A message to those close to me❤️

My last post was a bit negative… I apologise for that. I seemed to have upset a few close to me by posting that. They seem to feel they are a part of making me feel sad and low.

Let me tell you now, none of you. Not one of my family members, friends etc have contributed to the way I feel. I can’t help the way I feel sometimes. I can’t control my moods. Most of the time I dont even know why I feel the way I do.

I know for a fact though that I’ve got super supportive friends, family and boyfriend. Every one of you, if you’re reading this, are stars!

How you’ve managed to put up with me I don’t know😂.

You’ve all been supportive and amazing and I couldnt ask for better people to be close to.

I love you all and I’m sorry for causing any worry or concern.

K x


Highs and Lows

I’ve been struggling recently.

I really don’t get it. I feel like I’ve been on such a high for so long. Everything seems to be working out. Any knock backs I’m getting, I get straight back up. I’ve been practically constantly feeling happy and content with life.

Recently though, I feel like I’ve been putting it on. Like I’ve been forcing myself to smile and be happy.

It’s a strange feeling. It’s like I want to be happy, I know I have all the reasons in the world to be happy. I’m finally leading a normal life – this is a big contributer to that!

Why, recently, do I feel like I’m pretending all the time?

Is it because its all getting too much?

Am I tired of all the trying and pushing myself I’ve done the past few years?

Am I struggling with normal/everyday tasks because I don’t feel like I deserve to live a normal life?

I don’t know. That’s my answer to all them questions. I don’t know.

Here I am admitting to everyone who I’ve lied to and said “I’m okay”.. I’m not. I’m tired. I’m struggling.

But I’m still going to try. The more I try the more real it seems. Trying is all I have done and can do❤️

My Experience of Stomach Surgery (Part 2)

Following on from part 1…

So I woke up in intensive care. I only remember bits of being in intensive care as every now and then I’d just randomly fall asleep because of all the drugs they were giving me.

I had my own nurse in the unit, who stayed by my side at all times. My dad was given a room near by so if I needed him then the nurse could call to his room and he’d be down in 5 minutes.

I remember feeling frustrated and upset that I couldn’t move or communicate despite being able to hear and see everything. I could basically only communicate with people by blinking and making sounds.

I tried moving even just my fingers, but I physically couldn’t. I remember trying so hard to move, I felt like I used all the energy that I had to try but It was impossible. It was surreal and so scary. I felt like I was locked inside my own body.

I had a tube going down my throat, into my airways to breathe. I was on life support. I drifted in and out of sleep all the time I was there.

Nurses and my family would try to keep me entertained and communicated with me the best they could. Apparently, according to my dad, I’d get the odd foot massage which I loved! 😂

Because I couldn’t communicate verbally, others had to understand what I was trying to say through sounds, and eventually I gained use of one of my hands so I was able to – slightly messily😂- write down what I wanted to say. (I’ve been hunting high and low for the piece of paper which I kept from that time.. Showing what I wrote – or scribbled- on but I can’t find it😩)

For some reason I had an obsession with asking what the time and day was? It got to the point where I didn’t even have to say anything… I’d just look at Dad and he’d be like “it’s half 3 and it’s Saturday” or something hahaha

I don’t have many memories of intensive care.. As I said I was zoning in and out a lot. I remember the feeling of the tube down my throat though. It didn’t hurt nor was it that uncomfortable… Just… Odd. Like every time I swallowed, I just felt a large bit of plastic in my throat. Weird.

Anyway, I’m going to leave it there and keep you guys hanging on… The next chapter of this blog post will involve the next stage… Special care.

My Experience of Stomach Surgery (Part 1)

It’s just hit me. I’ve basically told you the basics of my story on this blog. What I’ve had done, my condition etc.

But I haven’t fully gone through my experience of having surgery… Especially major surgery.

So here I go.. I hope in some way this may help someone going through similar HOWEVER I must say, every patients’ surgery of any kind is different. In my story there may be some hard to read parts as well as positive parts… But that is just my experience. Like I say… It is very important that anyone reading this understands that EVERY surgery is DIFFERENT!

Okay now I’ve put out my disclaimer, back to my surgery story…

I’m not going to talk about my surgeries as a baby as quite frankly.. I can’t remember any of them😂

So I’m going to start with my first major surgery as a 15 year old girl.

At the age of 15 most teenage girls should be preparing for her GCSEs, going out with friends.. Just being a teenager. Unfortunately I didn’t have that experience.

My first surgery as a 15 year old wasn’t major (I was just put to sleep, had a camera put down my throat to examine my insides, and had a picc line inserted) but it was still a little scary. I mean, I was putting my life in someone else’s hands for a few hours!

But all went well. Time went super quick! (I was asleep for most of it so🤷‍♀️😂)

Now… Fast forward a few months after that procedure. My (unofficial) first major surgery. This is the one where I had my organs moved around and I was in theatre for over 10 hours!

Let me start at the very beginning of that day..

6:30am (roughly) : I woke up in my room at the hospital. I didn’t have a great night.. The thought of what was to come imbedded in my mind.

I didn’t know what to do so I just stared at the wall in front of me.. Thousands of thoughts going around in my mind. I heard the night shift nurses quietly having a chat. I heard alarms going off in the distance. I heard my dad snoring away.. Haha.

As I was focusing on all the sounds around me, my nurse popped in to do a few observations. Blood pressure, temperature, that sort of thing. We had a chat, a giggle about dad snoring etc.. I then asked her what time I’m due to go down to theatre. She told me it was still 7am.. As decided the day before.

Once she’d finished my obs she left.. And by this point my dad had woken up. One member of my surgeons team and the anaesthetist came to see me to have a chat and have me and my dad sign a consent form.

As the minutes got closer and closer to 7am… My nerves began to kick in. I felt sick. I was scared. I didn’t want to go through with it but at the same time I knew I had to otherwise I could put myself in danger if I didn’t.

It got to 7am and I hadn’t been summoned.. There must have been a delay or something. I had my gown on and was ready to go. Eventually.. at around 7:15am, my nurse knocked at my door, opened it and said those words that I’d been silently dreading.. “they’re ready for you now”.

After I heard those words, something clicked and everything suddenly felt super real. I felt a wave of nausea and rushed out of my bed, to the nearest outlet that I could be sick in.. The sink in my room. (Sorry for the grossiness)

I burst into tears and started shaking. I knew this was all just nerves, and so did my dad and the nurses. I had to let it ride. I just wanted to stop time there and then, either that or fast forward time to ignore this stage.

I got back into bed once I’d calmed down a bit. I did a few breathing exercises as the porter unclamped my bed and began wheeling me out of my room and down the ward corridor. The rest of the nurses and doctors on shift were at the nurses station all waving me off and saying “good luck” and “you’ll be fine!”. My dad and nurse walked next to me. My dad making bad jokes to try and lighten the situation… As he always does.

We got into the lift and went down to the ground floor. Because it was quite early there was hardly anyone around. It was pretty much silent as I was wheeled towards the surgery department. Once I’d been put in my bay… There was a bit of a waiting period. I had to have checks done again. Asked various questions. Checked my id bracelet. All that Jazz. Dad had to put a gown, hat and special shoe covers on as he was coming into theatre with me (he looked hilarious! 😂)

The time we were in that bay felt really long! Like it felt like it dragged. Eventually though, they were ready for me. No turning back now.

They wheeled me into the theatre. There was a lot of surgeons in there. I think there were specialists for nearly every part of my body (especially my digestive organs). I moved from my hospital bed to the operating table. I felt like crying again and looked at dad. He held my hand and tried to put on a brave face for me but I could tell he was just as scared. The surgeons fitted me up with all the needed equipment, gave me a foil, warm blanket to keep my body temperature stable. They then run through the questions and checks (again! 😂)

The anaesthetist then looked over me and asked if I was ready. I nodded and gripped onto my “lucky” Teddy (I brought him down for luck😅)

Dad was still gripping my hand as a mask was put over my face. The gas smelt and tasted of pear drops. I took their instructions of breathing in… And breathing out… In…. And out… In…. And out.

I started to feel dizzy. The room was spinning. My dad and the surgeons were talking to me but they sounded so distant and echoey. I also had ringing in my ears. I was feeling sleepy… And then suddenly… All was black.

Next thing I know I’m in intensive care….

Stay tuned for part 2☺️

Being known for something different

Before I start I just want to apologise for my last post being quite gloomy. When I’m not well I tend to feel a bit more negative than usual despite my best efforts to stay positive.

Back to this blog post.

I’d you know me, you probably know that I am a massive fan of a certain band… Queen.

I’ve been a big fan for, I would say around 5 years now. I knew of Queen before… Who doesn’t know of Queen?! But I properly became a fan in 2014 after getting a sudden interest in their music and their story as a band.

Anyway… Instead of rambling on about the greatest band that ever lived…. (I won’t be able to stop.. believe me😂) Let me get to the point of this blog post.

Recently, a friend tagged me in a Freddie Mercury related post on Facebook. I get a lot of notifications from friends and family tagging me in all things Queen-related. So much so that I feel that the people I know, now know me as Katie – the big Queen fan and not Katie – the girl who has spent a lot of time in hospital, or Katie – the girl who was born with her organs on the outside of her body, or Katie- the girl with a disability.

I’ve noticed that a lot recently. People know me more for my ‘obsession’. (I say I’m not obsessed but apparently I am🤷‍♀️🤷‍♀️😂) with Queen. Not for my past or present.

And I’m not going to lie… I love it! Because it gives me more of a reason to feel ‘normal’! I’m at the stage now where despite being proud of what I’ve achieved and overcome, I’m much happier being referred to as an enthusiastic (I prefer that term😉) fan of an incredible band, rather than a poor, sick girl who has had numerous operations. I don’t like people feeling sorry for me. I’ve had to deal with horrible stuff yes, but everyone goes though their own horrible experiences, all different in their own way.

Come to think of it, why do we sometimes focus on what people have had to go through and know them as that? Why not focus just on how well they have over come it? The positives. Admire their strength, don’t feel sorry for what they’ve been through.

That’s personally the way I think we should look at others.

(this is a photo of me getting ready for my first Queen and Adam Lambert concert last year! 😁🤘)

Pushing myself too far

Recently I’ve had one of my bad spells.

It started Wednesday night. I had a very busy day Wednesday so I expected to feel tired that night and possibly over the following few days. I did not expect how tired I would become.

I haven’t had a bad spell like this for months. I tried to get through it but couldn’t. I felt sick, tired, uncomfortable and was also in quite a bit of pain. Most of Thursday and pretty much all of Friday I was in bed – sleeping all the time. I had no energy whatsoever. All the energy I had went into wretching – which was horrible.

I had a Wedding reception to go to Saturday evening too which I really wanted to attend, so I pushed myself by taking alot of medication and just tried to distract myself by how I was actually feeling. I managed a few hours at the reception with my boyfriend and family but despite my best efforts to not let my condition take over me (I even managed to do a bit of dancing!) – I still didn’t feel myself. And when I got home I just wanted to go straight to bed.

Sunday I felt a little better but still felt unwell whenever I tried to eat something. And today, I feel like I’ve improved in how I’m feeling but I still don’t feel 100%.

Of course this has meant that I’ve had a few days off work. I did try and go in Thursday but after an hour, it all got a bit too much for me and my body did not like me for trying haha. I hate missing time off work. I hated missing time off school and college. I just get the feeling that I’m letting people down and causing stress to others.

Also I’ve had loads of comments said to me in the past along the lines of; “you’re a fighter” “you never give in” “you don’t let your condition take over” etc etc. So when I do have to listen to my body and have time off work or something, I feel like I’m not living up to those words. Like, maybe I’m not that strong. Maybe I’m weak.

I just want to feel well again. I want to feel like Katie.

It’s been a year??! 😱

A year ago today I made the decision to start a blog about my journey. Covering the highs and lows of it all and spreading awareness of Exomphalos, Dextrocardia, Depression, Anxiety and many other aspects of my life.

I can’t believe it’s been a year already!

Thank you to all my followers. Those who follow on here, word press, or on social media (you know who you are😉)

Thank you for all your interactions and support – it means alot!

I do try and upload when I can but sometimes there can be quite the delay in posting so I apologise for that.

Please do continue liking, following and sharing though! I’ve got some new, great content planned for this blog so stay tuned😊

I want to try and get my story across to as many people as possible! Hopefully I can help and assure others who are going through similar whether physically or mentally.

So please, if you read this, like and share this post!

Thank you again! And Happy 1 year to Katie’s Journey! 🥳😁

Katie x