New Blog Post Who Dis?

It’s been a while since this photo – I want to share a joke at this stage but, to be honest, it’s quite emotional to see my younger self and feel the pain.

The pain will take a little while to explore, but it mainly consists of feeling defective; a deep sense that there is something wrong with me. This kid, holding his creation—a floating device to enter into a competition with other children—being told to smile, but giving it a half-hearted attempt. This kid feels left out, feeling the pain of loneliness and rejection, purely because I could not understand what was happening around me.

I had no idea that I was locked into the ride of life, moving towards getting older. This ride was both fun and painful; the experiences encouraged me to step out of my comfort zones, but there were also times when the floor gave way without notice and hurt flooded the cabin of the ride. Even though the ride carried me through life, it felt more like life was passing me by.

Now, I can write up this story plus other “side quests” that inevitably found the answer—well, the answer that best suits how I feel.

After the Covid lockdown, like many people, TikTok became a staple diet for joy. Many videos felt relatable—especially the forgetfulness, like trying to remember what you were doing and then starting another project. This type of humorous trait was not funny in my mind; my forgetfulness was a trait I was criticised for a lot growing up. So, hearing the connection between forgetfulness and Attention Deficit Hyperactivity Disorder (ADHD) made me self-actualise that this is something I may need to address, especially if there are medications to help.

I didn’t go to the wonderful world of the mental health industry—said sarcastically. I actually held back for a while because I am not hyperactive. I have family members who give off vibes of hyperactivity, but not me. Until I found the term “Inattentive ADHD,” which shows as ‘spacing out’ or being ‘unable to focus’—the real, simple difference was the removal of ‘Hyperactivity’. This connected with me a lot.

So I decided I should do some tests online. I completed around five different tests, all resulting high in ADHD. Fyona did the tests as well, just to make sure it wasn’t the same answer for everyone; alas, Fyona did not get the same or even a close score. Fyona received low to no ADHD.

So we looked into seeing a specialist. I saw my doctor and she gave me another multiple-choice test—scoring high for ADHD. My favourite part was the fact I talked nonsense for 15 minutes and I still had to take a test to confirm if I had ADHD.

After the initial six-month wait for the psychiatrist, we realised the clinic had not received the referral, and then it was almost another six-month wait on top of the original wait time.

The first session with the psychiatrist was an eye-opener, though not necessarily in a good way. I had to fill out the same multiple-choice test that my doctor got me to do. Then the psychiatrist asked if I had any known issues. I mentioned that I have Auditory Sensitivity, so I find it difficult to be in environments like cafés, public places with many people, or even alone at home with lawnmower noise from next door. The psychiatrist took note of the Auditory Sensitivity, then handed me another “fun” test to fill out. While I was concentrating, the psychiatrist persisted in talking out loud about what he was writing. This honestly felt like a test of my auditory sensitivity—but I later found out he just didn’t take it seriously.

After the form was filled out and the psychiatrist agreed that I may have ADHD symptoms, the topic of sleep was brought up. Apparently, having sleep issues can cause you to have ADHD-like symptoms. So, I was referred to a sleep specialist—along with my first-ever script for dexamphetamines, which I still take to this day.

So, we got a confirmation from a psychiatrist that I have ADHD and I got my medication. I took two 5mg tablets of dexamphetamine and cried—I have never experienced such peace in my head. Since I was the child in this photo, my head had never stopped—until I had this medication.

Sadly, not everyone has the same experience. I fully understand the sadness of thinking of people with such busy minds not being able to get the freedom from their own prison.

Hold your pillow tight, now it’s sleep doctor time!

After an initial appointment with the sleep doctor, I was requested to take three sleep tests. One was an overnight stay at the sleep clinic; they have these beds with an ensuite, so thankfully you don’t need to share a bathroom or a room!

I arrived in the evening, but I was super nervous waiting outside the building and waited until I saw someone else walking into the clinic confidently with a pillow. The common characteristic I have found with all medical testing is that the staff, who have a lot of experience, rush you through the test. In this sleep test, I just smiled and made some slight jokes, but inside I had no idea what was happening.

I walked into the clinic, and the first medical staff member asked my name and took me to one of the rooms. It felt like a dodgy film set, with a camera on the ceiling that is used to film you during your sleep (totally understandable for the clinic, but maybe a red flag in a motel room). Then you get hooked up to “the Matrix”—they use a paste to keep the sensors attached to your skin, multiple on my head and all the way down to my legs. These are used to pick up any muscle movements. I personally thought I would not be able to sleep, but when the door closed and the lights were flicked off like I was in some sort of detention centre—I crashed out.

Middle of the night, I was awoken by a medical staff member who just shined a torch in my face to ‘casually’ wake me up, checked all the vitals, and then left—again, I slept well.

I will skip the process of removing the paste from my body; let’s just say it was like cleaning off hummus that had been in the sun for a few days.

I then did a day sleep test in the same clinic, which is a test to find out how long it takes for you to fall asleep during the day. This was a bit of a shock to the system, being told to lie down with all the wires to the body again and then told to sleep, shortly after being told to wake up. I did this a few times with up to an hour in between tests working on my laptop.

The last overnight test was at a private sleep study attached to one of the private hospitals—with all the usual “fun” parts listed above—except in the morning, I was provided with a continental breakfast and a little encouragement that I could leave as soon as I could.

Finally, the sleep doctor reviewed the data from all the tests. I was awarded the title of having sleep apnoea—this means I may have never had a restful sleep my whole life! My results showed that my airway was closed off up to 70 times an hour—this means I would rarely get into an actual REM cycle. Now I use a Resmed CPAP machine every night and every time I take a midday nap.

So now we have ADHD and sleep apnoea—perfect.

Let’s fast forward a year later to the realisation that I wanted to look into seeing another psychiatrist. Fyona and I quickly found how difficult it is to get in to see another psychiatrist—most other psychiatrists had closed their books at that point and would only consider a new patient if they already had an official diagnosis of ADHD.

So we felt confident—our current psychiatrist would provide this information. Uh oh, they could not provide this information as I was not “officially” diagnosed. This freaked us out—what if this psychiatrist left without notice? We would be screwed!

So we started the journey of finding an official diagnosis, which is actually done by clinical psychologists. Would you believe that there was one available near home!

Let’s pause for a minute—we were running the videography business while sorting this out, so we were able to take some afternoons or half-days off work, while carefully making sure not to lose work. Now I can say it was tough for both of us; I could feel Fyona seeing how much I would push myself through job after job, all the while on the journey of finding out all these little health issues.

So now I was taking extra medication commonly called Nuvigil; this medicine is known to treat narcolepsy. So each day, I would try to get a full night of sleep, then many drives to Sydney from Wollongong for early morning shoots—I would take Nuvigil and dexamphetamines. I thought this was enough, but I didn’t realise there was another issue causing me to be extra tired.

The tiredness got worse and this made me drink more energy drinks in the morning, then Nuvigil, and then extra dexamphetamines. Then later on I would take extra Panadol Osteo—this concoction would keep me awake, but eventually, it would cause liver and pretty severe heart problems.

At this time, I maybe had one social alcoholic drink at Christmas but none throughout the year, but I was getting pain in my liver. After a liver CT scan and some discussions with the doctor, it was clear I had a fatty liver. There were many blood tests to see if the liver issues got worse—until I Googled sources of fatty liver. Paracetamol was one. After cutting down the paracetamol, I was fine.

There are a lot of people driving to work from Wollongong to Sydney—why am I having tiredness issues?

Well, at this point I was able to get my ADHD diagnosis with a psychologist. On the first appointment to discuss why I was wanting the diagnosis, the psychologist clearly picked up on some clues. She mentioned that it would be good to also look at autism and cognitive learning—two topics I was not prepared to check, but I agreed anyway.

I wish to add at this point how lucky I have been to have the opportunity to see so many specialists and get proper testing. I understand not everyone has this, and I would always feel guilty that I was not worthy of these opportunities. In the moment, I would have easily swapped the situation with someone else if it would help, but this time, I wanted to get the answers.

A cognitive study is the process of finding your learning type—this was such a confronting and emotional experience. The psychologist was very kind and the environment felt safe, but watching yourself be unable to answer word associations or simple mathematics… but I scored in the highest percentile in Perceptual Reasoning. This means I can take in visual information and manipulate it in my mind to solve problems. I scored average or less for all other learning skills.

This helped me to understand why I found any task with verbal or written instructions so difficult to follow. This also confirmed that I am better at building or solving problems in my head but have difficulty showing my ‘work’.

The other discovery is the understanding that I have autism, level 1, which means I can take care of myself with minimal assistance, but there are times that it can change to level 2—this was hard to accept.

I found myself just ignoring the diagnosis of autism, which I can now identify as internalised ableism—causing myself to reject the very person I am.

Grief. The next year was just pure grief—there was the grief of understanding I’ll never be able to achieve the goals I once thought were possible.

There was a seed that was planted—this seed was watered by the tears of grief. The uncovering of the “masking” that was saving me in my life—this unmasking process is painful.

So I had found that the increasing tiredness I was experiencing before was from autistic sensory overload from driving to Sydney, including the issues of auditory sensitivity. Instead of enjoying a podcast in the car, I could only focus on the sound of the wheels on the road, distant vehicles, and other distracting sounds. Once I bought a pair of Apple AirPods Pro… I was in heaven! I cannot express the relief I get when I turn on the noise-cancelling setting; I can remove a lot of sounds and my heart rests as it is not in anxiety from the many sounds.

These headphones work so well I looked into audiobooks. I wouldn’t have been able to concentrate on an audiobook in the past—it was just too boring!

But now I have the noise-cancelling headphones and dexamphetamines—I could listen to the whole book!

This opened the door to audiobooks—I have completed 28 audiobooks over a year, whereas I was unable to read any book just the year before (still shocked I made it through university!).

I have continued with my psychologist for over a year and have discovered other bottled-up issues that I wasn’t even aware of—these are still being worked on.

So now we have ADHD + Autism (which is also known commonly as AuDHD), sleep apnoea, auditory sensitivity, and more that I hope to share soon in this blog too.

This has been a journey that has been quite emotional and painful—but I cannot express how much it has saved my life. I once focused on escapism (suicidal ideation) and self-sabotaging all my creative work—only just today, I told Fyona that I actually enjoy reading my previous writing. This is a gigantic improvement towards self-love—I have never liked my own work.

The profound understanding that it is not too late to still have a creative life—I chose to share my creative journey on a blog instead of it being lost in the rubbish pile and my art/writing never getting seen.

This new self-discovery of enjoying my writing has led me to continue a blog that I had left abandoned back in 2016. I have left the posts below as an act of appreciating where I have come from and also proof that I did have more hair!

Thanks for reading—you matter!

Dave Matters 🙂