Long COVID

Last post, I wrote about my experience having COVID in January and not being able to access an at-home PCR test (or any other useful support). Recovering from COVID was a slow and arduous process, but in March I felt I had maybe regained 80% of my pre-C function – that’s still not great, considering how little functionality I had to begin with, but probably as good as it was going to get.

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At-home PCR testing for Disabled people discontinued

 

A row of Lilly Pilly plants in a side garden

In January, I came down with what felt like the worst virus of my life. I was weak, feverish, shivering and shaking, delirious and had a sore throat and splitting headaches. My first thought was to ring the COVID hotline, only to find the at home testing service for Disabled people had ceased to exist.

I spent hours on the phone, trying to reach someone who could help me. Alternating with lying exhausted and breathless on the couch. I was finally told to get a GP referral to ‘prove’ my need for the service. How? I asked. Just go to a GP clinic!

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Goodbye, mum

It’s taken me over 2 months to figure out how to put this post together. But if you follow me on Instagram, you’ll know that my dearly beloved mum passed away unexpectedly in October.

It would be difficult to overstate how much she meant to me. I had never left home, and she was my carer for much of my life. In the past couple of years, as her health declined, that role reversed and I looked after her. I wish I could have done more.

There’s nothing I can say, or do that will change things. But I felt I couldn’t go back to posting my handmades without acknowledging how profoundly my life has changed without mum, my best friend, carer, counsellor and guiding light.

The Support Worker Paradox

A kitchen bench with huge plastic containers filled with fried rice and chicken soup cooked by a support worker, in front of a bunch of spring onions.

Letting support workers into your life as a Disabled/Ill person is challenging. Not only are you asking them to do tasks you would usually do for yourself, you are inviting complete strangers to your home to view you at your most vulnerable.

What if you don’t get along? How do I employ someone? What if they’re set in their ways, and don’t want to adapt to my circumstances? What if their profile on HireUp talks about how they think children with disabilities are a blessing from God who inspire them to get out of bed every day?

That’s not even mentioning that with ME/CFS, being around people and stimulation in general is my kryptonite?*

Since mum’s circumstances have changed so dramatically due to a new diagnosis, we now have 4 support workers (or PAs) come to us a week, plus garden/yard maintenance. We are lucky to have gathered such an understanding team around us, but it took so much time and energy to accomplish. I’m still not quite comfortable with having new people in my space, and this new life.

*Hence the title of this post: am I so sick that I can’t do things for myself, but can’t stand having people around doing them for me either?

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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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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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.

Continue reading “A disabled person’s perspective on COVID-19”

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.

Continue reading “Top 5 Reflections of 2019, or, a Year in Review”

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.

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