"My whole life for the past 14 years has been one long slide into humiliation and rage."

Thinking about the fact that it's 14 years since I really started to fall apart health-wise. And while there have been varying parts that have been steeper slide than others, I feel like humiliation and rage are both pretty damn perpetual feelings when you have severe Crohn's.

Humiliation? The soft kind, like feeling humiliated because you're left out of things because you've been unable to go along for a while so you're dropped, forgotten. The hard kind, like making sure your half hour walk to work has at least five public bathrooms along the way. Like dealing with a temporary colostomy at 23. Like having your bag leak the second time you sleep with someone. Like wearing period undies every day not because you're menstruating but because you can't trust your gut not to let you down.

Rage? At all of the above. At the way that your twenties were stolen from you and your thirties are still unpredictable at beat. At the 'oh IBD? yeah I have IBS too' replies. At the having to soothe your mother through the possibility that she might need an ostomy (at 71). At feeling so behind on life because of all of the above. At not being able to take any over the counter painkillers besides panadol. At not having the ability to spend extensive time overseas because of your medical needs and expensive drugs.

I try not let my Crohn's control my life or to focus on it too much. Or if I do, I try to focus on the fact that I haven't needed surgery in 9 years. Or that I haven't been hospitalised for a couple of years now. But days like today, with no obvious trigger, with no cooperation after dosing on loperamir and tramadol... I just want to scream.

And Raffi's words ring really fucking true.

it pisses me how i will always be inferior to that guy in the eyes of my chem professor (I LITERALLY HAVE BETTER GRADES THAN HIM)

My Crohn's can suck it.

[covered in blood and just finished with crying hysterically]: who else up writing their personal project report

niche post but I need to post this somewhere. I have IBD and often my iron levels (feritine specifically) are low, I've had to take iron pills 2 or 3 times by now. The difference those make is immense! And I need them again, but my nurse will call me on Thursday and hopefully prescribe them so at the end of the week I'll have them, but for now it's just struggling to get through the day and my period just started. So I'm fatigued but next level, I slept for 8h, felt awful, but went to my lecture and than I came home and slept for another 3h or so. I'm in the beginning of my twenties, I should be doing so much more! I want to be doing more! This is ridiculous! And it makes me so sad, but that makes people uncomfortable. So I told my mum like half joking 'ooh haha wasted my day, because I'm just so exhausted lols' and she said 'yeah I'm tired too, I took a nap this afternoon'. Like she is almost 60 yo, no offence but yeah that checks out. And a 1h nap is nothing compared to a 3h nap just to not start crying from exhaustion at the end of the day!!! My mum frustrates me so much, its actually crazy how often I talk about myself and she twists it to talk about her general experience with the topic I'm talking about and than talk about something completely different

Mock exam week but the day before I was on character ai

Anyway, hopefully I'll at least be able to maintain my current grades as it is. I started studying too late for this anyway....

listening to my gut but i have digestive issues

GUESS WHO SLAYED THEIR PAPER 2 MATH AA SL!!! ME!! IM A GENIUS FRFR

At this point I don't even know what I was thinking when I decided to take English B, Maths AA, Chemistry and Physics for my HLs

Reminder

Dearest me, thank you for holding on, I'm sooo proud of you 🍓

To all those who are fighting against autoimmune,

To those who are fighting their depression,

To those who keeps holding on,

To those whose voices were never heard,

To those who stuggle with life,

To those who need to keep on a strong face,

To those who keep believing,

To every single soul that bleeds, and to every one of you, I hope that you will not give up. Please keep fighting, keep surviving. Take a rest when you're tired, it's fine to take a break. Don't go too hard on yourself. It's ok, know that someone else on this Earth still wishes for you to survive.

I love you, stay safe, stay alive, and just do your best. No matter the outcome, I'll still be proud of you.

Love, Nai.

UC Diagnosis Anniversary

Its close to a year since my diagnosis, and looking back, I have no words. No words to describe the derailment that my life went through. No words to describe the grief that I am still processing. And no words to tell you how I feel.

I have achieved remission, yet life will never be the same. There will still be days I feel eternally exhausted, that I am in a never ending rut trying to catch up on everything I missed out, while more just gets added to the 'to-do' pile. The uncertainty has just increased by a 1000 times. The anxiety is immeasurable.

Half the days I keep gaslighting my symptoms tricking myself into believing that it is all in my head. Other days I wonder if its the disease or the medicines or both, that sends me into an anxious spiral or leaves my bones and joints hurting. Some days I appear totally normal, no one (including me) would even believe that I survive on the 8 tablets I swallow everyday. Other days, like today, I just want to curl up into a ball and go to sleep. Some days I force myself to take a break, read a book, crochet or go to sleep. On others, I am trying to keep my spirits high so I can meet my thesis deadlines.

I am tired of being sick. I am tired of complaining or telling someone "my joints hurt and I am exhausted". I am tired of the extra attention I get because of my illness. I am also tired of just being tired.

On days like these, all the affirmations and positive self-talk learnt in therapy isn't enough to drown out the critical voice that says, 'you just have to push through and keep going, that is the only way you survive and make something out of your life; the only way is to pick your self out of the gutter, bunch up all the pain and tears and emotions and throw it under the carpet'.

In 1.5 years of therapy I have learnt that throwing stuff under the carpet is never the solution. It comes to bite you in the back some day. But just for today I need a carpet. Better yet, a warm, fuzzy blanket. Except that I today I want to hide all of me, not just the emotional stuff, under it, and stay there until the physical and emotional rollercoaster of things passes by.

due to recent events:

Just calling someone with significant scars on their face "shitface" and laughing about it like you just delivered a great punch line is not an appropriate joke. Not even if that person is a good friend.

I don’t want to be resilient.

I don’t want to have to be strong.

I don’t want to fake a smile anymore.

I don’t want to be told “but you’re doing so much better”.

I don’t want to be reminded ALL THE TIME that I’m ill, not by others but by the constant betrayal of my body!

I don’t really want to life anymore. Not if it’s like this.

But I will persevere. I will continue. I must.

I was looking up things for my gut issues and garlic and onions are apparently closely related which explains why both lead to trouble for me but people are so fucking combative if you specify you can’t have either in a dish. Like yes I know it’s key to the flavor but my guts will turn themselves inside out if I ingest them do you know how allergies work ffs

I have lost track of how many times people bring stuff out with them still in the dish and go “just try it” or try to sneak it past me and I fucking know and the reaction is fast and violent and Debra I will destroy your bathroom if that’s what you really want. The smell lingers.

I’ve been having serious gut trouble for a little over half a year. I got a colonoscopy done and the doctor was like “so we think you have Crohn’s but go ahead and go get some blood work and stool tests done”

Bro. Please, it’s bad enough I’ve had to embarrass myself by talking to y’all about all this, then to have butt exams, and a colonoscopy. I do not want to poop in a cup guys.