Living with Health Challenges || Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

My care team and I were functioning without all the relevant information about my illness until Covid-19 Long Haul started being reported. My good friend Myndi was unfortunate enough to end up with Long Haul Covid after getting Covid a few months before vaccines were available. It had been a bad flu for her, but she had not been hospitalized. After recovering from Covid she started talking about symptoms that you could have plucked out of my 2015 winter. 

It was then I remembered getting the flu about three months before my symptoms took a drastic turn. I had gone to a minute clinic and didn't have any record of the flu or the timing. And my sense of time during that era of life is not reliable. 

But I do take and keep notes, send lots of emails to friends, and post occasionally on blogs like this one. So I started researching to see if I had mentioned being sick anywhere. I did, I sent an email catching up with a work friend (Deborah) and mentioned losing all of November of 2014 to the flu and being in bed. 

Prior to the flu, I had been struggling with my digestive system. I had multiple ulcers, and an antibiotic resistant case of H-Pylori. The last round of antibiotics had cured the H-Pylori within a few months of me catching the flu. The ulcers were still healing and my diet was limited because of this. I was also under a large amount of professional stress, with an impossible project and a recent management change. My family also suffers from chronic vitamin D deficiencies. I believe now it was a perfect storm for Chronic Fatigue/ME.

In January of 2015 I woke up and was so dizzy I couldn't walk. We lived in a 3rd floor walk up and I couldn't leave the apartment on my own. I joked about going down the stairs on my butt in the case of a fire, because I could not safely walk down them unassisted. This episode ended in two diagnoses, BPPV and Vestibular Migraines. 

In June 2015 after changing aerial yoga studios I dislocated a hip during a normal position. After being in aerial yoga for more than a year, and yoga for years, this was shocking. It was also a warning for what was coming. 

In August of 2015, almost a year after the initial flu, my nurse friend convinced me that my daily symptoms were not normal. I made an appointment with my GP. My GP diagnosed me with fibromyalgia and had me follow up with psychiatry to make sure it wasn't all in my head. Luckily the psychiatrist was wonderful and referred me to the life saving services at Osher for Integrative Medicine at Vanderbilt. 

At Osher I had several group classes on how to deal with pain mentally. I also started physical therapy, acupuncture, and therapeutic massage. Physical therapy discovered I have a genetic condition called Ehlers Danlos Syndrome Hypermobility. PT helped me learn how to move and function without repeated injuries to my joints. Acupuncture was not needed long term, but worked to turn my appetite back on anytime that was needed. And massage was an absolute life saver, and with bimonthly appointments from the end of 2015 until Covid, helped my body from getting too familiar with pain. Massage kept me functional for over five years, and it's what I miss most about Covid safety. 

In the following years my GI issues did not improve, despite curing H-Pylori and the ulcers. At the end of 2016 I was diagnosed with Cyclic Vomiting Syndrome and started attempting an elimination diet. In July of that year we discovered I had a soy sensitivity. Removing soy from my diet cut my episodes in half, but did not eliminate them. In November 2017 I was diagnosed with IBS and sent to a chronic digestive physiatrist. I had a GI cat and MRI in this time period also. 

I also got a different migraine diagnosis at the end of 2017 and a brain MRI. 

From 2017 until the beginning of the pandemic we were just doing the best we could in my health issues. We had no inclination that recovery was possible, we were living the biggest lives we could within my limitations. I had several ER visits, and to limit ER visits went to hydration places and got IV bags after episodes and before events that might cause episodes. The ER and the hydration places offered IVs with anti nausea medicine, which was very helpful. 

Then the pandemic hit. Travel stopped. Big life stopped. The world stopped. We cooked at home exclusively. Support services also stopped (massage, acupuncture, IV bags). 

Slowly I got better. By the end of 2020, I had only had 4 Cyclic Vomiting episodes since lockdown started in March 2020. I had the energy to keep the house clean and the yard mowed (half an acre). I could think more clearly than I had in years. I had only had migraines around large pressure changes in the weather. I got better. 

I got better. Getting better was possible. Now that we know it's CF/ME we know* that I can have these healthy times. But we also know that I can fall off the health wagon. If I get another flu (or Covid), if I overexert myself, or if I get too stressed, I can relapse. The good news is if I do relapse, I know the path back to health. 

All of my symptoms, outside my genetic issues, can be traced back to a single forgotten flu in November 2014. I suffered, I could not work full time, I lost a lot of social connection for over half a decade because of a flu. 

In 1989 the Golden Girls had a story based on Dorothy being diagnosed with CF. Luckily most of my doctor's and care team treated me and my symptoms with respect and not like it was all in my head. But the science about CF has not moved forward since. That episode is nearly 33 years old. I've included the relevant clips here. 

I feel so strongly for the numerous long haul covid patients starting this journey to health. I pray that with their joining of this shitty club, that medical research will raise us all to the levels of health we were before an illness took our bodies from us. 

*CF/ME has not been well studied. But from what we do know, and the few stories done, letting the body truly rest is the best way to recover. 

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