Monday, 11 August 2014

The best of conversations

When fatigue is playing up, conversations decrease. Word finding isn't easy, sentences don't happen and word order becomes increasingly creative.

On Saturday I was facebook chatting with a Carla. Who was also a fatigue zombie.

Minions to the rescue!!

What happened next was one of the best conversations I have ever had.

Thursday, 7 August 2014

It's been busy!

I know my blog has been quiet.

July's offline stuff stole all my energy -it's been quite a month!

New products, attending Warrington Disability Awareness Day, more new products, helping with the Hypermobility Syndrome Association's residential conference lycra.


Yes, lycra. from

You see, some of the way my POTS and EDS have affected me include: lots of blood pooling in veins causing reduction of blood supply to the brain, very poor proprioception and lots of unstable joints. To help manage the blood pooling I've been wearing standard compression stockings plus sports compression wear plus abdominal binder for years, and been on various meds (including Octreotide - an injection every 3 weeks in the butt). They have helped but not enough. So I grabbed the chance to try a custom made lycra outfit (socks, leggings, T-shirt) with extra compression in relevant places.

I wore it on the Saturday of the HMSA conference. Yes, this is me:

How awesome is that!?!

Funnily enough, this was me the next day:

(My wheelchair is out of shot. Or possibly being sat on my the photographer. I can't remember. I didn't mind what went on around me so long as I was left in peace.)

It's not a cure, but it is a really useful management tool - even if I currently have no idea what my capabilities are and consequently am totally failing on the pacing front. Moments of 'LOOK I can have a conversation standing up! Isn't this amazing!!' followed by flat on the floor moments where words are not a viable prospect at all. But balance will come with time and experience.

The next few months will be trial and error, discovering whether can I wear it everyday without trashing my skin, without injuring too many joints while putting it on, and possibly hardest of all, learning where my limits are and what I need to do to manage my conditions as best as I can.

This will definitely have to include not sitting upright and relaxed for more than 30 minutes without doing something to get the blood moving (says me after 2 days of going 'whoop I'm alive', doing an hours work on the computer, then crashing for the rest of the day. I try to be sensible, but sometimes I end up learning the hard way!)

So it's no cure, but it is an exciting new tool which should improve my condition management and help me maximise my abilities.

And as I am now off all my POTS control butt cheeks are most pleased not to have an elephant sized needle attacking them every 3 weeks!

[Edited to add: this is also a result of 8 years of physiotherapy, pilates, adn working really hard on posture and joint control ;) ]