I am back after an absence of about seven years. My last blog post was in 2019. Sometime after that I went into remission from ME and MCAS. I slid into remission so gradually that I never realized when it happened. One day, I simply noted to myself that I hadn’t blogged in many months, and then those months became years. At some point, I started referring to my health condition as something that I "used to have" -- past tense.
All of that ended on about July 6, 2026, when I came down again with some sort of viral illness. I don't know how or what virus I had, but I had body aches, low fever, and sweats for about a week.
What did remission look like for me?
What it wasn’t: During the seven years of remission, I still continued to see my integrated medicine doctor, Dr. M, about every 5 to 6 months. For one, I continued to have hypothyroidism(which was never an issue for me before I came down with ME in 2011). I needed to visit Dr. Dr. M so that I could refill my thyroid medications and monitor thyroid levels at a minimum.
Additionally, I had periodic symptoms (once or twice a month), lasting 3-4 days each time, where I would feel inflammation in my urinary tract and nasal passageways and airways. These symptoms would always present at the same time, indicating that there was a connection between them, even though they are/were in different parts of my body. I also continued to visit my IM doctor to try to work on this remaining issue(s).
Despite being in remission, there were some things that I could never do again, like drink alcohol. If I tried, I would receive reminders that ME and MCAS symptoms were always waiting for me, so I rarely tried. I was fine with that.
What it was: However, despite the issues that remain with me during remission, I had arrived at a point where I rarely had to take ME or MCAS into consideration when making plans. I was able to do virtually everything that a normal, healthy person of my age would be able to do. I went on international trips to places in Europe, Central America, and Mexico. In January 2024, I made it my goal to surf at least 1,000 waves that year. By the end of the year I had surfed over 1,500. I was surfing 3 to 4 days per week, often early in the morning before work. Then I was able to work a full day afterwards.
From 2024 to 2026, I decided to make sure that I did a physical workout every day, even if it was brief (which it usually was). For example, while watching TV in the evening with my family, I would do three sets of 15 push-ups, and perhaps some yoga. The next day I would lift weights and do situps. None of this caused me to "crash." The term "crash" fell out of my vocabulary. I never had to worry about overexerting myself. Eventually my SIBO symptoms disappeared too.
My current status
For the past month, since about July 6, I have had periods of 3 to 4 days where I felt relatively well, i.e. 80 to 90% of my baseline. On these good days, I would often feel (or hope) like this relapse was perhaps a false relapse, and that my symptoms were again going into remission.
But now I have suffered 5 to 6 setbacks, where are my symptoms return for about 3 to 4 days each time. And they never fully go away in between these setbacks. When my symptoms do return, it becomes very difficult and at times impossible to work my job or do normal household chores.
Given that the cycle of relative normalcy and crashes has lasted for over a month, I now need to admit that I have probably relapsed.
What are my symptoms of a crash now?
1. A burning sensation in my urinary tract and nasal passageways.
2. Inflamed gums.
3. Sore muscles, especially in the back of the neck where the spine enters the cranium. This comes with an irresistible urge, sometimes, to stretch my muscles. When I am actually stretching or massaging my muscles – those are the only moments during a crash now where I feel any sense of relief. For that reason, when I’m crashing now, I want to stretch constantly.
4. Twitchy muscle muscles in my extremities. I feel like my lower legs, hands, and fingers, are slightly out of my control. When a crash is at its worst, it becomes difficult, almost impossible, to perform tasks that require fine motor skills, like writing with a pen or typing on a keyboard. This is extremely frustrating.
5. Gut inflammation. After I eat a meal, my gut feels swollen, inflamed, and overactive. I am learning that what I eat makes a big difference in how I feel for the next 2 to 3 hours when I’m in a crash. Sometimes, when symptoms are at their worst, I feel nauseous and lack appetite. This is concerning because I am already at the lower end of the range of what I should weigh based on my height and age. I can’t afford to lose any weight.
6. Shortness of breath, and a feeling of inflammation in my nasal passages. Sometimes, the symptoms include a slight postnasal drip.
7. Headaches. Often, I have a slight headache, especially when I wake up in the morning.
8. Tachycardia. Sometimes my heart feels like it is beating too fast, although my Apple Watch often indicates that, even when I have this feeling, my resting heart rate is more-or-less normal. It is not clear if I truly have tachycardia or merely the sensation of it. But, I know that when I lay down to sleep at night, the sensation of tachycardia makes it difficult to fall asleep.
9. Fatigue.
10. When crash is very bad, an intense thirst in the back of my throat and tongue that is barely abated by water. I have never experienced anything like this before.
What is different this time?
Although, in most ways, it seems like I “picked up where I left off,“ some of my symptoms are different than before. For example, the sensation of twitching and disconnection with my extremities feels worse than before. Although I recall feeling this way in the past, this was never a top symptom. Now, it feels like it is the most concerning and difficult to deal with.
The gut inflammation that I am now experiencing also feels different from the SIBO that I was dealing with prior to 2019. This inflammation feels like it is in the stomach and large intestine. Instead of coming with constipation, like I had back in my SIBO days, I now have the opposite issue. But only during flareups.
The Plan
I had an appointment with my integrative medicine doctor on July 15. She ordered a new battery of blood tests, and a urine test. These tests are simply to make sure that there’s nothing new that wasn’t present in my pre-2019 blood tests, which were comprehensive.
Meanwhile, I started a health chart again to keep track of my meals, activity levels, and to give each day a numerical rating in terms of my overall symptom levels, on a scale of 1 to 10. I’m looking to find any kind of cause-and-effect relationship with these crashes; to gain any type of control over them, even if slight.
Coping with it
Having spent very little of the last seven years, thinking about M. E. And MCAS, it is jarring to suddenly be back in this world, to be tracking how I feel from day to day, paying closer attention to literally everything I do. In some ways, it is easier to cope this time because I know that remission is possible. I’ve been there. I also feel like I tried a number of treatments the first time around that ended up being a waste of time and money. In that sense, I feel as if have a headstart this time.
On the other hand, it is disappointing because I had tricked myself into believing that I might be in some sort of permanent remission. Over the last seven years, I recovered from many viral colds, flus, and COVID-19 (twice). Bouncing back from all of these other viruses, without slipping back into remission, started to give me a sort of carefree attitude about my health. I got to the point where I never worried that picking up a cold or flu would trigger worse symptoms or become chronic. Now, even if I achieve remission again, I will probably always know that it’s possible that another relapse is potentially around the corner.
But, on the positive side of things, if you would’ve told me years ago that I was going to have seven good years of remission, and if I could’ve chosen any time to take those seven years in my life, I would’ve chosen the exact seven years where they actually fell. As it happened, those were the seven years when my daughters went from being too young to understand any of my health issues (ages 7 and 8), to now, being young teenagers who are starting to assert their independence. I believe that there was something special and wonderful about being a parent of kids in the age range of about 7 to 12. That is the age where children start to be able to have rational conversations, to exercise reason, and to see the wonder and magic in the world, but before they become “cool“. I feel incredibly fortunate that I was able to experience those years as a parent without worrying about my health, crashes, and such.
I have had a talk with my kids. They had a vague understanding previously that I once had some sort of chronic health condition, but they didn’t know any of the details. Now I’ve explained that there might be a "new normal." They seem to understand and have been quite sympathetic.
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