Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!
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Today we chatted with Lindsay (insta: spoonfuloflindsay) who shares her story with small fiber neuropathy, POTS, migraine, ME/CFS, and more!
Notes:
Small Fiber Neuropathy: Lindsay describes what small fiber neuropathy is and how it affects her daily life as a teacher through numbness, tingling and pain.
Daily Challenges: The most challenging impacts on Lindsay's daily life from her conditions like brain fog and fatigue.
Coping Strategies: Ways that Lindsay advocates for herself and finds accommodations like reduced hours and mobility assistance.
Managing Chronic Illness: Discussing strategies for navigating the healthcare system and advocating for oneself when seeking diagnosis.
Give yourself permission to rest
Self-Care Strategies: Deep breathing exercises and meditation apps used to manage fatigue and support restorative sleep and recommends the Yoga Nidra meditation app.
Don’t be afraid of firing unsupportive doctors and finding one with a good bedside manner (you can look at their online profile and reviews).
Asking doctors that are dismissive to document the refusal of the request you made (ex: tests or referrals) in medical notes. This will be proof if you get results back in the future and sometimes they change their mind once documented
