“I’ve found it really hard. I’m getting tired. Financially it’s tough. I’m working full time, but I’m now caring full time for my partner who is completely wiped out.”
That’s the reality of Justin Baker whose partner has been debilitated by Long COVID for ten months. Right now, the Australian Parliament is running an inquiry into Long COVID and the significant health challenges that surround it. Asthma Australia has made a submission calling for better care for people like Karen and Justin.
Like so many Australians, Karen and Justin contracted COVID-19 around April 2022. Karen had quite severe allergic asthma managed by several medications and was fully vaccinated. Karen tried to take part in an interview many times with Asthma Australia, but ultimately we spoke with Justin instead because Karen remained too exhausted. He bought a different perspective to the situation – the impact on family.
“We both got sick with COVID at the same time for about 10 days. She wasn’t as bad as I was, but she did struggle with her asthma.
“Before then, Karen worked full-time at a university and was active. I started to get better but Karen got worse and worse. Extreme fatigue and exhaustion set in. For about two months Karen could hardly leave the bedroom, only to use the bathroom and toilet. The other thing was she had really bad brain fog. She couldn’t focus on basic things. For two months we could only text as conversation exhausted her. Couldn’t even focus on a screen. Couldn’t manage more than one topic in a conversation. She’s a bit better with that now but it’s still taxing for her. We can’t have visitors as talking is too much.”
Justin is the sort of partner you want in this situation. He’s taken on full time caring responsibility, holding down a professional job, and is dad to an 18-year-old daughter.
“Karen can only eat and then gets up and leaves because it’s just too hard. That sounds bad but she just can’t do much. She’s also so isolated it’s very hard for her.”
Karen, who is proactive with her health- especially her asthma- has used her small amount of energy to go online for answers.
“In Australia the Long COVID situation isn’t that good. We are behind what they are doing in the UK and support sufferers receive there. Karen tapped into forums in the UK where she came across this health condition that reflected her symptoms.”
After some research, Karen presented to her GP asking to be tested for a condition called Postural Orthostatic Tachycardia Syndrome or PoTs for short.
“With PoTS you have low blood pressure. When you stand, your pulse goes up a minimum of 30 beats because it must pump extra to get oxygen to the muscles. So if she stands up too quickly she gets really dizzy but it affects so many things. It’s part of dysautomy – that is where all the automatic processes of the body are dysregulated. It’s linked to her Long COVID,” Justin explains.
Asthma Australia’s Medical Director Dr John Blakey established the Post COVID service at the Sir Charles Gairdner Hospital, Perth. He said such clinics are not available to everyone that needs them.
“I’m oversimplifying, but there are broadly three different types of people we see in the Post Covid clinic. Overwhelming fatigue, aches and brain fog are predominant in one broad group, who also may be labelled as having POTS. Many of these people were busy working women who are proactive on the internet searching for information,” said Dr Blakey.
“On our clinic we are fortunate that we now have a team of physios, occupational therapists, psychologists and so forth, but this has taken two years to establish and it isn’t running optimally as we haven’t embedded all the local research projects yet. As the funding doesn’t come from the health department, it’s down to individual hospitals to decide what they are going to provide, if anything.”
For Justin and Karen, life has become increasingly tough.
“We haven’t left lock down for three years, it feels that way. People don’t understand how it’s affected Karen (and me). No one seems to really understand it.”
Justin has tried to reach out for help with Caring organisations but says nothing has been useful.
“I need practical help. The counselling is okay but I need help with things like cooking and washing. It’s financially hard right now too. We only have my income and we have extra medical costs. I estimate about $15-20k so far on doctors, programs, supplements, medications and care.”
Asthma Australia is calling for the Australian Government to work with State and Territory Governments to address the gaps and challenges being faced by people with Long COVID, and their health care professionals. As well as investing in specific research into Long COVID.
Dr John Blakey agrees and adds that “in the short term, having more equitable access to funded Long COVID clinics would be a start, rather than the current postcode lottery.”
For Justin and Karen, their reality of Long COVID has no clear end date.
“I’m really struggling with the whole thing. I wish more people were aware of how bad it is.”
Submissions into the Long COVID Inquiry have now closed but there is still plenty of time to raise awareness.
You can help Asthma Australia’s work in representing the needs of people with asthma in government submissions, policy and social change. You can do that by donating here.