Heat

[Image: I'm slumped over resting against the roller door and bracing against the white wall. My hand is extended holding my walking stick. I am wearing a long tan skirt, white t-shirt and green jewellery. I am half in shade, half hot sun. You can't see my face for my red hair which has fallen forward.]



I can hear more than feel the breeze coming through the open door. Beyond the dusty fly wire the leaves of the trees rustle, disturbed by the ebb and flow of small invisible waves. The security door is doing it's job keeping out not just burglars and miscreants, but the breeze that sends the white roses bobbing outside the loungeroom window.

The dull whirr of the air conditioner is all noise no substance. Evaporative cooling, cheap to install and useless when there's even a touch of humidity in the air. A loose print bangs softly against the book shelf and the waist high fronds of the Bangalow palm in the entryway shudder. Freyja lies listless on the floor. Her discontent clear in growled mutterings and halfhearted attempts at movement. The heat stubbornly maintains its hold on the house.

Not to say outside is that much of an improvement. Clear blue skies look straight out of a travel advertisement. Photogenic grey-green gums screaming Australia to an overseas audience. You can feel the breeze, but a moment in the sun is to feel an oppressive weight upon my whole body.

The heat is here and my world shrinks.

A body that cannot cope with heat is a body not designed for the Australian climate. I hear the politicians argue about climate change in terms of economies, in terms of fossil fuels, in pontific terms that only they seem to truly believe. But never the human cost. Never what it will mean to those of us whose bodies are already struggling in the heat of today, let alone the heat predicted in 50 years time. Whose worlds collapse in upon themselves each time the mercury rises.

Heat intolerance is isolation. 

It is claustrophobic. 

Yesterday I dressed to go up the street only to realise that the time required to do all my and my son's errands would far exceed my ability to function in the heat. Not that he wouldn't push me in my old wheelchair. Not that some of the shops aren't airconditioned. But the drain of the heat. From the shuffle from the house to the car. The heat in the mobile greenhouse that serves as transport. The move from car to shop. In and out. Over and over. Each minute in the heat sapping strength. Not just from that day but the subsequent day and the day after that. The heat takes out credit for all the days after. And it never repays.

Heat

It holds me down. It suffocates. It seeps into all my pores and weaves it's way through bone and flesh. Stealing the strength and the functioning. I move through slow setting concrete. Dragging my limbs, my lungs, my mind. It's harder to think. It's harder to interact. My focus sharpens and wavers. I end up stretched too far from the smallest effort. I react like an injured animal when spoken to. Teeth bared, sharp words spit as the remnants of my reserves slip from flaccid fingers. The tendrils of heat reach deep until an amorphous agitation is all I can feel. Brain and body no longer able to find a path out.

From my lowered vantage point on the lounge, a small side window perfectly frames a patch of blue sky and swaying gums. More appealing than the prosaic view I have upon standing where the same window affords a view of red bricks that form the back of our garage and a grey paling fence, but none the less isolating. Spring and Summer days may be beautiful but they mean chest pain and weakness, greying vision and shaking hands. They mean existing under ineffectual ceiling vents, devouring Hydralyte icypoles and the mind numbing, only slightly cooler, four walls that allow for some semblance of functioning. It means peaking out windows for a hint of the world. Short forays into the backyard to check on the chickens and back to the darkened house to listen to the dull rattle of loose prints and breeze through tree leaves. It means a ruthless dissection of time and reserves. Logistical analyses and bitter disappointment.

I can go here. But not there. Not two the same day. Not two consecutive days. Is it evening or day? How far? How long? How much? It always comes back to the cost.

18 to 22C the magic span of time where I function these days. Above or below I am a mess. And now we are set for months of above. Months of missed events and missed opportunities. Regrets and apologies.

I feel the weight in my bones and my heart. My sluggish mind plods along unable to find solutions.

It's 3pm and I am still in my pjs. Showering and dressing no where in sight. The temperature hovers the high 20s and I melt further into the brown leather. I'm supposed to be at an event at 5:30. It's a beautiful Spring day. Not a cloud in sight. A perfect beach day. An in the garden day. And a punishing day if your body is no longer capable of compensating for even a small rise in the ambient temperature.

I hardly sweat now. Even on the 40C+ days. A new medication I started earlier in the year means I now have at least a handful of odd patches where the nerves put in a half-hearted effort, but not nearly enough to cool me down. I feel like my chickens on the back door step, puffed out and puffing. Beaks agape. I chomp though electrolyte icepoles as they chomp their way through the fish gut iceblocks I just put out for them. Only to slump down again to await the evening drop.

The heat is here to stay and I will get through it. Just like the last 11 years. I'll step out into the world in short deliberate bursts and hopefully ED avoiding outings. I'll gaze out the open windows and listen to bird song through dusty flywire, while icepacks slowly melt on my neck. My world will be smaller and heavier. The burden for stepping outside greater. But I'll sip a G&T under my red umbrella in my back yard. I'll listen to the clink of the ice cubes on glass and feel the condensations drip down my wrist. I'll smell the mandarin peel as the oil slowly infuses the clear liquid. Chickens will be coerced into long cuddles and I'll pick cherry tomatoes off the vines in the garden beds. I'll lie on pillows and watch fairy floss clouds disappear as they pass over the edge of the red material above my head.

For a while my world will be small and my connections tenuous. I'll exist until the leaves start to brown and Autumn announces it's arrival in cooling temperatures and fire-coloured leaves collecting on my doorstep. And the reawakening will be celebrated.

Michelle

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!

Ennui. (Because it's sounds classier than 'Ugh').

(source)

When I was working, I'd watch the old ladies with dementia plucking aimlessly at their blankets with small scowls on their faces. Fragile fingers pulling threads from their blankets and the hems of their sleeves. Pulling on the various items around them, they'd spend their days making small noises of discomfort or discontent. They'd be fractious when I went in to say hello or when the nursing staff would try to check their IVs or take their vitals. By virtue of their advancing dementia they were unable to communicate what was wrong, yet all around them were left in no doubt of their displeasure. The advanced nature of their impairment meant that even should they still be able to vocalise their fractured thoughts, they would still be unable to identify the subject of their agitation beyond a vague feeling of restlessness. As I sit here typing I understand them only too well. Just call me Beryl and pass me a boiled lolly. Because this is me today, in all my discontented glory.

Summer has been exhausting this year. More humidity than usual, combined with day after-day of soul sapping 30+C and a broken AC, does not a Dysautonomia-friendly environment make. My body is beyond exhausted and truth be told, I can't exactly pinpoint what is making me feel so out of sorts at this point.

I know the physiological explanations, the dilating blood vessels, the tendency towards rapid dehydration, the effects of barometric changes. I know about heat intolerance and how my anhidrosis contributes to my inability to cool down. But this general malaise is not clearly explained by the realms of science. My fatigue has fatigue at this point and my ability to deal, is nearly non-existent.

I grew up in an area of country Victoria that had Summer's filled with 40+C days. I lived in the top of Australia, smack bang in the tropics, for 7 years, where humidity was part and parcel of my everyday existence and Winter days a lovely 28C. But now, since Bob came into my life, I simply can't cope with the smallest increase in heat.

It gets to the point where there are so many competing sources of feeling unwell that you can't pick where to start, or what to do. It's like some omnipresent fog of malaise where all the various aspects of illness coalesce into one giant super-storm of feeling foul.

I couldn't tell you what is wrong today with any true clarity. I am at the point where it's a case of do I want to throw up, pass out, fall over, have my head explode to finally relieve the building pressure? Do I go sit on the loo, lie on the tiles, drink yet another litre of water, camp out in the fridge? Is it my building migraine or my low bp which is worse today? Or my bradycardia? Or the pain radiating up my legs? Or maybe it's Jeff, my stenosed jugular, who seems intent on sending excruciating pain up my neck and behind my ear? Or perhaps my lower back which I seem to have tweaked yet again as I tossed and turned in the heat of last night? What to pick and where to start? Some days I wish I could just do a reverse hibernation and sleep through the worst of Summer to awake in the more temperate days of Autumn.

The accompanying overwhelming physical weakness makes me want to pick aimlessly at the cushions of the couch and make incomprehensible mumbles of discontent like my old patients. I could fit right in, right about now. A bag of barley sugars, a crocheted blanket and a tube of Ben-Gay, and I'm there.

I am over Summer. I am over the unrelenting heat. The constant oppressive-pressure of the Summer storms. I have always been an Autumn girl and now I am even more so.

Come on Autumn weather and be-gone foul Summer. I'd really like to feel semi-human again sometime this year.

Cheers
Michelle

I've spoken a lot about Heat Intolerance here on the blog but this probably explains my experience best Hot blooded, plus it has a shout out to 80's rockers Foreigner, who can you go wrong with that?

Time like this, Henri the cat says it all.

Sunshine On My Shoulder Does Not Make Me Happy.

Well hello once again Spring, I see you're back from your short hiatus.  I did truly appreciate that on your days off you chose Winter as your locum.  Should you wish to go away again I would highly recommend getting Winter back to cover your absence.  He gave it his all, and even put on a little Winter Wonderland show for us, complete with snow.  I will have to admit I didn't miss you whilst you were on holidays.  I may have even had a little dance, complete with jazz hands, the first day you were away.  But now you're back, and it's ops normal.

The birds are singing.

The bees are buzzing.

The possums are fornicating like there is no tomorrow.

The blowflies (the traditional heralds of the Australian Spring) are flying drunkenly around.  Lulling me to sleep with the rhythmic pounding of their heads against the window panes.

The plants are growing.

The weeds are multiplying.

Pasty bodies, complete with muffin tops lovingly cultivated over the Winter, abound in the surrounding hills.

I'm KOed in bed.  A vomit bucket my only companion.  Taking pictures of my feet.

(Hello feet.  Hello candy striped pajamas. 

Hello dust and messy bedroom obscured by bad focus.)

My bp is yet to decide if it's up or it's down.  For a while there I thought it was heading South chasing those blessed Antarctic winds, but now it seems its heading North at a great rate of knots.  Oh wait. No. South it is. No North?  No South? North?  South? 


Given that Melbourne is famous for it's 'four seasons in one day', I'm hoping for a bumper snow season to hit about 5pm, to replace the current wilt-worthy 29C.
(84-85F).

I did think it may be time to break out a DeLorean and go back to last weeks more pleasant climes.   I did also find out that other people (men) do not think it's funny when I asked a reader who lives near the DeLorean factory if the flux capacitor came as standard or was an optional extra (Note she found it funny.  Men!  And that includes you Mr Grumpy, I can also hear your eye roll from here).  Women clearly have a much better sense of humour.

I may or may not be going a little delirious from the heat/boredom/hypotension/nausea/.......

(Love my little Japanese fan. 

I'm pretty sure I'm know as the weird woman with the fan in my local area).

Not that I look like a nutter at all.

It's just that (as was pointed out by she who is the Queen of all things lady parts related, purveyor of topics requiring the liberal application of mental bleach, unicorn love, glitter and single handedly responsible for the resurgence in popularity of ukuleles, Elly Lou, over at BugginWord) I am in desperate need of a 'mental margarita'.

Off now to search for my mental pitcher, because one mental margarita may not be enough to get through today.

The Hot, Damn Hot, Michelle.

Frontier Psychiatrist, The Avalanches.

Hot Blooded

Well, I'm hot blooded, check it and see
I got a fever of a hundred and three

(Hmmm I think I'm beginning to show my age with my song choices, but you've gotta love a bit of the old Foreigner).

Come on baby, do you do more than dance?
I'm hot blooded, I'm hot blooded.

Sorry got a bit carried away. This blog is not actually a tribute to the magical era of mullet rock but about the joy that is Heat Intolerance. (Though the more I think about it I may have to write a blog about my love of mullet rock just to get it out of my system).

Heat intolerance. How do you capture the essence of heat intolerance in writing? An overwhelming, all encompassing, claustrophobic, suffocating, feeling like you're about to explode from the boiling heat within your body. It works like this: hot day or hot room leads to body rapidly overheating, massive blood pooling, dehydration, blood pressure drops, body quickly cascades into meltdown. Speaking, thinking, moving, standing become akin to finding peace in the middle east. FUN!

Heat Intolerance is one of the many exciting symptoms of Bob, and it is the bane of my existence. I am permanently hot, which of course my husband has always known,(Heidi Klum delusion rears it's gorgeous head again. Stop laughing David!). Since Bob came to stay I can't really recall the last time I was truly cold. Even when it snowed I was in my thongs (the shoes not the underwear, I'm weird but not that weird) and t-shirt. I did succumb to trackie dacks but that was my only acknowledgement that the temperature had dropped below zero.

Nine times out of ten this Winter I've had the air-conditioner on in the car whilst driving. I often forget its on and it's not until I notice my passengers turning slowly blue next to me that I think perhaps I should turn it off. I apologise to everyone for creating a polar landscape in the car. A special shout out goes to my in-laws from the tropical north who tried valiantly to hide their discomfort in my icicle lined car by directing all the vents in my direction. Thanks mum and dad-in-law, it was much appreciated.

I'm always getting stares and comments about my lack of apparel. Hmmm..... on reflection I realise that sounds rather wrong. Perhaps I should explain. I am not a nudist or stripper/lady of the night (although I do quite like to belt out Roxanne by The Police). I just can't stand to wear much beyond t-shirt and shorts any more. By now you'd think people would realise it's just me, but alas this is not the case. I live in a small community. I shop at the same stores every week, I go to the same post office and chemist, the same charcoal chicken shop and petrol station. Yet each week it's the same old routine: question "Aren't you cold?", answer "No". Question, "You must be cold (chuckle, chuckle)", answer "No". It always makes me think of our dogs. Being great danes it's always the highly original "Is that a horse?" or "You could put a saddle on that". Oh ha, ha de ha ha ha, comic genius. Just one day I'd like to respond with "No you moron. I'm not cold. Just like I wasn't cold last week or the week before, or the week before that, or any other week that you've asked. I have a neurocardiogenic disorder. It craps on all areas of my life. Thank you for reminding me yet again that I am a freak", just to see how they respond. But I wont. I'll continue to grit my teeth and just suck it up. My favourite comment would have to be "You make me feel cold every time I look at you". Take that as you will. Even my Dad, bless his heart, cannot cope with my lack of jumpers in Winter and constantly tells me to put a coat on. Maybe it's just the remnants of the paternal gene kicking in again, though I did think there was statute of limitations on that. At least he has never mentioned that old adage about clean underwear because that would just be awkward.

I hardly sweat now. This does have it's benefits, no unsightly sweat marks when I lift my arms up for instance, but it also means I find it hard to cool down. Once I'm hot that's it. Can't wait for menopause! A shower can be almost claustrophobic due to the heat and I often need to have a little nanna nap on the cool tiles for a while to recover. Very elegant, especially if I shove my legs up the wall as well. Bad visual I know. So sorry, think happy thoughts, think happy thoughts. Though I do seem to remember some celebrity (scarily I think it may have been the rather bizarre though very talented, Miss Liza Minelli) commenting about all your wrinkles disappearing when you lie down. Gotta find that silver lining, though the silver is a bit tarnished coming from old Liza.

Summers here in Australia are hot,damn hot, 40+ degrees C. When I'm already wilting at 20 degrees C, these kind of temperatures mean I feel like I'm living in the bowels of hell for a minimum of three months of the year. I grew up in the Mallee where temperatures vary from -4 degrees C in Winter to 45+ in Summer (Hit 50 degrees one year, now that's liquify the bitumen on the road type of hot. Thank you Mr Safeway's man for not caring as Mum and I sat for hours in your air-conditioned heaven that day). The heat never used to faze me but now I could never even consider going back there again. My gorgeous husband installed ducted air-conditioning in our home last year and for that I will be forever grateful. Prior to the air-conditioning I was restricted to one room downstairs which was slightly cooler and had tiles to lie on. Now I can move around the house like a normal person rather than feeling like a shut in, surrounded by my boxes of crap in the rumpus/junk room. All I needed were bottles of urine, Howard Hughes style, and a manifesto to complete the transformation. Crisis averted. Thank you honey!

Whilst I am saving a fortune on jumpers and jackets being continually hot does have a downside. Even as I sleep I am pestered by my crappy internal thermostat. Currently I sleep on top of the covers whilst my husband sleeps under the doona with the electric blanket on. Romantic isn't it? Of course my husband being the caring and devoted guy that he is has suggested on numerous occasions that I would be much more comfortable sans clothing. He is always caring about my well being!

If only I could be cold just once, even for a couple of hours. Isn't variety the spice of life? I even have another Foreigner song set aside just for the occasion.

You're as cold as ice, cold as ice, I know, yes I know
You're as cold as ice, cold as ice, I know, oh yes I know
You're as cold as ice, cold as ice, I know, oh yes I know
You're as cold as ice...

A girl can dream can't she?

Well if that's not going to happen, I'll crank up the air-conditioner, put the ice pack around my neck, get the cassettes out, put on my acid wash jeans and reminisce about all those Blue Light disco's I attended in the 80's.

Rock on!!
Michelle:)