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🤷‍♀️😂)

Going back in time… Kinda

On Monday I had an outpatients appointment up at King’s. It was a normal, routine appointment that I now have annually.

This appointment was slightly different to previous years.. Mainly because I didn’t have my parents with me this time.

I didn’t go on my own though, I mean I could have done. And I did think about doing that. I know the route and routine of it all. I’m fine doing it all on my own. I’m 22 for God’s sake, and it’s not like I’ve not been there before (I’ve had like almost 7 years experience😂)

But I didn’t. I took my boyfriend with me this time. And I’m pleased I did, as even though I said I could do it on my own, it was nice to have some company ☺️

The journey was fine, we went on the train. We ended up getting to King’s just over an hour before my appointment as per. (I’ve always allowed extra time to travel there because of delays)

So we grabbed a quick drink and sat and chat for a bit. Then, because we still had a bit of time left I decided to go up to the ward I was on 6 or so years ago. The ward that played a massive part in my recovery. I wanted to see wether the staff who were there when I was there, were still there. I wanted to say hello. I knew it was unlikely that I would see a few staff, if anyone, but I wanted to try.

So we went up to the third floor (the floor in which my ward was on).. In the lift I felt all these memories flooding back. I remembered how many times I had used that exact lift, wether by walking, in a wheelchair or even in a bed.

The lift got to my floor, I walked out.. And forgot what way I needed to turn to get to the ward. I couldn’t remember wether it was right or left😂😂.

I quickly remembered though and turned left, making my way towards the ward. We buzzed in, used the hand gel they provided at the entrance and walked towards the front desk. The ladies at the desk I did not recognise and they did not know who I was. They asked “can I help you” and I explained that I used to be a patient in this ward and I’ve come to say hello.

They were lovely and chatted to me, whilst explaining that a lot of the staff who were around when I was there had moved on elsewhere. However there was one nurse there, who I hadn’t seen since probably 2014. The ladies called him and gestured over towards me. He looked at me a tad confused. But when I said my name he was like “omg Katie!!”😂 He asked me how I was, what I was doing now. He also pointed out the letter from the Queen I sent them (I’m not sure if I’ve mentioned that on here yet.. But I’ll probably reminise about it soon anyway!) After a bit of chatting, I had to go as it was getting closer to my appointment. I said my goodbyes and the nurse told me that he will mention that I came in to the others😁

Once I’d left the ward, I felt so happy. A little gutted that I hadn’t seen many people but I’m glad I got the chance to see one, and he will let the others know that I came in☺️

My appointment itself went okay. I didn’t see my actual consultant, but I saw her registrar. She was lovely.

I talked to her about the size and shape of my stomach and asked if I could have physio or something to help bring it in but she said that because of the way my stomach muscles are shaped and placed, physio wouldn’t do anything. I can try basic stomach exercises. But that’s it really. She also said that my stomach could increase in size in the future but there’s nothing I can really so about it. I’m okay with that at the moment, but obviously in the future if it start affecting me physically or mentally then I might have to consider other options if there are any.

She also suggested that I could be discharged if I wanted to be. As there’s nothing more that they can do for me and I am in a stable condition now. I said no. Mainly because I know, god forbid I was to relapse or just suddenly get extremely unwell, instead of going to the GP or A&E – who won’t know about my condition – I can call my consultants secretary up and get an appointment, or admitted to a ward at Kings ASAP. I’d rather have that back up if needed. After all, I am a complex case.

I guess it’s a good thing that I have the option to be discharged from the hospital after all these years as it shows I’m now stable and in a good place. Although, the other option is to stay put. Even if it means seeing my consultant once a year. I’d rather that than have trouble seeing someone who knows what they’re talking about in an emergency. Staying as a patient is one thing I am entitled to which I will accept. I think it’s the safer option. I’m happy where I am.

Humour Helps: The saga continues (or as my dad wanted me to call it – “Hospital Funnys”)

I thought I’d make my next blog post a part two of my post made a couple on months ago, “Humour Helps”.

The reason being is that I’ve just been reminiscing with my dad about my times in hospital… As a baby and most recently. He’s told me a few tales some of which I do remember, others I don’t (mainly the baby ones) and I thought I’d share some of them with you😊

So, let’s begin..

The flying dummy

Yes…. You read that right. This tale involves me (as a baby) and a dummy which resulted in my parents and my nurse becoming speechless, confused and yet… amused.

As I think I’ve mentioned before, due to the nature of my condition and surgeries I was having, I was kept in hospital for 6 months when I was born. As I’ve always been told – I was born on the hottest day of the year and came home on the coldest day of the year. And on a few occasions, I was kept in an open incubator to allow room for my organs to slowly, with the help of a bull dog clip and pen, gravitate into my body.

Due to the surgery and because I was very fidgety (like most babies I assume), I had to basically be strapped down so I didn’t move. (by strapped down I mean my legs and arms were taped down so that I wouldn’t touch my stomach) Also because I couldn’t intake orally, I was given a dummy/pacifier with the aim that it would feel like I was eating/drinking.

However, after a while of having this dummy/pacifier I apparently realised that I wasn’t gaining from this device. I was not in taking food or anything. I decided I didn’t want it anymore didn’t I. So… and my parents still aren’t sure how I done this… I shot this dummy out of my mouth, up into the air, across the room and towards the crib far opposite me…

So basically I shot a dummy from my mouth to the other side of the room. Bare in mind I was not that close to other babies, there was no one else in the room and my hands and feet were taped down… How the hell did I manage that?

Apparently my dad, my mum and the nurse just looked into the room from the corridor in disbelief🙈😂

Folding the newspaper

Okay so in this story I apparently am about 1 and a half years old. Me and my parents were attending a hospital appointment.

My dad was sitting there, reading a newspaper when he glanced down at me who was looking at the newspaper as well as looking up at him. I made it clear that I wanted that newspaper… So my dad gave it to me and positioned my hands as if I was holding it from both sides.

Now apparently I tried really hard to at least look like I was reading it (by moving my head side to side😂) during which, a few staff members and a couple of patients noticed and started cooing and giggling at me. I must have noticed this because apparently I somehow managed to bend my thumbs over, neatly bending over the newspaper enough so my little head was peering over the top…. And I just glared at those laughing at me… With a stern look on my face.

It’s safe to say I had the whole waiting room in stitches…. 😂(excuse the medical pun)

Mischevious Ted

Fast forward a few years to the age of 15/16…. I still like to entertain my fellow patients, carers and nurses/doctors the best I can during what can be a stressful and difficult time.

This time it involved my beloved Teddy at the time, Lucky. Yes I called it Lucky because I won it at a tombola a good few years back and it felt like an appropriate toy to bring with me to hospital, to hopefully bring some kind of luck whilst I was going through all sorts.

Now, Lucky was involved in many shenanigans…. But I think this is one of the best moments.

So I was in my own room at this point. I was stable, getting by. And the day nurses were getting to the end of their shift and so were doing their ward rounds whilst showing the night nurses what the day had in store for the patient and what’s to be involved in their night care.

When my day nurse got to me, she stood in front of the door to my room. The night nurses gathered round her, facing her and the closed door. My nurse began her serious talk on what medicines I was on, what my care was etc..

During which my dad decided to ask me if he should take Lucky and make him peer through the window in the door… Of course I said yes! 😂

So.. My dad picked up Lucky and proceeded to make him “walk” and “wave” in the window of the door. All we heard was the night nurses laughing and the day nurse being like “what? I’m just giving you a list of her medication and does… What’s so funny?” 😂😂😂

After the ward round, my day nurse came to my room and told me and my dad that she was so confused as to why everyone was laughing at her serious talk about me and my condition.. Until she turned around and saw a bear waving to them in the window🙈😂😂

And I think I’m going to leave that there for now…. I’m sorry its only 3 stories but I’m getting a bit tired reminiscing and typing😅😂

I have plenty more stories to tell though so stay tuned😉

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!

Against Doctors Orders

I’ve talked in the past about realising my limits and listening to my body.. etc.

But there are some things in my life which I am technically entitled to, yet I refuse to… acknowledge I guess.

When I say a few things.. I mainly mean.. Well.. One 😂

I found out I was entitled to this a few months back.

Basically a few months ago I went to the doctors for an appointment. He was a nice doctor and we chatted about the issue I originally made the appointment for. After a little while of talking, and I can’t remember how we got onto this, but he mentioned that I am actually entitled to a sick note that said that I was ‘unfit for work’. Due to the complication of my condition and the number of surgeries and treatment that I have had, I do have the right to not work and probably just live off benefits.

As soon as he mentioned the ‘unfit for work’ note I instantly said no. Why? Because why the fudge would I do that when my main goal is to be as “normal” as possible.

I explained that, yes I have a few limitations (mainly just heavy lifting), but I do want to work. I want to earn my own money. I like the idea of having money come into my account knowing that I’ve worked hard for it. I also don’t want to sit around on my butt all day doing nothing. I want to get out there, meet new people, learn new skills, build my stamina. I don’t want to let my condition define me and take control of my life.

Okay so.. I didn’t go that much into detail to the doctor but I did say how much I really wanted to work and in fact, I enjoy working and keeping busy. He was a bit shocked but he also said he was proud of me😂☺️

There are some things I am entitled to to, I suppose, make my life easier.. And some I will accept but there are some that I won’t. Only because I feel that it would limit me more. I’m a fighter. I’m someone who constantly tries. I get back up when I’ve been knocked down.

I have always said I will never let this condition win. And recently I have noticed that, from sticking by that statement, I am actually starting to live a “normal” life. I have a job, I’m socialising with friends, and recently I’ve got into a relationship.

Everything’s going for me at the moment… Years of fighting my condition and I feel that I’m actually winning now! 😁

CUE A CHEESY SMILE SELFIE:

Realising my limits

Hello all!

Long time no blog😅

Sorry.. It’s been a bit manic recently. I had both my birthday and father’s day last week. So along with work, last week was pretty busy.

I am now 22 years of age. To be honest, I don’t know if this is just a thing that happens as you get older, but I wasn’t as excited about it as I used to be when a birthday was coming up. I just thought – here I am, another year older!

(and another year closer to 30 – jeeze I’m getting old)

Don’t get me wrong, I did enjoy my birthday. Everyone around me at work and home, made it as special as the could. I got loads of lovely gifts and had my favourite dinner – chilli con carne😋. I also went out with friends on Friday evening for a few drinks and food (I managed to get a tad tipsy😂)

It’s just.. The excitement Ive had previously just wasn’t there. Maybe its just the fact that I’ve grown up, I’m not a kid anymore. Well I haven’t been a kid for a while soo..

Anyway… What did I intend to do this blog about again? Oh yeah.. Realising my limits.

This is important to me. This is also something I struggle with occasionally. Now I’m more able-bodied, I’m not as sick as I once was, I’m more mobile etc.. I sometimes forget that despite me not feeling as bad as I used to, deep down I still have a condition that can affect my daily life.

I do have a habit of pushing myself too far sometimes. I forget that I’ve been through what I’ve been through. I do too much until I start making myself ill. I need to remember that me, my body, has limits. I need to understand that it’s okay to stop and take a breather. It’s okay to listen to my body. I need to look after myself as well as work hard.

I think, the fact that I’m now “free” to do whatever I want, I want to do as much as I can in life. And that’s fine. (its a great feeling knowing that I’m free!) However, I need to learn when to stop. When to just rest. And I am now slowly learning. I don’t get ill that often as I used to which is great!

Actually.. Talking about how free I am.. I’m now starting to really think about how I used to be. And it feels like a very distant memory. I question wether what I went through did actually happen.. Because Im not in that state anymore.

I’m in a better place. I’m healthy. I’m loving life. Yes, I have some restrictions.. But that’s easily managed. I’m quite fortunate to be in the state I am now as at one stage it didn’t look possible.

I’m sorry for rambling.. This blog post was mainly a post for me to just talk about anything that comes to mind as I go along.. And this time it was restrictions and comparison I suppose haha.

K x

I don’t care

I don’t care that I have a distorted stomach

I don’t care that I have a tube in my stomach

I don’t care that I get tired easily sometimes

I don’t care that I’ve got scars

None of that bothers me anymore.

I’m happy. I’m enjoying life. My disability doesn’t get in the way anymore. I finally realise that.

This time 5/6 years ago I was practically bed bound. I spent a lot of time laying in bed with sickness and pain. I couldn’t even sit up half the time. I couldn’t move. I thought that, that was it. That would be what I would be like for the rest of my life. Spending my life in a room, being cared for and have people do things for me, and most of all not being able to go out and enjoy life.

I was 16/17… The age in which people really go out, socialise and find themselves. I was stuck in a room, frieghtned of even turning on the TV just in case a food advert came on or something. It was scary, it was horrible. It was frustrating. I wasn’t in control.

(starting this post I never intended to go quite dark.. But there we go😅😂)

But…

Eventually I overcame that. One day I just stood up and said to myself – “I’m not living this way anymore” and I slowly started to ease myself out of the ‘bed bound’ state. Yes, it has been hard. And I still struggle a tiny bit every so often… But knowing that I’ve overcome so much, convinces me that I can get through anything.

Part of my recovery was getting over my self-esteem. As I got out more, I became more self consious about my scars, about my tube, about my stomach. Eventually I got over my scars. I got over the fact I have a tube in my stomach. And recently I have been actually feeling more confident with the way my stomach looks. Yes, I know it sticks out.. and it’s a slightly odd shape. But I don’t care. I used to. I used to make sure I wore a stomach support (whether in the form of underwear, a belt or a tummy control vest) under whatever I was wearing. But now I rarely wear one.

Yes, I do get comments when I don’t wear my support. Especially the famous “are you pregnant?” haha! But it doesn’t bother me one bit! I find it absolutely hilarious! I like to joke about my stomach every so often. I think it keeps me sane in a weird way. And I like to encourage others to joke or laugh with me. Why not make light of what could be a bad situation?

Infact I had a bit of a funny moment today, where my stomach decided to come out of the support I was wearing (I was wearing a kinda tight dress so wanted to bring my stomach in a bit to make it look a bit better). I was talking to a kid and then.. Out of nowhere… my stomach come out of the support and sprung out (making me look like I had a bump)😂 The poor kid didn’t know what to say… And neither did I. But it was bloody hilarious!! 🤣