Tuesday 31 January 2012

31st January

Today last year I got my official bendy diagnosis.

It was awful.

Not the diagnosis part. Finally having a name to put to the symptoms, being able to make some sense of them, that part was incredible - but that part had happened 8 months before thanks to a chance comment by a friend about her sister.

This time last year my suspicions were confirmed by a rather unpleasant rheumatologist who abandoned me into a new life with no information or follow-up.

Luckily the wonderful folk at the HMSA forum were there to answer all my questions and help me pick up the pieces.

Today we have thoroughly reclaimed the date 31st January in our household. It shall henceforth be remembered as the day Beanie's wedding dress arrived, and (this just in folks) the day I passed my driving theory test.



  1. Yeay! Congratulations on reclaiming and renaming this day... and on passing the theory test, not that I ever doubted you would.

    There is power in naming, so I'm told, and am inclined to believe it's true.

    Many happy returns of reclaimed 31/1 day

  2. How exciting! Have you seen the dress or is it going to be a surprise?

    Well done on the theory - one step closer to being a bit more mobile.

    Bellsie xxxx

  3. I thought I'd replied already! Thanks guys =] I've seen the dress, tis the same as mine but different colour/pattern. Exciting!

  4. Hi Kylie, thanks for your comments, I'll have a look at your blog. I'm pretty sure that I do have POTS - certainly have some kind of autonomic dysfunction - but finding someone to diagnose me is proving a challenge. I'm hoping that when I'm sorted out with my new GP that we can make getting that diagnosed and treated a priority. My rheumy thought I had FMS before she examined me but I don't have trigger points.

  5. THIS MAN will sort you out - but he's a long way from Scotland and you need to see him privately as he can't currently take NHS referrals for POTS: www.drglynthomas.co.uk