People tell me: do that, ask your doctor for that, insist on test xyz now. Don't wait, demand this new treatment. Do you have any idea how complicated this all is? How difficult it is some days to call and ask for an appointment. Should I let it get worse? Is this bad enough? 

Some days, I just want to move on, never see another waiting room, ever again. I could write a book on waiting room decorations, it would end on a tragic note. No more carefully rehearsed questions that fail to express what I really wanted to explain anyway. I gave up on lists some time ago, it makes you look like a hypochondriac nerd with issues. 

Some days, I just want to walk in there and look across the inevitable desk and roar: I feel ill, just do something. Whatever. Just let me lie over there on that stretcher and get on with it.

No more cheerful thank yous and smiles all round because I want to remain in the good books  when the shit hits the fan. I want to be the good patient, the one who is on the ball while at the same time understands the constraints of time and money, who can come up with short precise descriptions and not asks too much. In my ideal world, every person with a chronic illness deserves a personal assistant who organises appointments, tests, insurances, dinner dates and holidays, incl. cancellations and sick certs. I would settle for a robot.

And some days I want to test fate, just let things happen, just wait and see. What would happen if I pretend to be stuck somewhere without doctors and labs and pharmacies and all those shiny diagnostic tools. (After last week's x-ray, the young intern said, please remember to record it in your x-ray data card. Oh sweetie, I almost replied, nice try but I've lost track long ago.)

But whatever it is - panic, fear, worry or simply the fact that I love being alive just that bit too much - I cannot do that. 

And then there's this thought: I know I can look within and watch the stuff coming up - the restlessness, anxiety, impatience, fear and tears, the lot - just watch it come up and don't get involved. I know by now how it rises, how it eventually passes away. I know it requires patience, self discipline, sometimes distraction, sometimes a cup of valerian tea, a walk through the garden at night. I know that sometimes it takes ages and sometimes it can be just a matter of sleeping through it. And yes, I know that in the end I will be where I started: a woman with a serious chronic illness.  But what else is there? This is it, my gorgeous life. And I mean it.

This day 33 years ago, we got married.