Katie’s Condition

That’s what the doctors used to call it…

I’ve probably talked about this or similar in the past but I just feel like talking about it again because of an incident that occurred today.

So I went to the doctors to have my flu jab. I have had a flu jab every year for the last few years. Recently, my dad has started having it to because he is practically my carer (although I don’t like the term ‘carer’ in my case as I like to think I’m quite independent when it comes to my care.)

Anyway so.. This happened last year, and I believe it happened the year before that too. My dad received a letter from our doctors surgery inviting him to come down to have his yearly flu jab. I never received a letter. I didn’t last year, or the year before. But I still turn up as I know I’m entitled to it. I’m what they call “high risk” due to my condition and circumstances.

Anyway, today I turned up. I thought that the receptionist would say something along the lines of “you’re not on the list” when I went to book in as this has happened before.

However this time round she looked at her computer and asked me to take a seat. I thought “Brilliant! Finally on the list! 😂”

So I waited for a bit. Then I got called in by the nurse. I walked into to the room with the nurse, noticing that she was giving me slightly curious/weird looks. I sat down in the chair provided right in front of her chair, with the computer sitting next to her.

She then continues looking at me in a slightly odd way before saying “Katie, can you tell me why you should have the flu jab. You’re not high risk or anything. Could you explain your condition?”.

Wow. Part of me felt like saying “just take a look at my notes”. Surely by looking at what I’ve been through is proof enough that I’m entitled to the flu jab.

I didn’t want to seem rude though so I went to explain my condition before hesitating for a few seconds whilst I thought “wait what is my condition?”.

There is no name for what I’ve got in general. So I gave a very brief outline of my life. I was born with my organs on the outside of my body (there is a name for that I know – exomphalos) , I’ve had complications throughout my life resulting in me having major stomach surgery, I now have a tube in my stomach etc etc.

That was luckily enough for her to agree I should have it and proceeded in giving me the vaccine.

I then walked out and went on about my day. Since that moment this morning though, I’ve been thinking. I feel like I’ve explained my story to so many people so many times. (I’m getting a little bit tired of it now not going to lie – maybe I should just show people my stomach when asked what my condition is…. Or better yet carry a sign with me at all times giving certain important factors of my life/condition. It will save a lot of time 😂)

When people ask me what my condition is, I can’t just give them a one word, simple answer like someone who has asthma, or epilepsy for example. Conditions people know. I have to tell my life story. Or give the briefs of it anyway.

Well it’s either that or say the actual – made up – name of it… Katie’s Condition. Like the doctors at Kings used to call it.

Apparently there is no one like me. Well no one who has similar symptoms, consequences and surgeries all together. I find this a little annoying because I can’t give anyone straight answers and not everyone has time to sit and listen to me explaining my life story.

However I guess it makes me kind of unique. One of a kind you might say. As far as I know there’s no one else out there with “Katie’s condition” and maybe I should be kind of proud of that.

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 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

Why I choose to face my fears

Fear. Anxiety. Nervousness.

These words are what I have felt in the past, and sometimes still to this present day.

I’ve mentioned before how I used to have a massive fear of food. How, because of the problems physically that I’ve had in the past, the fear has affected me during my recovery. The sight, the smell and sometimes even the names of certain foods gave me a chill down my spine. Toast, for example, is a word I would bread. (oops sorry.. Dread 😂 **)

However now I’m pretty much over all of that. I enjoy food. I love food!

I remember when I first started going out with friends and family and socialising after the operations. When others used to suggest going out for dinner somewhere, that is when the full panic would set in. I’d want to go, for the socialising aspect of it, but I would feel nervous knowing there’d be food around me, and perhaps even in front of me. I would have all these worries in my head. Thoughts such as; what if I can’t manage it all? Will it look like I’m wasting food on purpose because I leave a larger quantity than most? What if people stare at me? What if I start feeling unwell? What if I have a panic attack in the restaurant? What if my friends/family are embarrassed of me?

There are times where I’d run these questions over and over in my head until I decide to not go and make an excuse for not going. Not always but sometimes this would happen.

I was also worried about something that has been said to me a couple of times before. “You’ve hardly eaten any of it”. That has been said to me a couple of times before, especially in a restaurant by the waitress/waiter. I feel embarrassed and just plain rude. I know it’s not my fault that I can’t manage it all, and I know I’ve probably left a lot making it look like I’m not happy with the meal or that I’m just wasting food, but I just couldnt help but feel like I’m letting those around me down. And that I’m being rude to the staff in the restaurant. I used to not know what to say. However now, if that was to happen, I tell them the truth when/if they ask me why haven’t I eaten it all or most of it. I don’t go into detail obviously, I just say I’ve got a condition which means I only eat small amounts. And that pretty much works now.

Where was I going with this? Oh yeah. Fear. The fear that I had a few years ago has basically gone now. There is still a little bit of anxiety there but I always go out when invited somewhere. I’ve learnt that avoiding situations that scare me is not always the best thing to do, in fact it makes things worse most of the time. When I used to hide away from others and avoid going out to places with food involved, I felt lonely. I felt like I was missing out. It was horrible.

Eventually something clicked in me and I decided that I wasn’t going to let my fear and anxiety win. I was going to face my fears. I was determined to fight. I wanted to go out with friends and family. I learnt eventually that my friends and family would stand by me and not judge me for not eating a lot. Those who I care about and those who care about me are not embarrassed to be with me despite knowing my lack of appetite. And recently I’ve started to enjoy going out. I look forward to the next outing, in fact sometimes I arrange to go out for a meal with friends. I have also found a way that works for me food-wise. I normally get just one meal, a starter. And have that as my main. Because I know full well I wouldn’t manage a whole main course. Because my appetite has improved slightly and I’m enjoying food more, I can just about manage a whole starter! This works for me. I can eat a nice katie-size portion and I can enjoy spending time with friends and family, joining in with what they’re doing. (plus a starter is cheaper than a main… So it’s normally a cheap night out for me so yay bonus! but shh.. I didn’t say that😉😂)

(**this was a mistake.. My phone auto corrected it to this, couldn’t see the point in deleting it. It kinda works🤷‍♀️😂)

Moving on

I saw this quote shared on Facebook and my first thought was “that’s me!”.

I’ve had moments where I’ve thought why have I had to go through so much? Why was I born the way I was? Why have I had to go through numerous operations and treatments? Why me? So many “Whys”.

What have I done to deserve all the pain I’ve been though, both physically and mentally?

It may sound selfish and yes, there are people who have been through so much worse and are in a worser state than me. However that has been the way Ive felt in the past. Now that my “hospital life” is behind me (or so I think) I am able to live a normal life (as I’ve said many times before😂) Although, a normal life for me hasn’t all been easy. I’ve had moments where I compare my life now to how it used to be. And not in a “my life used to be bad now it’s good” kinda way. In a “why can’t my life go back to the way it used to be as that’s when I felt like ‘katie’ despite being in hospital” (see my ‘Finding Katie’ blog post).

But recently, I haven’t really felt that way. My past seems like a distant memory now. I’m focusing on now and my future. I’m not focusing on how I used to be and most importantly, I’m not wondering ‘why me? And’ Why was I given this life? ‘

Because, like this quote says; I was given this life because I am strong enough to live it. I’ve battled a hell of a lot, and it’s been hard at times. But I’ve ALWAYS got through it. 22 years and still fighting and going strong!

Confident Talker

Hello!

I’m sorry I haven’t posted sooner. I’ve been a bit all over the place recently. One minute I’m happy and confident with the way things are going and the next minute I’m sad and frustrated. I really don’t know how to describe it. It’s mad.

I’ve said all along, as my life has changed in recent years – to a more ‘normal’ way of living, I’ve had to try and adapt to all these changes and it’s been hard.

I’ve had a few set backs. Regarding work, dating, friends etc. All small things but to me… They’ve been quite a shock to the system I tell ya!

It’s nothing others have done by the way… Its just small things that most people will just shrug off and carry on. But I’m not used to having these sort of set backs… So i’m finding that I need longer to process what’s happened and then shrug it off.

I’m also struggling with the nice things that are happening. Which sounds odd I know.

For example, I recently went on a few dates with someone (yes.. I’m getting out there now!) and I spoke a bit but I couldn’t really say much as I just didn’t know what to say. I panicked and felt like the majority of the time I was with him my thoughts froze. I couldn’t form words. It was embarrassing. He was understanding about it though and tried so hard to ask me questions and encourage me to speak. But despite how much I tried, my mind kept going blank. He messaged me after the third date saying how he didn’t think we had much in common so there’s not really any point in meeting up again. The way I’ve worded that sounds like he was rude about it all – but he certainly wasn’t and was very nice about it. I understood and we’ve parted ways. Now maybe he was right. Maybe we didn’t have much in common. But there’s a part of me annoyed with myself because I feel that if I tried harder to talk and ask questions, and just be more confident in making conversation, then we may have found loads in common. He was really nice and made me laugh–which is a good sign in my eyes, and I really felt that we were similar in personalities.. Its just my anxiety and confidence affected me showing that.

My confidence when it comes to talking is similar in other situations with friends and family too. I just don’t know what to say or how to speak to them half the time. It’s ridiculous.

I really hope something eventually clicks and I start feeling comfortable and happy talking again soon. And I let my bubbly, silly personality shine through.

It’s creeping up on me…

I’ve felt like I’ve been in a good place recently. I’ve enjoyed myself. I’ve been so relaxed. But there’s been a few occasions the last couple of weeks where I’ve just stopped in my tracks and just felt so sad..

I don’t know why. I don’t know how. I don’t know what triggers it… But it’s definetly there.

This has happened before. I get a few ‘outbursts’ of lowness. It’s like a switch that I can’t control. On and off. On and off. It happens gradually.. The out spurts are originally spaced out but eventually become more closer together and more often… And I feel like thats happening now.

I’m trying to actually fight this whilst it’s in its early stages. I’m dismaying the negative thoughts. I’m telling myself it will all be okay. I’m pushing away the bad thoughts and reminding myself of the nicer, positive thoughts. I’m taking control. It’s hard but I don’t want depression to win. I want to be in control. I want to stay feeling positive and happy.

As I’ve said before – I do think it’s harder battling a mental illness compared to a physical illness.