Living with dysautonomia has been a massive rollercoaster.
The downs have been many but I wouldn’t have made it through the last two years without the ups.
The ups are simply those gorgeous people around me who have helped keep me sane and to feel cared for. Numero uno, my husband (who does just about everything there is to do around here), then there are my children (for forever giving me something to laugh about and for just loving their mum), my family (for being there during the tough times and helping me in whatever way I needed it) and, finally, my friends (the rock stars who have stuck by me and not put me in the ‘too hard’ basket).
This last year has also been about developing what I’ve now called my Goldilocks recovery plan. So named because quite simply it’s been about finding out what’s ‘just right’ for me. There has been much trial and error!
Here’s the list of my do’s and don’ts which hopefully should help others suffering from dysautonomia. Continue reading My “Goldilocks” recovery plan for living with dysautonomia
One of things I’ve been forced to do with this thing I have is slow down.
A hard ask for someone who has spent all her life on the go, applying herself with gusto to just about anything and everything.
Unbeknowns to me I had literally been living my life on adrenaline – I loved being busy, always been like it, never knew anything different, until now.
When things went wrong 18 months ago, it felt like a malfunction, like the machine went wrong or like the accelerator got left in the on position. Well yesterday I got validation this is indeed correct. It’s called neurally mediated hypotension. Da dah! Continue reading How I found out I had neurally mediated hypotension
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!
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
Yup you guessed it, another adrenaline attack. God it’s a pain in the neck. My meds were changed 3 weeks ago because of adrenaline issues, I had reduced my meetings and the intensity of my exercise program and was doing really well.
Then I changed something. Moved my usual morning exercise to the evening last night, evidently when the impact of my glory wonder drugs were at their lowest, and had a sleep from hell. Continue reading Supercharged out of my head