Living with Dysautonomia and EDS – Chapter 8 “What it Means to be a Spoonie”

What it’s like living with dysautonomia and EDS – what it means to be a spoonie and manage your day according to spoons.  Note: nothing to do with spontaneous acts of spooning – sorry to disappoint! 🙂

Spoonies I’m in some strife and I need your help with my pacing strategies.

This is your call to action….. (Everyone else, strange ‘spoonie’ and ‘spoon’ references will become clearer….)

Life these last few weeks has been ridiculous.  This crazy, stupid, mad woman has been cramming just too much in.  My pacing strategies have gone completely out the window.  And for what? To try and earn some god damn money.  Damn it.

Part of my predicament is undoubtedly to do with the way I work.

I freelance so I have very little control over when the work comes in.  I can’t work a consistent part-time job because bod (and employers) would just not support that. I can’t just lie down willy nilly to let my blood flow through my pipes and keep myself oxygenated, can I?  It just wouldn’t be cool.  So, to do that, I largely work odd hours from home as my office base – on average between 8 and 10 hours a week (though I do confess to having lost count these last few weeks!).

Whilst freelancing has many benefits (lying down being just one of them), it also means unfortunately I’m on the feast and famine wheel of fortune and, these last few months, we’ve drawn a bit of a short straw.  Despite slicing the arse out of all things discretionary, things have not been particularly rosy.  She sighs.  So I’ve had to kick up the work search engine to stop the slide to that place we cannot go.  And in typical freelance style I’ve ended up overshooting the mark again.  Typical (again, just for effect).

I am permanently exhausted, my head hurts and I feel like I’m about to keel over!

It’s not like I don’t like work.  Mentally I do, I love it.  In some way, I think I am perhaps addicted to the adrenaline high I must get from it.  My hyperadrenergic tendencies kind of hurl me towards it or it gets sucked onto me like a huge magnet (and I find it hard to get it off!).  But, too much chit chat, too much upright and too much multi tasking all leads to one place and one place only…DOWN BABY!!

Mentally I end up getting so stimulated that it impacts my sleep.  I get the most prolific dreams every night – I literally ‘go to the movies’ (see my ‘Freddie Kruger’ poem attempt I wrote the other night, you’ll see what I mean).  Then I get headaches and/or fatigue ad infinitum.  And so the adrenaline rollercoaster continues.  Up, down, up, down with a down, down, into a long dark tunnel by afternoon when the ‘jet lag’ descends and, up up again, by night time when I’m back up riding high again unable to sleep.

My body is completely screwed.

I know intuitively I should not be here in this place I find myself and I know I am currently walking a dangerous line between earning a crust and short circuiting my dodgy heart/brain circuit board. That slippery slope.  Believe me, I know.  I just cannot get the flippin balance right and, this is where the Spoonies come in, spoon theory is NOT helping me work it out!!  (Non spoonies at this point will be seriously thinking I’ve lost the plot, stay with me…)

I know many of you find Christine Miserandino’s spoon theory helpful but I can find no consistency in my work and social activity that enables me to effectively ‘spoon’ and pace my day.  A work or a social event is certainly not just a 3 or 4 spoon event for me.  They are excitement, stress, noise and ergonomic hazard multipliers where no two events are ever the same.

(For non spoonies, the explanation is this: you have a theoretical number of spoons at the start of a day – 15 I think.  An activity counts between 1-4 spoons.  They’re like currency, the trick is not to use all of your daily spoons doing too much stuff, otherwise you’re in trouble.  I get in trouble everyday).  Anyway, as I was saying…

My day can go from using a manageable handful of spoons in the morning to buying out the entire IKEA spoon display in just a few short hours.

There are just too many variables in my work/social activities…. Am I in or out?  Am I sitting quietly typing or talking to someone?  Am I talking a bit or a lot?  Am I laughing? Is the place I’m in noisy or quiet?  Are the kids screaming at me?  Am I screaming at them?  Am I in an easy going team meeting or ‘on show’ at a client’s?  Am I required to work or socialise for 1, 2, 3 hours or longer?  Am I eating and talking at the same time? Am I spinning one plate or ten? OK leave the plates out of it, spoon talk is probably enough.

I can literally go from ok to full wipe out in half a day.  Wer wer wipe out.  And I keep scratching that vinyl track in the same spot everyday!

I can literally go from ok to full wipe out in half a day. Wer wer wipe out. Click To Tweet

And here’s where it gets even more annoying.  Just recently, I purposely limited the time spent at my twin step daughters’ 21st birthday to an hour and a half thinking it would help.  Apart from feeling like a complete loser when I left just as the party was cranking up,  I still bloody woke up with one of my non-alcoholic hangovers the next day!  Damned if I do.  Damned if I don’t.  I knew I should have stayed and just got drunk with everyone else.  What difference would it have made eh? Err actually, probably quite a lot.  I would not have been moving the next day and my head probably would have exploded.

I just cannot peg it and I find it so hard to manage!  Where is my body manual when I need it?  There have to be instructions somewhere?   Please?

So, as you can see, I cannot ‘spoon’ my days for toffee (aka I am a complete failure).

So if anyone out there has any magical gems for a solution for me, I’m all ears.  Help me find a balance on my scales of bodily justice.  How do you manage? Or am I just a special little treasure all alone on my own private island?

In the meantime, it’s time to cut right back and just stop (well as much as is financially possible) because that seems to be the only thing that stops this thing in its tracks.  Then I need to go find me a job which earns that passive income everyone dreams about.  Yooo hoo $$$, where are you???  She says from the top of her coconut tree.


6 thoughts on “Living with Dysautonomia and EDS – Chapter 8 “What it Means to be a Spoonie””

  1. I can identify! Pacing never seems to work for me either, I always feel like I’ve been drinking poison. Wish I could offer a solution. But, sometimes it does help to know you aren’t alone. If I could I would wish for you many spoons and a money tree. 😉

  2. I have the same problem with pacing. I try to do it as much as possible but I can duplicate a days worth of activity and I’ll feel ok one time and the next time I’m paying for it for days. I do find I use it as a guideline though.

  3. A bit the same too. Sitting here having done a lot today – feeling surprisingly ok when other times would be feeling rubbish right now. It’ll probably clobber me in the morning just to remind me it’s still there!

  4. Pacing is very difficult so please don’t be too hard on yourself. You are not a failure, you are doing you best despite the challenges you face with your health. It’s tough because you need the money and that tips the balance in the wrong direction. I wish I could offer more support and advice but please know you are not alone in your struggle <3


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