Realising I’ve made it

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

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

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

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

And it did.

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

I had time to think. Finally.

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

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

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

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

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

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

“Will I ever be normal?”

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

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

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

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

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

A life didn’t seem possible.

BUT.

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

And you know what?

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

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

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

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

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

Update

Hello!

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

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

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

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

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

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

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

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

K x

Self-isolating, Working from home and a Thank You

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

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

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

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

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

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

Stay safe and try and stay sane! 😂

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

Finding the right rate for me

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

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

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

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

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

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

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

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

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

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

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

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

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

Turning things around and making a life worth living

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

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

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

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

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

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

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

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

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

Life is good😊😊

Reversing the role

Hi!

Sorry I haven’t been posting lately, I’ve been focusing on settling into my new job. It has been brilliant! 😊

I’ll talk about it more some other time but for now I want to talk about “Reversing the Role”

Let me explain…

As I’ve mentioned in recent, previous blog posts, I am living a “normal” life now. I’m doing pretty much everything a woman my age should be doing, despite my condition. Ive been overall pretty healthy and strong and have been able to lead a normal life.

I get the odd pain and sickness now and then but I can manage.

Recently, though, the same can not be said for someone I know. They’ve been struggling with their health recently. I won’t go into detail and I won’t say who it is as they’d rather it kept private, which I appriciate.

This person supported me a lot during my time in and out of hospital. They helped me through the bad times and helped cheer me up when I was low.

Now, it’s my turn to do the same for them.

They’re the patient, I’m the support. It’s weird. But a nice weird. Obviously I don’t like what this person is going through. I’d rather them not go through it at all. But it’s an interesting change to be on the other side. I get an understanding of what it was like for them. I want to support this person as much as I possibly can because they did so for me, throughout all the hard times.

Times have changed. I have no idea what the future holds, that is true. But for the time being, I am the one trying to hold things together and cheer up someone. And it’s a change that gives me the opportunity to be the supportive person that this person needs.

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😍😂