This was so brave of you to share. Thank you. As someone living with moderate LC/MECFS, I can relate to so much of this. I'll be up here in Virginia, cheering for your Battery C! ❤️
Thank you so much for writing this!! My 19 year old developed long-covid back in Sept 2021 and probably moved into ME territory around August 2022, at the start of her senior year (haven't pursued getting an official diagnosis because of time, money and my own health problems). We quickly caught on to the concept of pacing and figuring out ways to conserve her energy for things that are important to her (art and her friends). But her dad really struggles with understanding why she can spend three hours on a video call with her friends, but a 45 minute trip to the store can wipe her out for a day. Hoping that sharing this with him will help him understand a little better. 🙂 Sending you good vibes, continued support, and that Battery C gets a little more juice.
Thanks for writing this Jess, so well said! I have moderate ME and POTS and it’s so hard to explain to folks, especially the medical community over here in the UK.
This was so brave of you to share. Thank you. As someone living with moderate LC/MECFS, I can relate to so much of this. I'll be up here in Virginia, cheering for your Battery C! ❤️
Thank you so much! One of the only silver linings of getting this bad is finding the other people who are also a part of this club. ❤️
Thank you so much for writing this!! My 19 year old developed long-covid back in Sept 2021 and probably moved into ME territory around August 2022, at the start of her senior year (haven't pursued getting an official diagnosis because of time, money and my own health problems). We quickly caught on to the concept of pacing and figuring out ways to conserve her energy for things that are important to her (art and her friends). But her dad really struggles with understanding why she can spend three hours on a video call with her friends, but a 45 minute trip to the store can wipe her out for a day. Hoping that sharing this with him will help him understand a little better. 🙂 Sending you good vibes, continued support, and that Battery C gets a little more juice.
I sure hope it can help her feel understood. It's so hard to explain to people! Thank you for your kid words.
Thank you for writing this. I plan on placing this in my medical binder. Supposedly my ME is "mild" but is certainly does not feel that way.
In my opinion, the official definition of "minor" is what most people would call "severe."
Thanks for writing this Jess, so well said! I have moderate ME and POTS and it’s so hard to explain to folks, especially the medical community over here in the UK.
Thank you so much. It means a lot. I keep thinking we might be making progress but we have far to go.