ME Awareness week:

Thirty-five-year-old living in aged care reveals what life is like inside during this pandemic


From SBS News Insight (Australia) by Ketra Wooding, 9 May 2020:

Ketra has been forced to live in an aged care facility due to her severe chronic fatigue syndrome. Unable to find suitable accommodation elsewhere, Ketra has had no choice but to stay, and now she’s trapped inside as the coronavirus pandemic continues.

The severe lock down of the aged care facility where I live was early and brutal. The door codes were all changed, and I couldn’t get out of the facility and no visitors could come in. This was in early March, I had just had my 35th birthday.

I don’t want to be here, I want to leave.

Unfortunately I haven’t been able to leave aged care because I have myalgic encephalomyelitis (ME) also known as chronic fatigue syndrome (CFS). I was hit hard with this disease and, within a year of getting it I’d deteriorated so much that I needed 24/7 care. After a three month stint in hospital, I was sent to live in aged care. I have intense sensory sensitivities that worsen over time, when exposed to triggers. My home needs to be a low chemical, low noise, high physical support environment – something impossible to find at present.

So I’m 35, living in aged care and now I’m locked into the facility.

Mum came back to visit after the initial lock down, shouting up to my window from the street, to have a weird, loud volume, extremely non-private conversation.

We feel like sitting ducks, just waiting to see if COVID-19 will strike our nursing home. If COVID-19 does hit us – how many of us will die? Surely our nurses and carers won’t abandon us, or will they?…

In contrast for me, life has opened up a bit, my healthy friends are more available and more willing to video call. I even attended a bestie’s online 40th birthday party, my first birthday party in nine years. If COVID-19 hadn’t happened she would’ve had a real life birthday party and I would have missed out.

I also video call my physiotherapist, psychologist and phone my GP, using Telehealth like most people in Australia.

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