I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Happy Wednesday! I am back with another weekly update from our house (like my new graphic?), just to stay in touch and let you know what's going on. I have a few things in particular on my mind this week:
The Joys of Electricity
Let me count the ways ... Tropical Storm Isaias came right through here yesterday, and even though it had been downgraded from a hurricane by then, it still did plenty of damage. Huge trees toppled all over our state. Tornados touched down and ripped down trees, overturned cars, and in one memorable photo (below), removed the entire back wall of a house! The parking lot of our local supermarket, just a few miles away, flooded so deeply that an entire car got swept into the storm drain and stuck. When three people tried to help the elderly driver of the car get out, all four were swept by the strong current through the culvert and came out on the other side of the shopping center! Miraculously, they were all OK. My husband drove past there yesterday and wondered why on earth there were giant Zodiac rescue rafts at our local supermarket (now we know).
Photo from Delaware News Journal
Given all that, we were quite lucky in that we only lost power, along with 100,000 other households in our tiny state. It was inconvenient (and hot and muggy), but we were fortunate that the temperatures this week have been in the mid-80's (F) instead of the high 90's, as they were for most of July. We made dinner on our grill (pro tip: whenever you buy a gas grill, get one with a stove burner on the side), hung out together without TV, internet, or video games, and were just barely able to sleep in the humid 69-degree night. When we called the electric company again this morning (Wednesday), they said our power would be restored ... by Friday at noon! That induced some panic, as our son was struggling to sleep on the hot second-floor, I was wondering how I'd manage to nap in the heat of the afternoon, and everything in our two refrigerator-freezers was steadily warming/melting (we ate all the ice cream last night before it turned to liquid!). As we were making plans and filling an ice chest with ice, surprise! The power came back on. We are very happy to be living in the 21st century again, and I am happy to be online again and connected.
Our grill burner saved us again!
The Power of Pain
Speaking of power, I have been thinking a lot this past week about the power of pain. I explained in last week's post how I got a bad burn on my stomach when a pitcher of iced tea exploded, throwing boiling water at me. I had no idea then that things would get much worse. The burn seemed to be healing well, thanks to loads of aloe vera, until the large blister broke, leaving tender, raw tissue exposed. This has been extremely painful all week. It also meant I needed to bandage the area (after smothering it in antibiotic ointment to avoid infection). The burn itself is painful, but the tape from the bandages has also irritated my skin, leaving a pink, painful/itchy rectangle around the burn! Each day is a test of endurance, trying to find a new way to bandage the exposed area without putting more tape on the already-irritated skin, and by the end of the day, I am just about in tears. It hurts for even loose fabric to rub against my skin, so I often tuck my shirt up into the bottom of my bra to expose my belly ... and believe me, that's a sight no one wants to see! My bikini days are long past.
So, my question for all of you is: how do you handle constant pain?
Chronic Pain is Exhausting.
Pain has never been a part of ME/CFS for me, except for flu-like aches during a crash or the joint pain from Lyme disease (which quickly retreats when I treat the infection). I know that many with ME/CFS and similar conditions experience chronic pain on a daily basis, including my own son who always has joint pain from Lyme and bartonella. I am discovering that the pain just completely wears me down. By the end of the day, I am in a bad mood, exhausted, ready to just rip the skin off my stomach. My greatest empathy goes out to those who live with pain every day. I am in awe of your strength.
And that brings me to the blues. This past week, several times, I have just felt inexplicably depressed, especially in the afternoon and evening. I suspect much of it is physiological, the result of the constant pain and irritation, plus I am still struggling to get the dosing right on my antivirals, so my energy has been very poor for months. Last Saturday, after my nap, I was feeling particularly down and couldn't figure out why when I spotted something I had said to someone else on Twitter that very morning:
"Feel free to wallow today, if that's what you need. Be kind to yourself."
That really resonated with me, and I realized I needed to take my own advice. I gave up on trying to get things done (I have some serious issues over always trying to be productive), went out to our screened porch with a glass of decaf iced tea and a piece of extra-dark chocolate, and just took some time for myself. I browsed through a magazine and played an online game (I am getting really good at Word Wipe!), and though I wasn't exactly ebullient afterward, I did feel a bit better. Self-care is so important, and I am so bad at remembering that! With my whole family home (and here all the time), I have very little quiet time to myself lately, and I think that is part of the problem, too. I should remember to listen to my own advice more often!
Spending time on our screened porch is relaxing.
What Are You Reading & Watching?
I just finished reading Normal People by Sally Rooney, a highly acclaimed novel that was recently made into a Hulu TV show. Don't laugh, but I chose it because I needed a lightweight paperback that I could hold up and didn't have to rest on my painful stomach! It was very good, and I want to watch the show now. Today, I started David Copperfield by Charles Dickens, a birthday gift and a classic I have long wanted to read! This one qualifies for my Big Book Summer Challenge (there's still time to join the fun!), so it is difficult to hold it up without touching my stomach, but I am determined to make it work. Here's what my whole family has been reading this week.
On audio, I've been listening to The Dutch House, a novel by Ann Patchett. It's read by Tom Hanks, and I am finding it hugely soothing and comforting to hear that familiar voice reading me a story in my earbuds. As you would expect, he's doing an amazing job with it and completely inhabiting the main character/narrator. Oh, and it's a good story, too, about a brother and sister and the house they grew up in.
On TV, we are watching so many great shows right now! Let's see ... we are rotating through episodes of Better Call Saul, Yellowstone, Lie to Me, the much-anticipated second season of In the Dark (sooo good!), the unexpected second season of The Alienist, and we just finished the excellent second season of Hanna. On my own, when I could find 22 minutes to myself, I just finished watching all three seasons of Atypical, and I am missing it so much! It is a truly outstanding family drama about a young man with autism and his family, and it has both heart and humor. I know it's good because I finished it more than a week ago and can't stop thinking about it (luckily, season four is coming in 2021). On Saturday night, we watched a movie, Transiberian, that was very good--an action-packed thriller with a great cast, set in the Siberian winter. (My reviews at the links.)
What have you been watching and reading lately? I am always looking for suggestions!
(Note that I am still trying to resolve my problem with comments from mobile devices not showing up. It is especially frustrating because my other blog is set up exactly the same and still works just fine, and Blogger has no support at all ... but I am continuing to try to get to the bottom of it!)