I am normal… In my own way

It’s hard to say whether I can accept what I’ve been through or not. The majority of the time I feel like I can but sometimes I ask myself;

Did I actually go through all that?

The question I find myself asking many times. Did I actually go through that period in my life where I basically lived in hospital? Did I actually have major surgery? Was I actually that weak and poorly?

The answer to all that is yes. I did/was. It sometimes all feels like a distant memory, or even a bad dream though.

Saying that, my situation now where I have scars, my stomach is distorted and I have a tube, seems pretty normal to me.

I can kind of understand how someone else could look at my situation and think that it must be hard and scary. I mean, being connected up to a machine that pumps feed into you can seem quite daunting. I remember when I got told I will have to have a tube into my stomach – I was petrified!! Yes, I still had a slightly odd looking stomach with scars from baby surgery and no belly button but I was used to that. I was born with it after all😂. But the thought of having a tube just sitting in/on my stomach. Visable for me to see. And a machine that would pump stuff into me… I doubted whether I’d be able to get used to it.

Some people may not consider me, or my situation, to be “normal”. And that’s okay.

Why?

Because I know I am normal in my own way. I have grown used to having a tube in my stomach. I have grown used to having a slightly odd stomach. I have grown used to being fed by a machine overnight.

I am also used to the fact that my appetite is not great.

But I suppose the question I should be asking is….

What is normal?

(Btw this is my 50th post! Wow!)

😁😊

My Experience of Stomach Surgery (part 4)..

After a few days of being in intensive care and special care i was moved back to the normal ward.

Princess Elizabeth Ward is what it was called. It was a second home to me back then – which isn’t the most ideal I know😂 but despite the circumstances, I felt happy, safe and welcomed there. The cleaners, the nurses, the doctors, everyone on that ward were amazing.

Anyway, when I got on to PE ward, I was still a little dazed and sore from the surgery but I was getting there. I didn’t feel any pain for the first couple of days but that’s because I had an epidural. Before my surgery I used to think only pregnant women had epidurals and didn’t quite know what it was😂

However prior to surgery I was given an explanation as to what an epidural was. In my own words, an epidural is basically a form of pain relief. It’s a tube that runs down the spine that injects a form of pain relief into your body. It basically numbs most of the body and reduces the pain that you could be feeling massively.

I didn’t quite realise how effective an epidural could be until I had one.

I had one put in during my surgery and had it kept in all the way until I got to PE ward and was properly starting to recover and get back to normal.

When it first came out, I still felt no pain whatsoever. I had no feeling at all within my body actually. Within a day or two of it being taken out though…. I started to realise how powerful that drug was.

The pain was horrendous. I wouldn’t wish it upon anyone. I have the odd pains and aches now but I have never had pain like that. However it’s not surprising, considering I had just had major surgery where my stomach had been sliced open. (sorry for the graphic image there😬😂)

By this point, because I started getting feeling all over my body again, I also had my catheter taken out (a thing that lets you go loo without getting out of bed or even moving – sorry again😬😂).

I then started to have physio and would start by working on slowly sitting up and sitting on the edge of the bed. It felt like a work out!

Thinking about it, I find it fascinating to think that once, even sitting up in bed exhausted me. Now, I still get tired and exhausted probably a bit easier than a “normal” person but I can do a lot more!

After days, maybe a week and a bit, I was walking around the ward with my triage (they called me lady penelope at the hospital as for a short while I had to have people with me when I went for a wander round the ward or hospital – my dad and a nurse or two, as well as the machines I was connected to!😂)

I made such good progress in such a short amount of time (I think it was just because I was soo determined to get back to normality that I really pushed myself!). After about 2 weeks of being an inpatient, I was sent home. Everyone was so impressed with my progress that they felt that I could go home. I remember asking my consultant when I could go back to school and he replied “give it at least a week”. I was gutted, I wanted to go back the next day! 😂😂

I was so happy to get home, recover and have a “normal” life. Me and dad surprised my mum and brother by turning up at the house without telling them I was coming home. It was so nice to get into my own bed!

Unfortunately though, it wasnt long before myself and my family realised that maybe all was not as it seems and I probably came home sooner than I was supposed to..

My Experience of Stomach Surgery (part 3)

Following on from part 2…

So after a couple of days in intensive care I was moved to Special Care.

This is a step down from intensive care, and only one step away from being on a normal ward.

I don’t particularly remember much from special care.. Much like intensive care.

I vaguely remember being in a room to my self, as well as on a ward during my time in that unit.

I remember that I had a doctor come into my room/bay everyday asking me what colour the walls were.

This was because I was still on a lot of medication to manage pain and stop me from moving too much as the scars were still very raw. The drugs were slowly wearing off though, and they knew this from me telling them what colour the walls were. The less blue/green (I think) the were and the more normal my vision was becoming, the closer I was to the drugs wearing off completely.

During this time, I also remember a story that I think I’ve told many times before – the time I hallucination I had of my dad being a women! That was so strange! 😂

I had many odd hallucinations during this time. I saw strange things and was pretty disoriented. I didn’t feel any pain and felt quite light and happy but I still wasn’t myself. Apparently I sweared at my dad and told him to do one a few times. Those who know me know that is unlike me.

I also once thought my dad was having an affair with a nurse! I used to growl and give this nurse dirty looks whenever she came to check up on me – obviously there was no affair! 😂😂

I believe I was only here for a few days before being moved to a normal ward… When things started to really move and I was closer to normality!

Dark Clouds and Rainbows

I feel like I’ve got a dark cloud over my head, which has been getting bigger and bigger over the last few weeks.

I’m not sure if it’s because of recent events (issues with my physical health and stress from trying to find a new job to go to in January etc) but recently I’ve been feeling more low than usual.

As I think I’ve mentioned before, I am on anti depressants and was put on them at the beginning of this year. They seemed to have a big effect and has allowed me to toddle on through life with very little low moments.

That nice affect has seemed to ware off a little bit recently. Again, it may just be genuine stress with everything that’s going on (it’s also nearly Xmas so the stress of buying presents too😂)

I’ve found myself trying to hold on to people and things that make me happy for as long as I can. For example, games I enjoy playing – I will try and stay focused on playing that game until I really need to come off it. Also my boyfriend. He makes me happy. When I’m around him I do feel happy and when it’s time to part, as much as I appricate we both need our own space from time to time, I’m sad that our time together is over. (even though we message all the time and normally arrange to meet up a couple of days later)

I’ve had a low spell similar to this before, and so I know I will get through it. In the mean time though, I will stay put and carry on trying to keep my head up – no matter how hard that’s becoming. I will also remember that it’s okay not to be okay. I can cry if I want to. I can feel sad if I have to. Its important to look after yourself mentally and physically.

But I will get to the rainbow again. I will feel happy again.

I’ve got to do this

Yesterday I said in my post that I was on my way to King’s in London.

The results of this appointment are;

I have to have a few tests done to see why my stomach is growing larger and why I’ve been getting more discomfort, pain and sickness.

She THINKS it may be caused by adhesions (organs starting to twist and stick together). I have been told that due to my history, I am at risk of getting adhesions.

She had a feel of my stomach and listened to what I said. She said it’s likely to be that, but she wants to do some tests to make sure and possibly rule out what else it could be. (it could also be an infection, in which case I’ll just need a dose of antibiotics – I hope this is the case!!)

If it turns out it is adhesions… Then she said I will have to have surgery. And due to the complexity of my case, it will probably be major surgery.

I am hoping it doesn’t come to that.

For now though, I am just going to stay calm (I had my little rant/outburst/worry to a few people close to me- thank you for listening and trying to keep me calm guys😂😘)

I will go for these tests like the trooper I know I am. Heck, I’ve been through much worse.

If the outcome is surgery…. Well I’ll just have to do what I always have done… Smile, tell bad jokes and carry on. And be thankful as it could be sooo much worse.

K 😊 x

I can do this… I need to

That’s what I keep telling myself anyway.

I’m currently on the train, going up to Kings College Hospital – a hospital I know pretty well🙈😂

I’m on my way to an emergency appointment.

Since I’ve been an adult and have moved to adult care, I have never had to have an emergency appointment with my consultant. Which is a good thing. It just shows I’ve been well enough and able to look after myself without the need of medical intervention.

However recently, well the last few months actually, I’ve been noticing a few things.

A few people close to me know that I am pretty much always in some sort of pain or discomfort. I also suffer with a lot of sickness. But for the last few years they have been manageable. I’ve been able to cope most of the time.

Recently though, I’ve been struggling. Ive been trying to not admit it. I’ve been trying to push through and keep going as I always have. But it’s becoming too much now.

The pain. The discomfort. The sickness. It’s all too frequent and becoming quite powerful. It’s starting to interfere with my “normal” life despite my best efforts to hide it. People around me are noticing changes in me too, particularly my behaviour. It’s becoming quite clear that I am struggling.

Last week I gave in and phoned up my consultants secretary. I asked if I could see my consultant ASAP.

Luckily there was availability today.

So currently, I am on my way.

I’m going to tell her everything and not sugar coat things saying “I’m not too bad” etc. As I have a habit of doing…

I am pretty certain she’s going to recommend some tests.

Although, I’ll be happy something is being done about this, I am also nervous as these tests could also intefere with my “normal” life.

I am also worried that, if they found the problem that is causing me this grief, the treatment that they may be able to offer me could send me backwards.

It probably won’t but I’m so scared of going backwards with my health. I’ve worked so hard to get to where I am now both physically and mentally! What if this pushes me backwards? What if I become more ill? What if I end up being admitted into hospital on a long-term basis again? What if I end up driving those I love away from me due to my poor health?

I’m so comfortable with living a normal life now. I don’t want to disrupt it… But like a lot of people have said to me…. I need to listen to my body. And I need to put my health first!

K x

Should I or shouldn’t I? That is the question.

I don’t know what to do.

I’m in a good place at the moment. Despite having a few more pains and discomfort than usual (which I have arranged an appointment with my consultant soon for), I am happy. I’m doing well at work. I’ve pretty much finished my Business Admin course. I’m going out and having fun with my friends and boyfriend. Life is probably better than it ever has been right now.

But I’ve been thinking recently. Well… wondering. Would now be the right time to have a little play around with my medicines/tube feed. Maybe reduce the tablets I take and/or try having more nights off my tube feed.

I’m in a stronger, healthier state now. What if I was to, say, stop using my pump for 4/5 days or even a whole week… What would happen? Will it make me eat more? Probably. But will it make me get ill? Maybe. Is it a risk I’m willing to take? I don’t know.

I will probably talk to my consultant before I do anything but I feel like maybe I should give having a whole week or something off my tube feed a go? Normally I have 1, 2 nights off maximum. I’ve tried a week off before, but it was a few years ago. It didn’t end well. My weight dropped dramatically and I got sick.

I’m at a better weight now. And like I’ve said, I’m much healthier. So maybe a week off the pump wouldn’t do me as much harm?

The important factors I’ve got to take into consideration are weight loss and dehrdration. These two factors could be triggered very quickly from me not eating or drinking enough to keep me going throughout the day. However by not having the feed overnight, maybe I will start feeling like I need to eat and drink more throughout the day, helping me to get the right balance and avoid dehydrating and/or loosing weight.

With the medication side of things, I don’t take a lot of tablets but I still think it would be nice to wean myself off them. But that, again, is something I will talk to my consultant about before doing anything.

I feel like I’m ready to start taking risks with my feed and medication now. But I’ve got to do it carefully and with consideration. It could go one way or another. I guess I won’t know unless I try, will I?

I’m both excited and anxious about doing this. But also I’m still not sure whether to just go ahead and do it.

I know I know my own body and its all my decision, but what do you, my viewers, think?

Should I give it a go?

Katie’s Condition

That’s what the doctors used to call it…

I’ve probably talked about this or similar in the past but I just feel like talking about it again because of an incident that occurred today.

So I went to the doctors to have my flu jab. I have had a flu jab every year for the last few years. Recently, my dad has started having it to because he is practically my carer (although I don’t like the term ‘carer’ in my case as I like to think I’m quite independent when it comes to my care.)

Anyway so.. This happened last year, and I believe it happened the year before that too. My dad received a letter from our doctors surgery inviting him to come down to have his yearly flu jab. I never received a letter. I didn’t last year, or the year before. But I still turn up as I know I’m entitled to it. I’m what they call “high risk” due to my condition and circumstances.

Anyway, today I turned up. I thought that the receptionist would say something along the lines of “you’re not on the list” when I went to book in as this has happened before.

However this time round she looked at her computer and asked me to take a seat. I thought “Brilliant! Finally on the list! 😂”

So I waited for a bit. Then I got called in by the nurse. I walked into to the room with the nurse, noticing that she was giving me slightly curious/weird looks. I sat down in the chair provided right in front of her chair, with the computer sitting next to her.

She then continues looking at me in a slightly odd way before saying “Katie, can you tell me why you should have the flu jab. You’re not high risk or anything. Could you explain your condition?”.

Wow. Part of me felt like saying “just take a look at my notes”. Surely by looking at what I’ve been through is proof enough that I’m entitled to the flu jab.

I didn’t want to seem rude though so I went to explain my condition before hesitating for a few seconds whilst I thought “wait what is my condition?”.

There is no name for what I’ve got in general. So I gave a very brief outline of my life. I was born with my organs on the outside of my body (there is a name for that I know – exomphalos) , I’ve had complications throughout my life resulting in me having major stomach surgery, I now have a tube in my stomach etc etc.

That was luckily enough for her to agree I should have it and proceeded in giving me the vaccine.

I then walked out and went on about my day. Since that moment this morning though, I’ve been thinking. I feel like I’ve explained my story to so many people so many times. (I’m getting a little bit tired of it now not going to lie – maybe I should just show people my stomach when asked what my condition is…. Or better yet carry a sign with me at all times giving certain important factors of my life/condition. It will save a lot of time 😂)

When people ask me what my condition is, I can’t just give them a one word, simple answer like someone who has asthma, or epilepsy for example. Conditions people know. I have to tell my life story. Or give the briefs of it anyway.

Well it’s either that or say the actual – made up – name of it… Katie’s Condition. Like the doctors at Kings used to call it.

Apparently there is no one like me. Well no one who has similar symptoms, consequences and surgeries all together. I find this a little annoying because I can’t give anyone straight answers and not everyone has time to sit and listen to me explaining my life story.

However I guess it makes me kind of unique. One of a kind you might say. As far as I know there’s no one else out there with “Katie’s condition” and maybe I should be kind of proud of that.

I’m living a life and it’s only just clicked

As you can see from my previous posts, I had a little bit of a downer. But I’ve learnt that it’s okay to have down moments. It’s okay to feel sad from time to time. It’s okay to not be okay.

Anyway… I’m feeling pretty positive now. I’ve been chilling this evening, watching TV and listening to music as per. I’ve also been thinking.

Lately, I’ve been doing a lot. I’ve achieved things that I doubted I would. I’ve taken risks that I was too scared to take previously.

And I’ve loved every minute.

For example, last week I went to London with my boyfriend to see Biffy Clyro. They were really good! We had standing tickets. Meaning we were close to the stage, but it meant we were standing at all times.

On the days, weeks even, leading up to this day I was kinda anxious. I was worried about the journey. We went by train. I have been on a train before but only to places I know well. Don’t get me wrong, I trusted my boyfriend and felt safe with him. But the worry was still there. It was kind of out of my comfort zone. I was also worried about standing for so long. I was worried my body wouldn’t take it. Whenever I’ve been to a concert, I’ve always had seated tickets so I can stand and sit as I please. But this time I took the risk.

And you know what….. I did it. I felt a bit tired and my legs were kinda achey but overall I didn’t feel as bad as I thought I would. And the journey there and back wasn’t so bad. It was an amazing experience all in all!

This weekend I’m planning on going to visit some friends up in London. It will be the first time I go up to London on the train on my own. However… I’m not actually that nervous. I’m excited about the whole thing!

Before the beginning of this year, I was certain that 2015 was the best year of my life to date! That year I had started to properly recover and there were loads of parties and events I attended. It was a fun year!

However now we’re coming to the end of 2019….. I’ve changed my mind.

I know we’ve still got a couple of months left of this year but honestly, so far this year – I have had the time of my life!!

I feel like I’m actually living a life. I’m being a 22 year old! And it’s all thanks to the people around me, new and not, who have released me from being “wrapped in cotton wool” and have allowed to live my life. Go out, meet new people, explore new places, learn new things, have fun!

I know for some close to me, it’s been hard letting me go. But what they, and i, have to learn is that physically I’m strong now. I have the odd day where I may feel weaker than usual, but generally I’m a pretty strong person! I’m able to go out, have a few drinks with friends, do driving lessons (probably not straight after a drinking session with friends though😂), go to concerts, stay up late and just enjoy life.

I’m happy thanks to those who have set me free and let me take risks. I don’t need to be protected anymore.

I am living my best life and it is brilliant! 😁

My Experience of Stomach Surgery (Part 2)

Following on from part 1…

So I woke up in intensive care. I only remember bits of being in intensive care as every now and then I’d just randomly fall asleep because of all the drugs they were giving me.

I had my own nurse in the unit, who stayed by my side at all times. My dad was given a room near by so if I needed him then the nurse could call to his room and he’d be down in 5 minutes.

I remember feeling frustrated and upset that I couldn’t move or communicate despite being able to hear and see everything. I could basically only communicate with people by blinking and making sounds.

I tried moving even just my fingers, but I physically couldn’t. I remember trying so hard to move, I felt like I used all the energy that I had to try but It was impossible. It was surreal and so scary. I felt like I was locked inside my own body.

I had a tube going down my throat, into my airways to breathe. I was on life support. I drifted in and out of sleep all the time I was there.

Nurses and my family would try to keep me entertained and communicated with me the best they could. Apparently, according to my dad, I’d get the odd foot massage which I loved! 😂

Because I couldn’t communicate verbally, others had to understand what I was trying to say through sounds, and eventually I gained use of one of my hands so I was able to – slightly messily😂- write down what I wanted to say. (I’ve been hunting high and low for the piece of paper which I kept from that time.. Showing what I wrote – or scribbled- on but I can’t find it😩)

For some reason I had an obsession with asking what the time and day was? It got to the point where I didn’t even have to say anything… I’d just look at Dad and he’d be like “it’s half 3 and it’s Saturday” or something hahaha

I don’t have many memories of intensive care.. As I said I was zoning in and out a lot. I remember the feeling of the tube down my throat though. It didn’t hurt nor was it that uncomfortable… Just… Odd. Like every time I swallowed, I just felt a large bit of plastic in my throat. Weird.

Anyway, I’m going to leave it there and keep you guys hanging on… The next chapter of this blog post will involve the next stage… Special care.