1 hr
A Bear, A Zombie Leg, Food Allergy, Morton's Neuroma, and Living the Spoonie Life Invisible Not Broken - Chronic Illness Podcast Network
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- Mental Health
Meet my new co-host Kyros. He was one of the first friends I made when we moved. He and his husbands are the most loving and kind men you could ever hope to call friends. If you ever see Kyros you would know why he would be someone you would think to ask for help moving furniture before you would think to offer him a seat. After talking with Kyros about his food allergy which I had no idea how seriously and how long it could affect him and about his trouble with walking I will be doing things differently when he comes over. I will NOT make dry meringues. Here is a shameless plug for Kyros and his co author Orion Hunter's book. I hope you enjoy your time with my friend. Until next week Be kind. Be gentle. Be a badass.
Did you like what you just listened to? Thank you! If you enjoyed please help us here at Invisible Not Broken and share us with someone in your life. Sign up for the newletter for news and specials.
Email Address Sign Up We respect your privacy.
Thank you! Links From The PodcastMorton's neuroma
Arthritis
Dairy Allergy
Spoon Theory
Elimination Diet
Uber
Lyft
Task Rabbit
Kyros Invisible Illness Questionnaire
Name: Kyros Starr
Age: 48
Disorder: Arthritis, Morton’s Neuroma, Dairy Allergy, Peripheral Neuropathy
Age disorder became a daily issue: A: 45, MN: 33, DA: 40, PN: 47
Who were you before your illness became debilitating? I loved taking the dogs to the park, riding my bike everywhere. I worked 10 hours a day as a cable technician on my feet the whole time.
Is there anything you would do if you were not sick? Ride my bike more, walk to the grocery store (It’s only 5 blocks away)
What should other people know about our daily life? I’m in near-constant pain. A good day is about a 2/10, an average day is about 5/10. A bad day is 9/10.
What would make living and moving in the world easier for you? Even sidewalks/pavement. Uneven ground makes my feet hurt more. Also, something other than concrete everywhere. Standing / walking on concrete is the worst. I can walk on grass / softer surfaces (even though they are uneven) for hours but I can only stand on concrete for about half an hour before I am in ever-increasing pain.
Life hacks? Walk stools are your friend. You can wear it like a backpack then sling it off and have someplace to sit in a just two minutes. https://www.amazon.com/gp/product/B0015A8DVM/
Support from family or friends? My partners are great, but they don’t always understand why I say I can’t do something. “You did it just fine yesterday,” is a common phrase. They finally started understanding better when I explained the concept of “spoons” to them. https://en.wikipedia.org/wiki/Spoon_theory
Do you find that people do not believe you are sick because of your appearance? All the time. Especially the Dairy Allergy part. I have people tell me all the time that “Oh, I’m lactose-intolerant too. But I go ahead and have ice cream whenever I want. I just deal with the consequences.” I’m usually like, “If I did that, I would be running to the bathroom with explosive diarrhea in about 30 minutes and would have exceedingly painful stomach cramps and gas for the next 3-4 days.”
How has this affected you positive or negative? It’s caused me no amount of trouble when I eat out. I have waiters/cooks who don’t take me seriously or treat it like I’m just making it up. I once ordered a hamburger and they brought me a cheeseburger. I told them I couldn’t eat it. The waiter initially argued that I got the cheese for free because they only charged me for a hamburger. I reiterated that I couldn’t eat it. The waiter took it back and came back a few minutes later with the same burger with the cheese scraped
Meet my new co-host Kyros. He was one of the first friends I made when we moved. He and his husbands are the most loving and kind men you could ever hope to call friends. If you ever see Kyros you would know why he would be someone you would think to ask for help moving furniture before you would think to offer him a seat. After talking with Kyros about his food allergy which I had no idea how seriously and how long it could affect him and about his trouble with walking I will be doing things differently when he comes over. I will NOT make dry meringues. Here is a shameless plug for Kyros and his co author Orion Hunter's book. I hope you enjoy your time with my friend. Until next week Be kind. Be gentle. Be a badass.
Did you like what you just listened to? Thank you! If you enjoyed please help us here at Invisible Not Broken and share us with someone in your life. Sign up for the newletter for news and specials.
Email Address Sign Up We respect your privacy.
Thank you! Links From The PodcastMorton's neuroma
Arthritis
Dairy Allergy
Spoon Theory
Elimination Diet
Uber
Lyft
Task Rabbit
Kyros Invisible Illness Questionnaire
Name: Kyros Starr
Age: 48
Disorder: Arthritis, Morton’s Neuroma, Dairy Allergy, Peripheral Neuropathy
Age disorder became a daily issue: A: 45, MN: 33, DA: 40, PN: 47
Who were you before your illness became debilitating? I loved taking the dogs to the park, riding my bike everywhere. I worked 10 hours a day as a cable technician on my feet the whole time.
Is there anything you would do if you were not sick? Ride my bike more, walk to the grocery store (It’s only 5 blocks away)
What should other people know about our daily life? I’m in near-constant pain. A good day is about a 2/10, an average day is about 5/10. A bad day is 9/10.
What would make living and moving in the world easier for you? Even sidewalks/pavement. Uneven ground makes my feet hurt more. Also, something other than concrete everywhere. Standing / walking on concrete is the worst. I can walk on grass / softer surfaces (even though they are uneven) for hours but I can only stand on concrete for about half an hour before I am in ever-increasing pain.
Life hacks? Walk stools are your friend. You can wear it like a backpack then sling it off and have someplace to sit in a just two minutes. https://www.amazon.com/gp/product/B0015A8DVM/
Support from family or friends? My partners are great, but they don’t always understand why I say I can’t do something. “You did it just fine yesterday,” is a common phrase. They finally started understanding better when I explained the concept of “spoons” to them. https://en.wikipedia.org/wiki/Spoon_theory
Do you find that people do not believe you are sick because of your appearance? All the time. Especially the Dairy Allergy part. I have people tell me all the time that “Oh, I’m lactose-intolerant too. But I go ahead and have ice cream whenever I want. I just deal with the consequences.” I’m usually like, “If I did that, I would be running to the bathroom with explosive diarrhea in about 30 minutes and would have exceedingly painful stomach cramps and gas for the next 3-4 days.”
How has this affected you positive or negative? It’s caused me no amount of trouble when I eat out. I have waiters/cooks who don’t take me seriously or treat it like I’m just making it up. I once ordered a hamburger and they brought me a cheeseburger. I told them I couldn’t eat it. The waiter initially argued that I got the cheese for free because they only charged me for a hamburger. I reiterated that I couldn’t eat it. The waiter took it back and came back a few minutes later with the same burger with the cheese scraped
1 hr