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.

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:

Button Change

Every 3 months I have my feeding tube taken out and a new one put in. (it sounds worse than what it actually is).

Last night was the first night I changed my tube myself without a nurse assisting or even just being there. It was just me, and my kind of nervous dad. He and my mum have been trying to persuade me to book a nurse to come to our home to assist me in changing it, as I’ve always done for the last 6 years however I wanted to do it myself this time. (plus I was scared of contacting the nurse I had last time as she was a bit scary and basically quizzed me on everything I was doing whilst doing it – I felt like I was doing an exam on top of a practical!! 😂)

Anyway, I felt confident that I could do it myself! I just needed one person with me to pass me the stuff. There’s not much that can go wrong.

When I’ve told people that I have my tube changed every 3 months or so, they normally cringe a bit and ask if it hurts. 1, I know it sounds quite…. Icky? (couldn’t think of another word😂) but it’s really not that bad and 2, no… It doesnt hurt. It can be a bit sore but I’ve found a technique to help with that.

It’s not as bad as you might think. A nurse once described it to me as “taking out an earing and putting a new one in but without the back part” and it is, technically.

Above is a photo of all the equipment I use to change the button. (again… It looks scarier than what it actually is). I must say, it is all sterile and everything. Me and my dad (who was the one passing me the stuff) washed our hands thoroughly too – don’t worry we know about hygiene and sterile stuff from our experience of hospitals! 😉😂

Now I’m going to explain to you the parts I use (I don’t actually use all of it – I don’t need to)

This is cool, boiled water. I boil the water up in a kettle and pour it into a mug or cup or whatever and leave it for a while for it to cool down. I can’t remember the full reason why we do this, but I know it’s more clean and sterile to be put in the balloon of the button that way. We always do this when I change the water in the button every week too.

These are two syringes. One is filled up to its max of 5 mil – ready to put into the new balloon once changed. And one is empty and will be used to take the water out of the old balloon.

When changing the water in the balloon (weekly), I know if the balloon is fraying by the colour or consitency of the water… If the water is cloudy and/or a funny colour then I know I need to change the button soon.

Now this is the important bit…. The actual tube. I’m sorry I didn’t get a close enough photo (I forgot😂).

I’ve found a photo online… Source unknown…

So yeah… That’s what it looks like in its full form. And as you can probably see from my photo… Its so small!

The balloon… As you can see from this picture… Holds the tube in place inside. It doesn’t actually go that far into the stomach (as many people assume), well my one doesn’t anyway. It only covers the top stomach lining.

And it just slots into the small hole in my stomach. A small bit of plastic. My own belly button. And it’s the only belly button I’ve got.

So that’s all the equipment used to take an old button out and put a new one in. Now you’ve got all the info on each part.. Let me explain the whole procedure in steps…

1) I get the equipment ready and wash my hands (obviously..) I also test the new tube’s balloon by filling it up with water and taking the water out again. I need to make sure the balloon has no leaks or anything that could affect the position of the tube or tube itself.

2) I lay down in a comfortable position. (laying down is the best position as you’re muscles are more relaxed and not tense)

3) I get passed over the empty syringe and connect it to the little nozzle on the side of the tube. I then take out all the water in the balloon (should be 5 mil)

4) I disconnect the syringe and hold the tube in place. Its unlikely but there is a chance the tube could just pop out. I want to make sure I have the new tube in hand just in case. (it depends on the person but I have been told there has been some cases where the hole in the stomach has automatically closed once a tube isn’t present… And I can’t risk that as that means having another procedure to have another hole put in)

5) I start my breathing technique. I breathe in…. And out… And in… And out… And so on.. Until I feel ready to take it out. I take it out as I breathe out. This is a technique that I was introduced to a couple of years ago. It makes it less sore to pull out as your muscles relax as you breathe out.

6) Once its out.. My stomach makes weird noises (as expected…. Last night it sounded like my stomach was blowing a raspberry😅😂) and I get passed the new tube and pop it straight in. It literally just slides in.

7) I then get passed the syringe with 5 mil of water in and connect it to the side nozzle on the tube. I slowly fill the balloon of the tube with water.

8) I then give it a quick, gentle twist to make sure its secure enough but also free to move a little.

And that’s it. All done. The actual taking the button out and putting a new one in, takes a few seconds. It’s really not that bad…. But saying that, I’ve had to learn to adapt to it for the last 6 years.

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.

Behind the scenes

I’ve said before…many times.. That I basically have an invisible illness. A lot of people would not know what I’ve been through if I never said anything.

I hide it well I suppose. There’s a few common, every day, symptoms that people may see me have. For example.. I might hold my back as I’m having a bit of back pain (although I don’t always like to admit it) or my unstoppable hiccups which appear out of the blue and are funny at first but can get pretty annoying😂

But.. There’s also a few that people don’t see me suffer from. Because I hide it well from others.

There’s one particular symptom or cause of condition that I don’t talk about often. It’s because im not too sure how to explain it and plus… I’ve been a bit embarrassed about it I guess. But today I’m going to share with you what happens behind the scenes, when I’m at home (sometimes out and about but that is very very rare). The only people who really know about it and support me through it is my mum, dad and brother…. Because they live with me and so I can’t really hide it from them.

Okay… Now I’m going to stop rambling and get on with it😂 Basically… You’ve heard me talk about my ‘bad spells’ before, but I’ve mainly explained what I’ve been like on a bad day. I don’t talk about these “fits” that I have.

I’ve literally only just recovered from one of my regular ‘fits’ which is one of the reasons why I felt like I want to talk about it now… Whilst it’s all fresh in my mind.

I think the easiest way of explaining this to explain what has literally just happened.

So… I was sitting down on the sofa with my family eating our dinner. We’d finished and took our plates out. As i sat, letting my dinner get down I started to feel funny… I felt a bit faint, my chest was tightening and I started to feel sick. I knew what was coming…. And I’m sorry in advance if it gets a bit too.. Eurgh… 😅😂

I had to retch. Not vomit… But retch. I can’t physically vomit anyway. (because of the surgery I’ve had). I then went into a state of repetition retching. I couldn’t stop. I also started shaking and my body was… Tensing and Pulsing (not sure if that’s the right word). I was also starting to feel hot. I know it would be over in a few minutes and I’ll be fine… I just had to persevere with it… In fact the more I retched… The better I felt over time.

Once the retching had stopped, my body had relaxed and I had started to cool down. I did some simple breathing exercises to calm down… And now I’m absolutely fine! Whilst this was happening my mum was around if I really needed her but she, like the rest of the family, know that all they need to do is let me get on with it. I’ve learnt to control it so it doesn’t last long. I know what to do.

This normally happens when I’m at home fortunately. If I’m out and about and I feel a bad fit/spell coming on I tend to try my hardest to conceal it. Although sometimes that’s not always possible..

But yeah… I just thought I’d share some behind-the-scenes. Its not something I bring up often and it’s not something I enjoy talking about as it reminds me that I have a weakness. But… Talking about it here… Has made me realise its not a weakness… Its just a challenge that I always overcome 😁

My appendix got stolen!

Well…. Thats the way me and my family see it anyway haha!

Let me explain..

Around this time 6 years ago I was in and out of Kings having surgery and different procedures. Obviously at the time we were just focusing on what was happening and making sure I recovered. I knew I was having my organs moved and I knew that I was having a stomach wrap to shrink my stomach. But I didn’t think any organs were going to be taken out.

Anway fast forward a few years, where I’m stable and starting to be able to live a normal life… I was living my life focusing on the recovery when… I found out that apparently I didn’t have my appendix anymore!

Obviously it’s nothing to worry about. Appendixes aren’t used anymore and it’s quite common to have them removed – especially with people who have to have surgery in that area.

So I’m not worried about it at all. It’s just funny that i wasn’t told that they were removing.. Or had removed my appendix. I found out a few years later.

Me and my family joke how it was ‘stolen’ haha! 😂

So if you see my appendix anywhere… Give us a call! 😉😂