Once upon a time, Mrs Dodson was a champion athlete, as well as a disability support worker, but now simply making a cup of tea can feel like running a marathon.
It's inspired her to create a support group for people in Greater Shepparton in similar circumstances, creating a space of understanding where sufferers are not dismissed or patronised, as can often be the case.
Mrs Dodson has chronic fatigue syndrome — a complex neurological illness typically characterised by extreme fatigue made worse by exertion — as well as fibromyalgia, a condition which causes widespread pain and tenderness throughout the body.
Mrs Dodson was inspired to create a support group after realising there was no specific help for people in the Greater Shepparton region living with CFS or similar conditions.
“It’s a safe space for them to talk about what’s going on for them, because a lot of us have issues with medical professionals not supporting us,” she said.
“Sadly there are lot of doctors who don’t believe in fibromyalgia or CFS; people have been told ‘it’s all in your head’.''
Mrs Dodson was a talented athlete while at secondary school, where she excelled at running, often "blitzing" the boys.
But about 20 years ago Mrs Dodson started experiencing crippling bouts of fatigue that would leave her bed-ridden for days without an obvious explanation.
At the time Mrs Dodson was working full-time as a disability and youth support worker while looking after her daughter, Cynthia, who has attention-deficit/hyperactivity disorder as well as oppositional defiant disorder.
“I’d just crash after work,” she said.
“My husband and daughter would take the coffee out of my hand while I slept.”
Eventually the excruciating pain caused by her fibromyalgia combined with her inability to perform at work forced her to resign on a disability pension.
Mrs Dodson said both CFS and fibromyalgia were poorly understood diseases, often dismissed by people as "being a little bit tired".
“Right up until the mid 90s, a lot of sufferers were treated appallingly, and still are,” she said.
“There wasn’t enough information about what it is, and what it's not — that’s the frustrating thing about it, the lack of information.
“We get people saying, ‘Oh, I get tired too'.
“It’s very dismissive when you feel like they don’t understand the complexity of what these conditions are — it’s really frustrating.”
To make matters worse, Mrs Dodson said many people she knew with CFS had struggled to get financial support due to the ambiguity and stigma surrounding the disease.
While COVID-19 has put an end to the group's face-to-face meetings which normally run once a month, the virtual support is ongoing.
“I think a lot of people are grateful just to have people to talk to who actually understand what they’re going through. It’s a safe place for people to vent their feelings, because quite often we don’t get that opportunity,” she said.
“You can get a six-week flare where things can be terrible, so you can go into the support group and say ‘I’ve had the night from hell, and can barely move, and I'm really struggling to keep the house clean, or to even have a shower'.
“So the group get it, but family and friends might say ‘Yuck, you haven't had a shower for a few days'.”
The Facebook page, Shepparton ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) & Fibromyalgia support group, has 300 members.
Mrs Dodson posts up-to-date information and research about CFS, fibromyalgia, myalgic encephalomyelitis and related conditions to keep people informed.
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