help myself.

I wanted to take this first post to tell my ME/CFS story. A story of when I got sick and what brought me to where I am now. Something common among those sick with ME/CFS is that they can remember the exact moment they fell ill. It isn’t a gradual or progressive thing. That is the case for me as well. I was on my honeymoon with Brandt in Charleston, SC. It was a cold and cloudy day, but we were thoroughly enjoying sight-seeing and exploring the beautiful and relatively empty city (it was January). We made our way from our charming hotel through shops and sights before reaching Waterfront Park (for those familiar with Charleston, it is the place with the pineapple fountain by the ocean, gorgeous!). We took pictures by the fountain and then walked the length of the pier to get a better look at the water. That’s when things went south. I become incredibly dizzy and weak before collapsing. My poor, brand-new husband basically carried me back to our hotel. I hoped that I was just exhausted from the last three months of planning a wedding, moving, working 70+ hours a week, and taking a medical microbiology class. I just needed to sleep for a bit, and then I’d be all better! That is unfortunately not what happened. I spiked a high fever and could barely get out of bed. Brandt physically ran (legit ran. like covered in sweat and panting when he got back) to the nearest drugstore to get medicine and bath bombs. It was in this moment that I realized what kind of man I had married, and I felt very lucky and blessed.

So our honeymoon was a just a little bit ruined, but we did our best to still have fun! We managed to make it out for a carriage ride around the city and to Fort Sumter. All of the other time was spent in bed (not in the fun way) with a raging fever watching “Chopped”. Funny but sad side-note: Brandt ate most dinners by himself at the hotel’s rooftop restaurant. Not used to being married yet, he left his ring in our room. Some older ladies were giving this apparently single, good-looking man the side eye when they approached him. He informed them that he was on his honeymoon…with no wife or ring in sight. We don’t think they believed him.

Brandt and I returned to Raleigh where I was a bridesmaid in a dear friend’s wedding. We assumed that I must just have a bad flu, so I loaded myself up with medication and managed to walk down the aisle without tripping and stood for the entire ceremony. Success! We considered having me stay in Raleigh to recover while Brandt flew back to Dallas to get back to grad school, but we decided to tough it out and have me come back at the same time.

At this point, we felt we needed to see a doctor. It had been about 10 days since I had fallen ill (imagine being sick for 10 whole days?!), so I made an appointment with a local PA, and she tested me for the flu, mono, and strep. All tests came back negative. Weird. So we thought maybe it was just a wicked virus and would run its course soon. Fast forward two more weeks, and I am not any better and had developed a bad face rash. So we returned to the doctor to try and get some more answers. This doctor left a lot to be desired and was my first encounter with understanding that not all doctor’s are created equal. She didn’t even do a physical exam. She halfheartedly suggested that I might be pregnant. Pregnant. After not even a month of marriage. My poor husband was left panicking about how we were going to sell our one bedroom condo, buy a new place, and prepare for a baby all while preparing for his qualifying exams. The nurse thankfully ran the pregnancy test right then and there and confirmed that I was indeed not expecting. So without a whole lot of direction, we went home and just assumed I would eventually feel better.

For the next six months, I was barely able to leave the house. I was unable to attend church, look for a job, meet new people (I was brand new to Dallas), go out to movies or dinner. My husband and I were in a new congregation, and we think some people might not have believed that he was married. I struggled on like this until we decided it was time to go back to the doctor. I did my research this time and found a well-reviewed PCP very close to our house. I told her that I had mono in college, and that I felt much like I had then: no energy, sore throat, body aches, headaches, fevers, oh my! She ran a more comprehensive mono test, and found that I was indeed positive for a reactivated mono infection. We had our answer! It was just mono! I could handle this! Sure mono had knocked me out of a semester of college and caused me to be in a life-altering car accident leaving me with chronic back pain…but it would go away eventually!

We went on for four more months with little improvement. My doctor left primary care and referred me to a colleague. I met with her in October of 2015 to explain what had been going on. She referred me to an immunologist who tested my well…immune system? He didn’t find anything of note, so he sent me a message saying he hoped I felt better soon. Nice. Brandt spoke with an MD/PhD researcher in the lab next to his about my condition, and this was the first time we had heard of Chronic Fatigue Syndrome. She said that my symptoms seemed to match with this condition. We were both pretty dismissive of this idea, even though she was a smart, well-regarded doctor. The name itself just sounded so dumb and fake. That couldn’t be what I had because it wasn’t real. We finished out the year travelling to Brandt’s family for Christmas. I had improved some at this point. I was strong enough to travel and applied for a part-time position as a tutor.

2016 began with my return to the workforce! I started a job as a tutor, and absolutely loved it! It was still challenging to get to work and stay upright during my appointments, but I was able to do it! We were still just telling people that I had a reactivated mono infection that would hopefully go away soon. I was able to attend church and teach Sunday school to a group of 9 year olds each week. I was also able to join a choir! I missed music so much, and my husband and I were able to participate together. He played violin in the orchestra, and I sang with my other low-voiced ladies in the Alto 2 section. I was probably at about 50-60% this year and was able to function relatively okay with limited activity.

2017 was pretty much the same for the first half. I did go see another doctor at the beginning of the year to be tested for autoimmune conditions. My fatigue, pain and joint pain pointed this doctor to lupus. Those tests also came back negative. This doctor started out helpful, but once my tests came back negative, she told me that I was in a pain cycle and to maybe see a therapist. I left crying. I was continuing to tutor as well as volunteering once a week with my church as a temple worker. This was honestly one of the best experiences of my life. It was so uplifting and special. The shift was challenging, and was pretty much knocked out for the rest of the day, but I didn’t care! I decided to get another job over the summer to help us financially while I wasn’t tutoring. I worked at the front desk of a spa. One of the extra symptoms that I developed over the years was an incredibly upset stomach. I was nauseated pretty much all of the time and spent and inordinate amount of time burping for a young woman raised in the South. My primary care doctor referred me to gastroenterologist, and he was fantastic! He diagnosed me with gastroparesis and got me on a medicine that helped tremendously!

So we come to the climax of this story: It was fall 2017. I was working two part-time jobs, volunteering in the temple, singing in a choir, and teaching early morning religion lessons twice a week to high school students. And my body pretty much staged a coup against me. My exhaustion and pain reached a new level. I had to quit the spa, quit singing, quit volunteering, and eventually quit teaching the early morning classes. I was barely able to do my tutoring, and even that was a monumental task. I dreaded each day having to drag my battered and abused body into the shower and drive to work, dozing off during the 5-10 minute drive and kept from car accident after car accident by some very attentive guardian angels wondering what the hell I was doing. I still loved working with my students. But it was tough. It was very very tough.

2018 followed this trend. Tutoring was about all I was able to manage. We were still able to enjoy the wonderful friends we had made in Dallas, but socializing was challenging. I didn’t want to appear as horrible as I felt, so I pushed hard to seem okay. I could occasionally make it to church but never for the whole 3-hour block our church meetings consisted of. This is when we finally revisited the idea of Chronic Fatigue Syndrome. Through research of our own, Brandt and I found the Bateman Horne Center: an amazing facility in Salt Lake City, Utah with a doctor and researcher committed to treating patients and educating as many people as possible. We found their video series and that my symptoms DID match up with this disease. We learned that there are measurable, biological differences between the sick and healthy. We learned that this is a real, devastating disease. We also learned the name ME/CFS, and found that there was a specialist in Charlotte, NC, not too far from my family. I called in February of 2018, and the next opening was October 2018. My husband had been offered a job in Boston to begin in fall 2018, so we spent the remainder of our time in Dallas enjoying what we could with my limited energy. We spent the summer preparing to move by selling our place and finding an apartment in Boston.

October eventually came, and I headed down from Boston to NC to go see Dr. Laura Black at the Hunter Hopkins center. My mom woke up super early with me, and we drove down to Charlotte for the appointment. It was an incredibly long day. I was the only patient being seen that day, and we spent about 6 hours at the clinic. The appointment starting with a cognitive function test. Things like remember these symbols, and press the space bar when you see them again. I. Did. Terrible. They brought me the test results, and I cried as I stared at the little check marks under the “below average” column. My mom had to talk me down from a total meltdown. Dr. Black then came in, and we talked about my story. The one you are reading now! I told her all of the weird symptoms I had over the years. She did a thorough physical exam and tested my balance. She found multiple issues during her exam and eventually asked me how much I knew about ME/CFS. She diagnosed me with this and fibromyalgia. I started crying and laughing at the same time. (I swear I don’t cry THAT often). It was a relief to finally be diagnosed, but I knew that this diagnosis meant. I knew that this was a life-long, chronic illness with no cure. I knew that it had a stigma that I didn’t want, and I knew not many doctors would be able to help me. My mom and I went to lunch where we tried to process everything that had been said. We returned to the office for me to complete a tilt table test as well as a blood draw. The tilt table test was kinda awful? I didn’t think much of it before the test, but I was strapped onto a table while laying flat. I was then hooked up to measure my heart rate and blood pressure. I was then raised to an upright position for what is supposed to be a 30 minute test. I lasted about 10 minutes before I nearly threw up and passed out. My heart rate sky-rocketed, and my blood pressure plummeted. POTS (Postural orthostatic tachycardia syndrome) was added to my list of diagnosis for the day, which is a very common complication with ME/CFS.

My mom and I drove back to Raleigh with my binder full of information and prescriptions. We spent time talking to family members on the phone and updating them on how the appointment had gone. As I said earlier, it was a relief to finally know what was going on but also daunting to think of what this meant for my future. One thing that I learned both from my visit with Dr. Black as well as my research on the disease explains why I crashed in the fall of 2017. One of the hallmarks of the disease is something called post exertion malaise (PEM) which is a fancish way of saying that if I push myself outside of what my body can handle, the disease worsens. That is why people with ME/CFS cannot exercise. I cannot push by heart rate above 105 bpm (more on this in another post). I spent nearly four years pushing myself beyond what my body could handle, and I am paying for that now. I am nearly housebound. I can leave my home for a longer activity (> than 1 hour) maybe once a week. Twice or even three times if I’m having a good week. And I am not even considered severely effected. I have moderate ME. Which is another reason why I want talk about this publicly. There are people way worse off than me who have been forgotten and left behind. People who cannot even leave their bedrooms or tolerate light and sound for any period of time. It can be like living while dead.

I will end this post here. I wanted to get everyone up to speed on how I got to my diagnosis and where my health stands now. It is not nearly as long as some stories and may be longer than others. I suffered for nearly four years before I was diagnosed which led to me damaging my health further. It is a long path ahead, and I hope to use this space to share what I learn along the way. Please join me for the journey!