Am I a failure?

Today I am having an off day. I am not feeling too good. I had a rough night, tossing and turning and feeling sick and just not myself. I am also in quite a bit of pain with my knee (which is a bit odd as I’ve never had problems with my legs/knees before – I think it’s because I’m moving around a lot more because of my job, so it’s been a bit of a shock to my body!)

When I feel ill and not quite myself, I tend to feel quite low. Negative thoughts go over and over in my head. One of the big negative thoughts that I get is ‘Am I a failure?’ I know that sounds quite … deep? But it’s what I think. I think I’m failing in keeping up with that strong persona of mine.

I know I’m a strong person, I’ve had to be throughout my life really. But there are moments where I feel weak. Like, I can’t fight the battle I am facing. I feel like giving up. I feel like loosing the battle is the only thing I can do. I haven’t got the energy to fight this illness or whatever.

It does also make me wonder how I’m going to cope in the future. If I’m having these thoughts now, if I’m struggling now, I wonder wether I’ll be able to adapt to changes coming to me in my life. Because there is a lot of new developments on their way. Will I be able to keep strong whilst I adapt to these new things? I hope so.

Life is full of constant changes. There’s no way I can stop that. I think I’m still trying to adapt to the fact that I can do a hell of of a lot of things now. I’m not bed-bound all the time, I’m not seriously ill in a critical condition.

I have a job, I go out with friends, I’ve even started dating. There’s so many new, ‘normal’ (again… I don’t like the word normal but it’s the only word I can think of😂) , exciting changes going on. I’m slowly getting used to the fact that I am able to live a life now. I just wish I could adapt to these changes quicker….

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Confidence

First of all I’d just like to say … again … I’m sorry it’s been so long.

Mentally I haven’t been in the right frame of mind. And I’ve been trying to decide and prioritise certain things in my life. I’ve been trying to focus on the things that mean something to me in hopes that it will take my mind off the thoughts in my head.

I’ve recently realised I need help. Help to understand what I’ve been through and what I’m going through. And I’ve went on to get that help.

The last few weeks have been a bit rocky but more recently I’ve started to feel more positive again. One of the things I struggle with is confidence. Confidence in myself. Mentally and physically.

Physically, my main worry is the way my stomach looks. It’s not necessarily to do with the scars. (Which a lot of people assume is the main worry). I’ve always had a scar on my stomach. I’m used to them. It’s the shape of my stomach. The way it sticks out on one side.

Due to the amount of major surgery I’ve had – I’ve now got no stomach muscle on my left side meaning my stomach has a ‘hernia’ effect to it. It sticks out more than usual.

I do wear support sometimes – mainly when I wear dresses or if I’m really bloated. But not always, as it does get a bit uncomfortable. A little while back at work, I was asked if I was “having a baby”. Now you’d probably think I’d be offended … but I wasn’t. In fact I found it bloody hilarious! (sorry for the language) I think it’s because I always thought I look pregnant – because from a certain angle it does look like I have a bump. And even though I found it funny at the time – overall Its made me wonder what people actually think. Like, if I was to walk around in one of those crop tops or something – clearly showing off my stomach – what would people think? Would they be disgusted? Would they feel sorry for me? What would they think?

I don’t know why but I think one thing that I think will help me with my confidence with regards to my stomach, is if I shared a photo of it. Just so it’s out there. I guess part of me is hoping that someone else with a similar stomach to mine (I know everyone is unique and different so won’t be exact) will pop up and maybe give me some advice.

So yeah, here it is –

It’s probably the most flattering angle I could find😂. I’m sorry the quality isn’t great – my phone is rubbish. But yeah. That’s my stomach😂. I also think it’ll be interesting to show anyone reading this who have read/know of my story an actual physical representation of what I’ve been through.

Also, I’m sorry if some of this doesn’t make sense – I’m a little bit tired haha.

It’s been a while….

Hello!

Wow, it’s been a while hasn’t it? My last post was at the beginning of November I think. I’m sorry it’s been so long. There’s been quite big changes in my life recently.

So, where do I start? Well… I guess the biggest change in my life is the fact that I am now working! Yes! I did it! I manage to find and secure a job! It’s perfect for me too as it’s an admin role. I’m working in a school office. I’m going to be honest, I didn’t quite realise how challenging it would be. It’s made me appreciate even more all the staff who worked in the school offices in the schools and college that I have attended as a student.

I’ve completed 3 and a half weeks there (I’m currently off for the Christmas holidays). All the staff I work with are lovely and I feel like I have made some friends already! (I was invited to the Christmas work do within a couple of weeks of being there too!). And all the children are really sweet! I thoroughly enjoy it there!

It is an apprenticeship, so I do have coursework to do as well as what I’m required to do within the job role but I don’t mind that. I like keeping busy. I like having something to do. I know what it’s like to have absolutely nothing to do, nothing to go out the house for, and it’s horrible. I prefer doing things and having challenges!

Ahh! I’m working! Honestly, I thought I’d never find something. I thought no one would want me to work for them. I was beginning to lose hope. And then this job came up and they accepted me. (They know about my past and my health difficulties and they are fully supportive of it all!)

So yeah, that’s the main reason why I haven’t updated this blog recently haha … I’ve been settling in to my new job!!

Another change that I’ve noticed recently, is that I’m more happier in myself. Like, I’ve not had as many low moments/days as I used to have. I have the odd moment but nothing like I’ve had before. I’m so much happier!!

I think it’s because I finally feel like I’m moving on with my life. I’m now catching up with everyone else my age. I’m not the Katie whose behind everyone else. I’m not the Katie with nothing to do. I’m not the Katie stuck in hospital constantly. I’m not the Katie with a condition that limits her. Ive achieved so much this year. A lot of things, a few years ago, I never thought I’d be able to do.

I’m just Katie. Yes I’m unique, but I’m also just like many. I’m living a “normal” life (by that I mean I have a job, I’m doing driving lessons etc) and I’ve still got my whole life ahead of me.

There is something else that’s happened that I would say is quite a big change in my life…. but I’d rather keep that under wraps for now … but stay tuned 😉

Oh and I hope you have had a lovely Christmas! I sure did ☺️

Alright, that’s it for now.

I want to try and do a sum up of 2018 thing for my next post before the end of this year, but can’t say for certain if that will happen. If not, have a great end of 2018 and start of 2019!

All the best,

Katie x

Battling my Mental Health

I’m currently sitting here, typing, whilst crying. I’m having a low day. I’ve been meaning to write a post like this for while, after it was suggested to me to do one. I just haven’t had the opportunity. I thought I’d write it now, whilst I’m feeling the way I am so I can tell you exactly how I feel on a low day. I’m doing this because I think not only that it might help others (I’ll mention ways I’ve coped with it in the past), it might help me at this current stage.

So, here we go. Where do I begin? haha. That’s one of things that happens when I’m low, I suppose. I get confused. I don’t know where to start when it comes to any issues I’m having. You know when your earphones get tangled up in your pocket? That’s what my head feels like at the moment. Like every thought is just tangled up into one ball of wires or something. It hurts. Emotionally, it hurts. I feel both sad and angry at the same time but I can’t pin point why.

I’ve slowly been feeling like this over the last few days. I’ve felt it building up, but I just can’t stop it. The lowness takes over like a black cloud slowly moving and hovering over me. I try to convince myself that everything’s fine. Everything’s working out. I’m starting to have job interviews, I’ve found a new hobby that I enjoy, etc. Everything is looking up. But apparently it’s not. The way I tell myself that I am okay is actually quite strange and varies. One of these ways, is by posting regularly on social media. Now, you’re probably confused and thinking, everyone posts on social media – why is that strange? For me, I get a bit obsessed, I suppose. Especially with snapchat. You see, I’ve got many friends on snapchat and I like to feel that I’m not lonely. It sounds sad, I know. But my way of not feeling the loneliness that comes with the lowness is by posting almost constantly on snapchat. That way I feel that people are seeing my snaps, and getting involved by seeing them or laughing at them (I like to post amusing snaps when I can) and sometimes people will message me about them.

You’re probably wondering 1) that’s not really strange or anything – it’s my snapchat I can post whatever I want to my story, and I can post how many times I want. And 2) if I’m feeling lonely, why don’t I message a friend?

Now, I’ve always been like this but I cant get out of it. I’ve got many people I can talk to. I know that. And I appreciate that. I’m just worried that if I focus on just one person and constantly go to them with my problems – I’m going to annoy them. So if I’m feeling down or lonely, I’ll keep it to myself or if I did want to talk to someone but not go to someone directly, I might put a message on my snapchat or other social media along the lines of “someone talk”.

Some people might look at that as attention-seeking. I don’t see it as attention-seeking. I’m just asking for a bit of help. I don’t like doing it, but sometimes it feels like my only option. (I know there’s better options but in the moment, that’s the only option)

Another thing I’m thinking at the moment, is that my life isn’t going anywhere. I’ve been applying for jobs but not hearing back. I’ve spent so long spending time at home. I’m lonely, I’m bored. And I really don’t know what to do. I have a career goal. I’ve had the same career goal for years now. I just can’t get on that ladder.

I’m also a bit scared for my future. I worry that if I did get a job, will I be able to cope? Will my condition effect me in the workplace? Will I have the confidence to meet and talk to others? But also with situations not to do with working. Like, how will my condition effect me in the future? Will I ever settle down with someone? It’s kind of scary not knowing what the future holds anyway, but come to think of it, even now I’m going about my life taking it day by day. Who knows what could happen. My condition could worsen in 24hrs. I don’t know what my life will be like in an hour. Never mind my future. I’m scared of what might come. Throughout the last 21 years of my life there’s been highs and lows. At this moment, I can only see the lows.

HOWEVER! As I’ve been typing this out, I’ve been thinking … hang on … no I am okay. I’ve just re-read it all back. Things aren’t as bad as I keep thinking they are.

You see, to start with I mentioned my new hobby and the job interviews I’ve been having. That’s two positives right there! That shows that I am moving upwards in the world. They’re small, normal things but they’re giant leaps for me. The new hobby, baking, is an incredible move upwards for me. I was scared of food 4/5 years ago. I couldn’t look at a piece of toast with feeling anxious and sick. I’m now baking. I’m creating and enjoying food!! And with the job interviews, It’s only recently I’ve started having them. The fact that my application, my CV is being noticed. And I’m being shortlisted. That’s incredible! I will get something someday! But it will happen at the right time! I’m also having driving lessons. And they’re going really well! That’s something else that’s really positive!

And with the constant social media posts, I’m not posting every minute haha! It’s a few snaps a day. I’m letting people into my life. I’m giving people insight. I’m sharing my story. Social Media is a wonderful thing! Why my make the most of it? I’m not posting anything harmful or rude. I’m sharing happy posts, and occasionally asking for a friend to talk to! Social media is for connecting with people! Why should I be worried about how many times I post? And what I post?

With regards to feeling lonely at home. There’s nothing really much I can do at the moment. Unfortunately I’m at the age where I have friends of similar age of me who are working. And so meeting up is quite hard. But again, I have social media. I have texting. You know, I can contact people in other ways. I don’t need to have them around me physically. I can talk and have a laugh with them online.

When it comes to my future, excuse my language, but who the fuck knows what their future will hold? No one knows for certain. So why worry about it? I’m stable at the moment. I’m not limited in what I can do. I shouldn’t sit a fret about what’s to expect. I should focus on now. What I’ve got and what I can do.

Because actually….. I’m in a good place right now.

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 haha😂

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

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.