Discover and read the best of Twitter Threads about #mecf

Most recents (1)

Living with very severe #mecf 1: Silence

Before Mila became very severely ill with #mecfs, playing the cello was a major part of her life and identity. I loved listening to her playing Bach’s suites while going about my work – until she became too weak so sit upright.
1/8 Image
Today, due to her extreme sensitivity to sound, our house is very quiet. A sign at the door asks visitors to enter softly without ringing the doorbell. We never have more than a handful of guests, no loud talking or laughing, no singing or playing the cello or violin.
2/8
In Mila’s room, total silence prevails. She can no longer speak due to extreme weakness. But also listening to just a few words is too exhausting and causes PEM. Some communication can be avoided by adhering to a strict routine. Plus, she uses finger signs that she developed.
3/8
Read 8 tweets

Related hashtags

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3.00/month or $30.00/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!