Bendy and the Tisums

13/09/2025

✨ “It was just four pieces of clothing… but it felt like climbing a mountain.” ✨

Yesterday I managed to put on a wash, only four items. That was all I could handle. For most people, laundry is background noise, something automatic.

For me, every step sorting, lifting, pressing the buttons eats away at my limited energy budget.

This is life with chronic illness. Even the smallest tasks come with pacing, planning, and the risk of a crash.

That doesn’t make me lazy, it makes me human in a body that demands more care than most.

And while it’s frustrating, I’m learning that small victories count.

Four pieces of clothing today is still progress, still survival, and still enough.

06/09/2025

What autistic anxiety really feels like

Sometimes when I get anxious, it isn’t just a bit of worry running through my head. It feels like my whole body and brain are hijacked at once. Lights suddenly feel too bright, every little sound drills straight into me, and even the air on my skin feels sharp. What most people can tune out crashes over me like a tidal wave.

Inside my head it’s like a thousand browser tabs have crashed open all at once. I get stuck in endless loops of “what ifs” and worst-case scenarios and no matter how hard I try I can’t switch them off.

My body reacts too.

My heart races, my chest tightens, I feel shaky and overheated as if I’ve been thrown into fight-or-flight mode with no way out.

Sometimes I completely shut down and it’s like speech and movement vanish and I retreat inward. Other times everything spills out in a meltdown with tears, pacing, or intense stimming just to get through the storm.

It isn’t mild and it isn’t just nerves. It feels like I’m standing on the edge of a cliff with the ground shaking under me.

The intensity can hit in seconds, stay for hours, and when it finally ends I’m left exhausted. Headaches, aching muscles, nausea, complete wipe-out.

Even when the peak passes it doesn’t just disappear. The adrenaline lingers in my body and I’m knocked out for the rest of the day.

This is autistic anxiety. It isn’t quirky or funny. It’s a full-body battle that deserves to be seen and understood.

10/07/2025

💬 “Self-acceptance offers more freedom than self-improvement.”

This quote isn’t about giving up on growth it’s about recognizing that who you are right now is worthy, whole, and enough.

For many in the disabled and neurodivergent community, self acceptance is the radical act.

It frees us from chasing unrealistic expectations and invites us to live authentically, not apologetically.

If this resonates with you, like, share, and comment below.

Let’s keep building a space where being yourself is more than enough.

10/07/2025

Can You Touch Your Big Toe to Your Nose?

Let’s talk about why this might not be as impressive or as harmless as it seems.

For most people:
No, you shouldn’t be able to do this safely.
It requires extreme flexibility in your hips, spine, hamstrings, and neck.
Attempting it can lead to muscle strain, nerve impingement, or even dislocations.

For hypermobile individuals or trained performers:

Some may do it easily especially those with Hypermobility Spectrum Disorders (HSD) or Hypermobile Ehlers-Danlos Syndrome (hEDS).

Gymnasts, dancers, or yogis might also achieve this through years of training.

But even for them, the movement is not functionally useful and can stress already vulnerable joints.

From a medical point of view:
This could indicate joint hypermobility, especially if it’s easy or painless.

It can be linked to connective tissue disorders such as hEDS.

If it causes symptoms or pain, it could be a red flag worth discussing with a specialist.

So what’s the takeaway?

If you’re doing toe-to-nose movements without training or understanding your body’s limits, it may not be harmless.
And if you live with hypermobility you’re not flexible, you’re medically complex

📣 If you’re enjoying our content and learning something new, please:
👍 Like this post
💬 Drop a comment below
🔁 Share it with someone who needs to see it
👥 Follow our page to support awareness around HSD, hEDS, and invisible disabilities

Together we’re building a better-informed, more inclusive world

08/07/2025

If it’s not accessible, it’s not acceptable.”

This Disability Pride Month, Bendy and the Tisums are holding the line: accessibility isn’t optional it’s a basic right.

From ramps and lifts to subtitles and sensory friendly spaces, accessibility means real inclusion. When the world says “that’s just the way it is,” we say it’s time to change it.

No matter who you aredisabled, neurodivergent, chronically ill, or an ally your voice matters.

Share this message. Speak up. Make space. Because a true community includes everyone.

📢 Need support or guidance here in Jersey? Check out these trusted local groups:

Enable Jersey the island’s pan‑disability charity offering advice, equipment, and advocacy  

Disability Team Government of Jersey embedding disability inclusion across the island 

Adult Learning Disability Service Gov.je comprehensive support for learning disabilities 

📸 Follow our awareness journey here and connect with community:

👉 facebook.com/BendyAndTheTisums

Together, let’s build a world where everyone belongs.

04/07/2025

☀️🥵 Summer isn’t a vibe for everyone…
Meet Vee, our beloved velvet vampire of fatigue. While others are soaking up the sun, Vee’s energy is melting faster than an ice lolly in July.

For those living with PoTS, hEDS, or Chronic Fatigue Syndrome, heatwaves aren’t just uncomfortable they’re debilitating.

🩸 Heat worsens her blood pooling and dizziness
💓 Her heart races like she’s run a marathon just from standing up
🧠 Brain fog rolls in thick and fast, turning simple thoughts into scrambled code
🛋️ And the sofa? That’s her cool, gothic sanctuary

She’s not lazy. She’s literally overheating on the inside.

💬 So if someone like Vee cancels plans, goes quiet, or can’t get out of bed on a hot day offer understanding, not judgment.

🖤 Chronic illness doesn’t take a summer break. Neither does compassion.

06/06/2025

🟣 “I’ve lived with fibromyalgia for 25 years — and I’m still fighting to be believed.”

This powerful BBC piece shares the voice of Lisa, who has lived with fibromyalgia for over two decades. Her story highlights the painful truth many of us know too well: that fibromyalgia isn’t just about chronic pain — it’s about being dismissed, misunderstood, and told “it’s all in your head.”

👉 Fibromyalgia affects around 1 in 20 people
👉 It causes widespread pain, fatigue, brain fog, and sleep issues
👉 There is no cure — just management, advocacy, and community

📢 Lisa’s story is a reminder that what’s invisible still matters. We’re not imagining it. We’re not weak. And we’re certainly not alone.

Please take 2 minutes to read and share this article — not just for awareness, but for change. 💜

🔗 [https://www.bbc.co.uk/news/articles/c3rp39vggx7o?fbclid=IwQ0xDSwKvDd1leHRuA2FlbQIxMQABHgBHOcf_0axkvpnt_noC55727QnQXcNcya0T7igYPOO2OqlnCOQhqhUAqQqp_aem_tEuAZ7Mi7faCTiehgZdB6Q

Marlene Lowe is among those helping University of Aberdeen researchers to help millions of sufferers.

05/06/2025

🧠✨ Why You Need to Read This ✨🧠
If you live with Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorders (HSD), Postural Tachycardia Syndrome (PoTS) — or care about someone who does — this article from PoTS UK is essential reading.

https://www.potsuk.org/tackling-misinformation-about-ehlers-danlos-syndrome-hypermobility-spectrum-disorders-and-postural-tachycardia-syndrome

Here’s why it matters ⬇️

It tackles widespread misinformation that harms diagnosis, treatment, and understanding.

It highlights the real links between PoTS, hEDS, and HSD — connections too often dismissed or misunderstood.

It centers patient experience and pushes for empathy, not dismissal.

It’s a powerful tool to share with friends, family, and healthcare professionals to foster accurate, respectful dialogue.

📣 Let’s stop the spread of myths and start listening to lived realities.
🦓 Please read and share. It matters more than you know.

14/05/2025

What Is Autonomic Dysfunction and Why Does It Make Everyday Life So Hard?

Autonomic dysfunction (also called dysautonomia) happens when the autonomic nervous system the part that’s meant to regulate things like heart rate, blood pressure, temperature, and digestion stops working properly.

This isn’t anxiety. It’s not just being tired.

It’s a real, medically recognised condition and for many of us with PoTS, hEDS, MCAS, or neurodivergence, it’s part of daily life.

Here’s what it can look like:

Nearly fainting after standing up
A racing heart from brushing your teeth
Constant digestive issues
Dripping with sweat one moment, freezing the next
Fluctuating blood pressure
Feeling like you’ve done a workout… from taking a shower
Fatigue that doesn’t go away with sleep
This is what living with autonomic dysfunction feels like

You don’t look sick, but your body is constantly glitching.

Your nervous system isn’t on your side and yet, you still show up

This condition is often misunderstood or dismissed but it’s real.

Here’s what trusted UK medical sources say:

NHS: Autonomic Nervous System Disorders
Dysautonomia Support UK
PoTS UK

To everyone who’s been told “It’s just stress” this post is for you.

You’re not exaggerating. You’re not imagining it.

And you’re definitely not alone.

14/05/2025

Just had a shower.

Heart rate: 126 bpm
Oxygen saturation: 95%

For most people, a shower doesn’t cause their body to crash.

But for me, it does every time.

Here’s the clinical contrast:

A healthy 45-year-old woman in the UK (per NHS and British Heart Foundation data) would typically show:

• Resting pulse: 60–80 bpm
• Light activity (shower): ~80–95 bpm
• Oxygen levels (SpO2): 97–99%

unchanged with mild exertion.

My body?

• HR: 126 bpm

After a few minutes sitting under warm water.

• SpO2: 95%

Blood oxygen levels already dipping!

This isn’t anxiety. It’s not being unfit.

This is autonomic dysfunction ! How my nervous system fails to regulate basic life functions due to POTS, fibromyalgia, hEDS, and MCAS.

Showering shouldn’t feel like a HIIT workout. But it does. And I’m not alone.

Let this be a reminder:

Disability isn’t always visible, but it is very real.