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.

Fatigue

I don't think many people understand the meaning of chronic fatigue. Sure I can get a bit tired, but I'm fine to carry on with my day and the activities ahead, but other days, I can hardly manage to get out of bed. I've come to notice that my fatigue hits worse when I am highly stressed or feel really ill. My pain and lack of enthusiasm puts my days, sometimes even weeks, on hold.

There are days when the pain gets to me but I take 60mg of Codine and go on my way. Other days I have to use a walking stick, which is known by the name of Kevin in my local community. I often just grin and bare it, getting on with my 'normal' life.

What many people don't understand is how much of your time is wasted by fatigue. I, for one, believe in living every moment like it's your last as you don't know what the future has in store; however, sometimes, that's just impossible. I can ache so much at whatever time of the day and not be able to move it's so painful. I don't know why. The physio therapists believe that it might be a muscle problem that links to Crown's disease, I'm not sure of the technical terms for it, all I know is that it can bloody hurt.

My fatigue seems to come around at the most inconvenient times. For instance, I was getting ready to attend my friend's sixteen birthday party when all of a sudden I couldn't couldn't life my hand about my head to brush my hair. I hadn't had a stroke- the hospital checked! My muscles just refused to work. They had promptly crashed out on me and I couldn't show up to a really important occasion for one of my best friends. It was heartbreaking having to tell her I couldn't make it, we had been planning it together for months.

Anyway, back to the point: fatigue is a bitch.

Nobody should have to go through the agony of not having the energy to do anything. Their minds and their bodies are capable, just not at certain times of the day. It's difficult to go through, I'm still trying to manage it: with monthly hospital infusions and fortnightly physio trips, we are hopefully on the mend and my 'chronic fatigue' issue will die it's long, awaited death.

GCSEs, Crohn's and the loss of our Karla. What more can we deal with?

I've found that sitting exams is not the best way to try and keep your mind off of your illness.

GCSEs are hard at the best of times, never mind what the last three weeks has thrown at me. I've been physically ill, mentally drained and overall just under the weather. I've wanted to just pack it all up and run from everything but I knew, deep down, that wasn't the way to go around the situation.

The first week of exams wasn't as bad as I got told. I had three exams and they weren't too bad- AQA Biology wasn't the best exam that was sat, but the entire population of year 11s over the country would tell you that! The other two didn't shake my brain as much as I was expecting. The after math of the first week affected my second week pretty badly. I found that only having two days to recover isn't great for a Crohn's sufferer. I didn't want to wake up on the Monday. My body was having none of it.

To make the whole experience even better, we came back after a week off for half term to a line up of nine exams in the space of four days. On top of that, on Wednesday, we were made aware of the death of our good friend Karla due to brain cancer. We all knew the inevitable but it hit us all, the whole year, like a truck. We love her and miss her every second of everyday. Doing our exams on top of all this grief is painfully traumatizing I don't quite know how to feel about the whole situation.

Once the overall shock had settled in, I thought i was going to be alright with everything. I had my exams to focus on and tske my mind off of things but the pain kept coming back. I tried to ignore it and it just kept returning in all of it's hideous gloating. Should I want to hide it? Or should I accept the fact that this is life, and it hurts?

Neena

I saw the newest member of my team today. Neena is her name. My dad calls her 'nee naw' because he's the most juvenile person I've ever come across! She's the pediatric psychologist at Addenbrookes- well the current one anyway, she's standing in for the one on maternity leave. She's really nice and she's helping me try and see over my pile of 'what if' questions.
Over the last couple of years I've tended to ask myself a heck of a lot of questions about my future and where I want to go in life. If I'm being completely honest, I have no idea, but what I do know is, I have to chose my A Level subjects and that's confusing me as well as the exam stress from my current GCSEs.
All of these little stresses cause a major hole in my universe. The rip my mind to shreds and I have no idea how to sew it back together. There are days that I just want to scream but then I also know that I don't really have a valid reason to, people have it so much worse than me and anyway, I hate being centre of attention. I hate being judged by people who are utterly clueless and people who think you're worthless are even worse.
These are all of the things Neena and myself talk about and we're slowly but surely gathering up all of the torn fabric of my brain and sewing it together piece by tiny piece.

Inflectra

The year was 2015 and my Crohn's went tits up essentially. I was really ill and being sick almost every other day (the other end was far less pleasant) so I went for a consultant meeting. That is where the decision was made to put me on the infusion drug Infliximab in the form of Inflectra™.
I'm not going to lie, it sucks. They push this through me currently: every eight weeks but I have an extremely strong feeling that will get reduced to every six weeks. The infusion it's self is two hours but I normally end up on wars for about 5 maybe 5 and a half, depending how quick the nursing staff are to put the canula in!
I recently learnt that the hospital that I go to is one of very few places that let children use this form on infliximab which I thought was pretty awesome. The more people taking this drug, the better everyone feels... or so I thought. Inflecta isn't doing me any favours. I'm still throwing everything I eat back up, I'm still consistently tired and my sleeping pattern is utterly shot. It's gotten to the point that I sleep for an average of 10 hours every 3 days which is horrendous. (I'm a HUGE fan of sleep, so this fact is very upsetting.)
I started Inflectra in December and the first time I had it done, I physically couldn't get out if my bed. The cramps were over whelming and the headaches were out of this world. It got better the second time around but the spring in my step only lasted for 10 days and it gradually went down hill. I started going dizzy every time I stood up, I felt sick all of the time, I didn't enjoy that time of my life.
I've had the Inflectra infusion four times now and it seems to be controlling my crohn's but everything else such as: the sickening feeling, headaches, cramps and dizziness are still recurring factors in my life and I have no idea if I will every get my old life back.