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.

IS CROHN'S RECOGNISED?-no

Did you know that people with Crohn's and/or Colitis get tired super easily? It's the same with Cancer patients, just we don't get all the publicity. Don't get me wrong, cancer is a terrible thing and I wouldn't wish it upon my word enemy, but everyone knows about cancer. Out of all of the people I've told about my Crohn's, only a handful of them had even heard of it, but if I turned around and said "hey, I have cancer" I'd have people jumping through hoops for me. But I don't. Instead I have people asking me: " why are ill?" "you don't look ill," "you're so pale, are you ok?"


I'M FINE.
I JUST HAVE A CHRONIC ILLNESS NONE OF YOU PEOPLE ARE AWARE OF. IT'S COOL.
I'M FINE.
NOT EVEN THE GOVERNMENT KNOW THE DIFFERENCE BETWEEN IBS AND IBD.
I don't usually rant about this sort of thing because illness, no matter it's form is horrific but for the three hours I've been sat here watching the TV with my dad, I've seen at least six adverts about raising money and awareness for Cancer Research and MacMillan ect. Nothing, and I mean NOTHING about any other disease. Nothing about the deaf or the blind, arthritis, liver, kidney and heart diseases. Nothing. Squat all. I under stand that cancer is killing people and most lives are on a time frame that may not be very long but other deadly diseases exist too.


I know, have known, people who lived with the awful 'C' word and a lot of those people will never be forgotten and will always be in my heart. One of my class mates is currently battling through an inoperable brain tumor and it's horrible. I wish nothing like it on anyone. We're doing all we can to keep her in the loop of things going on at school and we love her so much. It just frustrates me how everyone's energy goes in to that one illness.


I'm not trying to sound selfish, and I deeply apologise if I am; however, people with Crohn's have to live until they're 80/90 (optimum life expectancy) going in and out if hospital, on drug treatments and consultant appointments for around 80 years. Cancer patients have their tumor period and then the odd check up here and there once they are proven to be cancer free. in my opinion, it's just unfair on the patients who suffer the same amount of pain stress and boredom staring at the pale grey walls that surround them all day whilst in hospital. The same goes for every chronic illness.

ANEMIA

Okay, so from what I can remember, the moths between the second set of steroids and March were vile. I was violently sick at least three times which was strange because I was never a 'sicky' child. I was overly fatigued and couldn't find the energy if my life depended on it. So Mary decided to order me an Iron Infusion.

Turns out, I had a pretty bad case of Anemia which is caused by iron deficiency. The 10th of March was the day that I went to F3 to have my first ever infusion. The first of many I might add... It wasn't all that bad, I mean, the infusion itself only lasted half an hour and I got a day off school for it so I was happy. The infusion was this bright orange liquid and it felt rather 'gloopy' for use of a better word. I don't know if that was just me and how I reacted to it or Iron is just 'gloopy'?

While I was sat in the bed having a half hour infusion surrounded by my parents and nurses from left, right and center, I noticed a girl- roughly of a similar age to me sat on the bed in the corner by herself. I asked if she was okay trying desperately to draw the attention away from me for a while. She said a simple, "I'm fine thank you. I'm just waiting for my mum to get back". I smiled at her and nodded my head. Her mum who I later found out was call Sarah, had gone to get Chloe a coffee and a packet of crisps. She had a majorly long and tiresome day, bless her, It just so happened that she had Ulcerative Colitis and was on the ward for four hours before I even showed up. She was still on her infusion when I left the ward three hours later. It's days like that one that make me think about how ill I actually feel. I might wake up in the morning and give the day a solid NO, but I'm happy, I'm surrounded y people who love me and understand my situation and I'm not in hospital for weeks at a time like some people I know with exactly the same illness as myself.

Anyway, my infusion went well and I'm no longer anemic but I do have to take one multi-vitamin everyday and two/three tablets  of calcium with vitamin D; which, if you think about, isn't too bad. So out of a four hour trip to the hospital (including a coffee run), a pity party for the lone girl in the oppostite bed, and having a bright orange substance which could have been Iron Bru for all I know, I am anemia free a slightly more healthy as I was before, as well as slightly more understanding towards others.