In this episode, we dive into being a family member living will chronic illness and the emotional ride of guilt, fear, and FOMO (Feelings Of Missing Out) that it puts us on. We also talk of the extra financial burden that comes with disability.
Erica speaks of the mom guilt she feels from not being able to do things like taking the kids trick-or-treating when they were young, and also from having to ask for help from her kids. (Maybe we should examine the societal norms of parenting in general?) And we both have felt the deep sadness of missing out on family activities or gatherings. We’re sure you have too.
And although so comforted by our pets, sometimes we both feel the guilt of not taking our dogs for walks or throwing a ball for their entertainment. Our bodies don’t always allow it, but of course, they don’t know that.
Even garbage day can cause distress. Do we push through and do the mammoth task with consequence? Do we ask someone in the family to do it and then feel like a burden?
And what happens if our partner or caregiver gets injured and can’t help us anymore? Insidious fear about this squats in Susie’s brain.
It’s not all negative though. We discuss the relief of symptoms improving, if even just a little. And sometimes we can make important and exciting events. Erica shares how she was able to attend the AdaptExpo (https://www.adaptexpo.ca), a free, one-day event focused on accessibility, adaptive living, and inclusive sports. There she met the author of the book,
The Day the Hops Slowed Down, a lovely children’s book about chronic illness written and illustrated by a mother and daughter team. We highly recommend it. You can check out their website and get yours here: https://www.chronicallysarcastic.ca/
We also have some laughs over Susie’s Defecating Proctogram. Yes, it is what it sounds like. And there was a full audience cheering her on.
Housekeeping: We apologize for the sound issues in this episode. It gets a little garbly when we are both speaking. Also, due to her MG, Erica’s face muscles sometimes fail her and you might notice her eyes drooping. This is not from disinterest!
CONTACT INFORMATION:
Email: [email protected]
Watch us on YouTube: @iseeyouthepodcast
FB/IG:@iseeyouthepodcast
Substack: I See You – The Podcast
ERICA:
Website: www.theartoftakingupspace.com
IG: @ericazacharias
SUSIE:
Website: www.susieschwartz.com
IG: @authorsusieschwartz
Substack: The Quest for Less Health Stress, Secrets of a Thriller Writer
Book: Help the Doctor Help You: 41 secrets and tips for self-advocacy to get the BEST from your appointments. (Available on Amazon, Waterstones.com, Ingram Spark)
