Tag Archives: Blood Pressure

Stories about blood pressure symptoms for those with dysautonomia or anyone else taking life too fast

My top 10 countdown for living with dysautonomia and EDS

Three years after things went awry with this body of mine, I’ve now got myself to a much better place.  It’s taken some effort to work out what’s worked and what hasn’t. So, I thought it was about time I took stock and wrote part II of my Goldilocks ‘just right’ plan in the form of my own top 10 countdown for living with dysautonomia and Ehlers Danlos Syndrome (Hypermobility Type)!

So here are the “hits” for your enjoyment…

Continue reading My top 10 countdown for living with dysautonomia and EDS

Why exercise with dysautonomia is hard

If you’re living with dysautonomia, you’ve probably been told to exercise to improve your predicament. However, it doesn’t always work out that way. Here’s my story of why exercise with dysautonomia is hard.

Previous Spesh set me on a routine of daily cardio to grow my blood volume and recondition me and my muscles back to health.  At least, that was the plan.

Here’s a bit of before and after of what has resulted: Continue reading Why exercise with dysautonomia is hard

Brittany Wattenbarger: Living well with chronic illness

One of the things I aim to do with this website is offer inspiration to others faced with illness in living their lives as best they can.

This is the first article in a series of feature posts called “Living Well with Chronic Illness” and I am extremely pleased to introduce Brittany Wattenbarger, of A Southern Celiac, as my first guest.  Drum roll please… Continue reading Brittany Wattenbarger: Living well with chronic illness

The rise and fall of the red card

A tale of attempting silence by non verbal cues in my house… (Anyone that knows my house will know where this is going…)

Talking and laughing, the things that we all take for granted, are the things that I can no longer do a great deal of. Which is a complete shit because, hey, who doesn’t like doing those things? It’s called fun, right?

Continue reading The rise and fall of the red card

My recovery plan for living with dysautonomia

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!

This last year has been about developing what I've now called my Goldilocks recovery plan. Click To Tweet

Here’s the list of my do’s and don’ts which hopefully should help others suffering from dysautonomia. Continue reading My recovery plan for living with dysautonomia

How I found out I had neurally mediated hypotension

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. Continue reading How I found out I had neurally mediated hypotension

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 Grog the head