How do you cope when your favourite season becomes one of the hardest to manage?
Never in a million years did part of me think that I would ever use the words surviving and summer in the same sentence. Summer is the time to live, to run out the door with a bag and a hat and see what the day has to offer. Summer is the time for beach days, barbeque nights, and new adventures. But this summer was different. I didn’t live, I simply survived.
On December 1st, the very first day of summer, I fainted while putting up the Christmas Tree, and every day since, I continued to experience dizziness, nausea, syncope [fainting], shakiness, fatigue, tachycardia, and postural hypotension ~ the heat of the Australian summer making a very obvious impact on my health. My favourite time of the year very quickly became the hardest time of year for me.
Small everyday tasks such as showering, cooking, and tidying up becoming challenges; seemingly impossible to do without feeling as if the blood has drained entirely from my body, without shaking and trembling, without losing hearing or vision, or without feeling like I’m imminently going to be sick or pass out completely. The only thing reducing any of these symptoms ~ lying down. Without any improvement, living became surviving; simply trying to get through each day. Doctors’ visits, blood tests, scans, trialling new medications, and doing everything I know to improve my blood pressure and stabilise my heart rate became my every day, is still my every day.
With the season of summer reaching its end, it is a reminder of how long this has gone on, three months, a whole season. It is scary and overwhelming to think about how little I have improved in all that time, stuck with the thoughts of all the things I should have, could have, and would have done. I look back on my summer and feel sadness to the time wasted to this illness, and I continue to hope that this is all just a really bad case of heat intolerance associated with Postural Orthostatic Tachycardia Syndrome [POTS] and with cooler weather will come a “healthier” me. But when I look back on my summer, I also feel gratitude and appreciation for the smallest of things that got me through ~ my saving graces.
Five | Cooling
Before this summer I never had air conditioning ~ I never had a need for it. Even on the hottest of days I would bathe in the sun, much like a lizard, anyone would have thought I was a cold-blooded creature. But this summer, as the days got hotter, I got sicker, my body failing in the heat. With my family making the executive decision to purchase a portable aircon for me, it was time to forget about the costs and focus on my health. And I am ever so grateful for it.
As days reached 40+ degrees Celsius, the aircon provided a much-needed relief from the oven that is my house. It was this simple change that allowed me to realise how greatly the heat affected me ~ despite having POTS since 2015, this was the first summer I was truly heat intolerant, needing to stay cool to avoid pre-syncope and syncope episodes.
Four | Tiredgirls
Last year I found the “chronic illness” community on Instagram, and stumbled across The Tiredgirl Society. Meeting so many beautiful people from around the world, who share similar experiences and can understand, like no one else, the impact of chronic illness on normal life. Through the summer this group supported me through the days where I felt like I was never going to get better, the days where I felt all alone, and the days where the small things were massive triumphs.
Three | Windows
Seemingly normal and mundane to most, my windows have been another saving grace for me. Providing me with natural light, a soothing view, and a fresh cool breeze offering relief on those warm summer nights.
At the end of another long difficult and hot day I look forward to opening my windows up, seeking relief from the sea breeze, listening to the birds play in the bushes, watching the bees seek the pollen from the flowers while the sun sets in the sky ~ bringing a sense of calm and happiness over me.
Two | Time
With my health putting life on the back burner, all I was left with was time. Time for rest. Time for me with me. Time.
Some days worse than others, my time was spent accordingly. But I remain appreciative of the time. The time I could put towards doing things that bring me joy, things that I would say I usually do not have the time for.
Taking care of myself and resting was, and still is a priority, however, this summer with the spare time I have had, I have managed to:
- write five blog posts (including this one and one more to come *wink wink*),
- finish three books and start a fourth,
- draw more, sending a few off as gifts at Christmas time, and
- catch up and re-watch some of my favourite television shows and movies.
It still may seem a small thing. But a small thing that has been a saving grace, nevertheless.
One | Family
Where do I even begin?
My family are absolutely my number one saving grace this summer. Near or far they have been there and continue to be there for me every single day. On the days I have cried, they have been there to cheer me up. On the days where I have fallen, they have been there to pick me up. On the days where I can’t stand or leave the house, they’ve been there to buy me groceries and cook me food. Even when they have already worked all day, or are in hospital themselves, they have continued to support me, care for me, and love me. And every small thing you have done for me has not gone unnoticed.
Thank you. I love you. Always.
So how do you cope when your favourite season becomes the hardest to manage? You learn to appreciate the small things that get you by. You endeavour to find the silver lining in even the darkest of clouds. You find your own saving graces and continue to survive until you can live again.