I am in my element, when I am planning and organising.

I like the lists. The to-do’s to make. The notes to make. The feeling of accomplishment when things are in their place. The relief I have when things have been done my way, to my particular schedule.

But it runs deeper than just that.

Why do I like to be organised?

Some of it comes from having a plan and sticking to it. Knowing I have an end goal and I like to meet them. I am a goal orientated person, a detail orientated person.

But a lot of it comes from being in control.

I lost all of control of my life when I first got sick and diagnosed with Crohn’s Disease. It’s not a big deal, I thought, it’ll go away eventually; it’s not going to stop me. 

Only a third of that wildly naïve sentence is true.

It hasn’t stopped me, but it is a big deal and it hasn’t gone away.

When I was living my life before my diagnosis, I didn’t have to factor in spending time off sick or in hospital for weeks on end. I didn’t have to schedule in appointments and procedures; trying to fit them into my work schedule. I didn’t have to prioritise my own energy for myself than giving it up to other people.

Everything changed when I got sick and I lost control.

I started to learn after the second, the third, the fourth admission that this wasn’t going to be simple, I was going to have to adapt and compromise in places. I am a very stubborn person, I don’t give in or up easily; so to let my disease have the control for a while, it was hard. I found it difficult to cope; physically and mentally. In the end, the physical changes did ebb and flow, which I adapted to well; but then mental scars of learning to live with a chronic illness took longer to heal.

From 2012 until 2016 I spent a lot of my time controlling and planning for my disease. I planned my hospital appointments, my infusions, my bad days and my horrible days into a schedule. This felt good because I finally had found a way to ‘live’ with my illness; when it was being disorganised and unpredictable, I could plan it into my day. I got used to moving things around when I started to feel unwell. I learnt to not take on too much and I learnt how to spent time with myself. I got good at factoring in my illness into my daily life.

What about now? Is it different?

When my disease was active, I had to respond. Now that I am in remission and my ostomy is here, I have back the control over my disease, the thing I always wanted. It was something I strived for, all those years on medications and feeling unwell more than being well. Now I change my ostomy bag every other morning and that is my disease taken care of. I take no medication, just have routine check ups, I have no need to schedule in more than that. And I love that now. I can now use my organisation skills for other, more helpful tasks.

Being that organised could maybe make you think that I was paranoid and a hypochondriac to my own disease. And I openly admit, it did harden me. The pain hardened me, the constant worry was draining, the loss of missed adventures and broken friendships was hard to deal with. But I believe it’s made me more aware of what my symptoms of my Crohn’s disease are and how I am best to manage them. I learnt a great deal of self care and feeling comfortable being alone –  hospital isolation does that but so does having ‘me time’ too. It’s not been wasted time. It’s helped me develop my self advocacy and it’s been a great tool for connecting better and more honestly with my medical team.

I see positives. I see progress of me. I see lessons.