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 before๐Ÿ˜‚) 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!


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!! ๐Ÿ˜‚)

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 word๐Ÿ˜‚) 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! ๐Ÿ˜‰๐Ÿ˜‚

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 forgot๐Ÿ˜‚).

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 raspberry๐Ÿ˜…๐Ÿ˜‚) 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.

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 annoying๐Ÿ˜‚

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 it๐Ÿ˜‚ 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… ๐Ÿ˜…๐Ÿ˜‚

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 ๐Ÿ˜

It’s creeping up on me…

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

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

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

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

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

Hope at last and … Gangnam style?

I’m a few days late but this post is going to be about what happened this month 6 years ago..

I think the easiest way is to share my statuses and explain them the best I can, so first of all, here are my facebook statuses from March 2013… (By the way – I did have the exact date for each of these but I’ve lost them๐Ÿ˜‚ but they are in order! Haha)

So… this status above. For some reason, in my head they discovered my stomach was large in September 2012 … but by this status, maybe they discovered it later on down the line…

I remember having the tube inserted during x-ray (I was awake). They had to do it under x-ray because of the shape and size of my stomach. It wasn’t pleasant to say the least!

And yes… by this point I was very well known in the x-Ray department. As soon as I arrived I didn’t even have to say my name – they knew me so well and just was like “hey Katie!”๐Ÿ˜‚.

It was also by this point, where I’d had enough of having time of school… I was bored and missing my friends. I was also missing normality.

And this is where Gangnam style comes in… ah. This story still makes me chuckle๐Ÿ˜‚.

So… yeah. Also this status also mentions the time when my surgeon and his team ‘discovered the problem’ – which again, in my mind I thought that was discovered in September 2012 … obviously not๐Ÿคท๐Ÿปโ€โ™€๏ธ๐Ÿ˜‚. But then again, this may have been an additional problem?๐Ÿค”

So they found that by inserting a balloon inside of me… they could open up the top stomach valve which was almost so tightly shut .. so much so food was struggling to go down.

I remember being wheeled back to my ward after being in recovery and seeing my surgeon and his team standing outside my door… all smiling at me and my dad. It was weird … but a good weird….

When I find out why they were standing outside and what they had discovered – it felt like a massive relief! I was so happy that there was a reason as to why I had been struggling the way I had been – it wasn’t my fault! There was a problem there! And this problem could now possibly be solved!

Oh and the ‘Gangnam style’ situation …. I can still, to this day see my surgeon and his team dancing around the operating table to it…

I remember this PH Test… I had that tube down one nostril and my feeding tube down the other nostril … it was like my nose was a bloody charging socket! ๐Ÿคฃ

I can’t actually remember the results of this test … I just remember how uncomfortable it felt..


This is a quick post to ask for suggestions about what you, as a reader, would be interested in reading about on this blog.

Unless something significant happens in my life, I don’t really have much to say currently. I could carry on with my story but the next part is the big chunky bit about the year 2013 when a lot happened with regards to having many many operations and my life changing. But ideally I’d like to start that in January – as that would mark 6 years.

Is there anything you’d like to know about me, anything you think you would be interested in finding out about me and my story? Maybe there’s some advice you think I could give?

Let me know by commenting on this or, as I will be sharing on social media, on any of my social media platforms.

Thank you,

Katie x

Invisible illness: A blessing or a curse?

I realise I haven’t done a blog post in a while. The reason being is that I’ve been wanting to focus on moving on in my life. I’ve been looking for work and just focusing on doing things that a 21 year old would do.

Anyway, I thought I’d make this post about something I’ve been thinking about recently. My ‘invisible’ illness. It’s invisible because no one can see it. I know I have this illness. I know how it effects me. My friends and family know about it too. But they only know from me talking about it. To strangers or just people I don’t really know well, I haven’t got an illness. I’m going to talk about the pros and cons of having an invisible illness.

(Obviously, everyone’s situation is different and I’d just like to say these are my own opinions. It doesn’t mean they’re right and it doesn’t mean they’re wrong either.)

Okay, so pros of an invisible illness (I mean, having an illness isn’t necessarily positive, I’m talking about the invisible aspect of it):

  • People treat you the same as they would anyone else. (If they don’t know about it)
  • What I mean by this is that, because people don’t know that you have a chronic illness/disability they don’t ‘tip-toe’ around you. They don’t talk to you in a way that shows they feel sorry for you. And, in a way, aren’t careful with what they say around you thinking you’ll be offended. Don’t get me wrong, there are people out there who treat you the same despite knowing about your illness. But I’ve seen first-hand how people can change after discovering you’ve actually got a chronic condition.
  • Again, this is my opinion, but I don’t like when people find out about me and assume that they have to be careful of what they say to me. I may be sensitive at times, and it may be hard to tell, but honestly I’m not easily offended. I’ve learnt in life to laugh, a lot, at things that adversity throws at me. If I make a joke about my stomach or something, I want people to laugh along with me. There’s been many times when I’ve made a joke about my stomach and people don’t laugh. They do a little grin and a noise of some sort, but I can tell they feel a bit uncomfortable. They feel like they can’t laugh. Do they think I’m testing them or something? Because I’m not. I encourage my friends and family to laugh along with me. I don’t like when people feel uncomfortable around me. I’m me. Yes I’ve had a few battles. But who hasn’t? I’ve got a few scars, so what? I’m still human. I’m still a 21 year old woman.
    • You can pretend you don’t have an illness.

    This may sound daft but let me explain. There are days where I think that my illness has taken over. Mentally as much as physically. I feel that I’m not Katie, I’m someone who has a chronic illness. That’s not right. I shouldn’t have a label. I don’t like thinking that I’m a person with a disability. I am, but I’m capable of a hell of a lot. There are days where I can almost forget that I’ve got what I’ve got. Focus on other things, like what I’ve been doing recently. Focus on my personality, me as a person. Doing activities that I enjoy doing. It helps that I can hide my illness. My stomach is easily hidden. My symptoms can be easily controlled most days. Despite me occasionally thinking “why me!”, I’m actually quite fortunate given my circumstances. To many people, I’m just a small 5’2 woman with a shy yet distinctive personality. I like that.

    Also, I’m not saying you should pretend you don’t have an illness- if you have one – I’m just saying, for me, knowing that I can kind of push the whole aspect of my illness to the side and not let it get in the way of living is very beneficial.

    Okay, Cons! If I’m honest, I can only think of one at this current stage. So here we go, cons of having an invisible illness:

    • No one understands

    The biggie. Now I know I said how I like when people treat me as if I haven’t got a disability/illness whatever. I do. But there are days where I feel like crap. One thing that can annoy me/upset me is when I am feeling really sick, tired, I’m in a lot pain and I’m talking to someone. I’m trying to not focus on the symptoms but it’s hard, and that person says “you’re looking well”. Now, you’re probably thinking – but that’s a compliment Katie? They’re only being nice. True. They probably think they’re being nice. And they are, I respond by saying thank you and giving a smile. In no way am I blaming them. This is something I can’t control.

    But what I’m saying is, because I can’t physically show that I’m not well, it’s hard to let people know I’m not feeling well. If that makes sense? There are days where I find it hard to talk because of the amount of pain I’m in. People think I’m okay because ‘I look well’. I don’t want to seem like someone who continuously complains about their problems; the amount of pain I’m in, how sick I’m feeling, I just don’t want to be that person. So I tend to keep quiet about it. But sometimes it gets too much and in frustration I will just burst into tears and just let it all out. I don’t want people to think that I’m pretending I’m feeling that way just because I don’t mention it all the time. I feel like if I was that person who constantly said how I was feeling physically everyday, people would see me as someone looking for attention. But if I don’t say anything apart from the days where I am really really sick (which is actually quite rare now) – would people actually believe me? It’s hard.

    Can I also just say, In no way am I wanting it to look like I’m feeling sorry for myself here. I’m not. I swear. I’m not that sort of person. I’m just saying things as they are. In my perspective.

    I guess here, the pros outweigh the cons. Which, for me, shows that having an invisible illness isn’t so bad.