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Siobhan Simper

@siobhansimper

3.3K

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Mixed (lolly) bag of sewing, knitting, chronic illness/disability & makeup. ME/CFS #MillionsMissing. Cis/she/her. On Wadawurrung land.

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Vanilla slice review: these are mini cupcakes part II

Another pop up from Cake Creations by Kate , another 4 set of mini cupcakes.

This time I tried:
- cookies and cream: this straight up tasted like an Oreo, which I adore.
- jam donut: vanilla with a jam filling, drop of jam on top of buttercream icing, and a dusting of cinnamon sugar for that hot off the agricultural show van food memory.
- white choc raspberry: raspberry cake with hard white chocolate pellets in the middle and a pink icing. A bit undercooked, probably my least favourite of the lot.
- lemon: I've had this before - lemon curd delight.

11/10 vanilla slices.

[Image of 4 mini cupcakes on a plate. Cookies and cream is a speckled vanilla with matching icing and a cookie on top, lemon has pale icing with lemon curd, white choc raspberry is a pale pink variegated cupcake with pink icing, biscoff has white icing, jam donut is vanilla with a glob of icing and jam on top.] 4 mini cupcakes on a plate. Cookies and cream is a speckled vanilla with matching icing and a cookie on top, lemon has pale icing with lemon curd, white choc raspberry is a pale pink variegated cupcake with pink icing, biscoff has white icing, jam donut is vanilla with a glob of icing and jam on top. by @siobhansimper

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7 days ago

Anatomy of a social murder: speech pathologist edition

I have had difficulties chewing and swallowing for the past 2 years.
I eat a limited diet of mostly mush, and choke on my own saliva and food.

I booked a speech and swallow study and AAC assessment with a speech pathologist.
Despite having a clear referral and working at a multidisciplinary clinic where I was already a patient, the first thing she said when she arrived was: "I don't know why I'm here."

She was completely unprepared for the appointment.
She asked a lot of filler questions, made irrelevant chat, and appeared unfamiliar with my file.
In NDIS land, time = money. $193.99/hr, to be exact.

She had my support worker feed me diced peaches and water.
I struggled with the peaches, unable to fully chew them. They stuck in my throat, and stayed there til 8pm that night.
She stopped watching after one bite, and let me suffer until I had to stop. She said she "didn't need all that" anyway.

This was not a full swallow study, yet she determined I was safe to eat my regular foods without watching me do so.
My choking episodes were an irrelevance.

Despite wasting over an hour, the SP wanted to come back soon and "play" with AAC devices.
I explained I could not use most of those devices due to limited hand function, and require a phone app. Could she research those and send me a list?
She was suddenly "busy" and couldn't email me "for several weeks".

I complained to the clinic.
They sent her case notes and said, she acted appropriately.
I asked, it is appropriate to tell a client they don't know why they're here?
Is it appropriate to make conclusions about someone's safety eating without a full swallow assessment?
They ignored me, and SP has cut contact.

It is terrifying to suddenly not be able to eat your regular foods, to choke randomly on saliva, food and nothing.
What is more terrifying is the complete abandonment from an allied health professional whose job it is to help you.
As is the closing ranks from their well known, large clinic.

Cont. In comments Anatomy of a social murder: speech pathologist edition by @siobhansimper

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10 days ago

Some early spring flowers!

1. My favourite plant, wattle, acacia acinacea. This one has been brutally up pruned so you just get the remaining foliage and flowers. Fluffy yellow puffs with green foliage.

2. Eremophila hygrophana, blue emu bush. Slowly dying in the humidity but the alive parts have vivid purple flowers against its grey green foliage.

3. Callistemon, bottle brush, bright red inflorescence (I love that word).

4. Westringia, native rosemary. Delicate purple flowers on a green bush. You might remember them as my cube sons.

5. Camellia Japonica. Stunning pink red flowers with glossy green leaves. Somehow still thriving in its harsh western aspect.

6. Goodenia ovata, hop goodenia. Another personal favourite. Delicate yellow flowers on a lush green bush. Wattle, acacia acinacea. This one has been brutally up pruned so you just get the remaining foliage and flowers. Fluffy yellow puffs with green foliage. by @siobhansimper

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a month ago

I lost a chunk of my toe on Sunday
And no one gives a shit
Sorry, this is gory

On Sunday, I took my socks off and a chunk of my left toe went with them.
There was no blister, scab, trauma, pressure, or pre existing injury.
A wound just spontaneously formed.

I sat, bleeding, for about 10 minutes. Completely alone.
Physically unable to reach, move, or do anything but sit in a pool of my own blood.
It soaked deep through the carpet and underlay.

I tracked blood around the house waiting for my support worker to arrive, hours later.
I've never bled so much in my life before. I was terrified.

It was 2 days until I could see my nurse, GP and podiatrist.
They all said the same thing: "I don't know."
How does a person lose a chunk of flesh, develop a spontaneous wound, and bleed deeply with no explanation?

I have been doing everything in my power to treat and prevent the foot wounds I have experienced for over a year.
Sought medical help, practiced pressure care, weekly nursing.
Nothing has been enough.

What is most horrifying to me about this situation is not the continued agonising pain, nor the trauma of seeing my blood stain in the carpet, nor the increased nursing and cost of more wound care.
It is the complete unwillingness of anyone to help, or concede that this is even a problem.

This isn't a lack of knowledge. It is a lack of care.
I have been fighting for interventions for months, years, that could have prevented this and improved my quality of life.
Instead I am told - this is an acceptable quality of life, for you.

I'm unsure what more I can do when the answers to my survival lie in the hands of a medical and social system which refuse to release them. I lost a chunk of my toe on Sunday
And no one gives a shit
Sorry, this is gory by @siobhansimper

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a month ago

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a month ago

Vanilla slice review: these are mini cupcakes

When @cakecreationsbykate is in town, it's cause for celebration. Not only are her mini cupcakes absolutely adorable, they're well made with attention to detail.

This time I tried:
- salted caramel: my favourite. A classic. Perfectly executed.
- lemon: this has actual lemon curd on the top and inside. Real lemon-y, tart and sweet.
- biscoff: somehow this tastes and feels exactly like biscoff. Don't ask me how, magic probably.
- vanilla rainbow: it's vanilla, it's rainbow, it's pink, what more could you want?

11/10 vanilla slices.

[Image of 4 mini cupcakes on a plate. Vanilla rainbow is pink with rainbow icing, lemon has pale icing with lemon curd, salted caramel is a caramel cake with white icing and a drizzle of salted caramel, biscoff has white icing, brown sauce and biscuits crumbs.] 4 mini cupcakes on a plate. Vanilla rainbow is pink with rainbow icing, lemon has pale icing with lemon curd, salted caramel is a caramel cake with white icing and a drizzle of salted caramel, biscoff has white icing, brown sauce and biscuits crumbs. by @siobhansimper

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a month ago

I nearly died from severe ME
When I was 22
CW: death, abuse, neglect, starvation

Every week the ME community loses another precious life.
These deaths are often accompanied by harrassment, disbelief and abuse.
When I was 22, this could have been me.

After attempting graded exercise therapy, which is contraindicated for ME, I developed very severe ME.
I was bedbound 24/7 and was completely incapacitated.
I was trapped in my bedroom, blinds down and earplugs in.

I could speak 3 sentences a day and be around someone for about 60 seconds.
It was torture.
I stopped being able to eat and digest food.
My weight plummeted and I nearly died from malnutrition.

I was "lucky" enough to be admitted to hospital and given an NG feeding tube.
After 6 months in hospital I could eat again and improved to moderate ME.
The abuse I experienced in hospital and poor quality of life since meant this intervention was not worthwhile.

This was 14 years ago, and it seems little has changed.
Young people still lie imprisoned in their bed.
They die due to starvation and medical neglect.

Every single death from ME is preventable.
If we had adequate research funding and treatment, no one need die from this hideous illness.

It is not so much ME that kills as its lack of treatment options, research and medical neglect.
We are not abstract figures. We are your friends, family members, neighbours, former colleagues and classmates.

I nearly died from ME.
Given my current progression and lack of care, it is likely this will happen again - and this time, there will be no feeding tube, no full time care.

After 16 years of illness it is hard to be anything but cynical about society's callous disregard for life; for people's finely tuned ability to turn away from those suffering the most.
I nearly died and I likely will soon. But at least I won't have hardened my heart to revel in the death by neglect of another human being. I nearly died from severe ME
When I was 22
CW: death, abuse, neglect, starvation by @siobhansimper

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113

2 months ago

Vanilla slice review - guess who's back

It's been a hot minute since I had a vanilla slice. This offering is from Routley's Bakery, and I hoped would represent the archetypal country bakery vanilla slice. This was not the case.

The yellow filling is tasteless and so gelatinous it sprang back when chewed. The icing, too thick and sweet, with a basic pastry top and bottom.

I'm sad to say, 2/10 vanilla slices.

Note for transparency: my support worker took this photo, plated, cut up the slice and spoon fed it to me. It's all glamour around here

[Image of a firm vanilla slice with yellow filling, pastry top and base, and thick white icing.] a firm vanilla slice with yellow filling, pastry top and base, and thick white icing. by @siobhansimper

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2 months ago

What happens when a support work agency enters voluntary liquidation?
With no notice given

The owner faces no consequences.
She sends clients invoices from her million dollar properties, directed to her bank account.
A new ABN appears under her name. Staff and clients are approached for a new business.

300+ clients are left without support. Many are unaware their services have ceased.
Some may need to be hospitalised. Others have their lives endangered at home due to lack of care.

120+ workers lose 10 days pay and super as the liquidators have no access to the roster.
They were mostly casual workers with no leave entitlements.
Many cannot pay the bills until they find new work.

Some workers were on sponsored visas.
They face deportation without a new sponsor.
Some may have to leave the country immediately.

A regional town with one public hospital has to absorb this number of clients and workers in the one sector, overnight.
This is impossible.

As always - the vulnerable bear the burden of the powerful seeking easy money. The full impacts are yet to be seen.
"The sky is blue, the sun is shining, and yet you forget that everywhere there is evil under the sun." What happens when a support work agency enters voluntary liquidation?
With no notice given by @siobhansimper

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2 months ago

My support work agency went into liquidation on Tuesday 18 August. I received an email advising me to find another provider Monday at 4:58pm, approx. 1 hr after office staff were notified.

Other staff and many clients were, and remain unaware of Nightingales closure.

Despite being under a restructuring plan for financial insolvency since 2024, the choice was made to not safely transition hundreds of clients to another provider or give adequate notice.

I am deeply traumatised by these actions, as are many staff and clients. Our regional town cannot possibly absorb this number of people requiring supports and work in such a short amount of time.

The public hospital is at capacity. People will die because of these actions.

Meanwhile, Nightingale Home Care trading as O.P.A Holdings received approx. $4.7m in NDIS plan managed payments in the 25-26 financial year. This is not even their main business- that is aged care subcontracting.

I feel genuinely ill.

[Images:
1. Nightingale Home Care website.

2. Email from Nightingale admin. "I am writing to advise you that you will need to make arrangements with an alternative provider, effective close of business tomorrow, 18 August 2026.

I appreciate the very short notice and want to make it clear that this decision is outside of my control. I have advised you as soon as I was made aware of the situation, and unfortunately, I have not been provided with any further information or context at this stage.

I am providing this notification as early as possible so that you have as much time as possible to make alternative arrangements.

I sincerely apologise for the inconvenience and understand that this is not an ideal situation."

3. NOTICE OF APPOINTMENT OF RESTRUCTURING PRACTITIONER FOR A COMPANY
Company: O.P.A Holdings Pty Ltd
ACN: 661 218 917
Trading name: Nightingale Home Care
Status: Restructuring Practitioner Appointed
Appointment Date: 04 October 2024

4. NOTICE OF APPOINTMENT AS LIQUIDATOR
Company: O.P.A Holdings Pty Ltd
ACN: 661 218 917
Status: In Liquidation
Appointment Date: 18 August 2026

5. FOI report of NDIS payments. O.P.A Holdings received $4,714,588.57 in plan managed NDIS payments in the 25-26 FY.] Nightingale Home Care website. by @siobhansimper

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2 months ago

I have the greatest friends, in 3 parts:

1. Handknit Jigglypuff from @philononi the knitting prodigy! @kokaiar_art vase from @beth.bennett12 , lucky cat from former support worker

2. "That's a paddlin'" paddle from @danidoesfibre , @kokaiar_art chopping board with matching bowl from @aliciajb20 , comic and origami by @willowbarque

3. Close up of @willowbarque original comic possibly the greatest cartoon of all time?

4. Warrnambool streetscape by Colleen Campbell whose tag I can't correct, print and cross stitch all from @beth.bennett12

[Images:
1. A handknit pink Jigglypuff Pokemon next to a pink vase in Aboriginal design and a small lucky cat.
2. A wooden chopping board with pink Aboriginal design, a smaller board or paddle with Jasper from The Simpsons engraved on it, reading "that's a paddlin'", a card with a hand drawn cartoon and a gold crane origami.
3. Hand drawn cartoon of a cat with monocles and top hat trying to capture super powered rats and walking straight into a wall.
4. Art hanging on a wall: a streetscape from a country town, two birds sharing a feast, and a cross stitch of Palestine with olive tree.] A handknit pink Jigglypuff Pokemon next to a pink vase in Aboriginal design and small lucky cat. by @siobhansimper

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2 months ago

Winter garden update. This is also a contribution to Severe ME Awareness Day, as I haven't been outside for approx. 2 years due to Severe ME. I knew it had grown in that time, but not this much!

As @danidoesfibre says, it's verdant! (What a great word.) I have achieved my goal of a garden higher than my fence.

The cruelty of ME is not being able to weed, prune, or even just go outside to sit and enjoy this garden I grew from the ground up.

#SevereME #SevereMEAwarenessDay #SevereMEAwareness #SevereMEAwarenessMonth

[Images:
1. A path with a lush hedge on the left, starting with a Westringia, and pots on the right, with a crimson Camellia, Magnolia and Correa.
2. More hedge, a mixed native planting with Westringia, Leptospermum (lemon and burgundy), Prostanthera, and Callistemon.
3. A full native garden with Callistemon, Correa, Acacia Honey Bun, and Myoporum.
4. A corner of the garden with Prostanthera, Correa, Banksia, Acacia Honey Bun, Hakea Callistemom and Leptospermum.
5. A Callistemon, very sad and over pruned Acacia Acinacea, and very overgrown Saltbush.
6. A particularly overgrown section of the garden with Callistemon, Goodenia Ovata, some sad Poas, and Leptospermum and more Callistemon on the background.
7. Another corner of the garden with Leptospermum, Correa groundcover, Westringia.] by @siobhansimper

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2 months ago