November 6, 2024
Your weekly Spoony Scoop is here!
Our next live event, the podcast episode on ADHD everyone should listen to, and let's talk about narcolepsy 😴
Our next live event, the podcast episode on ADHD everyone should listen to, and let's talk about narcolepsy 😴
Hello Spoonies 👋
Hope your week’s going great!
We've been busy planning some exciting online events for the community, and we're thrilled to announce that our next event is just around the corner—next week, in fact!
More details below 👇
Chronic Pain: It's not all in your head - exploring persistent pains and symptoms through the science of safety
Join us on Monday the 11th of November at 7pm AEDT to discover how the science of safety can help us engage with and savour more of ourselves and the people, places and activities that we love.
Discover how our neural, hormonal and immune systems work together to respond to danger and recover in safety, and unpack:
⭐ What happens when there is cumulative load without adequate recovery.
⭐ How engaging our unique safety responses help our neuroimmunohormonal systems become more flexible and fit for purpose.
Guest speaker: Julia Di Kang is an Australian integrative physiotherapist, pain recovery coach and researcher. She works with the trailblazing team at Zebras Australia to put an end to less-than-positive experience for those enduring unwanted bodily pain, fatigue and tension in relation to HSD, EDS, orthostatic intolerance, POTS, dysautonomia, MCAS/MCAD, persistent pain syndromes, fibromyalgia, CFS/ME, post-viral fatigue, long COVID and PTSD.
This week we're chatting with Raven from Australia. Thanks for sharing your story!
⭐ Are you neurodivergent, chronically ill, and/or disabled?
Chronically ill, Neurodivergent, Disabled.
⭐ What barriers have you experienced in making friends and connecting with people?
When it comes to making friends or relationships of any kind, my main issue is that I struggle with social interaction due to the way I interpret or react to situations. I usually end up reading the room wrong and making a badly worded or misunderstood joke, or I feel left out because I’m trying to talk to a group of friends that all already know each other.
⭐ What's been your favourite thing about Spoony?
I really enjoy being able to ask questions and get answers from people who have experience in what it’s like to have certain disorders and illnesses, as well as talk to other people like me without worrying about saying something wrong or it being taken the wrong way.
Each week we'll spotlight a Spoony from our amazing community. If you'd like to share your story, we’d love to hear from you.
This week we’re chatting with a fellow Spoony about their Narcolepsy, which can be broadly defined as a chronic neurological disorder that affects the brain's ability to control sleep-wake cycles.
How do you describe your condition to other people?
A neurological sleep disorder that causes my sleep-wake cycle to be messed up, so I go into REM sleep frequently and quickly causing me to almost always be in REM and not getting the deep restful sleep that is needed which basically means I’m being sleep deprived, which means I am always exhausted. Before my diagnosis (and medication), I could sleep 24/7 and still be exhausted. I typically explain it to people by saying that my everyday is like if someone was to stay up for 72 hours straight and then continue to stay awake, that’s how I feel every single day.
What impact does your condition have on your daily life?
Literally everything. School, work, family, friends, etc. I am tired all the time and in pain all the time, but you wouldn’t ever be able to tell because I have gotten so used to hiding it. I have lost so many relationships whether that’s friends, family, etc due to people not understanding. I struggle to work full time and have no energy to anything else. I have to push myself to shower, clean, etc.
If you’d like to chat about your condition and share your experience with the community, we’d love to hear from you.
This podcast episode really hit me right in the ADHD feels this morning while I tried (and failed) to make a smoothie but ended up on 4 different side quests.
It’s with a psychologist, Janelle Booker, an expert in ADHD and the Highly Sensitive Person (HSP) trait.
I really appreciated how they spoke so candidly about the reality of ADHD, particularly the struggles we can experience when it comes to organization and emotional regulation, making daily life exhausting and overwhelming.
They also spoke about how ADHD’ers may be more prone to mental health struggles, including depression and anxiety, as well as engaging in dopamine-boosting activities (guilty).
In this chat, Hugh, Ryan, and Josh discuss ways neurotypical people can become better allies and supporters to ADHDers, whether as friends, partners, employers, or parents, especially when school, work, or relationships present unique challenges. It’s a great episode to share with friends or family who might want to understand ADHD a little better, or maybe, like me, you’ll learn a bit more about your own ADHD!