In September 2022, Mark Butler, the Minister for Health and Aged Care, commissioned an enquiry into Long COVID and Repeated COVID Infections. The House Standing Committee on Health, Aged Care and Sport has been accepting submissions and testimony on the topic of Long COVID since then, and the submissions made by Long COVID Clinics is….enlightening.
Hello again, just a note to say I’ve had an article published on Independent Australia. It’s in reference to Australia’s Chief Medical Officer, Paul Kelly, referring to the deaths of the vulnerable from COVID-19 as a “reaping”.
You can read it here: Chief Medical Officer’s COVID comment leaves the vulnerable gasping.
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.
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!
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?
My hero for today is the woman with MS who, in pre-pandemic times, fought NDIA (National Disability Insurance Agency) in court for her right to have a sex therapist funded. Bloody legend. Disabled people have as much of a right to consensual sexual expression as everyone else, and if sex toys and Tinder are physically out of the question (yes, this was assessed in the case) then hiring a sex therapist who specialises in clients with disabilities seems a logical choice.
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.
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.
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.
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.”