We are on holidays- and the kids were getting incredibly restless at home this morning. I knew it was going to be a really hot day.
The heat in Bali is steamy. Like a hot steamy sauna.
If you know, you know.
It was 32 degrees but it felt WAY hotter.
I decided to take them to an indoor kids play centre, it has a cafe attached to it and my plan was to stay there and work. We got there and I was told that my big boy (who's 9) was too big/tall/old to play at the centre. Noooo! This was the only decent place with aircon that I could go with the kids.
I organised a car to pick us up and take us to another kid friendly cafe. I started to feel really off as we were waiting out in the sun, getting the kids in and out, carrying my baby etc.. I get quite symptomatic very quickly as my nervous system starts to go out of whack, the main symptoms I get immediately are:
Nauseous
Racing heart
Light headed
Ringing in my ears
Weak
Shaky limbs
Tingling
We got to the second cafe and I set us up under fans, but it was still just SO hot. The kids were fighting. I got us cold coconuts to drink, and cups of ice. I kid you not, the ice melted within minutes. The kids continued to fight and bicker.
My baby sat there playing with and eating ice but he wouldn't leave my lap. I was still feeling wonky and his body heat was making me feel worse.
In an attempt to better my symptoms, I was drinking lots of coconut water pretty fast, but this made me feel even more nauseous.
My 3yo then caused a scene with other kids as he was fighting over toys with them, so I had to try and diffuse that situation.
The moving around, bending over, carrying kids, emotional intensity of fighting kids etc... tipped me over the edge.
When I feel this way the best thing for me to do is to get cool, and lay down with elevated legs,
NOT,
Break up fighting kids, carry a squirmy baby, sit in intense humidity and heat.
There was nothing I could do at the time to offset the symptoms that the intense heat and movement brought on.
So I decided it was time to go.
When I decide it's time to go, I need to leave ASAP or else I will be at the point soon where I literally won't be able to tend to the kids at all.
I ordered a car, packed up, paid for our coconuts and the whole way home I was dizzy, experiencing massive adrenaline dumps, shakey and dry reaching in the car.
My body clearly had enough.
I contemplated NOT sharing this photo
BUT let's get very real, and raw.
I am here to keep things real when it comes to sharing around about chronic illness.
So here I was, after vomiting, feeling FULL ON POTSy, in the bathroom of the villa.
Kids buckets, bath toys, behind... straight after this episode I had my very cranky, very hot baby wanting breastmilk, gosh it's hard being a mom with a chronic illness!
I got back to the villa...
Made it to the bathroom and projectile spewed.
I sat on the floor, did some breathing exercises, and asked for help- to get some electrolytes made up for me. Hydralyte is my little rescue remedy for times like this. I know it is coloured but flavours really make a difference when I'm sick like this.
Thankfully, after blasting the aircon and sitting still, I started to slowly feel better and was able to keep fluids down.
I was contemplating going to the hospital for IV fluids because oral hydration just doesn't feel anywhere near as good during times like these. If you have POTS, you'll know what I mean! You're often urinating excessively, or it's just hard to get the intake that you need because the high fluid intake makes you nauseous.
This is why patients with dysautonomia are often prescribed fludrocortisone, a steroid medication which mimics our hormone aldosterone, resulting in increased salt and fluid retention to help boost our blood volume and blood pressure.
This doesn't happen often but it's very reminiscent of what things used to be like for me.
I have to admit, it's a mental battle NOT to get thrown into panic mode when these things happen because they trigger thoughts like-
'I'm relapsing',
'This is going to be my new normal again',
'I am going downhill'.
You really do need to take a stance in your head, draw a line in the sand and
DECIDE NOT TO CATASTROPHIZE.
Decide just to deal with what's in front of you RIGHT NOW.
It's too easy to spiral down an abyss of negative thinking. It's hard to stop it from happening. Especially if your conditions have thrown you curve balls on repeat.
Yesterday acts as a reminder that although I live a very full and busy life, these things do STILL happen to me.
It's been a LONG time since I have experienced something like this though. I have a much larger threshold for life and activities now. BUT I still get to the point where triggers get me to a tipping point and my dysautonomia symptoms hit hard.
So there you have it, my worse day with dysautonomia symptoms in a while.
How's this for timing though?!
Just as my POTS & DYSAUTONOMIA WELLNESS INTENSIVE is now ready to go... I get a BIG OLD reality check of life with POTS!
WHAM- IN MY FACE!
Although I'm no longer DEEP IN THE TRENCHES like some of you are, my experience of the condition (like this one I had yesterday) can make me say...
I TRULY GET THE CHRONIC ILLNESS JOURNEY
I TRULY GET THAT HEALING IS NOT LINEAR
I GET IT
I shared with you last week that 10 years ago I wish I had someone who could help me with my symptoms, someone who TRULY GETS IT...
BUT THERE WAS NOBODY.
This is WHY, to kick off 2024, I'm offering you the expertise of a naturopath with not only scientific and medical knowledge about dysautonomia but also personal experiences with it.
I'm simply offering you the chance to access intimate support as part of my POTS & DYSAUTONOMIA WELLNESS INTENSIVE, which I believe is a crucial aspect of the healing process.
Get in touch with me for a chat or message me if you have any questions!
Lots of love,
Kimberly