Living with Dysautonomia and EDS – Chapter 7 “Dealing with the Invisible”

What it feels like living with dysautonomia and EDS – “Dealing with the Invisible”

Frustrated.  Angry.  Disappointed.  Bloody over it.

Woke up this morning not in the best mood (can you tell?).  Too many expletives to mention exited my mouth.  Husband has slunk off to a quieter place.  Though he did make me a cup of tea first.  All because of my invisible illness. 

I’ve been trying a new med which is supposed to help with my insomnia and headaches.  So far not so.  I inadvertently put it to the test and chucked a bit of stuff at myself yesterday.  Back and forth into town for a client meeting (fine), a new school visit for my daughter (surprisingly good) followed by a not so pleasant run in with someone over the sale of our money pit of a house (not so good).  I think you can say bod went through its fair share of ‘normal’ daily stuff yesterday but, when you think about it, really not my kind of ‘normal’ anymore.

I wasn’t really set up for success.

Trying to sleep the past few nights has been nothing short of ridicularse.  Yes, the ‘arse’ bit is purposeful.  I have the ‘arse’.  Whatever these drugs are doing is not helping.  I am simply revved at bedtime, tossing, turning and unable to switch off.  Seems kind of counter to a med that’s supposed to work for insomnia when I still have to take a sleeping pill (doh).

So last night we had the return of the creepy crawly bed time nightmares – and I say ‘we’ because the whole house heard me scream (it’s just embarrassing).  And this morning I wake with a clonker of a headache cum migraine.  I am sooo pissed off.  I have a workshop I am running for an hour later today which I was so looking forward to and now I’ll be doing it in one of my head-thumping states (grrr).

I am angry.

Angry at just jamming in too much stuff.  Angry at the not so good situation I put myself in front of yesterday.  Angry at these drugs for not helping my sleep or my headaches.  Angry now at my predicament today.

The hardest thing with this ‘thing’ is I can look, feel and sound completely normal.  I look extremely competent like I can cope with ‘normal’ but clearly my body can’t cope with the extremes that comes with that.  My adrenaline pushes me along far further than I should go, cooks up a right old brew and, invariably, busts one of its delightful moves the next day.

Some days having an invisible illness can be irritating as hell.

I’m largely getting good at moderating what I do but it’s really hard for others to understand how their actions can impact that and just completely change the type of day I have.  Especially with a health doo dah that is so difficult to explain!

So perhaps in some way this post is both a message to myself and others.

Just because you can’t see it doesn’t mean it doesn’t exist.

For me, I need to keep moderating my interactions and continuing to slow down.  Stop getting ahead of myself and putting myself in precarious situations.  I also probably need to ditch these new drugs because they are simply adding to my frustrations.

Just because you can't see it doesn't mean it doesn't exist. Click To Tweet

For certain others (and I include reminding myself of this) well, frankly, please understand that everyone has ‘shit’ they need to deal with and take a moment to be less self centred and kinder in the way you present yourself to the world.  It’s not a good look.

Rant over. Thank you for listening…

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