Looking back, feeling grateful and looking like a bloody octopus!

I’ve just come back from a successful driving lesson. I’ve had a few lessons now, and each time I feel like I’m getting even better at driving.

I’m really enjoying it!

My life recently, despite having highs and lows (as anyone’s life does) has been pretty “normal” – as ive previously mentioned.

This time about 6/7 years ago, I was extremely weak and poorly. No one knew what the future held for me.

I questioned whether I’d ever have a life. I didn’t know whether I’d ever learn to drive. Whether I’d ever get into a relationship. Whether I’d ever be able to work. And I know this was a horrible thought to think.. But I questioned whether I’d make it to my 16th birthday.

It was a horrible time with a lot going on. No one knew what the outcome would be. It was touch and go. We had to take risks and fortunately I was very lucky.

Look at me now, 22, learning to drive, in a relationship, working.

Im very fortunate to be living the life I’m living now. The outcome could have been a whole lot worse.

I think that what I’ve been through has also made me grateful for the smaller things in life. Any milestone I reach or any baby step I take.. In anything I do, I’m proud of!

Some people might think I’m a bit too enthusiastic about the smallest of things sometimes but I can’t help it.

Somedays I’m thankful that I’m still here, living😂

Even back then, I was grateful for the smallest things. Things some people might take for granted.

Here is a Facebook status/photo I posted in December 2012…

I was estactic about having the tube taken out of my nose! I was grateful for not having something so ugly and uncomfortable taken away – just in time for christmas! I finally looked normal!

(however it wasn’t out for long as the following January, I had my surgery and throughout the year of 2013, I had many tubes in and out of me… I looked like a bloody octopus at one point!😂😂🐙)

I am normal… In my own way

It’s hard to say whether I can accept what I’ve been through or not. The majority of the time I feel like I can but sometimes I ask myself;

Did I actually go through all that?

The question I find myself asking many times. Did I actually go through that period in my life where I basically lived in hospital? Did I actually have major surgery? Was I actually that weak and poorly?

The answer to all that is yes. I did/was. It sometimes all feels like a distant memory, or even a bad dream though.

Saying that, my situation now where I have scars, my stomach is distorted and I have a tube, seems pretty normal to me.

I can kind of understand how someone else could look at my situation and think that it must be hard and scary. I mean, being connected up to a machine that pumps feed into you can seem quite daunting. I remember when I got told I will have to have a tube into my stomach – I was petrified!! Yes, I still had a slightly odd looking stomach with scars from baby surgery and no belly button but I was used to that. I was born with it after all😂. But the thought of having a tube just sitting in/on my stomach. Visable for me to see. And a machine that would pump stuff into me… I doubted whether I’d be able to get used to it.

Some people may not consider me, or my situation, to be “normal”. And that’s okay.

Why?

Because I know I am normal in my own way. I have grown used to having a tube in my stomach. I have grown used to having a slightly odd stomach. I have grown used to being fed by a machine overnight.

I am also used to the fact that my appetite is not great.

But I suppose the question I should be asking is….

What is normal?

(Btw this is my 50th post! Wow!)

😁😊

My Experience of Stomach Surgery (part 4)..

After a few days of being in intensive care and special care i was moved back to the normal ward.

Princess Elizabeth Ward is what it was called. It was a second home to me back then – which isn’t the most ideal I know😂 but despite the circumstances, I felt happy, safe and welcomed there. The cleaners, the nurses, the doctors, everyone on that ward were amazing.

Anyway, when I got on to PE ward, I was still a little dazed and sore from the surgery but I was getting there. I didn’t feel any pain for the first couple of days but that’s because I had an epidural. Before my surgery I used to think only pregnant women had epidurals and didn’t quite know what it was😂

However prior to surgery I was given an explanation as to what an epidural was. In my own words, an epidural is basically a form of pain relief. It’s a tube that runs down the spine that injects a form of pain relief into your body. It basically numbs most of the body and reduces the pain that you could be feeling massively.

I didn’t quite realise how effective an epidural could be until I had one.

I had one put in during my surgery and had it kept in all the way until I got to PE ward and was properly starting to recover and get back to normal.

When it first came out, I still felt no pain whatsoever. I had no feeling at all within my body actually. Within a day or two of it being taken out though…. I started to realise how powerful that drug was.

The pain was horrendous. I wouldn’t wish it upon anyone. I have the odd pains and aches now but I have never had pain like that. However it’s not surprising, considering I had just had major surgery where my stomach had been sliced open. (sorry for the graphic image there😬😂)

By this point, because I started getting feeling all over my body again, I also had my catheter taken out (a thing that lets you go loo without getting out of bed or even moving – sorry again😬😂).

I then started to have physio and would start by working on slowly sitting up and sitting on the edge of the bed. It felt like a work out!

Thinking about it, I find it fascinating to think that once, even sitting up in bed exhausted me. Now, I still get tired and exhausted probably a bit easier than a “normal” person but I can do a lot more!

After days, maybe a week and a bit, I was walking around the ward with my triage (they called me lady penelope at the hospital as for a short while I had to have people with me when I went for a wander round the ward or hospital – my dad and a nurse or two, as well as the machines I was connected to!😂)

I made such good progress in such a short amount of time (I think it was just because I was soo determined to get back to normality that I really pushed myself!). After about 2 weeks of being an inpatient, I was sent home. Everyone was so impressed with my progress that they felt that I could go home. I remember asking my consultant when I could go back to school and he replied “give it at least a week”. I was gutted, I wanted to go back the next day! 😂😂

I was so happy to get home, recover and have a “normal” life. Me and dad surprised my mum and brother by turning up at the house without telling them I was coming home. It was so nice to get into my own bed!

Unfortunately though, it wasnt long before myself and my family realised that maybe all was not as it seems and I probably came home sooner than I was supposed to..

My Experience of Stomach Surgery (part 3)

Following on from part 2…

So after a couple of days in intensive care I was moved to Special Care.

This is a step down from intensive care, and only one step away from being on a normal ward.

I don’t particularly remember much from special care.. Much like intensive care.

I vaguely remember being in a room to my self, as well as on a ward during my time in that unit.

I remember that I had a doctor come into my room/bay everyday asking me what colour the walls were.

This was because I was still on a lot of medication to manage pain and stop me from moving too much as the scars were still very raw. The drugs were slowly wearing off though, and they knew this from me telling them what colour the walls were. The less blue/green (I think) the were and the more normal my vision was becoming, the closer I was to the drugs wearing off completely.

During this time, I also remember a story that I think I’ve told many times before – the time I hallucination I had of my dad being a women! That was so strange! 😂

I had many odd hallucinations during this time. I saw strange things and was pretty disoriented. I didn’t feel any pain and felt quite light and happy but I still wasn’t myself. Apparently I sweared at my dad and told him to do one a few times. Those who know me know that is unlike me.

I also once thought my dad was having an affair with a nurse! I used to growl and give this nurse dirty looks whenever she came to check up on me – obviously there was no affair! 😂😂

I believe I was only here for a few days before being moved to a normal ward… When things started to really move and I was closer to normality!

I can do this… I need to

That’s what I keep telling myself anyway.

I’m currently on the train, going up to Kings College Hospital – a hospital I know pretty well🙈😂

I’m on my way to an emergency appointment.

Since I’ve been an adult and have moved to adult care, I have never had to have an emergency appointment with my consultant. Which is a good thing. It just shows I’ve been well enough and able to look after myself without the need of medical intervention.

However recently, well the last few months actually, I’ve been noticing a few things.

A few people close to me know that I am pretty much always in some sort of pain or discomfort. I also suffer with a lot of sickness. But for the last few years they have been manageable. I’ve been able to cope most of the time.

Recently though, I’ve been struggling. Ive been trying to not admit it. I’ve been trying to push through and keep going as I always have. But it’s becoming too much now.

The pain. The discomfort. The sickness. It’s all too frequent and becoming quite powerful. It’s starting to interfere with my “normal” life despite my best efforts to hide it. People around me are noticing changes in me too, particularly my behaviour. It’s becoming quite clear that I am struggling.

Last week I gave in and phoned up my consultants secretary. I asked if I could see my consultant ASAP.

Luckily there was availability today.

So currently, I am on my way.

I’m going to tell her everything and not sugar coat things saying “I’m not too bad” etc. As I have a habit of doing…

I am pretty certain she’s going to recommend some tests.

Although, I’ll be happy something is being done about this, I am also nervous as these tests could also intefere with my “normal” life.

I am also worried that, if they found the problem that is causing me this grief, the treatment that they may be able to offer me could send me backwards.

It probably won’t but I’m so scared of going backwards with my health. I’ve worked so hard to get to where I am now both physically and mentally! What if this pushes me backwards? What if I become more ill? What if I end up being admitted into hospital on a long-term basis again? What if I end up driving those I love away from me due to my poor health?

I’m so comfortable with living a normal life now. I don’t want to disrupt it… But like a lot of people have said to me…. I need to listen to my body. And I need to put my health first!

K x

I’m living a life and it’s only just clicked

As you can see from my previous posts, I had a little bit of a downer. But I’ve learnt that it’s okay to have down moments. It’s okay to feel sad from time to time. It’s okay to not be okay.

Anyway… I’m feeling pretty positive now. I’ve been chilling this evening, watching TV and listening to music as per. I’ve also been thinking.

Lately, I’ve been doing a lot. I’ve achieved things that I doubted I would. I’ve taken risks that I was too scared to take previously.

And I’ve loved every minute.

For example, last week I went to London with my boyfriend to see Biffy Clyro. They were really good! We had standing tickets. Meaning we were close to the stage, but it meant we were standing at all times.

On the days, weeks even, leading up to this day I was kinda anxious. I was worried about the journey. We went by train. I have been on a train before but only to places I know well. Don’t get me wrong, I trusted my boyfriend and felt safe with him. But the worry was still there. It was kind of out of my comfort zone. I was also worried about standing for so long. I was worried my body wouldn’t take it. Whenever I’ve been to a concert, I’ve always had seated tickets so I can stand and sit as I please. But this time I took the risk.

And you know what….. I did it. I felt a bit tired and my legs were kinda achey but overall I didn’t feel as bad as I thought I would. And the journey there and back wasn’t so bad. It was an amazing experience all in all!

This weekend I’m planning on going to visit some friends up in London. It will be the first time I go up to London on the train on my own. However… I’m not actually that nervous. I’m excited about the whole thing!

Before the beginning of this year, I was certain that 2015 was the best year of my life to date! That year I had started to properly recover and there were loads of parties and events I attended. It was a fun year!

However now we’re coming to the end of 2019….. I’ve changed my mind.

I know we’ve still got a couple of months left of this year but honestly, so far this year – I have had the time of my life!!

I feel like I’m actually living a life. I’m being a 22 year old! And it’s all thanks to the people around me, new and not, who have released me from being “wrapped in cotton wool” and have allowed to live my life. Go out, meet new people, explore new places, learn new things, have fun!

I know for some close to me, it’s been hard letting me go. But what they, and i, have to learn is that physically I’m strong now. I have the odd day where I may feel weaker than usual, but generally I’m a pretty strong person! I’m able to go out, have a few drinks with friends, do driving lessons (probably not straight after a drinking session with friends though😂), go to concerts, stay up late and just enjoy life.

I’m happy thanks to those who have set me free and let me take risks. I don’t need to be protected anymore.

I am living my best life and it is brilliant! 😁

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! 😁🤘)

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

Battling my Mental Health

I’m currently sitting here, typing, whilst crying. I’m having a low day. I’ve been meaning to write a post like this for while, after it was suggested to me to do one. I just haven’t had the opportunity. I thought I’d write it now, whilst I’m feeling the way I am so I can tell you exactly how I feel on a low day. I’m doing this because I think not only that it might help others (I’ll mention ways I’ve coped with it in the past), it might help me at this current stage.

So, here we go. Where do I begin? haha. That’s one of things that happens when I’m low, I suppose. I get confused. I don’t know where to start when it comes to any issues I’m having. You know when your earphones get tangled up in your pocket? That’s what my head feels like at the moment. Like every thought is just tangled up into one ball of wires or something. It hurts. Emotionally, it hurts. I feel both sad and angry at the same time but I can’t pin point why.

I’ve slowly been feeling like this over the last few days. I’ve felt it building up, but I just can’t stop it. The lowness takes over like a black cloud slowly moving and hovering over me. I try to convince myself that everything’s fine. Everything’s working out. I’m starting to have job interviews, I’ve found a new hobby that I enjoy, etc. Everything is looking up. But apparently it’s not. The way I tell myself that I am okay is actually quite strange and varies. One of these ways, is by posting regularly on social media. Now, you’re probably confused and thinking, everyone posts on social media – why is that strange? For me, I get a bit obsessed, I suppose. Especially with snapchat. You see, I’ve got many friends on snapchat and I like to feel that I’m not lonely. It sounds sad, I know. But my way of not feeling the loneliness that comes with the lowness is by posting almost constantly on snapchat. That way I feel that people are seeing my snaps, and getting involved by seeing them or laughing at them (I like to post amusing snaps when I can) and sometimes people will message me about them.

You’re probably wondering 1) that’s not really strange or anything – it’s my snapchat I can post whatever I want to my story, and I can post how many times I want. And 2) if I’m feeling lonely, why don’t I message a friend?

Now, I’ve always been like this but I cant get out of it. I’ve got many people I can talk to. I know that. And I appreciate that. I’m just worried that if I focus on just one person and constantly go to them with my problems – I’m going to annoy them. So if I’m feeling down or lonely, I’ll keep it to myself or if I did want to talk to someone but not go to someone directly, I might put a message on my snapchat or other social media along the lines of “someone talk”.

Some people might look at that as attention-seeking. I don’t see it as attention-seeking. I’m just asking for a bit of help. I don’t like doing it, but sometimes it feels like my only option. (I know there’s better options but in the moment, that’s the only option)

Another thing I’m thinking at the moment, is that my life isn’t going anywhere. I’ve been applying for jobs but not hearing back. I’ve spent so long spending time at home. I’m lonely, I’m bored. And I really don’t know what to do. I have a career goal. I’ve had the same career goal for years now. I just can’t get on that ladder.

I’m also a bit scared for my future. I worry that if I did get a job, will I be able to cope? Will my condition effect me in the workplace? Will I have the confidence to meet and talk to others? But also with situations not to do with working. Like, how will my condition effect me in the future? Will I ever settle down with someone? It’s kind of scary not knowing what the future holds anyway, but come to think of it, even now I’m going about my life taking it day by day. Who knows what could happen. My condition could worsen in 24hrs. I don’t know what my life will be like in an hour. Never mind my future. I’m scared of what might come. Throughout the last 21 years of my life there’s been highs and lows. At this moment, I can only see the lows.

HOWEVER! As I’ve been typing this out, I’ve been thinking … hang on … no I am okay. I’ve just re-read it all back. Things aren’t as bad as I keep thinking they are.

You see, to start with I mentioned my new hobby and the job interviews I’ve been having. That’s two positives right there! That shows that I am moving upwards in the world. They’re small, normal things but they’re giant leaps for me. The new hobby, baking, is an incredible move upwards for me. I was scared of food 4/5 years ago. I couldn’t look at a piece of toast with feeling anxious and sick. I’m now baking. I’m creating and enjoying food!! And with the job interviews, It’s only recently I’ve started having them. The fact that my application, my CV is being noticed. And I’m being shortlisted. That’s incredible! I will get something someday! But it will happen at the right time! I’m also having driving lessons. And they’re going really well! That’s something else that’s really positive!

And with the constant social media posts, I’m not posting every minute haha! It’s a few snaps a day. I’m letting people into my life. I’m giving people insight. I’m sharing my story. Social Media is a wonderful thing! Why my make the most of it? I’m not posting anything harmful or rude. I’m sharing happy posts, and occasionally asking for a friend to talk to! Social media is for connecting with people! Why should I be worried about how many times I post? And what I post?

With regards to feeling lonely at home. There’s nothing really much I can do at the moment. Unfortunately I’m at the age where I have friends of similar age of me who are working. And so meeting up is quite hard. But again, I have social media. I have texting. You know, I can contact people in other ways. I don’t need to have them around me physically. I can talk and have a laugh with them online.

When it comes to my future, excuse my language, but who the fuck knows what their future will hold? No one knows for certain. So why worry about it? I’m stable at the moment. I’m not limited in what I can do. I shouldn’t sit a fret about what’s to expect. I should focus on now. What I’ve got and what I can do.

Because actually….. I’m in a good place right now.