I’m all about the blogging this weekend it seems.
In fact, this is actually a request for help from other spoonies rather than the standard ‘this is what’s happening’ type blog.
The medical profession scares me, mainly from the previous visits to GPs and consultants who have used the actual phrases “man up” and “well, what do you want me to do about it?”. I currently have a brilliant GP, but live in fear of trying to explain what’s going on with my body to another doctor or physio, or worse still a PIP assessor. (I’m far too scared to apply for a blue badge despite using the chair daily in case we return to “it’s all in your head”).
So, as a backup (and to stop medical people asking me to remember my whole medical history in a 10 minute appointment and do tricks like a performing monkey), I’ve been creating a mind map of all the dots I’ve been joining up.
If nothing else, it might help my friends understand a bit better what it is and what hurts.
Anyway, I’d really appreciate some input from other EDSers from a “is this a good idea?”, “have I missed anything?”, “have I genuinely lost the plot?” perspective!