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.