And you hope
even if there is no treatment
and you hope that things will get better,
even though they never have
and you hope that people will start to treat you properly,
even though they never do
and you hope that you are not dying,
even though you quite probably might be
and you hope that tomorrow will be better,
even though it is unlikely,
because you simply cannot bear to believe that it won't be.
And that is how you live
your life with Very Severe ME.