the devasting hope of love

My cousin got married today. My last wedding of the year. During the reception my uncle asked when it would be me. 

Three weddings in one year. 3 relationships I am only an observer to. 6 people whoes lives have coincided with mine. Their time is now. Do I dare hope that one day it will be mine.

I live in two minds about love and relationships. I see beautiful couples who are held together through a common goal.

Couples who buttrrss each others lives and dreams.

Couples whoes eyes only hold each other speaking a language nobody else know.

Sadly I also see so many couples held together by circumstance. 

The cost of leaving is too high. 

The children they say are too young.

The bonds of friendship have frayed and all that remains are frayed strands of old promises. 

Routine is now ritual no longer born of love but of perpetual motion. 

They no longer hear each other. As an outsider it’s very strange to observe a couple who's language of foreign to each other but you the outsider understand them both.

I wonder do they fear leaving this world alone?

Perhaps because I see too much of what I don't want. That what I do want feels like a distant mirage of hope. 

Beautiful soul meet beautiful soul. Some of us were broken are slowly mending and now we endevour to breach into this known world. Behind the curtain lies a miasma of frailty, tension, desire, anxiety, hope and the dastardly feeling called love.

 So as I sit through this wedding and clap for another beautiful couple, I hold on to this devastating hope and respond I'd like to be married one day. To a person who's self is peace and soul feels like home.

Dear Diary, it's Day Surgery Day

Dear Diary,

It’s Day surgery day. That means an early morning start, with no sleep because I've been anxious all night about one thing.

My last meal was at 2am and I am not allowed to drink any water. Today will be a lot of waiting and shuffling around.

The nurse checks me in. Consent signed✅️ Not pregnant✅️. Time to wait. The next visitor is the anaesthetist. I always ask what she plans to give me after a bad experience many years ago. I mention being cold the last time I was coming to from being under K (relevant for later). A trick question - "what I ate for breakfast?" "Nothing" - and a few reassurances, she double checks of my allergies and I wait some more.

The surgeon comes round next to check we are on the same page about today’s procedure. Consent forms are checked again. I make sure to request my sick note now because post anaesthetic delirium will make it hard to remember. This is step 1 of a longer term plan so it should be straight forward. 

I'm shuffled to the next floor to wait as I'm up next. Time to get ready to go under. This is the part I was anxious about - the cannula in my hand. I have had these many times and it still isn't easier but she is good and we manage after a little wiggle on the first try… God be with me… 2…1. 

The body-mind disconnect while coming out from under is such a strange feeling to describe. I don't realise I'm shivering until a nurse offers a warming blanket. I’m struggling to move my arms for observation. I'm not sure how much time passes. 

The next time I manage to look at a clock is 3pm. I need 2 hands help me to the loo as the meds wear off so that I don't fall in. Nurse and a sister. Small but strong arms support me either side. Look up and straight - no matter how much you want to close your eyes - you won't fall. 

A few hrs later and a delay from pharmacy I'm able to leave. First stop food.

13.03.25 Day One again - Crohn’s all over again

There’s one star in the sky that my phone is able to capture as I try to take a picture of the night sky to commemorate the day I go back into the trenches of a flare. The numbers are all bad. I was hoping the test was a fluke or that things could be managed with diet but today I got the news. New meds, liquid diet for 6 weeks, and more testing.

I am grief. Deeply sad and disappointed. I want to cry again the most. I want to weep for myself, I feel so sad when flares happen. I’ve never thought that life should be something that happens to you. You are meant to make things happen in life but there are times when life does happen to you. And this illness happens to me. 

I’ve been okay for a long time and managing for a long time, and it turn out all that managing and okayness wasn’t enough. And my heart breaks some more. It means I now have to find a new way to be okay. I am heartbroken.

I was meant to travel New York this year and make a big thing of it. NY in MaY. I was meant to be booking my flights whilst hanging out in the waiting room for my MRI scan. Travel long-distance takes its toll but I could plan around it. May is a little over 6 weeks away. And now all I can think about is “Will I even be able to eat on the trip.” I don’t even like American food. Their chocolate sucks, and I can’t eat pizza or pretzels. 

Then I think about about my plans for this month and year, how am I going to explain this to people again. Sick again. Sorry we can’t do any food related plans for a while, or anything to strenuous, or too far from a toilet, or for too long. They kind of know my condition but they’ve seen me well for 10 years. What will I do with my tickets to Beyoncé and Kendrick.

Just when my life felt like it was getting normal, routine and medications down and I could do just about anything. Even go back to school. A spanner has been thrown in the works and I have to find a new way to keep going. I want to cry. I was good. It’s sounds silly. I did everything I was meant to, eat well , sleep well, stayed active, reduced stress and then and then...

This is day one. Again.

Things are about to change quite dramatically just when I was feeling normal. Truthfully it is easy to forget how horrible Crohn’s is when things are going well. I could control my symptoms and predict them. Now I like I’m heading into a dark cave with no end in sight.

This year I wanted to feel confident about going out and talking to people and make new friends. I had just learnt how to manage the fear always in the back on my mind when I would go out. I had a routine and system and now…

I’ll take my own advice because I will be okay. No matter what happens. The cards you are dealt don’t matter, it’s how you play your hand.

I’ve changed meds before. I’ve been on a liquid diet before. I will be okay

All Clear - Crohn’s Mental Overload

It's weird to look up one day and realise a whole year has passed. And Crohn’s and Colistis is running a campaign to #FacetheFacts

I started 2023 with hopes of a peaceful year and end it worrying about whether I could find time between my hospital appointments to see the Renaissance film. I didn't.

2024 started with me feeling like I was staring into an abyss and has ended feeling like the skies have cleared and I can face anything.

Let's start with a confession: I used to envy people with cancer. It's an odd thing to admit because I have seen how devastating and difficult it can be to live with. I was envious because the pain is obvious. It's complex how I felt because I often felt my pain was misunderstood but I was so good at hiding it. I was mad that people didn’t inherently understand the problems I was going through without them being told. We understand the paid and hardship that any Cancer brings, yet Crohn’s is still so misunderstood.

I would find cool surfaces to rest on when my stomach aches got so bad they made me overheat but teachers would think I was sleeping in class. Excluding the times I was sleeping in class - quick story

I was falling asleep in Biology summer classes. I was almost falling off my stool resting on backpack out of it. And my teacher yelled my name and said "if you’re going to sleep, get out". so I did. Turns out that was not the right thing to do. I was told by my friends after my nap in the sixth from common room that the teacher had been surprised that i had left. I'd say oops but I do tend to take things literally when I am tired  and he wasn’t a very nice teacher anyway.

Or I would be late to class because I was too embarrassed to use the toilets when others were around during break times. Or the pain I would be in walking or sitting or existing. Or the fear of food I developed during my worst flares making it impossible to eat without anxiety.

I thought I would be able to document my appointments so that others could see the process of going through a diagnosis. A let’s take the journey of discovery vlog. I recorded a lot during this time but the exhaustion of the process and fear really did put any thought of editing on the back burner. And then there was the telling people. It felt wrong to reveal to certain people in my life what i had been through in an online post so I held off even longer. Then who should know you are going to hospital for diagnosis before anyone else. I've had a few people die recently and it was only after they passed I found out they had gone through treatment. I was resentful that I didn't have a proper chance to say goodbye but then I realise how time and distance had separated us. Why would I be in the know? Who makes the cut for a personal announcement?

I also have a thing for dramatic announcements in inappropriate places. But a dislike for people sending well wishes all at once. I was getting ready to start telling family and friends that my mum would need support and to take care of my brother. But those words never came out, because I realise they had a tinge of resentment in retaliation to something someone had said or done. I sat during Christmas as my cousin was shouting about losing a point, would I see this moment ever again? How would people react if I said it now. Then in February I got the all clear. Well just more Crohn's to be exact. And while the weight was lifted, the fear and stress I had taken on would not dissipate easily. The C-word had felt so abstract till I was faced with it and suddenly I realised that I was not mentally invincible.

Now the question I wonder is should I tell people now so they understand why I had been acting so weird and sentimental. I'm still seeing the docs a little more than normal to monitor the Crohn's. And then my cousins father got sick and then was diagnosed with Cancer and my experience fell to the back burner. Now I wouldn’t be able to discuss it. I had just experienced the diagnostic process and been able to complain about my preferred anaesthesia (to a doctor). But here it was in front of me. Grateful it wasn’t me, sad it was him, confused as to how life had suddenly turned out like this. And then he died. 

Could you call this a confession post. I don't have Cancer. I do have Crohn's. 2024 did not start out the way I had intended but as is my favourite trope in Turkish dramas if the season starts well it gets broken and if it starts broken it gets fixed at the end they all learn to love a little better and cherish those around them a little more. - The post originally ended here but my counsin’s dad died in November when I had originally intended to put this out so I made a few edits to honour that. So I guess in true Turkish drama fashion someone beloved died in a final plot twist. 

Phone a Friend

 

Talking about Crohn’s

"If something happens I will tell you"

I recall the days I used to sneak off to drink Modulen with Nesquik Magic Straws during lunchtime. Or the days when I'd sleep in the medical room because I was already exhausted by 11am.

The inevitable conversation we all have with friends... "I have Crohn's disease" followed by confusion or, in the rare instances, "That thing Dynamo has?" ...can be a challenge to navigate. As a child I would hide my condition (as much as a 6 year old can) and growing up I avoided talking about it out of sheer embarrassment.

Secondary school, was the first time I spoke about my Crohn's to friends. I'm not even sure how the topic came up, but I do recall some very "serious" conversations on park and school benches. As I've grown older these conversations have become easier and more casual. In the last year, I have probably spoken more openly about Crohn's to my friends, than in our 10+ years of friendship (no benches required).

The lockdown slow down has taught me many things, but especially: how to be more open about my condition. My friends have always been my first point of call whenever something good has happened or I needed advice; but my condition was always a thorny subject for me. Over time though, I've come to realise that, talking about my treatment, and the whole host of other things that accompany Crohn's, has allowed them to understand this part of my life better and in turn me as well.

I still feel uncomfortable when they express concern for my health "how are you" is a question I want to dodge, alongside the "dating" questions from family. (The answer to both being: "the same as last time") I dislike seeing them worried, and knowing that it is out of concern for me, has always made me feel out of sorts.

Last year I made a promise though- "If something happens I will tell you". I have found that offering information preemptively, allows them to stay up-to-date with "how I am" without me feeling some-type-of-way when they ask.

Are you a sit down serious conversation type, or do you prefer to drop it in casual conversation? Either way, having these conversations becomes easier with time and practise. If your not sure what to say the best opener I've found is "I have Crohn's disease" then tell as much or as little of your story as you are ready to share.

We can break the stigma together. One friend at a time.