Michael Towers struggled to attend or afford therapies he desperately needed to function at the most basic of levels before he gained access to the National Disability Insurance Scheme (NDIS).
The 37-year-old Gold Coaster has Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and postural orthostatic tachycardia syndrome.
Both conditions cause extreme energy issues, pain, loss of ability to walk, and cognitive issues; including an inability to read and write properly, and sound and light sensitivities. Digestive issues can also be severe during a flare which means Michael’s diet is extremely restricted.
“I cannot stand for more than a few minutes at the absolute max. My condition leaves me with the inability to read or write for longer than a few minutes at a time without getting severe payback,” Michael said.
“I have experienced these conditions since I was 15 to a moderate degree, but they went undiagnosed until it became severe seven years ago when I was 30.
“I have been too unwell to go on holiday or even physically or energetically leave the city I live in for over seven years now.”
Prior to being supported by Carers Queensland’s Local Area Coordination Partner in the Community Program to access the NDIS, trying to attend basic physical and mental health supports was a daily struggle for Michael.
“I heard about the NDIS through Partners in Recovery facilitators who were working with me to help with the secondary mental health issues that came from one day being able to work and walk, to the next day losing everything,” Michael said.
“My planning meeting was with Carers Queensland, and I went in there just upfront and honest, and the woman was just so helpful and understanding of where I was at, I had trouble asking for help, but I clearly needed it. I'll always be thankful for that.”
Michael now receives supports to help him at multiple levels, including help with meal prep and transport to appointments because he is unable to drive. Importantly, he also gets help with community access and social support.
“Most of my life is spent inside doing home physio or resting, it's everything to me to be able to get out once a week in that capacity,” he said.
“I also have access to treatments like physiotherapy, psychology, and things to help level my nervous system so I'm able to function, even if at the most basic levels. I didn't have that before, and it's made a huge difference.
“My treatments keep my condition stable and prior to NDIS support, I couldn't even afford the transport to do them, let alone the sessions themselves.”
One of Michael’s biggest accomplishments is the recent publication of a comic-style book titled Chronic Fatigue Superhero: The Hero with ME/CFS – POTS – Fibromyalgia etc etc.
A true labour of love, it took him five years to write because of severe limitations and flares often lasting months at a time, rendering him unable to hold a pencil.
“I started drawing this on the first day I ever woke up and couldn’t get out of bed,” Michael said.
“The idea came to me randomly and being a writer who was too weak to actually write, I thought it might be the only way I could physically express myself at that point – to just draw something simple for 10 minutes a day before crashing again.
“At the time I was searching for a lot of answers and found a lot of the online spaces to be full of pessimism and empty on hope. I really wanted to put something into that space to share hope, and laughter.
“After the insanely difficult journey I've had, and with me not being able to complete or even start so many projects, I wanted to make this book to show myself and others even when we can't do much, we can do something.”
Michael hopes his book resonates with chronic illness patients with autoimmune diseases, ME/CFS, any types of fibromyalgia or autonomic dysfunction, as well as people whose condition or disability affects their energy or ability to do things the way most healthy people can.
“Finishing the book was a process of perseverance, patience and never allowing myself to give up,” said Michael.
Carers Queensland can support you to find out more about the NDIS, to apply for funding and to help you get started with the NDIS.
If you have a disability but are not eligible for the NDIS, Carers Queensland can help you identify and link to options for support in your community.
You can also contact Carers Queensland on 1300 999 636, or firstname.lastname@example.org