All posts by Jayne

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**

Quote of the day

“I may not know where I’m going, but I’ll be damned if I’m going back where I’ve been”

Source unknown

The perpetual cyclist

What is it with tourists?

As I was cycling along today (which I am meant to do everyday – hmm subject of another post) the inevitable happened.  A nice looking couple, obviously from my home country England, judging by the accents, decided to ask me for directions to the beach.  Me – who obviously just looks like I’m out for a morning meander on my cruiser bike rather than the huffing, puffing lard arse that I was feeling.   Continue reading The perpetual cyclist

Up and down like a yoyo

After 4 months on Florinef we decided to part company.  The last month has been too hard – too many headaches, too much fatigue and a blood pressure that was a little high for Spesh’s liking.  So I’m now week two, another two to go before we possibly try Midodrine, and it’s turning out to be a bloody nightmare.  Mad swings from high to low blood pressure giving me all sorts of grief.  Within one day last week I was fluctuating between 85/65 and 150/110. Continue reading Up and down like a yoyo

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

Quote of the day

Courage does not always roar, sometimes it’s the quiet voice at the end of the day that says “I will try again tomorrow”

Mary Anne Radmacher

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