No supernatural powers
Need be invoked by us to help explain
How we will see the world
Dissolve into the mutability
That feeds our future with our fading past:
The sea, the always self-renewing sea.
The horses of the night that run so fast.

Clive James


After seven years I am almost used to living with this disease. Almost. In other words, I am not and I doubt I ever will be.
But there is such a strong desire to relax into this state of imperfection, of all the quietly murmuring threats and sudden periods of unrest, of never quite getting there, of frayed edges and dark holes I might drop into at any moment.
I want to feel all this without being frightened, without feeling diminished or less alive. Living with a chronic illness does not mean that my luck has run out. It's just a different kind of luck for me now.
There have been times - and now is one of them - where I have been so washed out and overwhelmed by symptoms and additional events and all the tests and treatments etc. that doing normal stuff ever again seemed almost impossible and as a result, it took me weeks and weeks to regain my confidence.  Last week the physiotherapist praised the way I can now spread my toes and hold my leg.  When afterwards I tried to explain this to R I could not find the same enthusiasm for what suddenly felt like only a minor achievement. After all, the recovery from the spinal surgery is as good as completed. In moments of weakness, I let out brief sobs of frustration, as I may never recover the full use of my right leg again but it feels more like a small mechanical glitch (as long as I can cycle). But in the bigger picture, the one where ANCA vasculitis rules, this is truly nothing.

No cure, only The Cure:



This  morning on the phone to S, I overheard R mentioning for the first time the possibility of me never going back to work.  I am not so sure, I shout.