A friend of mine who made a daily appearance for 6 months, stopped for 2 months and has now come back again is Grog, as I have now named him (aka bear with a sore head). When he’s in full swing he’s like the hangover (with full on banging migraines) that won’t go away and, over the last 12 months, has become a pretty consistent member of my crew. It seems it’s all part of the delightful bag of tricks this weird condition brings. Continue reading Grog the head
If you had asked me two years ago what I thought about meditation, you would have got a scoff, a sniff and even perhaps an eyeball roll.
I had had some experience of trying it before but I often came out wondering what visualising, body scanning and breathing actually did for me (other than the obvious!!).
What I hadn’t appreciated was the calm I often felt during and after doing it. Me thinks now my head was probably just buzzing a bit much for me to see the wood for the trees!! Continue reading Meditating like a mad woman!
After ditching cardio for 3 weeks to try to allow this body to calm down (with mixed and not very successful results I have to say), I resolved to do SOMETHING. After all the pain my bloody leg muscles went through in Sept and Oct when I restarted exercise I can’t put myself in a position where I have to go through that again. Continue reading Bite sized cardio
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**
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
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
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