Living with Dysautonomia and EDS – Chapter 11 “My Daily Specials”

Living with dysautonomia and EDS – “My Daily Specials of Dreams, Hangovers and Fatigue”

This is me. The dreamer. The hungover. The fatigued. Daily specials on my menu of life. Here’s a taste…

Every morning, to varying degrees depending on how busy my day was previously, I wake in a fog. A pea soup kind of fog. Feeling like I’ve been somewhere half the night.

In another mad dream. With people I don’t know, writing the story as I go. And they are vivid kind of dreams. I can recount them quite well upon waking. I could probably even fill a book or two with them except for the banging hangover that comes with them every morning.

Why the dreams and the hangovers?

Likely adrenaline. They are surely the most irritating aspects of my condition. Getting a truly good night’s sleep is so far from my reality.

Waking up rested, bright as a button these days is a dream in itself.

Add to that days which can easily become so full of social and busyness that you have a recipe for another bodily disaster – fatigue.

What fatigue feels like.

I don’t think people who experience normal kind of tired (the stuff which sleep normally resolves) really get what fatigue feels like.

For me, its an underlying perpetual form of tiredness, like continuous jetlag or a dragging sensation. The stuff that huge sighs are made of. The stuff that messes with how you think. Making you feel like you’re walking around and thinking in treacle (or pea soup!).

And when the fatigue is really bad, which can happen sometimes, the adrenaline panic waves come out in full force swiping at me at inopportune times. Like Darth Vader.

My daily solution.

I bravely put a smile on my face and force myself to try to ignore it. I basically buy more adrenaline to fill up the fatigue basket later.  Not a reliable strategy I know but it does put my mind in a place that helps me amplify the experiences of the nicer stuff (even if just for a moment).

I can look and act ‘normal’ – you know like ‘her’ over there. Just for a bit.

I can look and act 'normal' - you know like 'her' over there. Click To Tweet

Ooh the lure of normal.

Others, who don’t really know me, could look at me and think ‘yep, she’s normal’. I know they do. They don’t get the play acting and they don’t get what’s going on underneath for me (which frankly nor do I completely).

They don’t see ‘the heap’ collapse on the bed when she’s home. Trying to squeeze in a non dream filled snooze to replenish her tired and weary body.

They don’t see the nightly repercussions, the 4am wake up calls and hangovers from hell the next day.

They don’t see me like I do.

I’m still a bit of a faker really.

I fake normal. But I am learning and so are others around me. Because I’m calling it much more regularly these days. Shining a light on the things that impact me so others can appreciate more about what is going on for me.

Others are starting to call me on it too. And they are understanding my no’s a lot more these days.

Progress is being made in some corners of my life.

My little conundrum can’t be solved but with the right conditions it can be better.

4 thoughts on “Living with Dysautonomia and EDS – Chapter 11 “My Daily Specials””

  1. This is the best description of fatigue that I have read in a long time. I can totally identify with this, especially the faking normal bits. I am so guilty of doing this. Enjoyed reading this. Thank you so much for sharing. xo

  2. Thanks Valerie – my days really are complete juggling acts. It’s sometimes really surprising how little can impact this body so much.

  3. “I fake being normal” I can relate so much. I know what that is like. I’ve become almost too good at it because people around me will wonder if I’m really THAT sick and the truth is, yes, yes I am.

    Xo, Faith via

    PS I’m sharing this across social media.

  4. Thanks for your comment Faith – a big part of the faking for me is simply because I like to laugh, it might not help with my symptoms (in fact too much laughing is a big no no for me) but by god it helps my sanity. Trouble is, as you mention, it can give the perception there’s nothing wrong when there’s plenty. I guess that’s the trouble with invisible illness and the perceptions we navigate. Thanks for the shares x

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