Which is just what you want to hear when you see your specialists. Not that it's that unusual these days. But a wee bit more pokerface would be appreciated. (It's most likely a muscle fasciculation, by the way. Could be a spasming blood vessel, but I need to check my pulse next time it happens to work that out. Another moment of excitement to which I can look forward).
At least I managed to get this one of video. They happen frequently on my body these days. But when you try to explain these things you often look like a loon. Now at least it's documented so they know I'm not some weirdo making these things up. Now I just have to get 'stroke face'* (when the left side of my face droops) and 'crazy eyes'* (probably nystagmus, you can see a little bit of it in this vlog I did ages ago) on camera. Not that I generally think to do it when it happens. Usually I am sick as a dog when it occurs and really I'm not thinking of Kodak Moments at that stage. My report from uberneuro actually includes both delightful phrases. At least I know he was listening, I guess. And it doesn't look weird. No. Not weird. At. All.
(* For those new to the blog, this is what my delightful children call these things. Basically if mum has stroke face or crazy eyes they know it's a bad day).
What I do love is that even as I write I know there'll be another Bobette out there saying "Hey, I have that too". Because for all our reported 'uniqueness', we have a lot in common. Apart from the odd specialist, most doctors are unlikely to see more than a handful of Bobettes in their practice. And even then without specialist knowledge, they may have difficulty differentiating the weird from the not so weird. Thanks to the internet, Bobettes from all around the world can connect and share their stories. And all of sudden you realise your weird is actually approaching normal. Well not regular people normal. But our normal bar is quite low and easily excited by discovering the normality of our abnormal lives. We are a simple folk.
Another great example of my not so weirdness, is the fact I nolonger 'prune' when I have a bath or swim. Here I was thinking it was just me and my bizarre body. But no there are many many Bobettes out there with the same issue, all thanks to SNAFU. Who knew that having your nerves die would mean a lack of pruning? Not me, that's for sure. I don't recall learning that in my Neuroanatomy and Neuropathology classes. And when put up on a forum, a large group of non-pruners came out of the closet.
Or my labile blood pressure that apparently is quite severe. To give you an idea here are 3 readings from a five minute period.
Time 3Fun times. Not exhausting at all. And, as I now know, not that uncommon in the world of Bob.
And these are just the tip of the iceberg as far as weirdness goes. Hell, even my battle scars from my hospital stay were greeted with a chorus of "Me too!"
(Good old Nurse Ratched, wouldn't believe that I react to tapes)
And that, for me, is the joy of social media. It stops us from feeling so alone. If only one person responds with a "Me too", it's a relief to know you are not alone. To know that whilst you are abnormal to most of the world, there is a part of the world out there that understands and gets it. That small connection removes a layer of fear and makes you feel a little less lonely. We may all differ in severity and aetiology, but the world of Bob is quite inclusive. After all, a busted ANS is a busted ANS regardless of your cause.
And then you realise, in the world of chronic illness it is actually quite possible to be abnormally normal.
The always weird Michelle