In this episode, Maggie and Nick delve into the nuances of their personal journey, discussing the challenges of living with MEcfs. They explore the impact of illness on their relationship, the importance of mutual respect, and the power of storytelling through their experiences. The conversation touches on cultural references, personal anecdotes, and the significance of finding joy in small moments.
Show Notes:
After summing up our thoughts on Superman, we jump in to talk about the experience of living with ME, but don’t go into specifics of the illness all that much. Please watch the TEDx talk here for a deeper dive:
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I mentioned the Visible Health App and how much it helps me in my pacing (which is my most effective treatment). Here is my referral link, (click here) to save $20 (we both get $20 off when you sign up with the link). This isn’t a paid ad, just something that helps me greatly!
Resources for Meeps and their caregivers:
ME Action Network: This is my lifeline. From information about ME, how to talk to my health care providers, and support, I couldn’t have done the last year and a half without them. There are care giver support groups as well.
Bateman Horne Center: Another priceless resource. There is a comprehensive Clinical Care Guide listed on the website along with many other informational resources. They too have patient and caregiver support group meetings online.
I know I’m leaving out a ton of info, but these are a good start.
Show & Tell:
Nick is loving the series Alien: Earth, watch it on hulu
And more on the Oracle here
I edited and produced the show, and I left in a lot of the brain farts and pauses to show you a tiny bit of the reality of cognitive dysfunction. I am not in a crash, but very fatigued and as we go along it gets harder for me to talk. If it sounds unedited, that’s by design.
Much love to you and yours and make sure to take care of each other,
Maggie
