Trusting your instinct

It’s important to trust your own instinct. That gut feeling you get about someone or something.

Recently I’ve been doing that. Particularly with my health. Any worries that I’ve been having, no matter what it is or how minor it is, I’ve been making sure I get it checked out. It’s so far been all minor things with nothing to worry about which is good.

But I’m still glad I got checked out when I did.

I learnt the hard way though. Years ago, 2 years or so before I got seriously unwell, I began having slight pains and aches in my stomach. I tried going about my life normally but deep down I knew something wasn’t right. I did kind of mention it to my consultant and parents at the time but I felt bad about wasting their time so didn’t mention it in the right way and certainly didn’t go into detail. I basically made the pain sound like a dull ache that was basically nothing. I didn’t really trust my instinct to be fair. And I told them I could cope. So nothing was done.

But deep down, something wasn’t right and a few years later we found out why. Looking back now, I can see that the pain I was getting was most likely due to the fact my stomach was growing unusually large and my organs were slowly moving with it.

Now I’m not saying that if I said something a lot sooner and trusted my gut instinct, my condition would have been sorted quicker. But something could have been done sooner, even just tests maybe.

I wish now that I listened to what my body was telling me. But I’ve learnt from my mistake.

How I coped with: Having a Picc Line

I haven’t got a Picc Line now, but I did have one for quite a while a few years ago. I thought I’d do a chapter on my experiences of having one. How I coped with it. The care that was needed. That sort of thing.

Let me start off by explaining what a Picc Line is, in my own words.

A Picc Line is a small, long tube that is inserted into normally your arm. The tube inserts into your arm, particularly into a large vein that carries blood into the heart. The tube runs up the arm, and towards your heart. It is designed for long-term IV use (so if a patient needed regular IV antibiotics, or needed blood taken regularly)

I had it for those things, but also for nutrition. When I was really poorly and was an inpatient in both Kings and my local hospital, I was connected up to a machine that pumped this particular liquid into me that had all the nutrients I needed in it. This was called TPN (Total Parental Nutrition). The reason I was having this was because I had a lot of trouble physically eating and was barely keeping anything down. They needed to get nutrients into me and this was the only way. It meant long stays in hospital and frequent visits to the hospital when I was allowed home.

When I was allowed home, I still had the Picc Line inserted as doctors knew I’d need it again at some point. Luckily a Picc Line is designed for long term use and can stay inserted for as long as it needs to be in. Some people have a Picc Line for life.

I was a bit nervous about being at home, and leading a normalish life with the Picc Line. What if I knock it? What if something goes wrong and I lose blood or something? It was scary but I eventually got used to it. It also helped knowing that I had a community nurse who was on the end of the phone whenever I needed her. She also came round once a week to flush the line to make sure it was clean and wasn’t blocked.

It wasn’t pretty looking and so I had a bandage around it most of the time. That was also for protection. Luckily, it was in an area that I could easily cover it up too. I could just wear long-sleeved clothing to hide it.

It was also itchy from time to time. This is because the dressing that was put on it stuck firmly to my skin to keep it in place. This made my skin underneath extremely dry and uncomfortable. This was probably the worst part of having a Picc Line thinking about it. Although… There was a slight benefit to this. Every week, when my nurse came round to flush the line, she’d also change the dressing. When she’d take the old dressing off, she’d get this little cleaning device. It was basically like a small, wet sponge. She gently massaged my dry skin to clean it before applying a new dressing. Omg it felt so good!! I didn’t want her to stop😂. I kind of miss that feeling😂

After she’d finish cleaning, she’d apply a new dressing and a new bandage. And that was that.

I never really had any trouble with the Picc Line. It was pretty useful at the time. It meant that anytime I had to go to hospital, I didn’t have to have a cannula inserted to be put on a drip or have medicine injected into me – they just used the Picc Line!

However there was one occasion where it failed when the nurse came to my house to flush it. It was also starting to make its way out for some reason. The nurse tried pushing it in a little and also went to do her thing, got a syringe and began pushing to flush, but the syringe would be stiff and wouldn’t push the water through. She tried multiple times and checked the tube that was showing. Nothing was working.

She came to the conclusion that it probably had to be taken out. But she couldn’t do so without the permission from my consultant. She tried contacting him but had no success. We waited a little while but eventually she said “I’m going to have to take it out”. So she began gently pulling it out of my arm. My parents looked a bit worried and were probably thinking I was scared too. But I breaked the tension by causing a little bit of laughter. It was all quiet as my nurse was gently pulling it out. I looked down and thought it looked like a ‘magic trick’ that a clown does. You know, the one where he pulls multiple tissues/napkins out of his sleeve and it seems never ending. That one. So she was pulling the tube in my arm and I started going “duh duh duddah duddah duh duh duh” (the clown theme if you know it😂). Everyone laughed. It really helped what was a stressful situation for all of us in the room.

Here are some awkward photos of me with my Picc Line in🙈😂

How I cope with nausea

I thought I’d start doing blog posts on ways I cope with certain aspects of my life in hope that it could be helpful to someone who may be going through similar. My first topic – sickness/nausea.

First of all, the feeling of sickness is different for everyone. The levels of it varies, and it can obviously be caused by a number of different things.

I suffer from nausea daily. I have done on and off for as long as I can remember, although it’s become more regular since my procedures at Kings. It’s actually a daily thing now. The level of nausea I get varies though. Nowadays the levels are quite mild – meaning that it’s easy to cope with. Although there are times where my nausea can get quite bad and horrible. These moments normally happen first thing in the morning or after I’ve eaten a certain amount of food. It’s not pleasent and to be honest, I find myself thinking that I’d rather have sharp pains in my stomach rather than the nausea I receive. That’s the thing I’ve found in recent years. I’d much rather have pain than sickness.

As I’ve mentioned, I suffer from nausea daily however fortunately because it’s quite mild, I have learnt to ignore it and carry on with my normal day to day activities.

It took me a while to get to that stage though. I had to teach myself how to cope. Especially without the use of medication (this is kind of where the cyclozine mentioned in my previous post, links in).

One thing that I found really helped me – with any discomfort really – is music. Listening to music really helps me. I do have a tendency to listen to my music quite loud with headphones on. I don’t have it too loud, but enough to help me blank out everything around me and the physical feelings that are occurring.

I think not only does music distract me, the vibrations of the sounds and beats of the songs really help me. I find that moving.. Or vibrations in some way or form really help me. I don’t know why if I’m honest, but it really does help.

Another way of controlling my nausea can be done by breathing techniques. I used to suffer really bad with anxiety and so during my therapy sessions I was taught how to breathe when I was feeling extremely anxious and/or having a panic attack. I found this helped with my sickness and discomfort too. Breathing in and out slowly and calmly is a great way for me to feel more at ease. Physically and mentally.

Them two techniques are the main things I use. Other ways include, having someone distract me by talking to me about something different, making me laugh or just putting something on the TV that I enjoy watching. I’ve also found recently that a back rub also helps!

Like I said earlier, everyone’s different. And different techniques work for different people. It’s about finding the best way for you.

Also none of my techniques unfortunately work 100% all the time and definately don’t have a long-term effect. But if I can find ways to keep myself in a stable, comfortable place for as long as possible – then I bloody well will do so!

Addiction: Then and Now.

Being addicted to something can be quite scary sometimes.

I’m going to hold my hands up and admit I was once addicted to a certain drug that they gave me in hospital a few years bag.

It was a strong anti-sickness drug that I sometimes had injected into me following surgery and/or treatment. The name of the drug was cyclozine (I think that’s how you spell it😂).

When they first gave it to me – it had an amazing affect. I used to suffer with sickness quite badly. I still suffer from it time to time now but it’s no where near as bad as it was. When they gave me cyclozine I felt a buzz. It definately stopped the sickness but it also had a slight side effect that made me feel a tad…. drunk😬😂

My eyes would widen, my heart would race and I would feel extremely happy. I felt great as soon as the drug hit me… Which was within a matter of seconds of it being injected into me.

It was such a relief.

The more surgery, treatment and admissions into hospital I had, the more I would have cyclzine. I became used to having it… Heck after a while of having it on and off quite regularly because I was so poorly, I craved it.

It got to a point where I felt like I needed it despite me not feeling any sickness whatsoever. I just wanted the buzz. It was scary. The thing is I had no control over my feelings towards this drug. I demanded it sometimes. I got angry and upset if I couldn’t have it.

Eventually something clicked, and I realised that I was now actually taking it just for the buzz. For the feeling of being drunk and quite possibly.. High.

I tried to tell others. My family and nurses. But felt embarrassed so I didn’t explain my issue properly. And everytime I felt sick or “felt sick” they would offer it to me and I couldnt turn it down.

I know that’s sounds wrong but I honestly did not know what to say or do. My body was hurting and craving this drug. I felt relief once I got the buzz from it. It was both horrible and relieving at the same time. It was odd.

However one day I just thought the only person who can put a stop to this is me. So I demanded the nurses and ym family to not listen to me when I demanded the drug. I asked them not to give it to me under any circumstances. Don’t give it to me in theatre (because of the addiction and becuase they gave it to me once in theatre and I woke up whilst on the operating table😳). Don’t give it to me when I’m asleep. Just basically don’t give it to me full stop.

I said ill deal with the sickness by myself. I’ll persevere and get through it on my own without medication.

And guess what.

I did it! I avoided having the drug and felt much better for it (it was hard at first but I pushed through).

Nowadays I can’t stand the thought of the drug. It makes me cringe so much. Just typing this blog makes me shiver.

I’m doing well with the support of the medication I’m on (all oral).

However recently I’ve discovered a new addiction I have. It’s not a medication this time though. It’s probably not so much of a risky/bad addiction as cyclozine though.

Percy Pigs.

Yes. I am addicted to Percy Pigs. Now this is an addiction that I probably shouldn’t be too worried about🤔😉😂 **

**may I just add that I am not living off Percy Pigs. I do have a varied diet… I just find these sweets incredibly good😍😂

Highlights of 2019

I know I said I wasn’t sure whether I would do a post before the end of this year but Ive been thinking and thought I had to do some sort of sum up of the year before it ends.

This year has been quite a big year for me. There’s been some lows but many highs!

I think I’ve mentioned before, but looking back at previous years, I’ve always said how 2015 was… Up until now… the best year out of many.

However, 2019 is now my new favourite.

I started off the year settling into my first job. (I started it only a few weeks before Christmas 2018 so was still pretty new when I returned after Christmas)

I had a few false starts and doubted wether I was actually capable. I didn’t have the people skills and I certainly didn’t have the confidence.

Fortunately, with the support of colleagues and friends and family I stormed through and over the months I improved vastly. I had a blip around march/April time where I started to feel low and useless. I was starting to enjoy my job and I was learning and doing well, but something wasn’t right. I was struggling and starting to not be able to cope mentally.

After the encouragement of friends, I made an appointment at the doctors who got me the help I needed.

I was put on anti-depressants. The first lot they gave me made me very ill physically. I detereated very quickly, within a few days. And with my condition, that could be harmful and cause problems with my physical health. So within a week I stopped taking the medication and arranged another appointment with the doctor. He prescribed another anti depressant. This new one made me feel a little rough within the first week or two but afterwards didn’t have any physical effect on me whatsoever. I also started to feel happier in myself. And began to enjoy life more.

Once things had settled, the medication had kicked in and I’d settled into my job. Around May time I decided that I was ready to start properly dating so I joined Tinder.

I had been on Tinder on and off for a few months previously (I originally first joined in 2018) but I never felt ready enough when I joined them times. I was still trying to figure out who I was as a person.

Come May this year though, I knew who I was. I was happy with myself. And I was ready for a relationship.

I talked to a few guys, had a few dates but nothing really came of them.

Then I had this one date with this one guy… Then another with him, and another. Long story short we are now in a relationship and we’ve been together for 6 months.

The last 6 months of this year has been great! It may seem like a little thing to many but I feel like I’ve hit a milestone I doubted Id ever hit. Because of my condition, I doubted whether I’d ever be in a relationship. I didn’t think I was attractive enough (mainly due to the shape and look of my stomach) or even had a personality worthy enough (silly I know).

But, being with Ryan has changed my life for the better. I’m even more confident in myself, I’m happy with my life. I don’t feel worthless and I don’t feel unattractive.

I have also met new people and gained new friends from knowing Ryan. It’s been amazing!

Anyway I’ll stop going on about that now😂. I don’t want to go too much into detail about our relationship as even though I mention something about what we’ve done or how he makes me feel occasionally, I prefer to keep our relationship mostly private. And we’re both happy with it that way.

Another milestone I’ve reached this year is driving lessons! I’ve had driving lessons before but stupidly quit after a few lessons as I wasn’t confident enough.

I found a new instructor and re-started lessons later this year. I’ve had many lessons and despite having a few false starts (quite literally🙄.. Sorry bad joke😂) I’m doing well and do not plan on giving up at all!

Also this year…. I finished my job at the school. This is because my contract ended and tbh I was only there to complete an apprenticeship anyway. I was grateful for them taking me on though – I’ve learnt so much and gained so many skills!

This apprenticeship has helped me land a new job too! It’s another apprenticeship. But at a higher level. I start in January and cannot wait! New year, fresh start!

In 2020 my new years resolutions are to keep enjoying life, keep refusing to give up and to pass my driving test!

Ive got many things to look forward to in 2020 including a holiday (possibly), going to see Queen and Adam Lambert in June, and many other exciting events and adventures with my boyfriend, my friends and my family.

Bring on 2020!!

Christmas and Recovery

It’s a few days late but better late than never… Happy Christmas!

I hope you guys reading this had a magical day. I certainly have enjoyed my Christmas.

I spent Christmas with my family and my boyfriend and his family. Its been a busy few days but definately one to remember.

There’s been plenty of fun, love and laughs.

I’ve starting to get into recovery mode now. Like I’ve basically said, I’ve enjoyed every minute of this Christmas.

Christmas eve, I spent the evening with my boyfriend and his friends. We went out for a few drinks. It was a little strange for me as I’ve never gone out on Christmas eve. I’ve always spent it indoors with my family. Never the less though, it was a right laugh and I definately don’t regret going. It was weird for my parents too as it was the first time me and my brother were out the house Christmas eve (my brother was working). They didn’t know what to do with themselves😂

Christmas day, we tried to make things as normal as possible and kept tradition. We spent the majority of the day with it being just us. We got up, opened our presents, had the traditional Christmas Dinner, shared bad cracker jokes and had a giggle or two. It was great. In the evening we had our neighbours round as well as my boyfriend. We played a fun game, had a few drinks, some nibbles and again.. We had a laugh.

Boxing day I spent the day with my boyfriend and my family. My nan came over too.

In the evening I spent the evening with my boyfriend and his family. We played games and guess what.. We had more laughs.

Today I came back from staying over his. This morning I took my Dad antique shopping (as part of his Christmas present). This afternoon I’m just chilling.

I’m starting to feel the effects of having a busy week and all the excitement of Christmas. My body feels achey. I feel so tired. My body is telling me to rest. I guess that’s half part of having a chronic illness and half just genuinely from having a busy few weeks. I know anyone can feel tired if they’ve been through alot for a while, so I can’t fully put it down to the chronic illness that I have.

But I do know that with my condition, I do have to take things easy sometimes. I need to rest and listen to my body from time to time.

Luckily I know my limits now and know what to do and when to rest. This means I can push myself to a certain extent but not to an extent that I over do it and make myself unwell.

Despite my tiredness, I don’t regret the last week or so at all. It’s a shame that I can make myself exhausted by doing simple things sometimes, but sometimes it’s a price I’m willing to pay. If I didn’t take risks, if I didn’t push myself then I wouldn’t get anywhere. So I’m proud of myself for that and will continue with this attitude into 2020!

If I don’t post beforehand, I hope you guys reading this have a Happy New Year and I hope 2020 brings you good health, happiness and love.

I, for one, already know I have some exciting events and milestones lined up for next year!

Katie x

How and why I stayed calm leading up to and during my surgery (well… tried to) part one..

Today I had a notification on my phone from Facebook.

It marks 7 years to the day that I got a letter saying when my first major operation at King’s would be.

It was going to be on the 18th January 2013. Its a date that I will probably never forget.

The day I got the letter, I had gone out shopping with a friend. We had such a good time. I forgot about all that had happened the past few months and forgot that I was actually quite poorly.

I got home, sat down, and was given an envelope by my parents. They sat down with me as I opened it. They knew what it was. And deep down, I did too.

I opened the letter shakily and read every line.

I found out when the operation will be, what tests I’ll have beforehand and what to bring with me to the ward as I was going to be an inpatient for a while.

I read it carefully over and over. It couldn’t sink it. I felt numb. I was just like “oh okay” and then carried on my day. My parents were ready to reassure me but didn’t seem to need to at that stage.

I just thought.. it is what it is.

However later on that day, It finally did sink in. I was talking about it with my dad. The more I talked about it, the more real it became. This wasn’t all one big joke nor was it a dream.

It was real life. I was going for major surgery for the first time in 15 years. And this time I would know what was going on. I would be putting my life in someone else’s hands.

I suddenly started feeling sick and breathless. I started crying and said “Dad I’m scared”. He hugged and reassured me that everything was going to be okay. He and mum was scared too, but they also knew I was in good hands.

This was going to happen, it had to happen. I had no choice.

Looking back, feeling grateful and looking like a bloody octopus!

I’ve just come back from a successful driving lesson. I’ve had a few lessons now, and each time I feel like I’m getting even better at driving.

I’m really enjoying it!

My life recently, despite having highs and lows (as anyone’s life does) has been pretty “normal” – as ive previously mentioned.

This time about 6/7 years ago, I was extremely weak and poorly. No one knew what the future held for me.

I questioned whether I’d ever have a life. I didn’t know whether I’d ever learn to drive. Whether I’d ever get into a relationship. Whether I’d ever be able to work. And I know this was a horrible thought to think.. But I questioned whether I’d make it to my 16th birthday.

It was a horrible time with a lot going on. No one knew what the outcome would be. It was touch and go. We had to take risks and fortunately I was very lucky.

Look at me now, 22, learning to drive, in a relationship, working.

Im very fortunate to be living the life I’m living now. The outcome could have been a whole lot worse.

I think that what I’ve been through has also made me grateful for the smaller things in life. Any milestone I reach or any baby step I take.. In anything I do, I’m proud of!

Some people might think I’m a bit too enthusiastic about the smallest of things sometimes but I can’t help it.

Somedays I’m thankful that I’m still here, living😂

Even back then, I was grateful for the smallest things. Things some people might take for granted.

Here is a Facebook status/photo I posted in December 2012…

I was estactic about having the tube taken out of my nose! I was grateful for not having something so ugly and uncomfortable taken away – just in time for christmas! I finally looked normal!

(however it wasn’t out for long as the following January, I had my surgery and throughout the year of 2013, I had many tubes in and out of me… I looked like a bloody octopus at one point!😂😂🐙)

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..