Excerpts from a book I'll never write

It’s been no secret that my health has been declining this past year and we’re not 100% sure why. There were more days in bed, days where I skipped showers, weeks where I didn’t wash my hair; times mum had to help me get changed. And while my physical body was failing me, my mental state was taking a hard hit. A lot of people turned to us and put it down to depression. “She just needs to get out of bed” “If only she stopped diving the headaches would stop” But we knew there was something else going on beyond chiari and my brain hanging down too low. Brain surgery had helped for a short while, and then I was on a cocktail of medications for that. But I was still in pain. So with the input of my neurologist we saw an immunologist and what seemed like half my blood was drawn for tests to be ran. And the result was an anti-ku antibody. If you’ve been reading for a while you’ll know about this guy and how he affects my joints. How it makes it hard for me to get out of bed because most ...

I can think. It feels wonderful to just be able to write that sentence and actually mean it. And even though it was only twenty or so days since my last post so much has happened! A week after my last update I had an appointment with my immunologist, there was a cancellation and thankfully we managed to get in. We talked over all my side effects and how the prednisone seemed to not be making much effect and where to go from there. The reason I was still experiencing such fatigue was from steroid induced muscle atrophy, and that was putting strain on my joints. So while we we’re trying to fight the joint pain caused from the anti-ku antibodies with steroids, it was causing even more. Then there was the weight loss from my lack of appetite, it wasn’t too significant but enough to be a little concerned for. The numbness on my face he put down to the steroids, but he wasn’t too sure. My racing heart and hand tremors he could be sure were the steroids. So the final verdict was to lower the...

It’s been a month since I’ve started these new medications and I don’t know if they’re helping. You would think that since it’s my body I would know, but I honestly don’t. Sleep seems non-existent, and I’m lucky if I get six hours a night. I’ll often find myself awake at 2am, staring wide-eyed at the ceiling wondering how I haven’t turned delirious. My brain is in a constant daze, and I struggle to think. Going from someone who had a response on the tip of my tongue to not being able to form a sentence after a few moments is the most frustrating and brain crushing feeling in the world! Then there’s the wonderful effects prednisone has had on my body. I look like I’ve had my wisdom teeth out, and my face is constantly swollen, my nails have taken a beating and have thinned out drastically. Before they were strong! They could grow and never bent or broke, now they bend back and snap and have cracks. Then there’s my hair. I know I joked about it thinning, but it still sucks. My lips ...

I’ve never been nervous or scared about putting something in my body. From eating Huhu grubs to getting my belly button pierced at 14 with my mum standing by my side, I’ve always been confident with my decisions. The way I see it, my body is the only thing that I’m stuck with forever, so I better make sure that what I’m doing with it is something that I can live with. So here we are, just over a week after my latest immunologist appointment and about to take medications that could have some pretty serious side effects. The last medication that I was on, plaquenil, wasn’t working. I still couldn’t manage to go up more than one and a half flights of stairs without my knees feeling like they were being torn from the joints. By the end of the day my hips, knees and back felt like I had been training off 10 meter for a double session. I would wake up with my thighs feeling like I had done a million squats during the night, and let me tell you, I did not have the figure for that! That l...

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...