Monday, 25 February 2013

Keep Calm and Carry On (Self-Managing)

Being an Expert Patient Programme tutor is a pleasure and a privilege. It is a fundamental part of my own self-management - it gives me purpose and keeps me going. It is fantastic and moving to see people change for the better and their world open up to possibilities. I got an enormous amount out of the course when I did it, but when I recently finished a course, I found myself feeling very envious of the participants. They left on week six with such a moving wealth of optimism, hope and every thing else that comes with a fresh start and new leaf. Why was I envious?

Monday, 18 February 2013

Identity Crisis - who am I?

Who am I?

A Chiari?
The 'interesting case' in cubicle 4?
123456789 (my hospital number)?
My doctors 10 'o' clock?
A rattling collection of flesh, bones, co-codamol and Fludrocortisone?

Who is me anyway? To be honest, since becoming chronically ill, I am not really sure.

My identity is the thing I have grieved for the most since becoming ill. All of us are like jigsaw puzzles with lots of pieces that all fit together to make us who we are.Until a diagnosis of a long term illness is thrown into the box! Then, mysteriously those corner prices that are the foundations for the rest of picture to build from go missing . . . And then bits in the middle disappear.

Tuesday, 12 February 2013

The Anatomy of an appointment

This post is a bit of an experiment! This is a diary of the days and weeks before and after my annual doctors appointment with my consultant. I wanted to share it because "sense of perspective" is one of the hardest things I find about my appointments. I hope the doctors out there find it gives you another perspective on appointments. For patients out there reading this, I hope you find comfort in realising you are not alone in the all-consuming emotional roller coaster that envelopes each medical appointment.

 Having spent some time at medical school BC (before conditions!), I attended many appointments and didn't think much about them either before or after - it was just another 20 minute slot in a hectic day. . . As a patient, my perspective could not be more different - I have one appointment a year and it a really significant event, with a build up and aftermath to contend with and a barrage of emotions to go with it. This post is to illustrate what happens when I have a doctors appointment, my perspective, so here goes . . .

Friday, 1 February 2013

The Patient Patient: what's in a name?

As I blog as the Patient Patient, I have been thinking about what that actually means - being patient and being a patient - and went to dig out the dictionary on my shelf. I know in previous posts I have defended going into detail about semantics, but when the word 'patient' is so defining for me as a person (and many other people) I don't feel the need to apologise about the geeky wordy nature of this post!

Delving into my dictionary, the definition for patient as an adjective is 'able to wait without becoming annoyed or anxious, bearing or enduring pain with calmness, or without complaint' and in an archaic usage, it described 'one who is suffering', and the Latin origins are from 'one who suffers'. As a noun, patient refers to 'a person receiving or registered to receive medical treatment'.

As the patient patient what am I?