Is anyone else just so overwhelmed that very thing feels terrifying and also not real all at the same time? Just me? Ok ok 👌🏾 #howareyoudoing #howareyoufeeling #notokbutok

Nearly getting NHS vibes here. Managed to get appointment with clinic in Germany that has specialists with knowledge on core myopathies/RyR1-related myopathies. The appointment is end of September 2025. Ok, early 09.2025 would have been possible, but summer vacation🤣 #priorities #notOkbutOk #muscles

The cutest and fluffiest shirt I own. I also have a congenital myopathy with the cutest and roundest name ever, multiminicore myopathy 😍😻🤷 A quite mild form, despite being the geologist who can't properly walk uphill. I need more of these shirts methinks 🤣 #notOKbutOK #myopathy #muscles