It all gets a little too much

So this one has taken a long time to write, so bare with me.

Life just get a bit hard sometimes.

I wasn’t ready for the events that I would have to encounter in my short life so far, but I’ve had to deal with them and get over it.

The world expects you to be brave all of the time and smile like nothing has happened.

Well it had happened.

And I’m NOT okay.

I struggle but I fight and sometimes I lose. I’m okay with that. I can admit defeat. But I need time to process that defeat. I’ve had to be strong for so long that I sometimes forget to collapse, and lift the world off of my shoulders.

I’m trying to survive and I have to keep telling myself that I’ll be fine and I have to keep my head up, be strong but it’s hard to remember sometimes. There are days where I just want to curl up in a ball and wish the world away. I don’t want to die. But I don’t want to live with this swirling around in my head. In between a rock and a hard place I guess.

I think the worst part of it all is, that I can’t pin point a specific event that has made me feel so sad in myself. I have Crohn’s disease, big whoop. I’ve had to deal with that for 5 years now, so that can’t be stressing me out too much. Admittedly some things within my little world of Crohn’s are changing, but I’ll get on to that later.

Is it because my dad is sick?
Or my mum is having a hard time keeping our family above water?
Is it because I’m worried about how my life going to shit will effect my relationship?
I don’t know.

It could literally be anything at this point.

The third week in May of this year, I got really bad back pain. I went to the doctors, had a routine uti, no big deal, week of antibiotics and I’d be good to go. HOW WRONG WAS I? It turned out that my “routine uti” was sepsis, caused by a burst cyst in one of my kidneys- not fun btw. I ended up being in hospital for two weeks and after having 5 cannulas fail, I had had enough. I made them give me oral antibiotics and they sent me home. I was in pain and I was so tired it was unbelievable! But now I’m back at work full time after having the whole of May off and physically I’m doing pretty good. Mentally? Well, that’s why we’re here!

Anyway, the three different types on antibiotics I was on, in the two weeks I was in the hospital, decided to fuck my liver up. Therefore, I’ve been taken off of my Azathioprine and we’re in discussion about going on Vedolizumab. Not an easy one to pronounce there!
 But hopefully it’ll work and keep my symptoms at bay.

On top of all of that, my dad had started dialysis. He had this tube in his stomach, which allowed him to drain bad fluid out and replace it with good fluid around the kidneys. It was pretty cool and meant that he didn’t have to visit the hospital three times a week. However, he caught something called Peritonitis. Nasty piece of work. Within 7 months, he’d caught and been treated for peritonitis three times. While on antibiotics the second time, he got a phone call saying that there was a kidney ready for a transplant. What a shit time to get such good news. Because he was so ill, his body wouldn’t have coped with the transplant so the operation didn’t go ahead. Back to the bottom of the list he went. But every time you get peritonitis, you’re taken off of the list until three weeks after the infection has cleared. So dad’s chances of getting a kidney anytime soon are SUPER LOW.
The third time he caught Peritonitis, was the worst. The doctors at the hospital decided to take the tube out of his stomach and close all the wounds up with staples, ended up having like 13 or something. The have him a neck line so that they could see if after a month of not doing Peritoneal dialysis, that would lessen the chances of him getting Peritonitis again. In the meantime, he’s doing hemodialysis through the neck line, meaning he’s having to go to the hospital three times a week to get dialysis.

No wonder my mums having a mental breakdown! She’s the one who looks after us. She’s the glue holding us all together. What happens when she falls? I mean, we’re all there to pick her back up, of course we are. But I’m just scared that my family will never be the same.

I probably should go and see a shrink so they can pull the shit in my head apart and tell me I’m being ridiculous and over thinking it all, but I know that’s exactly what they’ll say so why go in the first place? I fully understand that talking to someone will do me good, but that’s exactly why I have this blog. To be my own little on line diary. I can write almost anything down on here and the weight of it all has lifted off of my shoulders.

Thankyou for helping me clear my head a little bit sometimes.

If you smile, the world smiles back

I'm trying my best to be a more positive person...I'm finding it pretty difficult by the way! It's not that I don't wan to be positive, I do, it's more the fact that the world is a pretty rotten place. I have this thing where whenever I think I'm beginning to be happy and everything is just folding together nicely, it goes to shit.

Take my Crohn's for example. I have months of not having a flare and feeling good about my situation. Stool samples are normal and blood tests come back with the right numbers. Stomach pain is at a minimum and my achey joints aren't too inconvenient and then BOOM. Flare. Just when I didn't need it. I was so content with not having to deal with the crap (literally) of Crohn's and then here we are again, back at square one.

Another example is the whole mental health thing. I don't have bad days as often anymore because I think I may have figured out how to work around the black hole that is my brain, but there is always the loop in the distance that is just begging to drag me back to hell. A tiny little voice at the moment can sound like a thousand screaming monsters in my head on a bad day. I can't hear myself think and as I said previously, I get dragged back to hell.

However, my motivations for smiling my way through the day include;

• Payday!
• My dog.
• The love in my mum's eyes when I smile (she gets that proud parent shimmer in her eye whenever me or my brother come home and don't scream the house down in rage).
• The fact that I have such a good support network around me of friends and family that remind me that I have no reason to get angry or upset over the stupid little things. 

I've learnt to be thankful for what I have and for those who help me and that's what gets me through the tough days. If you have people who love you then you are one of the luckiest people on the planet, and that is something to be happy about.

So smile once in a while, the sun will seem brighter, the hugs will seem cosier and everything will be better.

I need to get this off my chest

I want to talk about something really important. Maybe the most important thing I will ever talk about in this blog. I want to talk about my mental health.

I'm going to be straight up, I'm not in a good place. I'm struggling. It's all getting a little too much. I know I can get through it, the fog in my mind will have to clear up eventually I guess. I just need to stay focused on what's important in my life and not get distracted. I CANNOT lose that focus.

A friend quite recently said to me, "you have so much shit to deal with on a daily basis, you're allowed a wobble every now and then." Those words spoke volumes to me. Even after everything that they have been through in their own life, they still took their time to help me through a hard time I was having- which in hide-sight, was nothing compared to the trials and tribulations they have had to face. They took the time and effort to help me, when they didn't have to. They talked me out of giving up and I will forever be in their debt.

Okay I need to stop putting it off.
This is a hard topic for me to talk about. I don't know why, I just can't find the right words to say.

I just want the world to stand still. I want to get off the ride. I need to take some time to breathe.

LET ME BREATHE.

My mind is just a blob. I'm confused. I don't know how to express the feelings that I'm feeling.

The worst all started a year ago when I had a really bad thing happen to me. I don't want to say what, but it was the worst things that will probably ever happen to me and I will have the memory of that terrible ordeal for the rest of my life. I couldn't comprehend how someone could do that to me, I still can't. However, the last few months have been extremely difficult for me. I haven't been able to stay focused on the important things. Everything has become scrambled and I can't see the light at the end of the tunnel.

I just want to feel okay again.

I don't really know how to describe how I'm feeling in words, expressing my emotions isn't a skill I'm good at! Most people around me don't even realise that I'm not the same person they think I am.  I put on this really bubbly act when inside I feel like the walls are caving in and everything is crumbling around me.

But it's okay that I feel this way. Everybody has good and bad days. Some days just turn in to weeks and sometimes those weeks turn in to months. I've tried to put on a brave face but the fake smile just isn't cutting it anymore! I need new tactics. Maybe one if them could be "CHILL THE F OUT!!!"
If you hadn't noticed I try and laugh as my owm missfourtunes because then nobody else can judge the way I personally deal with these tricky situations.

Anyway, life will hopefully get better soon. I have some good people around me who are supportive and understand. I try not to put too much strain on my parents, they've both got their own issues going on, never mind whatever's going on in my head!

But if any of you out there are having trouble, reach out. It could be to a teacher, a doctor, a family member or a friend. The ones who love you will always have your back.

Still looking for answers...

Yep, you read that right. It's been four years and I'm still no closer to knowing why I feel so rotten. The doctors don't know if it's the medication that I'm on, the fact that school is stressing me out or maybe I'm just that really annoying patient who gets all of the systems of a flare but there is NO medical evidence to prove that. I mean ZERO results have any trace of my inflammation levels being any higher than they should be. I've had an MRI, a Colonoscopy and and a Endoscopy as well as, what feels like a million and one blood tests- just to triple check that the lab hadn't missed anything.

I JUST WANT SOME BLOODY ANSWERS.

I want to know why I've been being sick four times a day even though I'm not eating enough to produce that much vomit. I want to know why when I'm not physically throwing up, it feels like I should be. I want to know why I need a nap for 24 hours of the day- everyday. And my main question is why do my body constantly to try and kill me? Like, I just want to eat chicken nuggets in peace without it feeling like I've been stabbed in the gut. Why chicken nuggets? Why couldn't my intestine not think broccoli was poison? 

I want to know my back feels like I've been piggy backing Jack Black all day. Like it flipping kills. It cracks everything I sit up straight and then gets stuck (that's VERY uncomfortable by the way!)

Don't get me wrong, I have an undying love for our NHS but I really just want someone to have a definitive answer for me. I know it's not their fault that my case is an absolute nightmare but wouldn't it be nice?

I am 100% aware that my situation is far from the worst case scenario, but over here in my own little pit of despair, it hurts. It feels like my life is being run by this disease and I don't want it to. I've had enough of being in the unknown about my own health. It's possibly the most annoying situation I've ever been in, and I grew up with an older brother! Yeah, this is even more annoying than him kicking my shins under the dinner table every night for three years. My level of annoyance has flown off the scale that my brother sits on!

It's nobody's fault that I've been put in this situation but at the moment, it feels like the world has a Vendetta against me. Why is this world making it so difficult for me to be able to do everything an eighteen year old should be able to do? I don’t have the energy at the end of the day to go out and party, I struggle keeping my eyes open for an entire day at school (and that’s only six hours- that’s a quarter of the day) I should be able to keep my eyes open for six hours! I want to be able to go on holiday with my friends and not have to worry about needing to go to the hospital and having to take all of my medications with me through customs- which is extremely hard to do with the amount of Codine that I get prescribed! Going out for a meal is even difficult if it’s to a restaurant that I have never been to before, not knowing if the food was going I have an explosive reaction in my intestine, making me really sick.  Basically, I’m a ninety year old lady, doing ninety year old lady things. I have two naps a day usually, I go to bed at 8 o’clcok, probably watched the majority of films on Netflix due to me not being able to get off the sofa and I drink tea all day. Some may think that sounds like I’m living the perfect life, trust me, it gets super boring.

I JUST WANT MY NON-INFECTED COLON BACK!!!

ANXIETY

So I suffer from anxiety. I don't know why it's taken me so long so admit it. I've just felt so ashamed for so long that I'd be judged or thought of as weak. It's possibly my biggest fear. I don't know how I would cope if people could see my walls crumble before me. Over the past four years, since the diagnosis of Crohn's, I've built some pretty strong walls in order for me to protect myself. I put on a brave face and get on with my day, if I don't have that brave face, what do I have to hide behind? I use it as my confidence, my coping mechanism for all the bull**** that the world has thrown my way over the years. And not going to lie, my fake smile is getting pretty fool proof, if I don't say so myself!

If I'm having a bad week I could have three or four a day attacks a day. What happens ranges from crying fits to shortage of breathe. My latest attack felt my body had shut down, I felt paralyzed. I didn't know what to do. I just froze. I mean, I can normally assume that they're going to happen but this last one, it just showed up, it really was an attack! I couldn't see it coming. I have no idea what bought it on, or how i managed to calm myself down afterwards but I somehow did. Normally, when i feel an attack coming I put my earphones in and take a walk, I remove myself from the situation that  made me anxious and calm down quite quickly but this particular attack didn't give me that option. I was an absolute mess. All I could see was a mass of blackness. I felt like I was trapped in a whole on my own with no way out. It all got a little too much and I guess my mind just cracked. I subconsciously gave up on myself and let the hurt slip through the cracks of that wall I had built.

Anxiety is a weird thing to have. It's actually really difficult to put in to words. I find it hard to explain simply because there are so many ways a panic attack can affect someone. Sometimes the attacks are visible, sometimes they are not. Sometimes the attack allows you to think of a way out, sometimes not. It's different for every person and every attack.

I wish I knew how to 100% control my panic and anxiousness but I can't at the moment. I can only assume when they are going to slowly creep up on me. It sucks, I know, but you have to remember all of the coping mechanisms that you have for yourself. Whether that be going for a walk or listening to a particular "calming down" Spotify playlist. As long as you are able to understand that these attacks are going to happen at points in your life, you'll learn to control your own panic.

As long as you are content with yourself and you know who you are, you'll get through this. You are NEVER alone.

The past eighteen weeks

Since the last time I've spoken to you, so much has happened. I've been admitted to hospital, received my GCSE results, changed consultants, moved wards, started my A Levels, fished both physio and psychology, dropped an A Level, started a different A Level and changed my drug routine all in the space of 18 weeks.

Lets start with the 'being admitted to hospital' thing. In my last blog post, I was explaining how I was being put on two weeks of Flucloxacillin, safe to say, that didn't work. I was taken to A&E at 19:45 on Thursday 28th of July. I was seen by a gynecologist at 23:00 and again at 00:50. I was in hospital for four days before they drained the cyst, not being able to move the bottom half of body due to the excruciating pain. Anyway, they drained it and I was out of hospital less than half an hour of coming round from the anesthetic.

My GCSE results weren't too bad. I got 4 C's, 4 B's and 2 A's  which was enough to get me in to the sixth form college at my local secondary school. I decided to take Art, ICT and History in the first instance but after some complications, I dropped History at school and changed it for English Literature with Oxford Home Learning. They are all so helpful and I would highly recommend them if you are looking to do distance learning.

As I am now seventeen, I am no longer classed as a pediatric. That means that my consultant team has changed and I now have m infusions on the adult ward. I get seen my Miles Parkes instead of Mary Brennan. I haven't yet had a "proper" meeting with Dr Parkes as I have previously been in transition, but hopefully, my appointment on the 2nd of December will go smoothly. The ward is very different to what I am used to. Everyone is very close together: where you would have 3 people on peds, you get 7 on adults. Very different. The staff are lovely, always rushed off of their feet, but lovely. My fist encounter was pretty terrible but I'm hoping that it works out and I don't panic every time I have to have an infusion. Another thing with adults that is different, is that you receive the drug in half the time, they used to take 2 hours but now I get it in 1 as well not having to wait around for an hour afterwards.

All in all, it's been a very strange experience. I'm praying that it all calms down soon so I can be calm and collected before my first A Level exam in ICT on the 9th of January.

I will keep you up to date when I get the chance.

A week in and out of hospital

So another week is over and I've had a physio appointment, an infusion, a psychology appointment and an unexpected visit to the doctor.

My physio appointment on Monday turned out abut different to usual. I have had some back pain over the last few years but it has gotten considerably worse since January of this year. I normally go to physio and do some exercises or go in the hospital gym but this time, I got told I have over strained he muscles on either side of my spine. As a result of this, I got a deep tissue massage and even more simple exercises.

On Tuesday when I had a regular infusion. It should have taken three and a half hours- which isn't too bad; except, I was there for EIGHT HOURS. In my opinion, that is a ridiculous amount of time. A and E patients are important but so is my infusion. There was three 'emergency' patients or before me on treatment, which resulted in me becomes very, very irritated. Apparently, there was only one doctor that could prescribe in the entire hospital which rather annoyed me. I sat there for three hours with a cannula in my arm before he (the doctor) even came to talk to me. He asked me how my bowels had been and if I had been ill in the last four days and then just walked away and I then waited another half hour to actually start the treatment.

Friday was my psychology appointment. It ran a little bit longer than expected but it was worth while. I always seem happier when I see Neena, which you may have read in a previous post. We spoke about how my exams had finished, my anxiety levels had lowered and my stress wasn't too bad anymore. All the appointments and conversations we've had over the last few months have obviously helped a lot.

My 'emergency' appointment to the local doctors surgery wasn't long but it needed to be done. Two years ago, I had a Barthalins Abscess and I felt the same discomfort as I did two years ago. I went to the doctors to have it checked out and got told that the gland inflammation had returned and I got two weeks worth of Flucloxacillin.

So all in all, it's been an exciting week. I'll catch you up on my upcoming appointments when they happen.