Sunday, October 9, 2022. I have what is now termed Myalgic Encephalomyelitis, usually shortened to ME/CFS. It used to be known as Chronic Fatigue Syndrome, but they’ve learned a lot since then and that term seems to imply that the only symptom is being tired. We all get tired, I know. But this is a whole other level. At my worst times, I literally can’t move. Not even raise a hand. And mine isn’t as bad as a lot of people. I’m mostly housebound, but many are bed-bound. I also get woozy/dizzy, brain fog, almost constant headaches, various pains throughout my body that come and go, almost constant sore throat, flu-like aches, and a myriad of other symptoms that are too long to go into. I’m sharing this because it’s leading up to where I found God in the past two crazy days. I went in for the bronchoscopy on Friday. I had to be there at 12:30 p.m. and was told not to eat anything from midnight the night before, and nothing but clear liquids until 10:30 a.m. I thought that wasn’t too bad, and I was right. I managed it fine. We got checked in to the hospital and sat down to wait for them to call me. We ended up waiting four hours. Jeff called to check on things a few times, and a very kind nurse named Wendy did her best to keep us updated. But still, four more hours was a lot longer with no food or even water. When they finally called me back to get prepped, it went fairly quickly, and the surgery went fine until I started waking up from the anesthesia. I felt a little tired, but my mind was clear. Then my hands started to shake uncontrollably. I’m talking violently waving back and forth like I was having a seizure. But I wasn’t. It was surreal. I kept thinking, “Just stop”, but I couldn’t. Then they said my heart rate spiked though I couldn’t tell that myself. The shaking would stop for a second then start again. This went on for maybe five minutes or so, but it felt longer. They brought in a neurologist to be sure I wasn’t having an actual seizure, and they confirmed I wasn’t. It finally stopped, but they made the decision to keep me overnight in the hospital for observation. I cried a little when they told me. I just wanted so badly to go home. Instead, I got to spend the night in a windowless room with just a curtain for a door listening to the man across the hall snore for all he was worth. That along with the nurses checking in throughout the night (and taking blood at 3:30 in the morning for some reason) added up to almost no sleep at all for me. On top of that, I was going on almost no food. Luckily, I had brought a gluten free bar for my drive home so I ate that, but even though the nurses tried, the cafeteria didn’t get any food brought up to me till 11:00 p.m. And that was a turkey sandwich that I had to take the bread off of. Whatever, I was exhausted and thought I’d just go to sleep… until the snoring man. The nurse brought me ear plugs, and I turned up the rain sounds on my phone, but it still couldn’t completely block it out. I managed 10 - 15 minutes here and there. The next morning I ordered breakfast through my phone which the menu they gave me said was an option. I was supposed to get a confirmation but never did. But I did it all correctly so I figured it was just taking a while. Nope. I called the cafeteria a few times and finally got through after hearing “we are currently experiencing higher than normal call volume” (aren’t they always?) for several minutes, and they said they never got my order but would send something up shortly. I got my food 45 minutes after that, two and a half hours after my original order. The whole experience was pretty miserable.
The doctors in the surgery and the doctor that discharged me all said they had never seen the shaking thing happen before but that it was probably related to the anesthesia. Then two neurologists came in right before the nurse was about to bring my discharge papers in. One younger and one slightly older. The older one was obviously the senior doctor but he also had some type of palsy that would cause him to shake uncontrollably from time to time. They asked me a lot of questions, and the younger one did a brief exam. I told them about the ME/CFS, and that I wondered if it hadn’t contributed. I actually felt a little silly mentioning it and even just called it chronic fatigue because most doctors don’t know much about it. Imagine my surprise when the older doctor said that he thought Myalgic Encephalomyelitis (yes, he actually used the correct term) combined with the anesthesia could cause that type of reaction. He actually knew the disease and its symptoms. I was blown away because no doctor I’ve ever met has any experience with it and very little knowledge of it. I felt so validated. So when I felt the urge to write about the past couple of days, I thought where on earth could I find God in what was a really awful experience from beginning to end. And He put that doctor in the front of my mind. The doctor who if anyone saw him not knowing he was a doctor would never think that he was one. I saw him shaking, and then getting it under control and explaining his thoughts to me. And I remembered again the validation I felt, and how it put a whole different spin on the entire experience. That’s where I found God. Thank you, Jesus.
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