I'm sure there are still many things to learn, but these are some pointers I've picked up...in bullet point form (obviously)
# Looking for answers on why you got sick - and finding them - doesn't do anything to make you feel better. Knowing the source doesn't change the present reality.
# You should not distract a junior doctor while he is trying to insert a needle in your arm. They don't sleep much. Concentration is key or expect to see much blood.
# Ear plugs are the difference between sanity and madness when in hospital
# The little, material things in your life don't matter
# Worrying about the accumulation, security and improvement of the little, material things is what normality is and you will miss that
# You can get used to anything, no matter how difficult, no matter how alien to what your life was like before.
# One day you will find yourself speaking effortlessly about medical terms and procedures and having yourself opened up and patched back together and it will shock you how ordinary those words now seem.
# The easiest way to pass time in a waiting room is to size up the others around you and try and guess what's going on with them. It's far more interesting than outdated magazines.
# Consultants will always want to shake hands with you at every appointment, even though you have been introduced and he/she knows every detail about the inner workings of your body. I think this is an etiquette thing.
# Waking up from an anaesthetic will grant you the most disorientating, queasy moments of your life. You will vomit.
# You should never, ever read about your illness on Wikipedia or on any other website. The people who write these things have a particular fondness for the term "potentially fatal" and they appear to have misplaced any favourable statistics on people who have lived with your condition and done quite well
# You should never, ever read about the possible side effects of your medication. Just take it that the operation of heavy machinery is off the cards for a while.
# When sick, you will spend your time striving to be normal. You will try to work as normal, socialise as normal, eat as normal and exercise as normal.
# The biggest challenge is to realise that life isn't normal anymore and make the necessary adjustments. When that is done, you have reached the point of acceptance.
# Nobody in your life will care about you the way your family - especially your parents - do.
# The line between those who will acknowledge you are sick and say something encouraging and those who will make you feel like Death just typed your address into his SatNav is very fine. Few people know the right thing to say, but be patient with them.
# There is an immediate level of understanding with other people who have your illness or even those who have any illness at all. Maybe cos we feel a little like the lost souls of society. A kind of sick Glee Club, without the killer dance moves.
# When you lose sight of the light at the end of the tunnel, remind yourself the pain/bout of nausea/bad night on dialysis will eventually go away. A favourite phrase I have now and one I repeat to myself a lot:
"This Too Will Pass".