This blog is about my fight against adversity. It will cover my story, my struggles with my mental and physical health, and will also cover things that I feel help me overcome and fight my battles.
Earlier today I had a call with my consultant. Turns out my new tube has possibly moved position so gonna have to maybe go back to have another x-ray and possibly have it re-done. It’s okay though. I can do this 👍
I posted on Instagram and Facebook the above as well as a selfie of me with my thumb up.
Because I know deep down I can do this.
But my feelings on the surface are not the same.
I’ve been crying ever since that phone call.
It’s only something small that can be easily amended.
But to be easily amended means more hospital visits, more let downs and probably another painful, horrible procedure.
And of course if this doesn’t work it means back to my old tube. Which means I am to continue suffering with the leakage.
At the moment I feel like there’s no way out.
My condition is always going to be around. In whatever shape or form. There’s always going to be complications. That’s my life.
Deep down I know I can cope, and I know it’s no where near as bad as it has been or could be.. But I’m finding things a bit hard at the moment.
It is so tempting to just tell everyone, including medical professionals, that everything’s okay. That I’m thriving. Because if I did that, they’d leave me alone. Yes, I’ll have to struggle with the leakage and discomfort but at least I’ll have no hospital visits, no being taken out of my day to day routines with work etc and just my “normal life” in general.
I can’t win. I either choose to live a normal life but suffer with discomfort or try and get a result, try and feel better but have my normal life disrupted.
I’ve done it before. I’ve done it most of my life. But I like the normal day to day life. When a hospital visit happens, I dred it because I’m scared I’m going to get too comfortable with a hospital life again.
Has anyone got any tips or any words of encouragement?
I’ve got this… I keep telling myself that. I’m trying to convince myself that although things seem tough.. I am also tough. And despite the challenges I face, I somehow always get through them.
Recently with regards to my physical health, I have had trouble with my peg feeding tube.
You see, I’ve had this peg feeding tube for 8 years now and within the last year or so I’ve been experiencing leakage from the tract (the gap where the tube slots into in my stomach). This, in turn, has cause the site around it to be sore, uncomfortable and sometimes painful.
It started off leaking only a little but then it became more and more excessive.
(Sorry this next bit might be a bit graphic)
The leakage includs acid from my stomach mainly (this is a yellowy colour), contents of food I’ve digested, and sometimes blood.
It has been uncomfortable, painful, and super annoying (my amount of times I’ve had to change clothing because of the amount its leaked!)
I’ve seen many nurses and spoke to my consultant a few times about this. I’ve tried different size tubes, different dressings and creams to go onto the site around the tube due to the burns I have been receiving from the acid getting into contact with my skin.
Nothing has seemed to work and I’ve wondered why all of a sudden there is so much leakage!
I had an ocd (camera down throat into the stomach) back in May to see if there was any issue inside of my stomach that’s causing the excessive production of acid/mucus. From this, they did pick up an infection which I was given antibiotics for. But apart from that, everything else looked okay.
Before I went down for the ocd at King’s, I was seen by a peg nurse who examined me and asked me questions about the leakage. She prescribed me a cream and requested I see her in a couple of months time in her clinic.
So in July, I saw her in her clinic and mentioned that things hadn’t improved and that I was tired and frustrated that this issue keeps happening and won’t end.
She talked to me and explained that we could try and jejunostomy tube.
The difference between that tube, and the one I currently had is that a jej tube is longer on the inside and goes into the bowel. The one I currently had, and had for 8 years is a gastro tube meaning its short and just enters the top part of my stomach.
She reassured me that it all looked the same on the outside so the maintenance of it would be the same. I wouldn’t do anything any differently to how I’m using the current tube. It just means its got an extra port to feed with.
I was willing to give anything a go, and had been for a while.
She said that this tube is longer, and has a weight at the end so will pull it down a bit and hopefully make the tube tighter to the skin, thus closing the gap where my insides could leak out.
I agreed to giving it a go and was told it should only take about 20 mins and that this procedure has to be done in hospital under x-ray. And it has to be done every 6-9 months.
This was slightly different to how I was changing the other tube. The other tube, I was changing myself every 3 months in the comfort of my own home. This new tube meant I had to come in to hospital for a few hours to have it changed.
But that didn’t really bother me.
Anyway, the day came at the beginning of this month (August).
I arrived in a day ward, was given a gown and had a blood test done. I was then seen by the doctors who explained the procedure. Again, I was reassured it should only take about 20 mins (I didn’t quite believe that though.. when it comes to my stomach nothing is that easy 😅)
I was right to believe it wouldn’t take 20 mins.
When I was called down, I was wheeled into a theatre where they prepped me by putting loads of sheets of paper/plastic like material over my body, just leaving the area of where the tube is uncovered. An x-ray was hovering over me. They covered the area that they’ll work in, in an antibacterial liquid that cleans the area. They put protective barriers around my chest. I think this was to protect me from getting anything in my face, but also may be so I don’t see anything.
This scared me a little as it felt like I was having surgery. I mean, technically I kinda was.
I had to be awake for this procedure which I wasn’t keen on but I understood that there’s no point putting me to sleep. They wasn’t cutting me open or anything.
They began by taking a few x-ray images of the current tube in my stomach and planned out where they need to insert the new tube.
They then decided to numb the area of the skin around the site so that I wouldn’t feel too much discomfort. They injected me with local anesthetic This stung like a b!
Anyway, they went and did their thing. Took out my tube and replaced it with some wires which they inserted into my stomach so that they can use it as a guide when putting the new tube in.
Even though they numbed the area, I still felt pressure and occasionally discomfort inside my stomach as they prodded and poked.
All in all, the procedure took nearly 2 hours! Due to my stomach not being a normal shape or size, they had trouble finding the entrance to the bowel, which cause some issues.
I remember laying on the operating table trying to distract myself by thinking of nice things, thinking of what I’m going to do after like go for a coffee or something (I love an iced coffee at the moment!) The doctors and surgeons in there were talking to me, helping to try and distract. But occasionally I felt pain or some kind of uncomfortness which took me away from distracting. It wasn’t pleasant.
I was a bit of a wuss and did start tearing up. I was scared. I didn’t like what they were doing and to be working on an area of my body where I am the most sensitive and protective over… it was daunting! I couldn’t move either as I had to stay completely still.
I was so relived when they finally got the tube where it needed to be and it was over!
I was cleaned up and wheeled back into the ward. They wanted to monitor me for an hour or so and make sure I was eating and drinking before I left.
Once I was allowed to go, I couldn’t wait to get home! I did plan with dad (who came up with me), originally that we were going to go for a coffee down the road after but following the procedure I just wanted to get home!
It’s been nearly two weeks since the procedure and I can actually say that I’ve noticed a bit of a difference. I have still leaked a couple of times. But it’s not as much as it has been.
I have had a catch up with a doctor over the phone and she has advised me to keep an eye on it and any problems give her a call.
I also have a phone appointment with my main consultant on Monday.
It’s early days but I am hoping this tube helps, even by a small percentage. After all that it would be really frustrating if it has done nothing!
I am due to have it changed next February. I have been told it shouldn’t be as bad as the first time as they will have the new tube as a guidance.
You don’t know what you’re going to be like or how you’re gonna feel day in, day out.
You feel like your condition controls you and you feel out of your depth at times.
You sometimes feel lonely.
When you start feeling like you have control, your condition flares up. This basically feels like, to me, my condition is saying “haha you thought you were in control and getting on with your life but you thought wrong”.
I’ve felt like this lately. I’ve had a procedure undertaken involving replacing my peg tube with a different size which had to be done under x-ray in hospital. It wasn’t a pleasant experience and was quite scary. (I’ll explain further in my next post).
The reason I had it done was because my previous tube was leaking excessively and causing me discomfort. I had to fight and speak to many doctors, consultants and nurses to request a new tube which was tiring.
I knew the other tube was the issue therefore why I needed a different size.
That’s another thing about having a chronic illness. The constant fighting to get what you need. The repeating of hospital visits and treatments.
The feeling of a hospital procedure or treatment not working.. again.
It’s frustrating and upsetting as all you want to do is get on with your life.
I’ve struggled lately. The new tube I’ve had inserted (which was a pain to insert… literally) so far seems to be better than the other tube but It’s still early days and I’m worried its not going to work. I’ve had procedures and treatments in the past where there have been promises that this will work, but then it doesn’t. And I’m so used to that now I feel like I have lost hope.
I don’t see the point in requesting treatments or hospital procedures any more because I know the outcome.
There’s nothing out there that will change the fact I’ve got a chronic illness. I’ve just got to live with it.
And that does effect me mentally. I may not show it all the time but I am mentally and physically drained.
The thing is part of me feels I should be used to it as I’ve been in and out of hospital and had an illness all my life. But you don’t get used to it.
It’s a battle I’ll never win, so I’ve just got to hold tight and ride it.
It’s part of me and I can’t do anything about it.
The strength within me to carry on and fight is still there. It just hides from time to time.
I’ve been taught to think that someone always has it worse and to be grateful that it isn’t worse. But lately I’ve been thinking that it’s okay to have moments where you are unhappy. As below says, if things are bad for you, things are bad. I shouldn’t feel guilty for feeling the way I do. My trauma is valid.
As long as I don’t give up in life, it’s okay to feel this way. Things are tough for me occasionally. But I’m allowed to think “why me”.
Hope you’re all doing well and had a good Christmas – I’m currently sat stuffing my face with Quality Street.. Doesn’t everyone do this at Christmas/ between Christmas and New year??
Come to think of it what do we do during the time between Christmas and New Year? We don’t know what day it is, when the bins need taking out, what time it is etc etc.
Anyway.. Just thought I’d wish you all a belated very merry Christmas 🙂
I’ve had a good one despite the circumstances.
It’s been a while since I last posted hasn’t it? The last post I made was with regards to me feeling poorly…. A few days after that post I tested positive for corona😳.
Fortunately, after plenty of rest for a week or two, I felt well again. I was one of the lucky ones. I had the cough, I had the flu symptoms and I had the loss of sense of taste and smell. (the taste and smell did come back after a few days but left me with having random burning smells and a heavy feeling on the nose every now and then).
I had another test a couple of weeks after testing positive as I felt well and wanted to make sure it had gone before I decided to slowly go back to work. Fortunately the second test was negative.
So yeah, it’s been one heck of a year.
It’s been hard. There’s been so many lows. But yet there’s been a few positives (no covid pun intended).
I have some plans for the new year to do with my personal life as well as my career and I’m really looking forward to making these plans a reality. (I may make a post about these plans very soon👀)
Im hoping 2021 will be a much better year.. For all of us!
Here’s to a hopeful and better new year!
Take care and stay safe.
Katie
Have a photo of me balancing a tub of quality street on my stomach… There are some perks of having a stomach that sticks out 😉😜
I began having what I thought was one of my “bad spells” on Thursday.. I thought okay, I know what to do… I’ll have to have a day off work today but Within the next couple of days I’ll be feeling back to my normal self…
Boy was I wrong.
Friday morning I woke up feeling okay. I thought ok the worse part is over with now.. Time to take things easy but also try and get back to normal.
I had a double blood test booked in early that morning. It was a glutton intolerance test so I had one blood test taken, then was given a high sugary drink, then was told to wait in the waiting room for 2hrs before having my second, and last blood test.
After having the drink I felt nauseous. I didn’t feel right at all. I was told it can make you feel sick but I thought she meant just a bit.
I sat in the hot waiting room (I wasn’t allowed out the building) with a mask on… Feeling sick and eventually tired. I wasn’t feeling myself at all.
I went to have the second blood test and explained my symptoms to the nurse. She said that was normal so I just went with it.
Fortunately they didn’t have trouble getting any blood out of me on both attempts!
I went home, hoping to start feeling better once I’d had a tea and some biscuits (I’d been fasting all morning) and I also hoped to get back to work (I’m currently working from home anyway so can take things easier than what I would do working from the hub)
However a bit of time went on and I seemed to be feeling worse. The nausea increased, I had a headache, my chest felt congested and I felt super tired. There was no way I could work like that. So I contacted my boss and explained the situation. She was super understanding with it all.
I spent the rest of the day mainly sleeping or just not moving at all from the sofa. I had no energy whatsoever.
Eventually a cough started… And I just did not feel myself at all.
I had a bad night Friday night and spent all of Saturday again either sleeping or just trying to distract myself whilst not moving much.
The symptoms hadn’t got better but yet they hadnt got worse.
I went to bed at 9pm last night and woke up about 9am this morning… Which is super rare for me!
This morning I woke up, had a little bit of energy so I had a wash, got dressed and put some make up on to make myself feel a bit better (gone for the dark shade of lipstick… Why not💄🤷♀️😅) . I normally find if I look good then I feel good…
But even though it had a slight effect on me for a bit, overall it hasn’t done much.
Currently I still feel tired, I still feel sick, I still feel congested, I feel like I need to cough but can’t, I’ve still got a headache and now on top of that all, I’m having sharp pains in stomach and I feel achey all over. Oh and also I’ve got a constant strange, metallic taste in my mouth (I can still taste and smell things tho)
It looks like it’s just a bad cold/normal flu luckily though.
With all that’s going on physically, It has now started to take its toll on me mentally. I feel low and useless. I have always hated feeling unwell as I feel like I’m letting people down and I feel very unproductive as I can’t do as much as I can normally.
Could really do with some hugs right now. I hate this 😭
Cue the selfie I took this morning… When I had that little bit of energy and actually felt that maybe I was getting somewhere
I’ve just got up and got on with things for so long now. I’ve tried to leave an as normal life as possible. I’ve pretended to feel well when I’m not just to make things easier and to help me lead this ‘normal life’.
And it’s worked but it also has now got to a point where I feel like mentioning how I feel… especially physically, would annoy people.
I feel like whenever I mention that I feel a bit sick or am in a bit of pain.. I should feel guilty for even mentioning it.
It doesn’t help that I’ve come across some people who are clearly annoyed that I even bring it up despite me rarely ever mentioning it. I’ve been moaned at before and I’ve been told “well you look fine” and “you’ve coped with worse”. I’ve even been called selfish!!!
I don’t know why I should feel ashamed for being honest. I’m not saying I’m a complainer. If I complained about every single pain or discomfort or sickness I have.. Well I’d hardly stop complaining!
But I keep having to remind myself that it’s okay to have the odd moments to not hide my feelings. It’s okay to be honest.
Admiting that I’m struggling isn’t a sign of weakness. And yes, how I’m feeling may not be as bad as how others have it with other conditions, but it does affect me. Its horrible to go through. And sometimes I need that little extra support.
Sometimes when I admit that I’m feeling rough all I want is a cuddle or for someone to just listen to me and just be there. I don’t need people shouting or moaning at me, making me feel ashamed for feeling the way I do.
I’m human. I need to let these feelings out. I need to be honest sometimes with how my body is coping.
Yes i’m coping much better than I used to but I still struggle sometimes.
And some days I need to go about my day in a slower, easier process. Please don’t have a go at me for going slower than usual or perhaps not achiving the standard I would if I was having a good day..
My body’s signalling that it needs rest. Its more fragile than usual.. I need to slow down and build myself up again. “re-charge” if you like.
I’m going to go back in time again. Thought I’d do a review of my experience of having an NG tube.
An NG tube is a Nasal Gastric Tube that goes up the nose, down the throat and into the stomach. When it’s inserted a pH test needs to be done to test that its in the right part of the stomach. (this is done by using a syringe to aspirate stomach acid from the stomach and putting the acid on a pH scale bit of paper)
It is used for people who struggle to intake food and sometimes fluids orally.
Some people rely on this tube to get the nutrients they need as they can’t intake anything orally. In this case, a lot of the time these people end up having a mic-key button inserted. Which does the same thing but is more of a permanent, reliable tube. (although not entirely permanent – it can be removed)
I had a mic-key button inserted after so many months of using an NG tube due to the fact that, even though I fortunately can still eat and drink, I don’t orally intake enough to keep myself going (but I have got better with this over the last few years!)
Anyway, back to the NG tube.
Personally, I wasn’t too keen on the NG tube. It felt weird when it was inserted (I think it had to be changed every few weeks too – so I had to go through the discomfort of inserting regularly) and it didn’t look nice sitting on the face.
I learnt to try and embrace it – I had to. Despite knowing the looks I’d get, I still went out with friends, went to school and went to the shops with others, using all the strength I had at the time. I wanted to try and still lead a normal life whilst being in and out of hospital, having treatment to help build me up and having numerous tests.
I saw people stare at me. I saw people point at my face. I saw kids point and ask their parents what that was on my face. But you know what. I didn’t have time to worry about it. I just smiled and carried on.
There were times I’d look at myself in the mirror and briefly see a sick, horrible looking face. I tried wearing make-up but the tube did not make it look good. I cried sometimes looking at myself in the mirror thinking I genuinely look like a sick person. How did I get to this?
But then something would click…
I’d have a brief flashback of what I looked like just a few years earlier.. I had a sickness bug (well.. Back then I thought it was but looking back now.. It was one of the first signs of my body telling me something wasn’t right). During this ‘sickness bug’ I was laying in my mum and dad’s bed feeling weak and vulnerable. I turned my head to look at myself in the mirror. No joke.. I looked like a zombie. I had no fat or muscle on my face, my eyes had sunken in… The image still haunts me to this day.
This flashback reminded me of how sick I actually was and how much that tube was helping me become healthy. And how much I was actually rocking the tube!!! 😉😂
I took selfies – both smiley and silly. And I made jokes (including one which involved me panicking a student nurse by sucking my cheeks in as she was trying to asperate – I think that’s the right word! – my tube😂😅)
I learnt to embrace it… Until I finally had it removed and had the mic-key button replace it.
Yes, I embraced it… But I was so bloody glad to get rid of it!
The discomfort of inserting it, the itchyness and the rash it formed on my cheeks, all of which I don’t miss.
Yes, I still would love to be completely tube-free at some point… But I’m comfortable having a tube for now.. Especially as the one I have currently is hidden and not as uncomfortable inserting!!
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😳😂)
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.
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 mostamazing 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)
Katie's Journey 