Hey @Kelkel89
There have been a number of occasions in the last 15 years where I've had to view my disease the same way I'd look at any monstrous accident. It's been the only way I can accept the lack of choice with any degree of grace. Car crash, train derailment, plane falling out of the sky...I've just had to accept that the remedy offered to save my life--regardless of its palatability--is the only option or I'd completely lose the plot. Which doesn't mean I don't grieve for the loss of body parts and functionality.
My go to's for surgery are:
- A clipboard folder where I can collect everything to do with my hospital stay. I record everyone's name, when I saw them and any information they gave me. And I mean everyone. I can tell you the names of every specialist, registrar, physician and nurse that has ever stood in my room. I know, that sounds over the top, but when coordinating treatment across multiple venues, and revisiting the whole shitfight a decade later, that info has been invaluable.
- A bag to carry your drains around. Anything with a long enough handle to sling over your shoulder will do. Take two in case there are leakages. Boomerang shopping bags are good.
- A thermo mug and tea or coffee bags to your taste. Cheap beverages in cardboard cups are too horrible to contemplate when everything else completely sucks
- Get them to print an extra sheet of your patient labels (or nick a few from the board on the end of your bed) and stick one on all your personal items that might get mislaid if you change beds or leave something behind. Things like your phone, charger, the clipboard I mentioned, slippers etc
- An early appointment with the hospital social worker if you are likely to have financial problems (who doesn't?)
Mxx