Day 12 @ TTSH

by - Tuesday, April 30, 2019

Gonna be yet another really quiet day today.

It’s the end of the month already. How time flies. I’ve been in and out of here for 3 weeks now. Got ruled contact risk today and am not allowed out of the ward. No one to talk to, no visitors to expect. Family’s busy for the day, Kimmy won’t be dropping by today, everyone has their commitments. And I am stuck here with nowhere to go. On the bright side, it’s a Public Holiday tomorrow. Someone’s bound to be free to drop by, I guess? Neighboring visitors wouldn’t shut. Berak uncle wouldn’t stop going on about wanting to berak. 6am since, it’s 2:46pm now. His stamina amazes me.

I’ve been in and out of slumber because of all these medications, but it’s so hard to sleep. The worse would probably be painkillers that knocks you out fighting with 160mg of steroids that gives you energy boost. My mind and body is in an extremely confused state right now, I think I really need to get out and take a walk. But the only space I could go is to the vending machines and stare into emptiness. Sitting there all alone gives me a lot of space to sort out the chaos going on in my head. It feels sad, but amazing at the same time. A load off my shoulders, and off my mind.

Came back to my bed to see my group of consultants in charge surrounding my bed with their rovers. Tip tapping on their keys as if writing a thesis research report about this 0.1% case of AOSD in Singapore right now. Sure I am a guinea pig, something new and experimental for them, honestly though, I wasn’t ready for the news that they were about to break to me.

Here I am, all alone, with 6 different consultants, telling me my life after AOSD.

There is no cure to this disease.

Well, ain’t gonna say I didn’t see it coming. I will get better, but I will never be well again. I don’t know how to feel. What was the cause? There are no cause. No prevention, no cure either. I can’t stop it from attacking, and I can never be prepared for it to relapse. Days before diagnosis was hell. Thoughts of me being unable to move on my own, constantly in pain and not being able to do anything crushes me. To know that it will one day happen again really scares me. I recalled the night at NTF when I was running a 41.3°c and nurses were not attending to me. I was in delirium. It kinda felt good, but I could also feel my soul slowly slipping away. When they found me in chills and shivers, machines started beeping away. I felt so light, and floaty. It was a reeeeallly weird feeling. There were no pain, no heat, I felt like I was lying in snow. Everything was so soft, like I was swimming in clouds.

In reality, it was really just a bunch of nurses and Kimmy smacking a hell lot of cold cloths sponging me down to pull down the raging fever. Guess they were just 1 step away from throwing down a ice bucket down my spine to make me go from 41-0.

It’s a really silent day today. No one visited, except my parents dropping by with my specially crafted dinner. Diet is a problem now because my steroid dosage is way too high. Plenty of food to avoid because of all the side effects from the steroid intake. Liver enzymes isn’t looking too good, white blood cells count are too high. Blood sugar is raging due to steroids, on the bright side ferratin levels finally dropped to a healthy range. Here’s what making me real sad. I actually really want to eat a lot of stuff. It’s tough now because I have to watch my blood sugar intake as long as my steroid dose is above 100mg. It really isn’t helping to know Gongcha is right downstairs, sigh.

Still feeling really confused. Yet to tell anyone about all the after care pep talk I had earlier with my docs. I am not ready to announce it tbh. Well, not like they didn’t see it coming but the amount of burden I’ll be adding into everyone’s lives?

Am I really ready to have this complete change in my life? One thing for sure, once I step out of this place, I am no longer a normal person, ever. I am a living time bomb that may drop dead anytime.

“Your condition is not mild.”

All I could do was smile and laugh it off. They’ve been drilling this into me for the last 2 weeks telling me how serious this actually is. Not like there’s any difference today. Only upgrade was that my condition isn’t something that would go away like other patients. I’m one of the unlucky ones that has to live with it, hoping it will never relapse. They left the ward, and here I am all alone again. I honestly don’t know how to feel.

A barrage of emotions just hit me and I started feeling so confused. I was angry, but oddly at ease. I had so much rage for everyone around me, but yet I feel too numbed to be bothered anymore. These few days showed me a lot. A hell lot. People who truly cares, and people who showed up just so they get comfort from seeing me. Parents are blaming me for getting unnecessary jabs to trigger this disease. Kimmy has to be prompted to take care of me. Drilling him into medic course was probably the best thing I’ve ever done to his life, I guess. He is at least useful with the basics when push comes to shove, but it probably drains him out a lot because he really didn't ask for me to be in this state. He hasn’t been staying late much these days tho. Let alone mention visitations. Prolly cause I need less attention now that I could move on my own. What luck to be marrying someone and have her falling ill to a chronic disease right after the solemnization.

What am I gonna do with my life from here on out? Hey, there is no cure and you’re a time bomb. Once you’re out, you’ll be out for months again. So how am I supposed to get a job? How am I gonna pay for all these medications just to keep myself in check? Hell, I’m one in a million. Its a really twisted way to be special right now, no kidding. And I really don’t need it.

Medication been fucking up my mood and emotions a lot these days. I don’t even know who I am right now. Are what I’m feeling really what I am feeling? I’ve been trying to sort things out but yet I’ve no idea what exactly I am needed to sort out. My head keeps ringing, “Your condition is a time bomb.” “There is no cure, you have to be really careful.”

Ye, okay. And so what now?

Rheumy nurse came over and sat me down, and ran me through about life with AOSD and steroids, as if I am going through some kinda marriage counseling shit yknow. It’s fucking weird. But ye, it was necessary I guess. There were a lot to take note, like things I could eat, things I couldn’t. How is life with steroids as long term medication, and yadah. Also the precautions I have to take because of the steroids pulling down my immune system. Places I could go, places I couldn’t. So much is going on right now, I really just wanna drop dead and not care, but I am really feeling better and I have no intention to die yet. Then again, all these meticulous lifestyle and habits is freaking me out. I’ve yet to even act on it and I am already freakin’.

I feel like a newborn trying to learn how to live life all over again. I’ll probably do well reliving life at 27. I think?

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