Sensitive Canberra: Your guide to chronic illness inclusive dates, events and travel
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It’s warming up and the festive season is here, but for spoonies, events, dates, get-togethers, festivals and occasions can feel like a lot.
From the extra energy, time, finances, logistics, communication and other mental load needed to navigate busier times, to the FOMO felt when a symptom flare means staying home, it can be a draining time of year.
So, let’s explore ways to make the most of time with loved ones, while focusing on pacing energy and looking after your health.
Communication
Similar to the last article on gifts, the starting point is communication, such as calling or emailing a few weeks before events. If you are the person with illness, a loved one, an event organiser or venue, clarifying specific needs, wishes and adaptations can put everyone’s mind at ease.
My top tip is to have a simple summary of your condition and needs, and if possible, a letter of diagnosis from your medical team, ready to send with RSVPs. It might contain dietary requirements with simple meal and snack options, physical accessibility, sensory accessibility such as temperature, sound and light, access to fresh air, or options for comfortable seating during an event so you can be part of everything, while managing fatigue.
Sharing your list with family and friends is the perfect way to avoid answering dozens of questions leading up to occasions. A Google or DropBox document is great as you can update it as your condition and needs change, but the link remains the same.
Communication is key as we go into this busy time of year, not just with chronic illness. Let’s all give each other the gift of swapping people pleasing and over doing it, for special dates, low-key, low-pressure events and truly connecting.
Go bag
My family is super organised, and we always have our own go bags – a bag that stays packed with essentials to make outings easier and more comfortable. Alternatively, a lot of items can live in the car along with the Esky and folding chairs, to help to reduce the mental load of going out.
My chronic illness go bag includes extra medicine, a first aid kit, fragrance free personal care minis, glasses, sunglasses, a scarf, socks, gloves, hat, a print out of my medical summary and contacts in case of emergency, snacks, salt (dysautonomia IYKYK), ear plugs, eye mask, water bottle, keep cup, phone charger and earphones.
Pacing
I’ve mentioned pacing through the Sensitive Canberra articles because it’s an art, and can be trickier in the festive season. Saying no, so you can say yes to the events and dates that mean the most, going home earlier than you might want to, sitting down when you’d rather be singing your heart out on the dance floor or sometimes not doing any of those things and paying the price with a symptom flare. It’s a balancing act and no choice is wrong.
Chronic illness isn’t fair, especially when it impacts special moments. But I’ve found the skill of maintaining body awareness, self-compassion, planning tasks around higher energy times of day, incorporating rest breaks, and doubling down on the self-care routines that help me recover when I have time at home, are gradually creating more resilience, and time with my loves!
Dates
I shared some of my favourite low-key date ideas in the last article, and whether romantic, a friend or family date, there are many options to suit all chronic illnesses. The most important thing is flexibility and being able to adapt to how everyone is feeling on the day. You might plan for a picnic at the Arboretum, but that might change to one closer to home, or in the living room.
Spoonie dates are special, because feeling isolated can come with chronic illness life. They are not so much about the specific experience or place but soaking up time together. A simple date at my favourite healthy cafe or beautiful shops can feel *almost* as special as a fancy night out.
A little note here about dating, relationships and intimacy with chronic illness. It can be challenging but it’s so worth it and you are worthy of being cherished and receiving the support you need, whether from your integrative medical team or a counsellor to make this possible.
Events
Every week when I receive HerCanberra’s round-up of dozens of things to do I’m excited, and then a little deflated. How can I pace myself and pick just one, when there’s so much on? But then I remember everyone experiences FOMO, no one can do it all and I’m so lucky to live here!
Events often come with travel time, fatigue, food planning, crowds, noise, fragrances, all triggers for my immune and digestive conditions Ehlers Danlos and Mast Cell Activation Syndromes. But missing out isn’t necessary, just being creative.
I scan through all the exciting events calendar and choose some that tick my chronic illness boxes: inclusive, held in the day time with fresh air, and easy parking. It also must below cost or free as I won’t stay long, and something plus ones like my partner or family might love too. One of the silver linings of illness is being more flexible, so some events I might be able to attend during the week, with less people.
Some inclusive events I love are markets, outdoor festivals, walking events, or small exhibits.
If you have more capacity and can attend events such as shows, cinemas or other ticketed events, pre-book, contact the venue ahead of time with your needs, and take your go bag.
Travel and transport
With chronic illness, fatigue, allergies or sensory issues, travel can feel challenging, so planning and factoring travel time into pacing for events is essential. We’re so lucky in 20-minute Canberra to be relatively close to everything, with easier parking than some other cities.
Choosing Canberra’s public transport options can be a great option in quieter times of day if it suits your capacity, whether the bus, train or light rail. Having a loved one on call or Uber installed if delays, sudden fatigue or symptoms occur, is a pro chronic illness tip.
Planning rest stops and toilet breaks is important for longer trips. The mental load and physical discomfort of chronic illness is huge, and I want to be able to put all my energy toward enjoying the time I have out, instead of figuring out logistics on the fly.
If going further afield is possible, call the airline, car hire or transport services ahead of time to arrange anything you need to make your trip possible and comfortable.
Accommodation
An accessible home away from home is number one when traveling with chronic illness. For me, a naturally cleaned, fragrance and mould-free environment, and a place to prepare food are the difference between navigating the trip, and a debilitating flare.
I’ve found researching and contacting accommodations from the comfort of my couch, long before the trip begins, is start of a successful spoonie getaway. Having your list of needs I mentioned above is so helpful when communicating with your hosts, along with a list of questions, such as asking about their cleaning and fragrance policies, toiletries, diffusers, air filters, windows or hypo-allergenic bedding. You can also ask for a quieter room, close to your parking space and accessible facilities.
It has been a delight seeing awareness around chronic illness, allergies, inclusivity and naturally healthier products increasing. Many accommodation website have a fragrance free, or allergy friendly search options, and there are an increasing number of places and AirBnBs committed to sustainability and wellness, that cross over beautifully with spoonie inclusivity.
Living life
Enjoying Canberra and loved ones in a sensitive body is about embracing pacing, planning and flexibility, so we can live life, not just through the festive season. It has been a joy this year to share my lived experience of chronic illness this year, through the Sensitive Canberra series and I wanted to thank the HerCanberra team, and readers for this opportunity.
I’ve had the privilege of connecting with Canberra businesses in integrative health, self care, food, fitness, style, home, garden, building, career, gifts and more, and am certain that the future is brighter for spoonies, because Canberra is leading the way with our commitment to health and inclusivity.
I’d love you to share your Sensitive Canberra, date and event tips. Connect with Lisa on Instagram @chronicillness.chic and her design page Simplify Simplifying.
Disclaimer: These articles don’t include medical advice. Please consult your medical team, or organisations like the National Asthma Council Australia’s Sensitive Choice program, for verified allergy and chronic illness inclusive information.
