Hi there, if you are treated with chronic ventilation (mostly not fulltime, but you always have it in your reach and use it when you need it), can you help me?

How does it work for you? (1)
Does it give you more strength / energy in general? (2)

For example:
I often have periods where I'm "near crisis" (though if docs didn't know I have this so very often, they would say it's a MG crisis). It means I have general weakness, mostly eyes to toes. Of course not all muscles are affected evenly, but still the only thing I can do is lay there, wait till it's subduces and not so very much else.
At those points my breathing problems get worse; not so much it will kill me or won't be managable with those nifty body systems, but still I do not get enough O2. I HATE that feeling the most: the feeling I can't breath. My diaphragm feels tight and like it's hard rubber; no way to expand (breath in) as much as I need.
Do you recognise this? (3)

At this point, if I use it: will it only help my breathing, or will it also give me more strenght in general? (4)

And what will it do if I use it at not so bad moments, but when I'm "just" out of breath? (5)

Does it give you more strength in your diaphragm? Does that feeling where your body tells you: "do not move or you will pass out" go away? (6)


Anyway, loads of questions...any information is very welcome.

FYI: my lungfunction is not good because of the MG. My saturation is on good times between 87 - 94 % on bad times it's worse.