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 still pretty relevant and there are times where getting out of bed is my greatest achievement of the day, and the stomach issues are still there and flare up pretty badly. But, like always, I’ve managed to go on despite these things. Chronic pain and illness teach you a lot in life, the main being that if you let every ache and pain stop you in your tracks you’re never going to be able to leave the house.

This milestone doesn’t come without apprehension. Nine months after my first surgery is when my symptoms started coming back. It started with dull headaches that would flare up and last for days and leave me exhausted, then went onto a headache all day everyday, and finally all the classic chiari symptoms. So while I’m grateful to have had these past nine months relatively headache free, all I feel is unease because I want another nine months with few headaches, and another after that, but with chiari you never know what’s going to happen.

Any time I speak about my progress I cross my fingers just so I don’t jinx the advancements I’ve made. You see, because of that surgery I’ve been able to work, to become a somewhat normal 22 year old with a job, and while work usually leaves me washed out and long shifts with an inevitable headache, the headaches themselves are easier to get under control. I think that’s been the biggest improvement, I still get headaches from chiari, but they’re so much easier to get back to a calmer baseline.


So the next few months I’ll cross my fingers and hope I don’t have a repeat from the first surgery, I’ll keep going about my life and get through the long shifts over this Christmas period, and I’ll check in with my doctor so we can closely monitor my symptoms and I’ll finally be off all the medication by Christmas. Yup, you read that right, no more meds. This time two years ago I was on over ten meds a day, last year down to seven, and this year, none. That might possibly be my greatest achievement over the last nine months.

Comments

Post a Comment

Popular posts from this blog

Doctors, Doctors, Tests, and Scans

The fog surrounding my health has cleared just a little bit. These past few months have been a little hectic. Just after my birthday in October I had a neurologist appointment and we went through some of my other non-chiari symptoms, and he suggested that later down the road he would send me to an immunologist. After my trip to Thailand fatigue became a huge impact in my life. I was struggling to do things that otherwise I would have been able to do in an instant. So, after waiting three months for an appointment I finally saw Dr B. I’m not going to lie, I was nervous as hell going into the appointment. I felt like I didn’t have any true symptoms, unlike with my chiari and so I was scared he would look me over and say it was nothing but the effects of diving. Thankfully I was wrong! He joked and made me feel like an actual patient worth helping. So there were loads of test to be done. And the results: an anti-Ku (anti-goo) antibody in my blood. I’ve tried to look for some explanat...
Read more

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 ...
Read more