There are days when time is long.
Days when nothing seems to be moving forward.
Being in hospital right now with Coronavirus restrictions is sooooooo long.
No free movement outside your room.
No medical appointments in the foreground anymore. None.
Being in hospital now die to a new neurological problem is scary. Especially a hospital with NO NEUROLOGICAL specialists.
Rare disorders of the type of my Chiari are not well delt with. They aren’t main stream conditions. But they are lifelong. and they evolve.
Invalidation is so damaging. And with rare conditions there are so few experts.
Nobody appreciates the loss of life in terms of limitations caused and pain you absorb.
There are days when tears of despair are all you have.
There are days that all you can do is cry.