Wednesday, 17 August 2011
'Tired? I know how you feel'
I appreciate that you are trying to empathise - honest! Once I have got over the urge to bury you in sand bags then make you cook dinner. Can't? Just pull yourself together!
I have PoTS, secondary to EDS/Hypermobility Syndrome. Many of the symptoms are similar to CFS/ME. The fatigue and its brain-fogging companions. The utter toe numbing exhaustion where just moving a hand makes you want to hurl. And when you try to explain you either can't find the words through the jelly in your head, or the listener switches off cos you are whining.
Before my PoTS became severe I had no idea what this fatigue lark was really like. I would try to understand how people felt - and couldn't see why they got so tetchy. Now I am the tetchy one.
So, egged on by friends and family I wrote and illustrated "You know you have POTS when..." - although much of it could equally well be called 'You know you have CFS when..'
Explaining without the tetchy.
And whats more, the 'not entirely somber' approach seems to make people actually start to respect my condition. They laugh with the book, but then they see me flolloped but instead of 'I understand, but pull yourself together' I hear "She's in zombie-with-head-full-of-cotton-wool mode again! - so I'm making tea"