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.
OMG that is so spot on! Made me feel a little sad now reading that as I try to block it all out and carry on but what you wrote is so, so true. I have just come across your blog and have gone back to the begining so I can read it all. I am Jo and have suffered with SPD for 6 years at the end of this month, Jan 2012. It started in my first trimester and it just got worse from there! But I'd do it all again to have my beautiful little girl, so can't complain to much. Was going to have op to fuse pelvis at end of the month but after talking to the Pelvis Partnership decided to try another route first as such a big op, eek!! Well there's no need to tell you that! Saw consultant today and he was great, felt bad though as he was all pleased as all the bolts had finally arrived from the States and then I said change of plan. But like he said the op is so final better to try everything I want first as I can't go back once I've had it. Hope you're doing well. Not read the lastest ones yet, but had to post re the Fairground as it's so true. Take care x
ReplyDeleteI wish I could show this to everyone I know, spot on. Just come across your blog after 5years of pain and my appointment with the consultant last night which ended in we can operate! The words I've longed to hear but now they have been said so many emotions are coming flooding out.
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