“The Goldilocks Plan” to living with dysautonomia and EDS.
Living with dysautonomia and EDS 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 and EDS. Continue reading Living with Dysautonomia and EDS – Chapter 6 “The Goldilocks Plan”
What living with dysautonomia and EDS feels like – “Me Wiring is Off”
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 Living with Dysautonomia and EDS – Chapter 5 “Me Wiring is Off”
What living with dysautonomia and EDS feels like – introducing…”Grog the Head”
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 Living with Dysautonomia and EDS – Chapter 4 “Grog the Head”
How to find more balance in your life – by “Meditating like a Mad Woman” of course!
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 Finding Balance in the Madness – Chapter 1 “Meditating like a Mad Woman”
My trials and tribulations of exercising with dysautonomia and EDS – “Bite Sized Cardio”
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 Exercising with Dysautonomia – Part 2 “Bite Sized Cardio”
What living with dysautonomia and EDS feels like – “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 Living with Dysautonomia and EDS – Chapter 3 “Up and Down Like a Yoyo”
What living with dysautonomia and EDS feels like – “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 Living with Dysautomonia and EDS – Chapter 2 “The Poo Truck”