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Written by Jop

Before I got sick, I was working in change management for a large corporate. I’d recently been given a promotion to a job I was really looking forward to.  I was fitter and healthier than I had ever been in my adult life. I went running or to the gym every morning before work.  

I love sports, particularly Aussie Rules Football. I played for eleven years. When the Great Western Sydney Giants launched, we became members. I used to take my kids to watch them play. It was very family friendly with lots of activities for kids. My mates still take their kids. 

I’m a writer. I completed a Master of Arts in Creative Writing and wrote a novel (sadly never published) as well as many serials and short stories. For most of my career, I worked as a Communications Manager, which involved lots of writing. I also loved reading books every day on the train going to and from work.

I remember the day I first got sick, 1 December 2016. I was in a meeting and I could feel some flu symptoms kicking in. I had bronchitis, caused by a virus. I was going back to my GP twice a week with a range of symptoms. After a few months, he said I was ticking all the boxes for ME/CFS.

Two years before I got bronchitis, I suddenly got double vision. I couldn’t drive or read anything. I went to an eye specialist who said it was a virus impacting one of my optic nerves and would clear up after a couple of months. It never did.

I’m a moderate sufferer. I can look after myself, so long as I pace myself and have regular rests throughout the day. I live by a stopwatch. No matter what I’ve been doing, every 90 minutes I stop and rest for 20 minutes outside with no media, just me sitting still and observing nature. This means I spend about two hours every day doing absolutely nothing. It’s very boring, but if I don’t rest, I’ll suffer.

Physically, I can’t be on my feet for more than 10-20 minutes. Mentally, I can’t concentrate on anything for more than 20-30 minutes.  If I push beyond these limits I’ll be physically and/or mentally fatigued. Plus other symptoms kick in like nausea, headaches, mood swings, insomnia, anxiety, and the depression that follows. Initially, I had a hypersensitivity to noise. I couldn’t be in the same room as my kids. I wore earplugs everywhere. My tolerance for noise has improved somewhat now.

I can still do some things, provided I stringently pace myself.  I can do a twenty-minute walk, and I do a weekly yoga or Pilates class, as I am seated or lying down for most of the class. But I have to sit still for at least an hour or two after any of these activities.

I help out around the house when I can. A simple job like emptying the dishwasher or hanging out the washing I can do, but I’ll need to sit down for a while afterwards. Or it may take me a few shifts to complete the task. 

‘It’s really hard not being able to do the everyday things I used to take for granted,
like working, running or reading a book.’

I can’t teach my kids to ride a bike or go swimming with them. I can’t take them to the football.  I can’t shower every day as it requires too much energy.

I remember reaching a point where I accepted that this is my life now. It dawned on me after a few months that I wasn’t just going to wake up one day and be better. Every day I have to remind myself what I can and can’t do.

I try and focus on the positives, like being able to see my kids every day. When I was working, I’d often leave before they were out of bed.  I also have more time to write, albeit thirty minutes a day at most. When working full time, and with three young kids, I struggled to find the time to write. 

I’ve developed a love for gardening. As I spend so much time resting outside, I sit and look at the plants I’ve grown and take some satisfaction in having achieved something. Unfortunately, gardening requires a surprising amount of energy, so I can’t spend as much time on it as I’d like.

There are so many hours in the day that I cannot do the things I want to do. If I’ve done something physical or mental, then I need to just sit still for a while. I play lots of games on my phone to pass the time, and Netflix has been a saviour.

I’m very grateful to have a very supportive family, particularly my wife who is always so busy. My parents are always willing to help. My in-laws are also a great help and have really helped us financially. 

I’ve been able to claim a temporary disablement benefit from my superannuation. That pays me 75% of my salary for up to two years, which has been very helpful, but it won’t last forever.

I hope we get the funding required for research. Places like Griffith University have made some important breakthroughs and we need to see that through to fruition – diagnostic testing and therapeutic remedies. I also hope that ME/CFS can be recognised as a genuine disability.

Personally, I’ve never felt any stigma attached to having ME/CFS. My family, friends or work colleagues have never questioned or doubted my illness. I often feel my illness is invisible though.

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