Life Lately | Being Organised

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.

Life Lately | The Guilt, Oh The Guilt

Disclaimer: This post is not happy and positive. Sorry, not sorry. Anyone who follows me, or reads this blog will realise there has been a little bit of a lull in my posting. And somehow feel like there is an explanation due as to why. There are good and bad reasons to why I’ve been unusually quiet in my sharing of my experiences of living with chronic illness. And they may feel like excuses and not at all significant in the big scheme of things, but they are honest and truthful – my primary goal here. I thought about not sharing, […]

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Life Lately | Struggling in The Heat

Guys, Summer is not my friend Now don’t get me wrong, I enjoy summer but I like to be inside enjoying it. I hate being too hot and just prefer to be cool instead of roasting myself in the sun like a chestnut. I’ve felt this way for all of my teenager years, into adulthood and it’s been a struggle to have a good summer. Working also added some drama to this too, unbearable traveling to and from work, both on public transport and driving, I just always long for the Autumn around about July. What had made my dislike […]

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Life Lately | Getting My Career ‘On’

Learning something new filled me with so much excitement! There is no fear in me, not these days. Of course, I still get nervous and anxious but I do not fear the unknown. Given my recent past, I see no real reason to be scared. This past month I’ve been in training with my new job. I am working in a medical field and I bloody love it. It is ostomy related but despite the fact I actually have one, stomas and all medical things fill me with excitement; it sort of makes me wish I’d become a doctor. But, I might never have […]

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Life Lately | Stuck, Confused or Lost?

It’s difficult when you have to be a ‘team player’ and ‘independent’ too How many jobs have I applied for when this phrase is used time and time again? It is of course a valid and acceptable quality for most candidates. Prove it, get the job, work hard and this is like second nature. But what happened when you haven’t worked in over a year and your independency is higher than being a team player? Mostly, I am out of practice. I can’t be a team player when I am blogging: that is for me and only me, I organised and motivate myself […]

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Life Lately | The Big Move

The heat is on, so to speak. It is a week until I move. One week, a whole seven days and packing is hitting me like a brick. When did I accumulate so much stuff? It is giving me all the anxiety and stress I was hoping to avoid by being proactive these last couple weeks. But delays in finding a place to rent meant I had one week less to get sorted. Admittedly, it has been going well and I have every confidence that next weekend will go smoothly. But, let’s talk about what’s actually happening. For the first […]

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Learning to Not Sweat the Small Stuff

I am constantly reminded that my life is different. I look back in time, to years gone by and remember just what I’ve been through. Things are different. So much has changed. Not only is my own life different but I am different too. I’m learning to not let the small things bother me as much as they used to. I have had to accept this since I was diagnosed – a chronic illness forces you to take care of yourself, in ways you wouldn’t have before. You become more careful and calculated, abit cautious from keeping onto of your […]

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The 29th Year

I’ve eaten a lot of cake this weekend. And it was birthday cake too! And I’m sure it’s not the sugar high I’m on, but this has been one hell of a year. Despite being very aware of the fact that this is the last year of my twenties, I want to celebrate all the good – and the bad – things that have happened whilst I was twenty-eight. Hopefully, this is all in chronological order! Quick prelude: My Vedolizumab cycle had failed. I met my kick ass, adorable as hell surgeon. He advised a resection would be the best way to go forward. […]

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Life Lately | Getting a Health MOT

Guys, lets talk about looking after yourself. I know that this might be easy for me to say – couple of months into remission with my Crohn’s, preparing for a new and exciting job, coping well with my stoma – but looking after yourself is important. So important. Actively being present and finding out what works best for you. I am somewhat more able to do this now because I am not unwell. For me, this now means getting my Vitamin B12 and changing my contraceptive.   Since my first surgery, I’ve known I need to have my B12 checked. […]

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Life Lately | Pushing my Limits

When life gives you lemons, make lemonade Yeah, I relate to this way too much. And I say it time and time again –  surgery changed my life – but this time, it’s gone and given me something I would never have expected. A job. I kept it very hush hush and only really celebrated when I got offered it and accepted. So, I am now an employed lady. Hallelujah! Some might say that “Oh, it’s just a job. You’ve already worked whilst you’ve been chronically ill, what’s so different about this?” Well, it’s a job in a field where I really see […]

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Life Lately | Making Progress

Just when you think things aren’t going anywhere, life pulls you back in. If you’ve been following me for a while now, you’ll probably know that I haven’t work since before my first surgery in May last year. In fact, loosing my job was a big factor is why I finally chose to have surgery when I did. There was a plan to retrain after I had recovered from my Right Hemiocolectomy but my body had other plans. Here we are, seven months since my ileostomy surgery and I finally have the strength – both mental and physical – and courage […]

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Life Lately | Finding Space to Relax

Life, right now, isn’t busy for me but it’s a complete struggle to relax. I say ‘busy’ in the traditional sense that I still currently unemployed so I don’t have a Monday to Friday 9-5 keeping me occupied. But, that doesn’t mean I haven’t been working. I’ve been spending my time writing and working on improving my ‘blogging game’ pretty much since 2017 started. Despite this, once I am through with my tasks for the day, I find it so hard to tear myself away from my phone and really relax. I used to be able to pick up a […]

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Life Lately | The Challenge

I usually don’t get into this whole ‘giving something up for Lent’ thing. I’ve never been particularly religious or felt the need to give something up to prove something either. But I can see the logic behind it; trying to do something new for 40 days and see if it sticks. And this year, I think I might just be in need of this. Of course, things for me have been great lately and I don’t apologise for that. I fought hard to get to where I am today. I had to get ready for surgery #1, recover from that, […]

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Life Lately | Stoma and Ostomy Lifestyle

So, I’ve been doing a lot of specific blog posts on ostomy advice and milestones. What I haven’t been really talking about is what is going on with me, personally. After my first surgery, we had a game plan on what I was going to achieve and when. This included how well I was going to recover, how I would get on with my chronic illness wway from surgery and when I would return to work. Returning to work was going to mean retraining and I wanted time to mentally prepare myself for that. But nothing went to plan. Nothing. […]

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My Note to You

My boyfriend has never seen or experienced me without my IBD. We met a couple months after I was diagnosed. That is now almost five years ago. It’s been my longest relationship to date and I hope it’s the only one I now have. At the start, my disease was under control and I was able to have some sort of life whilst being ill. We acted like a couple of just normal people, you wouldn’t have known I was chronically ill. I kept him away from my hospital appointments – wanted to be a big girl with her big […]

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Seriously?!

So, knowing I was going to be in town today for a dental check up, I decided to do some writing in a local coffee shop. Got a loyalty freebie so I was all set. But my stoma had other plans. I was just finishing up my coffee and got my notebook out, and pain shoots through my bag. My stoma is working overtime to push something through; last nights dinner. Of course, we had chill. With beans in it. Corn chips on the side. I hardly drank yesterday when I think about it too, so just absolutely shit situation. […]

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To new beginnings…

Tuesday 23rd August (cont’d) “I’ve got a space for you on the end of the emergency list today, could be this afternoon, probably this evening though.” Ward round this morning and surgeon is keen to remove my colon today. Despite being busy, he will stay and do my surgery when his list is complete. Turned out that meant waiting all day – still experiencing more blood than I’ve ever known to come out of me – until the anaesthetist came to see me at 6pm. We talked through my procedure – a subtotal colectomy with ileostomy – and my options […]

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In for the long haul

Thursday, August 11th “I feel absolutely awful. If I’m honest, I’ve felt awful for weeks and I’m at the end of my tether. Please help me.” I was on the phone to my IBD nurse, begging for help. I’ve never begging for an admission but that is what came out of my mouth next; “I’d really like to be admitted.” She wasn’t shocked, just said she’d need to speak to my consultant and surgeon to find a bed for me on the Gastro ward – always going to be a big ask but I knew she’d come through for me […]

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Just… *exhales and sighs*

I feel rotten today. I spent Tuesday afternoon onwards at my boyfriends house. I don’t spend alot of time there because of recent problems I’ve had with my Crohn’s, its easier to be at home. But we had a night and a day off together so decided to spend it together. And even though we have been together for almost 4 years now, I still don’t feel comfortable enough to just get up and walk to the loo and be gone, for sometimes ages; whenever he lives. Even when my Crohn’s is going through a good patch; which now definitely […]

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Navigating the ‘Chronic’

Some people would hide away. Some people would happily live denying what’s happening. Some people would keep it all inside. Some people would rather talk about anything but this. And what is “this” when its highlighted, bold, italicised and underlined? A life with a chronic illness.   When I was first diagnosed with Crohn’s disease, I was told to not call it chronic. Why? Maybe because at that point, my health wasn’t too bad. I wasn’t fighting cancer or been involved in a horrific accident. But the longer I spent in hospital; not getting better, taking more and more medications, wondering […]

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