6 years…continued

So, where did I get up to?

Oh yes, I’d just arrived at King’s College Hospital in London.

*coincidentally I have recently been notified that it was on this day 6 years ago that I found out I was to be sent to King’s the following day – see screenshot of status I uploaded onto Facebook on this day below (actually they wanted me up there that evening but my dad wanted to sort some clothes and that out so requested for me to go early the following morning)*

It was an interesting day to say the least. I was really not looking forward to going to King’s. I know it’s a good hospital but I think it was the fact that it was a massive hospital and was based in London. You hear all these stories of people being sent to a London hospital such as King’s when they’ve got major injuries or conditions.

I remember the night before I went. I couldn’t sleep. I knew the staff at my local hospital. I knew the environment. I knew how close to home I was if mum or Dad was needed.

I burst into tears and spoke to a nurse that night. I couldn’t sleep. I was petrified. I did my research on the hospital and looked up the ward I was going to be on. Don’t get me wrong, it looked okay but, again, it was a scary time.

Anyway, fast forward to being admitted. So I don’t remember much about this time, but I’ll try my best to remember what I can.

One of the first things that happened once I had settled, was that we discovered they had my name down wrong. Me and Dad noticed this when my nurse for that day came to see me and introduce herself. Looking back now, it is actually a bit amusing. Back then though, I wasn’t that happy if I’m honest – but that’s probably because of the stress and anxiety I was feeling from moving hospitals.

Anyway, my nurse wanted to confirm some of my details or something (this event is a bit of a blur to me apart from the next part..) One of these ‘confirmations’ was of my name. I think she asked something along the lines of “You’re Katie-bell aren’t you?”. Yes you read that right. Katie-bell.

I remember looking at her briefly, blankly, and saying – in a bit of a sassy tone may I just add…. (sorry Carrie – I know you’re probably reading this๐Ÿ˜…๐Ÿ˜‚) “Katie.” And she responded “oh, you prefer ‘Katie’ do you?” And I was like “No my actual name is Katie. Not Katie-bell” ๐Ÿ˜‚๐Ÿ˜‚

To this day, it’s a mystery to me as to how the name “Katie-bell” come about. And yes, I know it sounds like Tinker-bell. It’s a nice name. But it’s not my name. The only thing me and my dad have thought of is that when my local hospital rung King’s to give them my details, they began saying “Katie” then someone rang the bell at the door of the ward so the person on the phone shouted “bell!”. And so the person on the other end of the phone at King’s wrote that down. Thus, Katie-Bell. All in all. It’s actually quite a funny story๐Ÿ˜‚

Anyway, after that incident was resolved, I remember seeing many doctors and specialists. There was a lot of introductions! It was mad!

I had my obs done, bloods taken (which is quite the challenge for me – cannula’s have always been quite difficult to get into me) and was finally left alone for some time.

Now I can’t remember whether it was on this day or one of the following days, but I do remember a crucial moment from this time. It was when I went down to X-Ray.

Now this. This is when I realised. When my dad realised. When the doctors, consultants, nurses etc realised. That there was something quite seriously wrong….

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6 Years…

This month marks 6 years since the event that, well, made me who I am today.

6 years ago this month, I became really ill. I was 15 years of age and incredibly small. Throughout the majority of my childhood and teen years, I had always been small-built and considered underweight. No one really knew why but we put it down to my genes and the condition I was born with.

At this stage, I’d reached a scary weight of 3 stone. I was dangerously thin. Something was obviously seriously wrong. Early September, I was due to start my two weeks of work experience at a nursery. I was in year 11 (my final year of school) by this point. I managed 1 day. I felt a bit rough that day, but managed to hold it together and carry on as normal as best I could, until I got home. I went down-hill very quickly and within a couple of days I was admitted into my local hospital and put on a drip. I was at my weakest..

The photo above was taken on this day (7th September) in 2012.

Because I had gotten so weak, they decided that it may be best to give me an NG tube to help build me up and make me feel better, as I was now struggling to eat myself (I had always had an on/off relationship with eating – it’s never been great, but by this point I could hardly eat a thing).

After a few days being boosted up with a drip and NG tube feeds, I was blue-lighted up to Kings College Hospital in London. This was because even though I was feeling a bit better, it was very obvious something wasn’t right and my consultant felt that it was time that I moved to a more specialist hospital.

I remember the trip up there, I was petrified. A new hospital. A London hospital. A big hospital. A specialist hospital. Scary stuff for a young 15 year old.

I arrived at Kings. My dad was also with me. I was a bit cheeky when we arrived though (got to lighten up the situation in some way, hey?). The paramedic asked me if I was feeling okay and if I wouldn’t mind walking to the ward – if not, it wasn’t a problem as they could take me up in the bed. I said how I felt a bit faint so I’d rather be taken to the ward in the bed. So they took me through A&E, through the corridors, to the lift and up to the ward. Princess Elizabeth Ward I had been admitted to. Once we’d arrived at the ward, I’d settled in a bit and the paramedics left Dad asked me if I was still feeling faint. I replied “I wasn’t actually feeling faint. I just wanted a ride in a hospital bed!”๐Ÿ˜‚

So, if any of those paramedics ever read this; I’m sorry for the hassle! To be honest, I’ve had so many rides in hospital beds now – I’ve had enough of them!!

To be Continued…..

Welcome!

Hey! I’m Katie and this is my blog. I decided to write a blog because;

  1. I wanted to share my story
  2. I wanted to have a way of possibly helping someone else in a similar situation
  3. I have studied media for a good few years and felt that this sort of thing is just a perfect way for me to gain skills and experience as well as talking about something that’s quite a big part of my life.
  4. And I wanted to use this blog as a diary for myself, in a way

So yeah, I hope you enjoy reading. There will be lows, but there will also be many highs! I am more than happy to answer any queries you have or if you just want to say hi – I love meeting new people, so don’t be afraid to click on the contact tab for my contact details!

Many Thanks,

 

Katie x

Humour helps

My last post was a bit gloomy so I thought i’d make this post more upbeat and positive, with a bit of humour.

First of all, I’d just like to thank a good friend of mine for some advice she gave me after seeing my previous post. She suggested that basically when I have days where I’m feeling like I did loads of things wrong and/or am questioning everything I’ve said and done, try to think and make a list of the good things I did that day. The positive things.

Like, on that day, well you probably saw what I did/thought, but when I look back at that day again I should have actually seen a nice day out with a couple of friends. A day where I saw a film I really liked. A day where I had a good catch-up and a laugh. A day where I got out of the house to be social. So yeah, it was actually a pretty good day. And I will try to start making a list – like a pros and cons list (with the pros hopefully outshining the cons). I might show the list on this blog or keep it private – that is what I am to decide.

As well as mentioning the above, I thought I’d share some of the more positive and funny moments of my life – particularly set during my time in hospital. I know it probably seems odd, having some of my happy, humorous memories being set at a hospital – believe me there’s plenty other nice memories from other places such as school and college too! – but I think these stories I’m about to tell you show not only you but also proves to myself that despite what negative situation is sent to try me, there is always a positive side somewhere. You have just got to find it.

Anyway, enough rambling on. Here are my top 3 situations in my life that have resulted in humour.

  1. The NG tube incident.

I had an NG tube (Nasal-gastric) for about a year – maybe just less. I can’t remember if I mentioned what happened in September 2012? If I haven’t, I will be explaining fully soon. But basically, my weight dropped quite severely and I became quite ill and in need of more operations but because I was so underweight and weak – I was given an NG tube for a while to build me up for these operations.

So, there were a few times during my stay as an inpatient in hospital where I was bored and because I have a slightly silly/cheeky sense of humour, I thought it would be fun to well, have a bit of fun with the nurses/doctors. Particularly, on this occasion. I had a student nurse look after me, along with a qualified nurse. They were both great. I had to have the pH level of my stomach acid tested due to the end of my tube being positioned in my stomach. The level had to be tested because they had to check that it was in the right place of my stomach. Different parts of the stomach had slightly different pH levels and it was important that the tube was in the right part. It was also to make sure it hadn’t got caught up anywhere or got stuck in a place that wasn’t my stomach (for this, the level will be wrong or not conclusive). To check the tube was in the right place, the nurse – or myself at times – would take a syringe and attach it to the other end of the tube which was showing (the NG tube is inserted through my nose – so the other end of the tube not in my stomach is stuck on one side of my face). The student, in this case, proceeded with doing this and then started to pull the syringe back (the process being some acid will be sucked up the tube and into the syringe – sorry if it sounds gross). Now, I thought it would be funny to suck in my cheeks as she pulled back the syringe to make it look as if she was sucking out my insides. She panicked, apologised and started pushing all the contents (acid) inside of the syringe, back into my body. Oh boy. I obviously quickly stopped and said “I was only joking”. Dad burst out laughing, as did the qualified nurse. She then, luckily got the joke and also laughed. That moment didn’t last long but the memory will stay with me forever. Because it was funny for me and for everyone else in the room. I love making people laugh.

(Here is a photo of me doing the exact action….although with out the cross-eyes haha!)

2. The ‘Wasting away’ incident

Sounds a bit worrying. Bare with me. So, at one stage there was a time where I had been admitted as an inpatient due to a few problems with my stomach. I had been there for a good week, at least, by this stage. It was getting to the point where I was actually wanting to eat. I was hungry and craving different foods which normally is a good, rare, thing for me. However, I was nil by mouth due to the tests I was having. Though I understood why I was nil by mouth, I wasn’t happy about it. Me and my dad decided to have a bit a bit ofย a laugh with the doctors/surgeons who were doing their ward rounds (this one was kind of his idea to start with but I added onto it).

What we did is put my teddy (yes, I had a teddy called ‘lucky’ – I felt like it brought me luck whilst I was in hospital) on my bed, with it’s head up against the pillow. And then we laid my pyjamas out flat on top on the bed to make it look like the teddy was wearing the Pj’s.

We pulled the curtain round, sat on the two chairs in my cubical and waited for the doctors to get to us. We heard them get closer then the curtain got pulled round. There was a second silence then Dad said “Told you, you should have fed her” (or something along those lines). Everyone laughed. I remember that moment fondly. We were quite well known in that hospital – for the right reasons luckily!

(I thought I’d have a photo of the teddy in the pj’s on the bed but I don’t unfortunately, but here’s a picture of the teddy, in the same bed, ‘listening to music’)

3. The “MY DAD’S A WOMAN!” incident

Now, this is a moment that will probably stay with me forever. And I’m quite surprised I still remember it. Probably because my dad won’t stop reminding me of it. I have told many people this story as it’s just so brilliant! (I think so anyway…)

So, it was after one of my major operations. And I had not long been moved from intensive care. I was now in special care (which is a step down from intensive – if anyone was wondering). I had obviously been given a lot of medicine to keep me as still as possible and to just prevent me from feeling any pain. Most of that time I don’t remember. What I do remember, though, are some of my hallucinations. Because of the drugs they were giving me, I was hallucinating. Completely normal for my state. And it eventually, obviously, worn off.

I must have been hallucinating a lot, but as I say, I can’t remember much of that time. One particular hallucination I do remember though. I remember being in a ward or room (that’s not 100% clear) and looking up at my dad from my bed. As I looked up, I saw – and this is no joke – that my dad had breasts! Like, you could see the outline of them on the top he was wearing. It was so weird… I looked up at him and in pure shock shouted, “MY DAD’S A WOMAN. HE’S GOT BOOBS”.

Oh dear. He must have been a tad embarrassed. In fact I think he was, considering he still reminds me of that moment to this day….

(I don’t have any photos of this moment…..obviously. It’d be weird if I had)

Haha, so yeah. There’s some amusing moments from my life. I will be sure to add some more throughout the blog!

Late Night Blog Post

Hey! I thought I’d do an update on my day. I know it’s late but mentally, I’m not in the best place right now. And so, instead of doing my usual thing of crying and asking for someone to talk to, I thought I’d share with you my thoughts and feelings whilst I’m like this.

It may seem odd. But some of you reading this may feel the same and I’m hoping that if you do then 1) you know that you’re not alone and 2) maybe contact me – it’ll be nice to talk to someone who really understands. (Not that I haven’t got much support – I know I have loads of friends and family I can talk to luckily but sometimes it helps if you to talk to someone who thoroughly understands)

Anyway, on to my day!

So today I met up with a couple of friends. It was great, we had a good catch-up, went to the cinema (Mamma Mia 2 – brilliant film – it was my 2nd time seeing it๐Ÿ˜‚), had a look around some shops and had some lunch/dinner.

Overall a good day. I think. This is generally what happens in my head a few hours after I’ve met up with friends/family or someone or just done something that day. I start having thoughts such as;

“Why did I say that?”

“Did that sound weird?”

“Why were they looking at me in that way/what were they thinking?”

“Maybe I seemed to enthusiastic/excited” OR “Maybe I seemed to low/down”

“Did I talk too much?”

“Did I talk not enough?”

“Am I good enough to be around?”

“Do they actually like me or are they just ‘putting up with me’?”

These are just some of the thoughts I am having currently. And are also the thoughts that I have near enough everyday.

Then I start questioning me, as a person, I think that I’m not good enough. I start pointing out negatives about myself. Things I’m not good at. Things I should be better at, but can’t get right. These opinions, words get stuck in a loop in my head. It’s horrible.

Deep down I know today went well. But it’s way deep down. On top of that all I can see are all the ‘errors’ I made today – no matter how small.

This is just ONE way of how anxiety affects me. And now I’m going to try and battle it so I can sleep.

No quote tonight as I can’t really find the right one for this post at the moment.

Goodnight

A, what I call, Bad Spell

So the last couple of days my health has declined a bit. I’ve had a what I call ‘bad spell’. (A bit of a Miranda reference there haha)

This is where my chest tightens up (well it feels like that anyway), and I get an uncomfortable feeling in my chest and stomach accompanied by nausea and sometimes pain. I struggle to do anything, including concentrate on the simplest of tasks.

In the past, a bad spell would include me staying in bed all day sleeping and just staring at the ceiling hoping that I’ll feel better soon. More recently, I have managed to get out of that habit during a bad spell. Despite hardly sleeping the previous night, I force myself to get up, out of bed, and go downstairs. I limit myself to what I do, in fact some people may see it as me being lazy – but I’m not! It’s just something I have to do if I want to have the bad spell last no more than a day. (That’s another thing – these ‘bad spells’ used to last almost a week – now they normally last a day!)

So yes, these ‘bad spells’ are almost becoming no more – I hope –

This issue started back in 2013, and at the time I was in the middle of having multiple surgeries (which I will probably explain in the next blog post) . These operations somehow affected my oesophagus. When I say “affected” I mean – and if I’m honest, I’m not quite sure of the reason why – my lower part of the oesophagus (the valve that connects it to the top stomach) tightened so that things struggle to go down as well as come up. Originally, I started having OGDs (a gastroscopy/endoscopy – a surgical procedure requiring a camera and balloon being put down the oesophagus and inflating the balloon to stretch it open). These procedures worked for some time but eventually had no effect on me whatsoever. So now I just, well let the symptoms ride really. I’m learning to live with it. It’s the best I can do at this stage.

Anyway, I’m starting to feel better now. Yesterday I just rested and took things nice and easy, meaning last night I slept better and I felt better in myself today – well better for me that is.

I said I’m going to finish off every blog post with a quote, so here’s today’s quote. There’s a lot of truth to it I think – especially in my case! ๐Ÿ™‚

“Life is not about waiting for the storm to pass but learning to dance in the rain” – unknown

My Story

Hi, Iโ€™m Katie! Iโ€™ve decided to write this blog to share my story and journey. I will update this blog as regularly as possible with any issues I have faced from both a mental health point of view and a physical health point of view. There will be some highs but also there will be some lows, but that’s life ay?

I also want to communicate the message to other people in the same or similar boat, that none of us are alone. Thereโ€™s thousands of people with invisible illnesses (which my illness is) who suffer in silence most of the time, and I want to try and change that.

Okay so, here’s my story. (It’s probably going to be quite a long post- I apologise in advance!)

I was born with a condition called Exomphalos Major, 21 years ago in the month of June. My mum found out about my Exomphalos at her 16 weeks scan. (Things were a bit different then, now it could be found out at the 12 week scan). For those who donโ€™t know what Exomphalos is โ€“ basically it means that the majority of my digestive organs (Stomach, bowel, liver, intestines etc.) was formed on the outside of my body instead of inside. I was born naturally and was under Lewisham Hospital (now known as University Hospital Lewisham) at the time. I had 7 operations to put everything back to where it should be, or at least roughly where it should be, over 6 months. (My dad says I was born on the hottest day of the year and come out of hospital on the coldest day of the year :))

The majority of the time over the 6 months, I had Clingfilm-like material over my organs that were on the outside of my body, to keep them protected, and start pulling them into my body.
I spent a lot time in intensive care and had so many lines and tubes. I also had a bulldog clip and a biro pen (yes you heard that right!- didn’t have a lot of the great technology they have now) on top of the Clingfilm that was covering my organs. The doctors used this to very slowly push the organs back into my body.
How? Well they turned the pen a little each day, which ever so slightly tightened the Clingfilm.
I was fed via TPN for some time (a very special feed that goes into my vein) as I could not consume anything.
I was still quite small, even though they say I had a healthy baby weight.
Mum and Dad lived in Maidstone at the time, and so travelling from Maidstone to Lewisham in London was a challenge. However they did not care about that, and always made sure they were there.
Also, just a little story to share with you, in intensive care, I had a breathing tube down to breathe for me, but me being me managed to move it once so that it was in the wrong place (not a dangerous place luckily). Some how, I had disconnected myself from it and started breathing on my own without the need for a machine. I did that myself. You just can’t get the staff these days. Haha!

I started to get stronger by the day. This meant I could be home for Christmas, and it was quite a happy time for the family. My mum and dad had to persuade the hospital a little bit to let me come home for Christmas, as obviously, 6 months on I was still small and delicate.
Luckily they allowed it, and I came home. I had to have a community nurse from our local hospital come round every so often to make sure I was having the right feed, and to change my dressing on my stomach.
Things were looking much more on the upside at this time, as the previous six months, I was on blood transfusions, tubes to breath, feeding tubes to help me gain weight etc. And now I was at home, just having my dressing changed every so often, and being monitored all the time.
I had very regular hospital visits for check-ups and things at our local hospital at the time as well.
Mum and Dad knew this would be a regular thing through out my life. And I think its because of this, that when I go to hospital, it seems a bit normal and I’m not really scared or anything as I’m used to the hospital environment.
I would say, even though I had a lot going on, I was quite a happy and strong baby. Every time someone wanted to take a picture of me I would look up at the camera and smile instantly. Don’t know why, I think I just loved having my picture taken haha.
Anyway, so things were quite okay from then on for a while. I was gaining weight very slowly but surely. And after 3 years, in the year 2000 we moved to our new home in Medway.

Since then, I’ve had numerous hospital visits both as an inpatient and outpatient. I’ve had many complications resulting in more operations, procedures etc. I’ll probably go through them over the course of this blog. There’s a lot to say and I’d rather spread it out over a few blogs rather than mention it all in one.

Don’t worry though – its not all going to be gloomy medical stuff – there’s a lot of lighthearted content I want to share with you too! My life practically evolves around humour – it’s been the one thing that’s helped keep me going!

Also, I love a good quote, so at the end of every blog post, I will share an interesting or humorous quote with you all. Hopefully it will brighten your day, just a bit at least.

Life is either a daring adventure or nothing at all. โ€” Helen Keller

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