About

This is a personal project by me, Matt Smith. I've been living with ME/CFS since 2020 and have been writing about my experience as a way of dealing with it all. I've written them for me. I've had no intention of sharing them with anyone, even my family.

It is totally against my nature, upbringing and comfort levels to put this online. A lot of people in my personal life don't know any of this, let alone my professional life. It feels incredibly risky to talk about this publicly as people may not hire me if they think I won't be able to do the job. Despite whatever people say about inclusion and "bringing you whole self to work" it is a valid concern that people will not want to hire the guy who's too tired to work.

So why make this site? Why put myself through this?

Two reasons:

It has helped me tremendously to learn about other people's experiences through videos, blog posts and social media. I'd like to add to those stories.
ME/CFS is very hard to understand and I hope that by sharing my writing it may help some people understand it a little more.

My Story

At the end of 2019 I started to feel "off". Tired, sore, sick. Not bad enough to really worry too much about it. Maybe I was getting old? A little stressed? Was it burnout? A few months later COVID-19 hit Australia and we went into lockdown on-and-off throughout 2020. I continued to feel more sick, sore and tired but put it down to being in lockdown. I kept testing negative for COVID so it wasn't that.

Then I had a heart attack.

Well, I thought I did. Intense pain in the left side of my chest and shoulder. Heart racing. The room was spinning. I was just stuck there. I didn't call for help or move at all. It was like that for an hour or so then it started to calm down. I went to sleep that night not sure what had happened.

When I woke up I still had chest pain. I was dizzy and disoriented. I went to the hospital and they did a blood test to see if I had a heart attack. My heart rate was abnormally high but the test came back saying it wasn't a heart attack. The emergency room doctor said it was most likely pericarditis and referred me to a cardiologist.

From then on, it was like I was in a crime thriller with a series of detectives trying to uncover what crime was being committed inside my body. The cardiologist ruled out any heart issues. They checked my lungs for blood clots. They ran extensive blood tests. The chest pain was the main focus but I was increasingly fatigued. Everything was just too much effort to do. I asked about anything I could think of. Was it my thyroid? Eating made me sleepy, was it diabetes? Was it Lyme disease? Allergies? Mould intolerance? Heavy metal poisoning? Cancer? On every test I seemed perfectly healthy. But I was getting worse. No energy, muscular and joint pain, brain fog, chest pain, random internal pain, migraines, restless leg syndrome, PEM.

After 8 months I was diagnosed with ME/CFS. There's no formal test for it. Basically if they can't find anything else, and you have all the symptoms, they diagnose you as ME/CFS. I call it the medical "too hard basket".

For almost two years I was pretty much bed-ridden. I got out of bed to be around my children before and after school. In that time I struggled to do anything, even watch TV or read. It required too much energy to take in new information.

The year after that I was what they call sofa-ridden. I could be a little more active in very short bursts but could not go too far from somewhere I could rest. I spent most of my time watching reruns of shows from my childhood, it was still too hard to take in new information.

I mention the reruns because it's a good example of the difference between being really tired and what you experience with the fatigue of ME/CFS. It feels as if your entire life force has been drained. When I had enough energy to talk, I slurred words. When I had enough energy to think, I struggled to remember very simple things.

Right now, in 2025 as I write this, I am much better. Still not 100%, but much better. I can't exert myself but I can participate in very day life. If you saw me on the street you wouldn't know I was sick. I'm still in pain, I still have brain fog, and life is still extremely hard and overwhelming.

Plans for this site

The initial plan is just to post my writing and see what happens.

I'm also open to exploring a few other things with this site, like:

Guest Posts

I'm open to guest posts by people with the same lived experiences, or their carers.

Guestbook

I've added a guestbook for the site for people to leave their comments and feedback. I'd really appreciate to hear from you.

Contact

The best way to contact me is through email at hello@thisismattsmith.com.

You can also find me on the following platforms: