I should be able to find ways to work around the problems, I can do it when I want to, did a bike trade show a few months ago, 4 days working for one of my clients, doing all the press interviews, talking to dealers etc. It left me f'cked but showed that I am capable of more. I just need to find that determination more often. It's down to me to do that, can't blame anyone else, my missus sees that I can do it and tries to encourage me but I am so insular now I struggle to respond. I can't blame all the equipment, we have found ways to get around that, had a rough time a few weeks ago when I was needing oxygen all the time and that stopped a trip to Ben Nevis for a mountain bike race but amount of oxygen needed was too much plus I couldn't be laid flat as my sats drop, really needed a powered profiling bed. Lucky I didn't go as a day after I had a huge de-sat, honestly thought life was over, accepted going back into hospital when I said I wouldn't do it again,would of hated to be away and put my wife and carer through that night, it was hard enough at home.

Totally agree that people adapt, we are not unique, you just think it'll be impossible to live like this but when it happens you cope. Maybe one day they will find a fix but it needs to happen straight after injury so you don't have to go through this.

The way we live is incomprehensible to AB, I'm really open about what gets done to me, post stuff like bowels and what is involved to give people an insight on facebook. Share links like Clayton's writing to really let people see. Unsurprisingly they get few likes yet my positive posts can get hundreds. We're just stuck with this, it's our reality, at least you've now got an assisted suicide law! Like you I find much of what gets done to me degrading, I close my eyes and switch off, I'll never accept that talking to my carers about the size and consistency of my shit is a normal start to a day.

We have the NHS and it covers the carer costs thankfully but it does split into essential care and ongoing, I'm in the ongoing part and it would need agreement from all involved to get diaphragm pacing. `If I am honest I am not that bothered, I'd be relying on a hidden box to breathe at least with a vent it's quick and easy to swap if it fails.