Living with Dysautonomia and EDS – Chapter 13 “My Top 10 Countdown”

“My top 10 countdown for living with dysautonomia and EDS”

It’s been a few years since things went awry with this body of mine.  I’ve now got myself to a much better place but it’s taken some effort to work out what’s worked and what hasn’t. So, I thought it was 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 EDS!

So here are the “hits” for your enjoyment…

 10. Shake Your Thang – Salt n Pepa

Salt, salt and, you guessed it, more salt. My fluid intake is about two litres a day but is now accompanied by rather large doses of salt – a teaspoon of salt dissolved in my water bottle and extra salt on my meals (anchovies for breakfast anyone?).  I’m no longer plagued with a constant feeling of thirst and it helps ensure my blood volume is at the right level. The salt water took a bit of getting used to but plain water now tastes, well, odd frankly.

There's a good reason for being an anchovy loving weirdo Click To Tweet

 9. Don’t Get me Wrong – The Pretenders

To help squish my blood up, I wear sports recovery compressions over abdominal shapewear. This was one of the very first things I did which helped tone down my adrenaline responses to low blood volume. I now wear my compressions daily. I might look like I’ve been to the gym but I assure you I haven’t – so don’t ask me that if you see me in my gear or I might yawn at you. I fess up. I’m a faker.

I don't DO the gym, got it? Click To Tweet

 8. Another One Bites the Dust – Queen

Hand in hand with no.9 is no.8. After a somewhat sustained but dismal effort, I stopped cardio exercise. It wasn’t helping. In fact, it made my adrenaline jitters so much worse. I now understand that peaking my adrenaline is to be avoided since it drops the backside out of my blood pressure and heart rate. It also aggravated A LOT of my joint issues A LOT. Did I say A LOT?  Let’s just pop that one in the too hard basket.

But I am supposed to be doing pilates. Tomorrow... Click To Tweet

 7. So You Win Again – Hot Chocolate

I try to eat smaller meals and to balance out the carb load. There is definitely an association with bloating from too many carbs so I try to limit them. I say try. I do have a weakness when it comes to  chocolate.  When you’ve had to cut out everything good in your life, sometimes chocolate is a mandatory requirement. Isn’t it?

The best gifts in life are chocolate ones....please Click To Tweet

 6. Red Red Wine – UB40

Talking of good things….Occasionally I have retried the odd tipple but the after effects just aren’t worth the indulgence. In fact it’s contrary to no. 10 (hydration) and no. 9 (blood vessel tone). So alcohol and I have officially parted company. Yes, for anyone that knows me, I’m serious.  Don’t shake your head in disbelief.  It is entirely possible that alcohol consumption has not helped my predicament so it’s adios to the vino, and the beer, and the… oh well let’s not think about what I’m missing anymore…!

Salt water is the new martini Click To Tweet

5. Sunny Afternoon – The Kinks

Contrary to popular belief, I’ve actually gotten better at taking it easy! The zipper zapper mad thing has finally come to a resting place. I prioritise rest so much more than I used to. From trying to ensure I get 8 hours sleep (not always possible) to resting during the day and taking an hour to get up in the morning. I ensure I maximise opportunities for my blood to be with my brain (see, I do care) and to not overcharge my body. This has helped even out the peaks and troughs of my blood pressure and has meant a much more settled body.  Amen to that.

Being a lazy bones = happy bod. Try it. Click To Tweet

 4. Turn the Beat Around – Gloria Estefan

I would not be without my meds! No siree. Beta blockers, midodrine and recently an SSRI to block some of my adrenaline/blood pressure triggers plus sleeping pills all help keep this body of mine balanced and operating in what I call the ‘middle zone’.  The tachycardia, chest pain, blood pressure fluctuations, fatigue and headaches are now a lot more under control.  They’re not gone but the body is certainly more manageable. The miracles of modern medicine eh!

Last night a beta blocker saved my life Click To Tweet

3. Hot Stuff (ed) – Donna Summer

Yep heat and moi = stuffed. This is a big one for me and it’s taken me 17 years to realise that a hot climate really doesn’t bode well with this body of mine. Probably wasn’t the best decision in the world to emigrate to Australia was it?

Without my hot springs encounter in late 2014, I would not have wised up to this fact and my symptoms probably would have been much more subtle in making themselves known. Who knows where life would have taken me? Those hot springs really were my sliding doors moment.

Where's Wally? Antartica? Or maybe Tasmania?? Click To Tweet

2. Money for Nothing – Dire Straits

This one has been sooo hard. My brain (and bank balance) loves work but the body does not! I’ve been like a yoyo with this over the last few years. I am now finally getting to a space where I (and others I work with) have accepted what I can and can’t do and work is now worked around what I can handle.

In some ways, being forced to do things differently has been a blessing. I’ve explored new things that I can do from home and the kids have become reacquainted with their mum (I am no longer MIA mum). These days, we live on much much less but I am much more present and I actually have time to think. Life is simpler and better. Whilst money for nothing doesn’t exist, I’m getting close to something like it.

Get yourselves off the money-go-round people Click To Tweet

 1. A Kind of Hush – Herman’s Hermits

At the top of the charts is the hush!

I socialise far less than I used to and I often joke that I will eventually become a hermit. So this hit at the top of the charts is entirely apt. Non stop talking just doesn’t bode well with adrenaline/baroreflex abnormalities and isn’t supportive of keeping my blood pressure even despite it being a passion of mine.  But a positive is there are now a few more full legged donkeys in the world.

Similarly with being upright too long.  I know that puts more pressure on my body to keep my blood up so I moderate all of it and take opportunities to invert (ie. lie down) and shut up regularly!

Silence really is golden but hard to fully come by in a house with two kids and a partially deaf hubby. Hmm.

Sssshhhh. Can't you see I'm resting with the donkeys? Click To Tweet

So there you have it my top ten countdown for living with dysautonomia and EDS (Ehlers Danlos Syndrome).

In a nutshell, diet, lifestyle and improving my physical environment (inside and out).

Hopefully these tips help others of you afflicted with this curious condition to get a handle on it and turn things around for yourself.

Or, at the very least, you might have identified with this girl of the 70s and 80s and her woeful song choices!