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Did some reading and apparently my set of conditions can mirror end stage heart failure despite my organs appearing okay. Cool cool. Things aren’t working at the cellular level so for example, my blood isn’t transporting enough oxygen, which makes them starved. Cool. 🫠

Mix with it the combination that the neurologist told me of my autonomic system management making my CSF fluid levels too high… I can see why he said things are ‘unfortunate’. I am S T R U G G L I N G

And yet… I’m here, with the WILL of what I once was. An athlete. But current health means even the littlest (I mean less than 10 mins) worth of movement means it’s making me crash with post exersional malaise (PEM). Which makes things REALLY hard to get out of this doom loop.

But it wasn’t possible to take it all. So I’m now waiting for them to try again at a place with the correct equipment for some bone removal. Whilst the swelling and pain goes down from the first attempt. I am strong willed. I am stubborn, but boy is this current state breaking me.

It’s not even easy to fix. Chances are I might need a stunt in my brain. GP has referred me to haem as well because my blood isn’t doing the oxygen transportation thing… Meanwhile, my back up body systems are essentially in debt and have been for so long, that I’m just on reserve.

Not terminal, which is fantastic. But it just feels like my very little tolerance window is getting smaller and smaller, and the traditional fixes make me worse.