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Chronic illness, quarantine, and social expectations.

I think there’s one thing that everyone can agree on, and that’s the fact that we’re living in strange times. Toilet paper is being hoarded, airports are empty, and birthday’s are being celebrated on a conferencing app. With the majority of people self isolating and working from home, they’ve found themselves with free time on their hands to try and occupy themselves. Images of perfectly organised Tupperware cupboards are filling my feed, and new “At Home Workout” videos are making their way across the internet. Despite the fact that I’m still working like normal (essential worker over here), I still feel the need to try and achieve these new feats like everyone else. While the past three years my health has improved, I’m still burdened with the effects of chronic illness. Between brain surgery number one and two I was on an incomprehensible amount of medications for my autoimmune condition, and pain medications around the clock. Now, post-surgery number two, I’m ...
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An update of sorts

Nine months ago today I had my second brain surgery. Nine months. While most people relate that time frame to being able to grow a human, to me there are so many more things I could do in that time. I could’ve watched The Lord of the Rings Trilogy (extended versions) 532 times, read the Harry Potter series 168 times, or let my hair grow 4.5 inches. I did none of those. Instead I recovered, I learnt my new limits, and I’ve achieved some things that might be normal for most, but for me have been astronomical. I managed to get a job, something that a year ago seemed so far in the future with all the pain I was having, I volunteer my time to help dingoes that are in need, and I’ve finally been able to exercise some more. That last one was a slow and long process that is still ongoing, but I’m getting there. These past nine months haven’t been all amazing achievements; I’ve had some high pain days that have still left me wondering why brains have to fall out of skulls, my fatigue is st...
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Brain surgery kinda sucks

It’s taken awhile for this blog post to come together, and I wish I could say that’s because I’ve been out living my life and since surgery I’ve had this amazing burst of energy and I just haven’t had the time, but that’s not really true. Surgery was hard, it was painful, and the recovery took everything out of me. Just as last time I was admitted into hospital the night before, I had to have blood tests done, a chest x-ray to make sure my lungs and heart were all looking good, and an ECG to check that my heart was actually functionally well. Thankfully everything was perfect. My surgeon came and saw me, and he made some last minute changes to the plan. Originally he was just going to go in and widen the posterior fossa and take some more of my C1 vertebra out, and leave the dura patch that had been put in during the first surgery alone. But now he wanted to replace that patch with some of my own dura matar from another section of the membrane (the original patch was synthetic), which...
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Brain Surgery Take Two

You know that feeling when you know something’s going to happen and you feel helpless to stop it? When you see the car trying to break but it’s inevitably going to crash, the plate falling off the counter but you’re just a little bit too far to catch it, or when someone trips over their feet a split second before you were about to warn them of the uneven ground. It always happens in slow motion and there’s always that sinking feeling in your stomach, like a lead weight. Leading up to my most recent neurosurgeons appointment that lead weight followed me around constantly. The main issue with chiari is that because part of the brain is coming out of your skull it prevents the cerebrospinal spinal fluid (CSF) from flowing correctly between your brain and spinal cord, and this can cause headaches, especially when sneezing, coughing, or laughing as these all raise CSF pressure and because of the blockage it can’t equalise properly, difficulty swallowing is an issue, pain in the neck ar...
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