Living with Dysautonomia and EDS – Chapter 6 “The Goldilocks Plan”

“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!

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 and EDS.

First of all, I stopped pretty much everything and then went from there.

Trying to do it the other way, chipping away at adjusting my old life was futile.  My ‘just right’ entailed almost a complete standstill and a new design.  I said ‘goodbye’ to stuff.  Mentally that was my turning point.

Secondly, I’ve learnt there are aspects of my physical environment that just don’t suit me…

Power walking sends me into a spin. I don’t do it.  Running in fact is hugely repulsive for similar reasons – plus the joint issues that come with it mean I really can’t attempt it.  Excuse me creaking gate coming through!  The bike I managed but even that proved not to be conducive to recovery for me.  Pilates – well, now we’re talking!

Avoid heat like the plague (saunas, baths, hot showers, hot weather, hot springs – big, bad idea).  Hot weather seems to make all my connective tissue much softer and I end up with joints in my feet and hands that feel they’re about to dislocate.  Heat also causes my heart/brain wiring to backfire.  No go.  Ever again.

Avoid too much socialising.  I bloody hate this one.  I have had to accept that too much chitter chatter and excitement does my blood pressure and adrenaline levels no good whatsoever especially when in combo with sitting or standing. If it’s a hot room too, well, game over!  So if I want to avoid the racing chest, feeling like a thunderbird puppet and a migraine with fatigue the following day then I have to pace myself.  Similarly, with work stuff and too much busy.  I need spacers in between everything!

I wear sport compression tights everyday to help keep my blood up and I wear a pair of really supportive runners to protect my feet, knee and si joints.  Yes, I might look like I’ve been to the gym, I am actually the biggest faker out!

I have finally thrown out my heels (boo) which sat in my wardrobe unworn for 18 months.  They put too much strain on my joints.  Ring splints have been a fabulous discovery for getting the use back of my fingers.

I do not shop, cook or stand around anywhere particularly long.  I subcontract most of that out to my gorgeous hubby.  Instead, I lounge about (as he says)!

Massages and meditation have to be limited to very short stints and ideally sitting up so I don’t relax too much.  Too much of a good thing is simply too much of a bad thing for me.

Eating large meals or having more than a 4 hour gap between meals is too much.   Smaller and lower carb meals every 3 hours are just right.

I’ve also got used to a daily helping of anchovies and salted water.  I don’t need to overload the fluids but just salt everything up.  It’s surprising how much better everything tastes completely loaded with salt!

So these are the main things I’ve done to set my body up for success and hopefully it helps others of you living with dysautonomia.

Some days despite it looking ‘just right’ it just doesn’t end up that way – but that’s just the unpredictable nature of this thing.

Where I’ve got to is about right for now.  It doesn’t solve everything but it’s the best it’s gonna be.   And, for once in a long time, I’m feeling pretty ok with that.