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 πŸ˜‚

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 He was a nice doctor and we chatted about the issue I originally made the appointment for.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 meπŸ˜‚β˜ΊοΈ

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! 😁



Realising my limits

Hello all!

Long time no blogπŸ˜…

Sorry.. It’s been a bit manic recently. I had both my birthday and father’s day last week. So along with work, last week was pretty busy.

I am now 22 years of age. To be honest, I don’t know if this is just a thing that happens as you get older, but I wasn’t as excited about it as I used to be when a birthday was coming up. I just thought – here I am, another year older!

(and another year closer to 30 – jeeze I’m getting old)

Don’t get me wrong, I did enjoy my birthday. Everyone around me at work and home, made it as special as the could. I got loads of lovely gifts and had my favourite dinner – chilli con carneπŸ˜‹. I also went out with friends on Friday evening for a few drinks and food (I managed to get a tad tipsyπŸ˜‚)

It’s just.. The excitement Ive had previously just wasn’t there. Maybe its just the fact that I’ve grown up, I’m not a kid anymore. Well I haven’t been a kid for a while soo..

Anyway… What did I intend to do this blog about again? Oh yeah.. Realising my limits.

This is important to me. This is also something I struggle with occasionally. Now I’m more able-bodied, I’m not as sick as I once was, I’m more mobile etc.. I sometimes forget that despite me not feeling as bad as I used to, deep down I still have a condition that can affect my daily life.

I do have a habit of pushing myself too far sometimes. I forget that I’ve been through what I’ve been through. I do too much until I start making myself ill. I need to remember that me, my body, has limits. I need to understand that it’s okay to stop and take a breather. It’s okay to listen to my body. I need to look after myself as well as work hard.

I think, the fact that I’m now “free” to do whatever I want, I want to do as much as I can in life. And that’s fine. (its a great feeling knowing that I’m free!) However, I need to learn when to stop. When to just rest. And I am now slowly learning. I don’t get ill that often as I used to which is great!

Actually.. Talking about how free I am.. I’m now starting to really think about how I used to be. And it feels like a very distant memory. I question wether what I went through did actually happen.. Because Im not in that state anymore.

I’m in a better place. I’m healthy. I’m loving life. Yes, I have some restrictions.. But that’s easily managed. I’m quite fortunate to be in the state I am now as at one stage it didn’t look possible.

I’m sorry for rambling.. This blog post was mainly a post for me to just talk about anything that comes to mind as I go along.. And this time it was restrictions and comparison I suppose haha.

K x

I don’t care

I don’t care that I have a distorted stomach

I don’t care that I have a tube in my stomach

I don’t care that I get tired easily sometimes

I don’t care that I’ve got scars

None of that bothers me anymore.

I’m happy. I’m enjoying life. My disability doesn’t get in the way anymore. I finally realise that.

This time 5/6 years ago I was practically bed bound. I spent a lot of time laying in bed with sickness and pain. I couldn’t even sit up half the time. I couldn’t move. I thought that, that was it. That would be what I would be like for the rest of my life. Spending my life in a room, being cared for and have people do things for me, and most of all not being able to go out and enjoy life.

I was 16/17… The age in which people really go out, socialise and find themselves. I was stuck in a room, frieghtned of even turning on the TV just in case a food advert came on or something. It was scary, it was horrible. It was frustrating. I wasn’t in control.

(starting this post I never intended to go quite dark.. But there we goπŸ˜…πŸ˜‚)


Eventually I overcame that. One day I just stood up and said to myself – “I’m not living this way anymore” and I slowly started to ease myself out of the ‘bed bound’ state. Yes, it has been hard. And I still struggle a tiny bit every so often… But knowing that I’ve overcome so much, convinces me that I can get through anything.

Part of my recovery was getting over my self-esteem. As I got out more, I became more self consious about my scars, about my tube, about my stomach. Eventually I got over my scars. I got over the fact I have a tube in my stomach. And recently I have been actually feeling more confident with the way my stomach looks. Yes, I know it sticks out.. and it’s a slightly odd shape. But I don’t care. I used to. I used to make sure I wore a stomach support (whether in the form of underwear, a belt or a tummy control vest) under whatever I was wearing. But now I rarely wear one.

Yes, I do get comments when I don’t wear my support. Especially the famous “are you pregnant?” haha! But it doesn’t bother me one bit! I find it absolutely hilarious! I like to joke about my stomach every so often. I think it keeps me sane in a weird way. And I like to encourage others to joke or laugh with me. Why not make light of what could be a bad situation?

Infact I had a bit of a funny moment today, where my stomach decided to come out of the support I was wearing (I was wearing a kinda tight dress so wanted to bring my stomach in a bit to make it look a bit better). I was talking to a kid and then.. Out of nowhere… my stomach come out of the support and sprung out (making me look like I had a bump)πŸ˜‚ The poor kid didn’t know what to say… And neither did I. But it was bloody hilarious!! 🀣

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!! πŸ˜‚)

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 wordπŸ˜‚) 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! πŸ˜‰πŸ˜‚

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 forgotπŸ˜‚).

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 raspberryπŸ˜…πŸ˜‚) 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


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 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 😁

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! πŸ˜‚

So if you see my appendix anywhere… Give us a call! πŸ˜‰πŸ˜‚