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 annoyingπŸ˜‚

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 itπŸ˜‚ 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… πŸ˜…πŸ˜‚

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 😁

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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 themπŸ˜‚ 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!”πŸ˜‚.

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 chuckleπŸ˜‚.

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 notπŸ€·πŸ»β€β™€οΈπŸ˜‚. But then again, this may have been an additional problem?πŸ€”

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! 🀣

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

Ideas

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

6 years continued + update on recent events

Hi! I know we’re in the middle of October now, well actually near the end, but I thought I’d complete the “6 years continued” story. To be honest there’s not much more to say, but I’ll tell you what happened the days leading up to me being discharged and what happened after I was discharged. (If you need a reminder of what’s happened up to this point, please check out my previous blog posts with “6 years continued” in the title)

As well as this, I will be updating you on recent events in my life. Quite significant things. To me anyway.

So, last time I mentioned the x-ray I had, the conclusion the doctors came to from seeing my notes, and briefly mentioned the picc line I had inserted.

Because, by that point, I could hardly eat anything – my new consultant believed a picc line would be most useful for me to have. If you don’t know what a picc line is, it’s basically a long tube that goes through a vein in, normally, your arm, to your heart. Or near your heart. It is a form of nutrition. But obviously, only used when people are seriously unwell.

Having this meant I didn’t have to worry about the fact I couldn’t eat and so was loosing a lot of weight and nutrients. This would help build me up whilst I was in hospital. At this stage I also had an NG tube (a tube that goes up my nose and down into my stomach). Gradually, I started having tube feeds. So a milk-like substance with all the nutrients and vitamins I needed was pumped into my stomach without me having to do anything. Little did I know, this was to become a regular routine of mine. I was at Kings for about 2 or 3 weeks (I can’t remember exactly)

During the last week or so I was just resting really. Understandably I had to, but it was hard because I was away from home. Yes, I had my dad with me. But my mum and brother wasn’t with me. They visited a few times, don’t get me wrong, but it wasn’t the same. I missed Home. I missed my friends. I even missed school.

The time came when my consultant was happy for me to be discharged, from King’s at least. He told us that they do need to operate however I still need to become a bit stronger, so he advised me to keep the picc line and NG tube.

I was then transferred from King’s to my local hospital. I stayed there for a couple of weeks. (I think, it might have been a bit longer) During this time I rested, had my picc line flushed every so often and began having regular tube feeds. And because I was now only about 10/15 minutes away from home, I was able to have many visitors. And Dad was able to go home and have a proper rest (because it was a tiring, stressful time for him too).

It was nice, in a way, but it wasn’t my proper home. I wanted my own bed. I wanted normality. I think at this point, I started to wonder, will ever have normality again?

Eventually I was aloud home for day visits. Haha, sounds like it was prison or something. The reason for this, is because I was having my ‘feeds’ at night. And so, during the day, I was free to do whatever. There was nothing for anyone to do to me during the day. So they decided that I could spend my days at home. And they eventually even said I could go back to school (which, by this point, I was thrilled about!)

I was quite fortunate that my school was sooo understanding and supportive. Me, Dad and mum went for a meeting with the assistant head at the time. We explained what had happened and what is planned to happen. Obviously, I had my tube in, on show, too and they took this into consideration, understanding that ideally I couldn’t be in the busy school corridors at break/lunch times and during lesson changes. They decided that I would be best going to a room called ‘AP’ (Alternative Provision – I think). It’s a room where I could do my lessons, have a teacher come down every so often to talk to me and give me some work to do. That sort of thing. They also decided I should be on short days. So i’d only be in for a few hours a day. This way I wouldn’t tire myself out too much.

So a regular day for me during that time, would be that I would wake up in hospital. I’d get up, be disconnected, go have a wash, get ready etc. Then mum would pick me up and take me to school. I would then stay for a few hours then be picked up and taken home. Then during the evening, I would be taken back to the hospital, get settled in and be connected ready for bed.

Eventually, the staff felt that me and my parents were ready to learn how to set up the pump. You have to be trained up on it. It’s quite simple so me and my parents caught on quite quick. When the staff acknowledged that we all knew what we were doing. We all knew about hygiene etc, I was allowed home permanently! I could have my feed at home. I could sleep in my own bed – yay!

We were all so happy! Finally – after what felt like months and months – normality! To be honest, after this, each day was the same. I’d get up, disconnect myself, get ready, go to school for a few hours and come home. I would then go to bed, in my own bed. That’s it. During my time at school, as well as what I previously said, eventually friends would come in to see me and I would also pluck the courage to go to some of my lessons. I thought – yes I’ve got a tube in my nose, so? It doesn’t bother me anymore. Yes people stared. But I just ignored them. That’s all I could do really.

Anyway, it got to November and, I remember this moment quite well, the post arrived one morning. I had just come back from shopping with a friend. It was addressed to my parents I think. But I knew it was about me, it had Kings college hospital on the envelope. This was it. This was the date of my operation. I opened it. I was right. “Katie has been booked for her operation on Friday 18th January 2013”. I looked at it. I felt a bit of excitement – because I knew that this operation could really help me as I was really ill (although the reality of how ill I was hadn’t hit me properly yet). Then all the nerves came at once. I cried. I was shaking. This felt real. I was having an operation. A big operation. I was going under the knife. I was having my organs moved around. Would I make it? What happens if things go wrong? I was scared. I hugged mum and Dad. Of course, I knew, we all knew, I had to have this surgery. But it’s scary. For all of us, but especially a 15 year old girl with her life ahead of her.

Below is a photo of me with all of my equipment. I think it was taken for an art project. I did a project on medical equipment. I found medical art and that and researched them. I drew a copy of this photo. (I thought it was interesting at the time) Sorry, I look a bit miserable – I don’t know why hahaπŸ˜‚

Okay so, nicer things now! I also said in this blog I will mention what I’ve been up to recently. You’ve probably noticed in a couple of my posts, that I’ve mentioned that I’ve struggled with anxiety and depression a bit in the past. I have good and bad days – physically and mentally! However recently, in both ways, I’ve been having many good days. I’ve been feeling positive, confident and quite motivated actually. I’ve challenged myself and taken on things that I would normally hesitate at and avoid.

These things include; going to a job interview and starting driving lessons! It may seem like normal things to many people – but to me. That’s two massive achievements!

Another thing, which I have surprised myself with – is that I’ve started taking up baking as a hobby!

Now, you will find out in detail why I, and my family are quite surprised by this, in future posts but let’s just say, my relationship with food has never been good. I’ve had times in my life when I can’t even be around food. But you’ll find out all about that in due time. So, yeah I absolutely love baking! It makes me happy and it’s a way that helps me show my creative trait.

That is all for now. Sorry it’s been so long! X