Dear 15 year old Katie..

Ive been doing a lot of reflecting recently. I’ve been thinking a lot about how far I’ve come and what I’ve achieved within the last 7/8 years.

I think it’s because this time 8 years ago I became really unwell and life started to change in a way I wasn’t expecting. I won’t go into detail as I think I’ve gone through this many times before on this blog haha.

I remember feeling scared, anxious, and worried of the future.

At one point I was worried that I wouldn’t have a future..

I’ve been thinking, if I was able to go back in time and see my younger self, what would I say to her? I think many people would like to go back in time and speak to their younger selves.

I’ve put what I want to say into a letter… Here goes..

Dear 15 year old Katie,

Times are hard at the moment. You’re not entirely sure what’s going on. All you know is that you have to keep smiling and laughing. (I know some of Dad’s jokes are bad but just bare with him… He’s trying😂)

You’ve seen many doctors and nurses come and go already.. And you’re yet to see more but don’t worry – they all want to help you!

You are unwell and have just found out or soon to be finding out that your organs are in the wrong place. The mention of operations and tests terrify you – but like your new consultant will eventually tell you – “hang in there!” And if you hear the words “organ failure” – yes there is a risk, but you have not got organ failure and you will not get organ failure as the doctors and surgeons will get to you before that happens.

It’s going to be a bumpy ride, I won’t lie to you. Some operations/procedures will work and some won’t. Unfortunately because your condition is unique no one knows what will definitely work but it’s okay because you will get through it!

Some procedures will seem like they work but then fail as soon as you feel like it’s worked – but don’t give up hope!

You’ll have junior and training doctors come to see you because your condition is unusual but don’t worry they’ll only examine your stomach and listen to your heart – you’re unique – embrace that! (you are going to get so many that you end up creating a poster/ price list for examinations of yourself – which the doctors and nurses are going to love!!) *get a free I met Katie mug will be particularly a favourite 😂

You won’t have the tube in your nose for much longer.. It’ll be replaced by a mic-key button (that’s what it’s called.. Its not what I’ve named it as many people you come across will think😂)

This is a tube that goes directly into your stomach.. Its not as scary as you might think, honestly!!

Use the support around you Katie. All your friends and family are there for you and want to get you through this! (and be prepared for many lovely cards and gifts – especially teddies! 😂)

Most importantly Katie, YOU WILL COME OUT THE OTHER END! You wont be living in and out of hospital forever. You will be back at school (I don’t know why you missed school work so much… You’re such a weirdo 😉😂) you will be able to go out with friends and family and socialise. (including going out for meals – despite not being able to eat a lot you will find away to still go out and enjoy food!) You will catch up. You will have an education, get some GCSEs, A Levels and qualifications in media and business admin. (You will attend 3 years of sixth form to catch up with GCSEs and gain a couple of A-levels as well as make new friends, 2 years of college studying creative media production – where you’ll have fun and meet some amazing people and gain more amazing friends! You will then do an apprenticeship at a local school – your first ever job!)

You do have a future. You haven’t missed out. You will learn to drive, you will get a job, you will get into a relationship (with someone who loves you for you, believes in you and knows your condition doesn’t define you). You will have fun again, you will laugh properly again.

If I’m honest with you Katie – the next couple of years, that’s not going to look possible, but please don’t give up – because it really is! Once the hospital life calms down and you’re starting to live a normal life – your mental health will be affected. It will all hit you like a ton of bricks, but please listen to your friends, your neighbours, your family to get the help you need. Because you are more than someone with a disability. You are capable of so much. You have a couple of limitations, and yes you’re left with scars and tube in your stomach but that does not define you!! You’re funny, kind, brave and beautiful inside and out.

You’re/I’m 23 now. I’m doing a level 3 apprenticeship in business admin at a family hub (you completed level 2 working in a school last year). I have been a relationship for over a year. I am learning to drive. I’m going out with friends and family (well was… A pandemic is currently happening… Long story😅)

Yes, you unfortunately do still have the tube in your stomach but you’re only using it at night – and some nights you don’t use it at all! You’re free during the day to do whatever and you are living a life. You have a few pains and sickness every now and then but you do manage! You’re still on medication but that’s okay.

I’m happy. I’m safe. I’m comfortable. And most importantly… I’m proud. I’ve come so far. You’ve got one heck of a journey to come and things won’t always be easy, but you’re going to make a lot of memories – most of what you remember will be nice, funny etc ones! And you’re going learn things along the way. The nurses and doctors at kings are fab – they become yours and dads friends as you build bonds with them.

Remember Katie; keep smiling, keep trying, and never ever give up – no matter how tempting it seems! Cry if you need to, scream if you need to, no one will blame you. You will get through the hard times. Let your cheeky, mischievous side out – you’re gonna need this side to help keep you positive.

You can do it!

Katie – your future self.

PS. Be prepared for uncontrollable hiccups – they start appearing out of no where and can occasionally sound odd and make people jump… (dad says some of them sound like a car horn in reverse😳😂)

Am I ashamed of my pump?

No. Is the simple answer to that question.

I’ve always said how I like to see myself as living a ‘normal’ life nowadays. And I do. I really do.

But I suppose some things in my life that I consider normal, aren’t normal to others.

I guess that’s the same with anyone, but for me I think one of my “normal” things that I don’t blink twice at… is my pump.

I understand why people don’t see that as normal. I haven’t always been connected to a machine. It’s only since I was 15. Before that age I wouldnt see being on a machine as “normal” (I don’t mean that in a horrible way. I know there’s a reason people are on machines and if it helps them then it’s a good thing)

However It’s now become the norm for me. I mean don’t get me wrong, I’d love in the future for there to be some miraculous cure which means I can come off the pump for good. However in the here and now, I’ve managed to get used to the idea of having a tube feed overnight. So much so that I find it weird some nights when I don’t have it connected to me! 😂

It’s not exactly something I want to show off to all my friends and have it connected everytime I go anywhere. I’m glad that I’m not on it 24/7. But at the same time, I’m not ashamed of it. Not anymore anyway.

It’s something good that’s keeping me going. Keeping me alive practically. Its my main source of nutrients. At the moment I don’t eat and drink enough in the day to keep myself going (not entirely my fault.. Physically it’s hard managing my intake)

My FreeGo pump, tubes, and milk formula (god that makes me sound like a baby🙄😂) is allowing me to keep going and live a life.

I don’t post pictures of me connected to my pump/tubes often. That’s because I don’t want people to see me and think of tubes and medical equipment. And I don’t want them to think that, that is my life – constantly connected to a machine. Because I’m not. I’m so much more than that.

And my pump is just my way of intaking food. Like someone once told me… Everyone eats/intakes food/nutrients differently. Some people have allergies so can’t eat certain foods. Some people can’t eat a lot and some can. Some people have to have build up drinks. Some people have diet drinks. Some people have to watch what they eat and limit their intake.

I’m no different. This is my way and I’m not ashamed.

Trying but struggling

Hello again.

Long time no see hehe.

Today I’m having a bit of a… Well a roller-coaster of a day I guess.

It’s been the same as most days. I had work (from home still) and just the normal routine that I have had for the last few months.

Although I did have one slight difference. I had a phone consultation with my dietician.

I have appointments with her every 6 or so months. Just to see how I’m getting on with my pump and how my weight is doing.

Fortunately my weight is stable (I weighed myself on our scales beforehand). I’m still struggling to put on the weight but with what I’ve been through and my natural build that’s kinda normal (although also slightly annoying haha)

As well as my weight, a couple of other things were mentioned.

For a while now I’ve been getting what seems like on and off infections on the site around my tube. It gets inflamed, sore, and sometimes extremely painful. I’ve been to the doctors numerous times about it and I’ve constantly had antibiotics for it. They do help… But only for a short period of time.

My dietician is getting concerned about how often I’ve been getting these so called ‘infections’ and if they are actually infections.

There is a possibility that the redness and soreness is just because the tube is rubbing against my skin and causing friction. In which case, she’s offered me to try a new tube – which she has sent me and I am to try next week (I am due a button/tube change next week – I do it myself nowadays)

If this tube does work, and stops the burning, redness and soreness- then brilliant! If not. Then she said it could be a problem/infection inside my stomach. In which case she recommends I talk to my consultant about having a camera down into my stomach to have a look (ocg – which I’ve had numerous times in the past!)

I am hoping it doesn’t come to the latter in a way. Obviously if it does, I wouldn’t refuse the test – I’d rather know what’s going on and find a way to resolve it. However I can feel the nerves I had years back when I use to have those tests, deep within.

I like to think I’ve moved on from that stage in my life so when something like this happens and I need to have tests or something, I dred it.

Why can’t I just be left alone to live my life?

Anyway. I’m trying to tell myself it probably won’t come to that. I just gotta keep going, keep smiling and carry on.

Another issue I have at the moment is that I have a stitch that has pierced its way through my skin. Basically I have still got a few stitches left inside of me from operations I had 7 years ago. One… Or since recently… 2 stitches decide to pop up and out of my skin to say hello.

It doesn’t hurt or anything. They’re just annoying and keep getting caught on clothing 😂.

I need to have them removed. I have coped with them for a while but I swear they’re sticking out more and more, and like I said. A second one has recently appeared.

I don’t know what’s happening but it has happened in the past. Previously, my consultant has just pulled it a little and cut it down so it doesnt pop out again (or in my case… A small while)

I need to have this done again. Either by my gp or consultant. So after a chat with my dietician, that is something I will be arranging.

So yeah. A few little hiccups but I’m still going and trying the best I can. I am feeling a bit low today because of the small knock backs and just want to cry, be left alone but also hug people who will let me hug them😂 (I don’t know what I quite want haha)

I’m struggling but at least I know I will get through. I always do.

K x

Realising I’ve made it

It’s funny… I’m looking back at old Facebook statuses and old photos from 6/7 years ago… And I still quite can’t believe that was me. I went through that.

Despite my positiveness and awful attempts at humour at the age of 15/16… I was in a dark place. Both physically and mentally. I think the fact that my life was on full on go-go-go mode being transported 2 and from hospital at least once a week for almost over a year… It kept me kind of sane. I didn’t have time to stop and process my thoughts. I was either in the operating theatre, having multiple blood tests and numerous cannulas fitted, or just trying to recover from a seriously bad episode.

Being on the go all the time, helped for a while. I couldn’t feel sad. I couldn’t show weakness mentally. I had to be positive, I had to make jokes. I had to persevere and cope as best I could. It was the only thing I could do.

Although it helped, it meant that there was a backlog of negativity, sadness and lowness just waiting to burst out.

And it did.

When everything slowed down, and physically I gradually ever so slightly recovered from the operations and the treatments.

I had time to think. Finally.

But now the real fight began. I wasn’t fighting for my life anymore. I was fighting for my mental health.

And it was scary. It was dark. And if I’m honest, it was much harder to fight compared to the physical fight I had.

It went on for a few years.. Slowly getting worse and worse. Until I broke down proper a couple of years back.

Fortunately, I had a great support around me. My friends, my neighbours, my family. All were there for me. Just as they was when I was fighting my physical illness.

With their support, their encouragement and motivation, I got the help I needed. I was able to channel and let out all those negative feelings. The stress, the anger, the anxiety that had built up inside of me whilst I was being pulled and poked physically.

One of the thoughts I had, which stayed with me for a while. And I always knew it was in the back of my mind when I was on the go. I just tried to acknowledge it, was the following:

“Will I ever be normal?”

I don’t like the term “normal”. I mean, what is “normal”? Average? Nah. I don’t want to be average that’s boring.

What I meant by “normal” in this circumstance is that I wondered whether I’d ever live a life like everyone else.

I remember thinking…. Will I ever know a life outside of the hospital? Will I finish school? Will I get a job/career? Will I be able to drive? Will I be able to go out and socialise with friends? Will I go on dates? Will I find someone special to be in a relationship with?

Just simple things like that, that most people take for granted.

I was really doubtful about all of this. The first time I first started doubting, I had multiple tubes in my stomach and in my arms. I was also bed bound and in so much pain and discomfort.

A life didn’t seem possible.

BUT.

I fought. I battled through. I strided my way past the physical challenges and got myself out with just one small tube in my stomach (which I’ve learnt to live with) and I pushed myself through the mental challenges..

And you know what?

I’ve made it. What seemed impossible a few years ago, I have achieved most of it. I am living my dream life. I’m in a job I love with the most amazing colleagues, I was taking driving lessons (stopped because of corona 🙄), Ive had so many socialising occasions the past few years with my incredible friends and family, oh and I’m in a relationship and we are soon to be celebrating our 1 year. ❤️

Do I hate what I had to go through before getting to where I am now? No.

Because its made me who I am today. A fighter who doesn’t back down. I’ve learnt from the past. And I think it’s made me a better person. And I am grateful that I now have a much clearer head and I know what direction I am going in now.

If anyone is wondering why I decided to write this post and how this has all suddenly popped up in my head it’s because I’ve been listening to the following… When I listen to it I think of the words relating to me and my illness. 😊

Its Christina Aguilera’s “Fighter” (please click on link below)

Lockdown update

Just a brief post to let you guys know how I’ve been coping in lockdown.

It’s been hard… I know it’s been hard on all of us.

I’ve not been able to see my family properly. Nor my friends. I’ve also not seen my boyfriend for 6/7 weeks.

The amount of times I’ve cried myself to sleep over the situation we are in is silly. I don’t like this situation at all.

HOWEVER

I am doing the RIGHT thing.

I am keeping myself safe.

I am keeping my family safe.

I am keeping my friends safe.

I am also in my own home and have many things to keep me occupied.

I am also still able to work (from home.. Obviously).

It’s not all bad.

I have noticed though, that my “bad spells” that I’ve mentioned in the past has become more frequent over the last few weeks. Within the last 7 weeks I’ve had 2 pretty bad, bad spells.

This probably doesn’t sound like alot, but to me it kinda is. 6/7 years ago I was having at least 1 bad spell a week and over the years I’ve managed – by fighting and pushing myself to live a normal life – to get that down to 1 every few months, if that.

I think the stress of it all is taking a toll on my body slightly. Also I’m not moving around as much as I normally would if everything was normal and I was able to go to work, go out with my boyfriend and friends etc.

I am trying to 1 keep my mind occupied (as I mentioned earlier – I am able to work – so that’s keeping me busy during the week) and 2 do a bit of exercise everyday. I’m finding the wii fit very fun and beneficial during these times!!

Also, has anyone else been having weird, vivid dreams lately? I have.

In fact last night I had one which really scared me😂🙈

I dreamt that I woke up one morning and one of my scars on my stomach had opened up😳😳.

When I woke this morning the first thing I did was lift my shirt up to check – luckily all is fine! 😂😅. I don’t think that is likely to happen as my scars should be well healed by now – it’s been 7 years!

Anyway, I’ll finish up for now.

Take care and stay safe.

Katie x

Update

Hello!

Thought I’d give a brief update as to what’s been going on in my life as I haven’t posted on here recently.

So currently in my life, I am still trying to adjust to this lockdown lifestyle. Like everyone I suppose.

I’m working from home still. And have been for just over 3 weeks now. I’m still finding it weird. Like I’ve always tried to keep my work life and home life separate. But now, that is pretty hard to do!

I do try and keep a routine to stop me from going insane. For example, my work hours are 9 till 5 (cue Dolly Parton.. 😉😂) so I make sure I only work within those hours. I turn my laptop and work phone on pretty much dead on 9 and turn them both off dead on 5.

I also make sure I have a few breaks in between working. To get fresh air, a little bit of exercise and have a break from the screen. Fortunately I do have people to talk to at home so I’m not completely on my own. As well as speaking to my colleagues on the phone, via email and via video chat, I also am able to speak to my parents and brother as they are around in the house too.

What else? Erm.. Well we’ve been doing the clap for NHS on a Thursday for the last couple of weeks. I really like doing because not only is it showing are gratitude and support to the NHS and all key workers, I feel like it is bringing people together. In my street, there is a few of us who go out. We all clap and also end up having a chat…. From a distance obviously. We have a little giggle and catch up. And I find it so warming and just so nice that we all have that moment once a week where we have a little get together. It wouldn’t surprise me if, at the end of all this, we’ll be having street parties! Now that would be amazing!

So yeah that’s really it at the moment. I’m missing people who I love and care about outside of my household. Friends, family, boyfriend, his family etc. We keep in touch through calls, messages and video chat (greatful that we live in an age where we have technology like this!) but it’s just not the same😔

Hope everyone reading this is doing okay and staying safe. Keep smiling, enjoy the sunshine, take care and speak soon!

K x

Self-isolating, Working from home and a Thank You

Last week, after pondering long and hard about whether I should be working from home or not, and talking to my consultant, my GP and my friends and colleagues, I took the decision to request to work from home.

I am based at reception normally, so deal with a lot of visitors from all different backgrounds. As this coronavirus has developed I have felt that by being at the front line of the hub and having an underlying health condition, It is too risky to be at work.

I talked to my employers and sorted out a remote working system so I can work from home. I feel quite lucky that I can. I have set myself up on my laptop. And have managed to get a works phone that links up to reception.

I know theres many people out there who can’t work from home so either have lost their jobs entirely or still have to go on, risking their health. I feel for them, I really do. Those who are still going out to work, to look after the vulnerable, the sick and/or do their bit for the community itself, thank you! My mum is one of these people and I can see how concerned she is, not only because she’s putting her health at risk, she knows she has to come home and risk her family’s health too. Especially mine.

So again, thank you to all key workers! Whether you work for the NHS, are Teachers, Social Workers, Shop workers etc.. You are all superstars!

I really hope this worrying time ends soon. After Boris’s speech last night, I understand we are in lock down for a minimum of 3 weeks. It’s going to be tough. It’s going to be boring. It’s going to be lonely for many. It’s times like this I’m grateful for technology. Use your phones and use your laptops to contact friends and family. Use it also to play games with friends, learn new skills and develop knowledge on anything youre interested in.

Stay safe and try and stay sane! 😂

I hope after these 3 weeks, we’ll have good news!

Finding the right rate for me

This is my FreeGo Pump. (no I haven’t nicknamed it “FreeGo” – that is the make of the device😂)

I use this most nights to provide myself with all the nutrients and supplements I need to get through every day. I don’t eat or drink enough within the day to survive basically so, at the moment, I need this to help build me up and keep me fit and healthy.

Different pumps have come and gone throughout the time I’ve had tubes into my stomach. Ever since September 2012.

I remember when I first got told I’d need a machine to pump fluids/nutrients into me… I was petrified. I’d seen TV shows and read in magazines of people, adults and children, who live off these machines day in day out, leading a very limited life due to the fact that they were fed through a tube.

I was scared that I would become so dependent on a machine that I wouldn’t be able to do “normal” things. Go out for a meal with my family. Meet up with friends for a coffee. Go shopping. Go for a walk in the park. All simple, silly, normal things. I felt like people would stare at me and feel sorry for me. I didn’t want that. I didn’t want to feel vulnerable like that.

Time went by and I started using this ugly looking pump machine pumping this milk mixture into my stomach through the tubes I had connected.

At first, I was using it on and off throughout the day as well as at night. It was horrible. I went to family events connected up to it and felt embarrassed. I felt like I was weak. I felt trapped.

I felt like I wasn’t getting anywhere. I didn’t want to be connected up to this machine for life. I wanted to live a life. I wanted to be free.

More time went on… And things actually started improving. The first big step was having the tube that I had in my nose removed and replaced with a direct port into my stomach. My Mic-Key button (no… not a nickname😂). I didn’t have to witness people staring at my face anymore! My face was clear from tubes and sticky dressings!

The next step was using the pump less and less. It took some time but eventually I became less and less dependant on it throughout the day. I was able to go to school, meet up with friends, and just start enjoying life a bit more because of the freedom!

I grew stronger and managed to alter the times that I have my feed (because I still relied on it) to night time only. Meaning, I’m only on it whilst I’m asleep in bed!

The only thing I alter now days is the rate of which it pumps the feed into me. I have recently found a nice rate per hour (65ml) that means I get a good amount of fluids and nutrients throughout the night, plus a reasonable appetite during the day! (the higher the rate, the less of an appetite I have throughout the day – which makes sense)

Being connected up to a machine seemed like a big deal at first. But now, now that I’ve proved that I’m in control and it is not limiting my life, it’s a piece of cake! It has become my normal bed time routine and I feel a bit odd having nights without it😂

Turning things around and making a life worth living

I’ve been feeling much better today. It was touch and go this morning I must admit, but as always, I’ve pushed through and got out the other side. I feel like me again!

When I feel rough. When my condition flares up and I let it take control, yes it makes me feel rubbish. However it does make me appriciate my life more. The life I have pushed for, for the last few years.

Despite my little wobbles every now and then, I am now healthy and stable. And I have been for the last few years.

And I am lucky. I am lucky to be able to be in control of my life. The choices I make, although they sometimes have to be moulded about my health, are MY choices.

I am working in a job that I absolutely love and enjoy. I have friends that I talk to and meet up with occasionally (we all have very busy lives now!) and I am in a relationship with someone who constantly makes me smile and has encouraged me to be the best I can be!

I won’t go on about him and the relationship as I’d like to keep that part of my life private. However I will say that I can’t believe how much of a support he has been. I do manage my care myself. The tubes, the pump – I generally do it all by myself. And I like that I can be independent like that. Sometimes, though, it gets me down. I feel like a burden just by having these tubes connected to me. I feel unattractive because of my scars and the way my stomach looks. I feel a bit rubbish about myself occasionally. However he doesn’t see the scars. He doesn’t see the tubes. He understands why I have them. He understands that I have a health condition. But he sees past that. He sees me for who I am. But at the same time he supports me with what I have to go through. Without me even asking or saying anything, he knows when I’m in a slight bit of discomfort. He knows when I’m in pain or suffering with nausea. And he does everything in his power to try and help me.

Nothing phases him. And I really like that about him. He has made me a better, confident, happier person. 😁

Going back to my new job, wow. I absolutely love it! I have been there just over a month now and I have loved every minute. It is another admin role but this time not at a school. It’s at a family hub. An admin role, I’ve realised, is probably the perfect job for me. I’m pretty quick using computers, there is a variety of tasks for me to do and responsibilities to have (I like a challenge!). And I’m not on my feet constantly so am less likely to get tired from pushing myself and my condition. Also everyone there is amazing and super supportive!

As you can probably tell by this blog, I am loving life at the minute, despite the slight setbacks. And I am proud of myself. A few years ago I was bedbound, struggling to even sit up occasionally. Now I’m working, I’m in a relationship, I may or may not have booked my first holiday abroad in almost 8 years😉, I’m learning to drive, and I’ve got a lot of supportive friends and family around me.

Life is good😊😊

Confused

As I am writing this post, my mindset and body is in a confused state.

I feel both unwell and well at the same time.

Let me explain… The last couple of days the symptoms of my condition has increased. I feel more nauseous than usual. And I have a bit more pain than usual.

Before you say anything.. No I haven’t got the coronavirus that’s going around😂

I know this is just me having a “bad spell” because I’ve had it numerous times before. Fortunately a bad spell for me is now a rare thing and only really happens once every few months, if that.

Anyway, so though these symptoms have increased, they seem to be coming and going in waves.

One minute I feel fine and the next I feel absolutely rubbish.

My body and mindset is telling me to rest up but at the same time it’s telling me to keep going. I feel like I can carry on but at the same time my body feels tired.

It’s frustrating. I want my body to decide how it wants to make me feel. Either unwell or well (more hoping for the latter!)

At least I know for sure that within a couple of days I should be back to my normal self. But in the mean time I just need to grin and bare it. I’m trying to still live as normal life as possible. However, due to my symptoms making me feel tired I am respecting that and slowing down a little with what I do!

So if anyone sees me in the next few days living about my life but taking things slow and taking the odd breaks. I’m not being lazy. I just need to slow down a little to let my body recover from the battles that my condition throws at me! 😂😊