Tag Archives: Ehlers Danlos Syndrome

Stories about Ehlers Danlos Syndrome (Hypermobility Type)

The inaugural old nag post with **profanity warning**

Fuck.  It.  Here goes.

I’ve been sitting, pondering about officially launching this blog for months.  A contact of mine said “dude, press go, what have you got to lose?” The truth is very little.  I’ve been holding off going public with reams of diary entries I have written over the last 6 months worrying about how this will affect the work I’ve been doing and thinking by some miracle my condition will pass.  Maybe it still will.  I didn’t want to look like a fraud (you know I might roll over one day and be restored back to the manufacturer’s settings??) but realistically I’ve been fooling myself thinking, at this point, that I can resume  a “normal” working life.  Whatever that is anymore.  Dream on. My work has been suffering anyway.  In fact I’m having to completely rethink it.

I think I can safely say after all this time a new normal is required. Continue reading The inaugural old nag post with **profanity warning**

The poo truck

My wham bam health issues appeared in November 2014. However, looking back, before my ‘tsunami’ of symptoms hit, a slow trickle of odd symptoms had appeared.  I’d been under quite a bit of stress from a job for a period of 6 months and I had a few odd, isolated bodily symptoms occur (which I can now recognise as the early warning signs).  I had weird aches in my hands, I was thirstier than normal, I was wired and tired, I got the shakes when under pressure and I started getting weird nightmares on top of insomnia (Dennis the Menace flying spider kind of nightmares).  I then experienced the ‘oh god I feel shit I must be unfit’ after pilates (come on?) and I had my first proper almighty so-called panic attack (an ambulance job).  But many of these were simply explained away as stress related reactions.

Then I sealed my fate by visiting some hot springs for the day in late November 2014.  Continue reading The poo truck

Pushing through fatigue

I just watched a really informative video by Dr Alan Pocinki who specializes in treating patients with Ehlers Danlos Syndrome (link here). Whilst it is specific to EDS and people who have hypermobility the themes in here are very relevant to anyone who suffers from fatigue so read on… Continue reading Pushing through fatigue