So the point of this was to explain what my life is like living with PGP. Being in constant pain and limited to what you can do each day is a frustrating and sometimes depressing situation that is hard to explain. New friends and some old ones, just don't understand. I don't look particularly ill so it's easy for people to forget how debilitating it can be. So here is my fairground theory.
Everyone in the world lives with a wrist band. This wristband entitles you to do whatever you please all day.You have full access to whatever you choose to participate in. The whole world is a fairground and you can participate in it as much as you like.
For me I have been given 20 tokens for the day. Each day I am given 20 tokens. When I leave the fairground for the night, I have to hand back any unused tokens, I can't save them up for the next day.
Each daily task in life uses a token, nothing is for free. So getting up and getting showered uses 2 tokens. Walking my daughter to preschool uses 4 tokens - 2 there and 2 back. If I stop at the shop on the way home to get some food shopping I use at least 1 more token
So by 9.30 I have used 7 tokens and have only 13 left. I have to use them wisely, which often means tasks, chores and even the nicest of things sch as going for coffee with a friend has to be missed, not because I don't have the time or the money but I don't have enough tokens left.
By 12 I have done the washing (2 tokens) washed up (2 tokens) and made lunch (1 token).
I have 8 tokens left.
I do some work this afternoon, I have a baby portrait to do. Because I have to get up and down on the floor and move around, I use 4 tokens doing less than an hours work.
I have 4 tokens left - I can't now walk to collect Molly from preschool as I would have no tokens to take her to the park, and make her dinner and bath her. So I drive there to use I token, and leave 3. I take her to the park - use 1 token, leaving me with 2. This is enough to make tea and put her to bed. The bath will have to missed tonight because I have run out of tokens already.
On Monday I am changing in my tokens and hoping for a wristband.