Chronic Illness Vlog: Bump in the Road But Still Doing Well!

Life has been hectic lately, but I did manage to record a vlog last week. My chronic illness vlogs are a little peek into my life with ME/CFS, an honest view of what my life with chronic illness is like on a typical week (though it hasn't been typical lately, with all the travel!). As you'll see in the vlog, I am still crash-free in 2024 (yay!), but I had a string of days last week when I was feeling run-down and had very low energy. I figured it out (yeast again - duh), and getting stricter on my diet helped me get back on track.

You can watch the video on YouTube (the link to YouTube also includes all of my notes below the video, with links to other information you might find helpful that I referenced) or I will include it here below:

 

 As always, I've also incorporated some nature videos into the vlog for your peace and enjoyment.

Our son (the one with ME/CFS for 20 years) and his girlfriend have been here all week and are currently packing their rental truck. They leave early tomorrow morning on a month-long road trip across the US! They've been planning this for years, and we're so excited for them. We'll be guinea pig sitting while they're gone, and then they both start new jobs when they return in June--exciting times!

How was YOUR week?

 

How are you doing?

Please leave a comment below.

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Recent Webinar: Comparing Immunological Signatures Between Long-COVID and ME/CFS

Earlier this week, I participated in a webinar hosted by the Solve ME organization (which, by the way, has loads of great resources for patients and for doctors, in addition to leading advocacy work and funding research). It was called Comparing Immunological Signatures Between Long-COVID and ME/CFS, which was of great interest to me since earlier research has indicated that immune dysfunction is at the heart of ME/CFS, and my own experiences have certainly borne that out.

You can check out the schedule of additional upcoming webinars here. On their YouTube page, there is a full playlist of all of their past webinars (see the playlist in the right sidebar). And on that page, you can watch the one I just watched, or I'll include it here:

It's an interesting talk, and they've already had some fascinating findings from the first phase of the study, looking at long-COVID patients. Much of it will be familiar to those with ME/CFS, as many of these are well-understood characteristics of our disease.

You'll hear toward the end the question that I asked, though unfortunately, the researcher didn't really understand what I was trying to get across (my fault - hard to explain through a typed comment). I do plan to follow-up with an e-mail to make sure they understand that earlier research showed a change in immunological signature between patients with ME/CFS less than three years and those sick more than three years, so this could confound their data in trying to compare long-COVID patients (by definition mostly less than three years) and pre-2020 ME/CFS patients.

They are still recruiting healthy controls and those with ME/CFS (pre-2020), so I'm sending my info to them to volunteer. Unfortunately, you have to be able to go in-person to the clinic in NYC (though if you live in the NYC area, within 50 miles of the clinic, they can provide a home visit instead).

Finally, a quick apology for not posting much here on the blog lately! I traveled a lot in April and have been pretty run-down the past two weeks. I still haven't had a full "can't get off the couch" crash since the start of the year 😀 but my energy was so low recently that I had trouble writing much. AND, we leave again tomorrow morning for my mom's for Mother's Day and her birthday. Next week, our son and his girlfriend will be staying with us and THEN, life should slow down for us for a while, and I can get back to more regular blogging.

TV Tuesday: The Tourist

While we're mostly watching TV shows on cable right now, we do have a few streaming shows in the mix, and one of our favorites is The Tourist, a twisty, action-packed thriller about a man with amnesia.

As the first episode opens, a man, played by Jamie Dornan, is driving through a desolate stretch of Australian desert, listening to the radio, when a tractor-trailer truck comes out of nowhere and hits him violently. He wakes up in the hospital with no memory of ... well, anything. A police officer named Helen Chambers, played by Danielle McDonald, comes to his hospital room to question him about the accident, but he doesn't remember his name, what happened hours ago, or anything at all about his life before he woke up in the hospital. His only clue is a paper he finds in his pocket, as he's leaving, with a date and time and the name of a diner written on it. He goes to the diner for the meeting, but nothing jogs his memory, and he doesn't recognize the woman who is there, though he learns that his name is Elliot. And then ... bad things happen! It's clear that someone--or maybe more than one person--is trying to kill him, but he doesn't know why. Elliot must try to protect himself while striving to learn who he is, though maybe he doesn't really want to know about his life before this. Helen is kind and is intrigued by this mystery man and wants to help him. And she has her own problems, with a controlling husband-to-be.

I know that's a pretty non-specific description, but I don't want to spoil anything. In this show, the unexpected twists and surprises come fast and furious right from the first episode, making it both suspenseful and engrossing. The viewer doesn't know any more than Elliot does. It's non-stop action--and quite a bit of violence--but the show is also funny, warm, and sometimes sweet. Helen is not an experienced police officer nor a detective, but she wants to help. You'll be rooting for Elliot and Helen, as they try to stay safe from killers and learn more about who he is. We are now watching season 2, which takes place in Ireland, and the secrets and surprises keep coming!

The Tourist has two seasons, with six episodes each, and is currently airing on Netflix.