A brief break in time

It’s still a crazy phenomenon to be classed as chronically ill at nineteen. Never would I have thought that I would need to plan days a head for activities so I can rest and make sure I have enough energy to actually do what I want. Five years ago I was the person who was constantly moving. A leg would be bouncing or I would be running. Now, it’s a stark contrast. A planned weekend in Melbourne was something that was a little daunting, but exciting nonetheless. There was a constant thought in the back of my head of what to do if something was to happen, like an intense headache, or a day where I was so exhausted I couldn’t get out of bed. But, that didn’t happen.

I’m extremely lucky to have a best friend who understands my health. She’s seen me when I can’t move, when I’ve gone pale and almost thrown up in Kmart, and she’s sat by me in hospital so I wouldn’t be alone. Knowing that she wouldn’t be annoyed helped ease the worry. Our second day in Melbourne was my worst. I don’t know if it was because my body was worn out from flying and an early start, or from the fact that I haven’t eaten huge meals in a very long time. We had planned to go out for breakfast and we had a delicious meal, and then we were going to the museum. On the way there my stomach started to play up. I got extremely nauseous and the pain was horrible. By the time we reached the museum I headed straight for the bathroom and promptly threw up. There were two more trips to the bathroom before Sam and I decided it was best for me to go back to her brothers and sleep. I can now officially say I’m well acquainted with Melbourne Museum’s bathroom.

This was my first experience with being extremely sick in public. I’m not sure if I should be proud of the way I handled it, or angry that it happened. Despite this episode the rest of the trip was a hit. I ate a lot of food, I laughed until I cried (multiple times), and there was a glimmer of my old self. I didn’t really have to worry too much about how I was feeling, and we managed to fit in “recharge sessions” aka naps, into our days so I was never truly exhausted. There was a night out where I truly felt like a teenager! We went out to a 21st, and what made it better was the fact that I could sit down about 99% of the time so I didn’t feel horrible. This was the night where I drank till I was happy and laughing with my best friend the stupidest things. There was also a midnight snack of doughnuts, which just made everything that much better.


I’m now back home and the trip has caught up with my body. The only time I’ve gotten up from the couch was to pee (tmi?). You see, this weekend I could somewhat forget about my poor health and the only reminder was having to take my meds twice a day. Now I’m getting ready for an endoscopy next Thursday to try and sort out the stomach issues that I’ve been having and maybe get an idea of what’s going on. I’m back to having pain meds by my bedside, in the kitchen and the lounge, just so I don’t have to go too far to get them wherever I am in the house. It’s those small things that give a hint to how my body is constantly working against me, but this trip it finally agreed with me… for the most part.

Comments

Post a Comment

Popular posts from this blog

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

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
Read more

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