2020, a summary

I don’t want to be like every think piece from the past 8 months that begins with “in these unprecedented times”, so I’ll just update you briefly on what 2020 has brought for me. I started with health crises in the family and a whopping concussion, then a massive relapse which led to me needing my powerchair in my own home, a first for me.

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The timeless place

A hibiscus plant with bright pink flowers as viewed through a cobwebbed window, symbolising Siobhan's separation from the outside world.
A tropical paradise or a decaying spider’s delight, you decide.

Having ME/CFS is like being stuck in a timeless place, while the world passes you by. In my mind, I’m still 20. I’ve just finished uni, and I’m waiting to start my honours degree. My friends are still living here and I’m not long out of school.

In reality, 10 years have passed. My younger brother will soon surpass me in academic achievement. People have moved away. Weddings, funerals, celebrations pass and I am not a part of them.

I’ve missed a lot, but one of the hardest things in my time being ill will be missing my grandfather’s funeral this week. He passed on Christmas Day. The whole family, gathered to mourn his passing, while I am in the Chronic Illness Twilight Zone, unable to mourn, grieve and move on.

The whole world moves on, and I can’t go with it.

Socratic questioning

For a change of pace, I thought I’d share something I’ve had stuck next to my bed for at least the past 12 years. It’s a table of beliefs and socratic questions which challenge those beliefs. Naming and challenging unhelpful beliefs is a cornerstone of therapies such as CBT (cognitive behavioural therapy).*

When you live with chronic illness, sometimes you find yourself facing dark thoughts – I know I relate to many of these beliefs (such as needing a correct solution to every problem)! You might relate to some, or not any of these, but I hope you find this table and line of thinking helpful.

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But are you disabled enough?

Hi friends,

Just a quick post to say that after a brief 9 months on the NDIS (National Disability Insurance Scheme), my eligibility is being reviewed. What does that mean? Your guess is as good as mine, but I’d say, “you don’t deserve these services, you fraud, and we’re going to take them away unless you ‘prove’ your disability all over again.”

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Vale Ann-Marie Smith

CW: neglect, death, possible manslaughter of a disabled person

A white woman with abundant curly blonde hair and a smile on her face.
Ann-Marie Smith. Source.

Ann-Marie Smith was a 54-year-old woman with Cerebral Palsy. She lived alone in Adelaide, South Australia. And on 6 April 2020, Ann-Marie died from severe septic shock, multi-organ failure, severe pressure sores and malnutrition.

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A disabled person’s perspective on COVID-19

Fun fact: the NDIS’ primary response to COVID-19 has been to increase provider fees by 10% so they remain viable. Participants’ plans have not been increased by the same amount. In effect, the amount of services they can access with their plans has been reduced.

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Top 5 Reflections of 2019, or, a Year in Review

2019 was a hard year in many, many ways. My sewing and knitting production slowed down significantly – I made 11 garments compared to 29 the year before, and probably more the year before that. This was largely due to health reasons.

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Last chance to donate to my 30th birthday fundraiser!

Hello, friends! Just a reminder that this is the last chance to donate to my fundraiser for Emerge for my 30th birthday. Emerge do such valuable work and have helped me so much in the past that it’s been an honour to be able to help them out in return. You can read more about what they do on my original post.

Emerge Australia logo

Thank you so much to everyone who has already donated; it means the world to me. Most donations have been anonymous so if you’d like me to know you donated, please comment below.

Donate here.

You can read more about Emerge on their website.

My 30th birthday fundraiser

Emerge Australia logo

Hello, friends! I turn 30 very soon and would greatly appreciate if you could donate to my fundraiser for Emerge Australia. Emerge is the leading ME/CFS society in Australia and does so much good work for people with ME/CFS; both supporting them personally and advocating politically. In their own words:

Emerge Australia exists to give hope and help to people living with myalgic encephalomyelitis/chronic fatigue syndrome.

Emerge have affected me personally through the support they offered both myself and my family when I was incredibly unwell. I have taken chronic illness management courses with them, and my family and I found their volunteer helpline and personal aid (I think now defunct?) invaluable during times of health crises.

In recent times, they have set up a telehealth nurse to offer free consults with ME/CFS patients, including helping with NDIS applications, and have also advocated for ME/CFS patients to be on List B for NDIS (their applications would carry more weight). This fundraising will also go towards developing GP education modules, one of which has just been released (so if you know a GP, let them know!).

1 in 100 Australians are estimated to have ME/CFS. 25% of people with ME/CFS are housebound/bedbound. 50 yrs as recognition as a neurological disorder by the World Health Organisation.

ME/CFS sorely lacks advocacy and research funding, so anything you can contribute would be welcome.

Donate here.

You can read more about Emerge on their website.

 

EDIT: I can’t see names on the donations, so if you’ve donated and want to let me know, please leave a comment!