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.
I miss her, the hugs, the personal contact, the cozy evenings spent chatting and watching a show together, but I know this separation is for good reason. The other residents and I have watched in horror as aged care residents die in droves elsewhere.
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?
After I read about staff not turning up to work at some nursing homes, I began to question how bad things could get. I stowed tinned food in the drawer next to my bed, just in case they stop bringing me food. Now I have a lot of tuna and corn.
The fear here is still palpable, and as much as I, and the other residents, miss having visitors, we are relieved that our aged care facility acted swiftly and strongly to keep us all safe.
I am grateful to everyone doing the right thing, and social distancing as much as possible.
On the plus side the lack of visitors during this intense time has meant that I’ve gotten to know some of the other residents better. We sit in the courtyard to take in the sun and fresh air and because I am 50 years younger than most of them, they turn to me for technological help, something my tech-savvy friends find funny.
One resident couldn’t dial out on her mobile, another inverted the phone’s colours which made her family look like spooky x-rays, she was in tears because she thought that she had ruined all her photos. Struggles with technology are adding too many of the aged care residents’s feeling of isolation.
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.
Access to Telehealth is something the ME/CFS community has been pleading for, for some time. Before COVID-19, we were told that Telehealth was 'too complicated; it will take 10 years to be rolled out, and at first only for people over 70.'
Pleas for medical care fell on deaf ears yet access to disability services relies on medical reports. My profound level of disability means that a trip to my GP clinic triggers a severe worsening of neuroimmune symptoms. I lose the ability to speak clearly, am in severe pain with an “all of body” migraine that can last for weeks.
It feels like a huge slap in the face, to see how readily Telehealth is made available, for able-bodied people during this time.
Around 50,000 people in Australia are bed/housebound with ME and will have no access to ongoing care if Telehealth ends.
Worldwide there are millions of people missing out on their lives due to ME/CFS and the #MillionsMissing campaign seeks to raise awareness about this disability, the lack of healthcare, research and support. As ME/CFS often starts with an infection, in many cases a viral infection, it is particularly important in these times to make sure people get the help they need.
No one my age should end up in aged care, even if we are pretty good with our smart phones.
If I’m telling you my story again, in two years’ time, I hope it is from my own bed, in my own home, preferably with (vaccinated) loved ones nearby - and that if I need my GP, I can video call her.