Weather with You

Ah Melbourne, I love you but not your weather this past week. Five consecutive days over 40C (104F), followed by a dramatic barometric change, drop in temperature by about 20C, and increased humidity. What the hell, Melbourne? Heatwave records broken across both here and South Australia.

What does this do to a girl? It aint pretty my friends. It aint pretty.

This is how I started the week.

Ooo look at me with my Hydrolyte icypole. I've got this heat thing sorted.

This is how I it ended it....

 My name is..............?

Weather is a such a huge factor in how I feel. Heat and cold both affect me. And I have even less control on my body temperature than I did even a year or two ago. (For example, Mr Grumpy walked into our 44C bedroom yesterday to find me in my warmest dressing gown sitting on the bed. He took one look at me, I said "sudden temperature drop", and he kept on walking un-phased. I've clearly been weirdly ill for waaaaaay too long.) And humidity is the icing on a really crappy weather cake. 

I hate the drops as much as sudden rises. My body temperature drops at the oddest of times. And when it does I feel like I've been suddenly dipped in an icy river and have weird full body shakes/contortions/myoclonus. Take my temperature and it's dropped to 35.2-35.5C. Sometimes it happens with no discernible trigger. Other times stepping out into the cold will set off uncontrolled shivers and I can't stop my jaw from madly shaking and my teeth from chattering. It tends to leave me exhausted and sore, long after I manage to get my temperature back up.

But the heat. Especially prolonged heat, with little to no relief overnight, takes its toll. I was watching an ambulance paramedic on the news talking about the accumulative effect of day-after-day of extreme heat. And it's true. It adds up. 

There is only so much my body can take. And that tipping point was Wednesday night/Thursday morning. Heat induced vomiting. Cramping. Diarrhoea. Confusion. Feeling completely overwhelmed. Dehydration despite drinking litres of fluids. Tachycardia (well tachycardia for me and my slack heart). Arrhythmia. Oscillating blood pressure. Shakes. Weakness. Facial droop. Dry mouth. Headache. Overheating (38-39C). A complete and utter mess spiralling down. All without a drop of perspiration thanks to anhidrosis.

Even having IV Saline on Thursday (thank goodness that had already been planned) I still had to vomit in the loo at the hospital. I came home only a little less exhausted than I went in, though I was still happy to have that slight reprieve.

Friday a wipe off. 

Saturday a different level of unwell thanks to oppressive humidity. My muscles are uncoordinated and weak. My whole body aches and nausea is peaking. The air pressure leaves me feeling overwhelmed. Headaches that don't respond to meds. Trying to swallow simple food too complex for my exhausted body, and I spend 10 minutes drinking water to try and move the food that seems like it is stuck in my throat forever. Pre-syncope my constant companion. My skin texture changes. My complexion, sallow at best. My facial muscles useless, unresponsive blancmange. This is what unrelenting heat followed by humidity, does to my body

Even with fluids, airconditioning, ice packs or frozen Hydralyte icypoles, there comes a point where the heat simply gets too much to bear. 

Heat intolerance and poor thermoregulatory control are common symptoms of Dysautonomia. And some of the hardest ones to manage. They can be disabling at times and impact on all aspects of life. From my dental visits where I lie in the chair with icepacks and my dentist turns on the airconditioner, even in Winter, to being unable to bear the warmth of even light clothing after a shower, or needing to strip off after eating a hot meal. It impacts upon your ability to leave the house or socialise. It means you leave your house with multiple layers of clothing to try and accommodate whatever temperature your body throws at you. It also means your family are no longer surprised when you are wrapped up in blankets on a hot day or wearing t-shirt and shorts in the middle of Winter. If you're not careful a hot Summer day or a cold Winter days can be the catalyst for a full body melt down.
 

Weather has such power to influence how my body functions, or doesn't.

That single factor can make or break a day, before I even leave my bed. 

That single factor decides if I can step outside, make my breakfast, remember my meds, or even stand.

Living with Dysautonomia is all about managing symptoms and avoiding or minimising things that aggravate the condition. Sadly the weather is one factor that can have a huge impact on us, and one we can't control.

The week ahead is thankfully cooler. But we haven't yet hit our hottest months. But that's a problem for another day. Today the recovery from last week begins.

Cheers
Michelle

Don't forget to check out my Clicking my Heels for Dysautonomia fundraising forThe Greg Page Fund for Orthostatic Intolerance, and the Baker IDI. Nearly at $1,500 already!