Living with Dysautonomia and EDS – Chapter 14 “My Last Flutter with Too Much Fun”

Another instalment from a day in my life of living with dysautonomia and EDS!

This week is an anniversary of sorts.  An anniversary that coincides with a famous horse race, The Melbourne Cup.

It marks the time I last skipped in front of the TV!

Here’s an recap from that memorable day in November 2015….

The return of the evil

OK big sigh. My old friend ‘adrenaline’ has been making quite a reappearance lately.

Whilst a regime of exercise daily for the last two months seems to have given me a lift and lured me towards a bit more activity (meetings, lunches etc) it’s become a little bit of my undoing.  Think I mentioned the ‘evil’ side of adrenaline before (oh and here too)….well mine has not been behaving at all well these last couple of weeks.

I’m now back in the space of the jitters,  chest flutters (actually that’s kind, it’s more like racing), sailing high blood pressure, knock out headaches and sheer bloody frustration.

I can’t even have exciting things happen because the adrenaline rushes are just too disabling.

Excitement these days is a no no. The #adrenaline rushes are just too disabling. Click To Tweet

Here’s my “fun” story

I had a little flutter on a rather large horse race the other day (100:1 odds) and won! What are the chances?  So excited I was (I never win anything) I attempted to skip in front of the TV!

Albeit momentarily because, then, I felt this rather odd sensation.  I literally felt it rise up my chest, hit my neck and then my head. Cue headache from hell, racing chest and sky high blood pressure.

I had to go to bed (and quit congratulating myself on my winnings).  Full on adrenaline attack.  Bloody hell.  What a complete upstart.

The fun police rocked up (again). I won and I lost all in one moment!!

Welcome to Ground Hog Day!

Ever get that feeling you take one step forward and several back?  Well that’s me with this condition.  So you’ll have to excuse my sarcastic and less than excited demeanour – I am feeling a little ‘over it’ today.

OK stop feeling sorry for yourself woman, how do we deal with setbacks….?   For me, it’s about peeling it back and starting again (she says with a big sigh) aka not letting it get the better of me (and I spent the next 3 years in some sort of Ground Hog day working that out).  Cancelling the forward meetings and social calendar, cutting back the intensity of exercise, putting a limit on what I think I can cope with and frankly just waiting it out.

Dealing with #setbacks is about peeling it back and starting again. Click To Tweet

Will this get fully better? I don’t know the answer to that question so there’s little point thinking about it.  Just go with what I can cope with today and make it so my adrenaline plays nice.

Small baby steps and remind myself of the positives and what I’ve achieved so far…..least the ‘on’ switch isn’t permanently on any more and my rather large, spontaneous panic like attacks seem to be a thing of the past (?).

I appear to be winning at some things (including horses).

Still dreaming about bears in the night but you can’t have everything can you?

What is clear is that the body takes a huge amount of time to heal.   I might be disappointed and frustrated in my progress but I am listening to my body and finally trying to take care of  it.  So that has to be a good thing right?  I will console myself with that today and sigh off……….


Fast forward to today

So that was November 2015.  Still sighing.  Not much has changed since then.  Actually that’s harsh.  I’ve learnt to live with it better.

The body has remained poised to “go off” at not very much.

Exercise proved futile. In fact, any kind of “speedster” stuff has to be compensated by a swift long lie down.

Fun, chit chat and excitement of the normal kind has been replaced with the “muted” variety.

Being busy is a complete no no.

Life has had to become very quietly lived.

And that was my last bet on a horse race.

Probably a good thing.