Evie started fundraising for Crohn's & Colitis UK in 2013 and won a Yorkshire Children of Courage Award in 2014.
Evie's #7daysofIBD highlights the different days children with Crohn's or Colitis can face.
DAY 1
Yesterday I had an MRI scan and today I don't feel well enough for school. I just want to stay in bed but I know I have to get up soon to go for my monthly blood check. Problem is I only have one good vein! I'm not bruised from the cannula yesterday which is a good thing. But that wouldn't matter because Dr Hall is so gentle I never bruise. So my bloods are done and I go back to bed. I so want to be well for tomorrow as it's my birthday!
DAY 2
Today is my birthday (I didn't have a good night) but I'm determined to go to school because I really want to see my friends. I always thought I'd love to be off school for ages. But having missed so much of school for 2 years I just want to be normal and be able to manage a whole day of school.
My brother bought me the new Little Mix CD and my mum and dad got me tickets to see Little Mix in concert.
It was so lovely to see everyone at school but thankfully my friends know not to hug me as my back is really hurting (I get a lot of Crohn's pain in my back). My friends are amazing and been holding my hand throughout my journey. They understand so much and are very supportive, they even got involved in my sponsored walk and my fashion show to help raise money and awareness for Crohn's & Colitis UK. When I'm off school they send me loads of messages and gossip and they visit me after school.
My school is lovely they make sure when I need the toilet I am allowed to go at any time. I am first in the dinner queue and the dinner ladies know if my plate is left it's because I'm in the loo and they don't clear it. They keep my protein shakes nice and cold in the fridge. They looked after me very well on my residential event with all my medication! My teacher even came to visit me when I was in hospital. They respond to my mum's e-mails at 8pm! Although I'm not sure if that's a good thing as they are organising homework for me!
DAY 3
I did it! I did a second day of school. Although I'm in a lot of pain and feel so drained I'm proud of myself. I couldn't do it without my school and teachers being so lovely and kind I have a cushion to help with my back pain.
DAY 4
I just spent the day in bed. Most weekends I just rest but I get to practice painting nails and doing crafts which I really enjoy. My friends come round and I often paint their nails for them too. I have to rest on a weekend so I can get my energy levels back up for the week ahead at school.
DAY 5
Today is my birthday party. My mum wanted to cancel but I'm determined for it to go ahead. I was diagnosed in September 2013 and far too ill to celebrate my birthday. It was then I decided to set up my JustGiving Site - Evie's Way and asked for donations instead of presents.
Besides, all my friends were so excited they'd been talking about it for weeks. It was a karaoke party and I was going as Sabrina Carpenter. My friends were going as Taylor Swift, Nicki Minaj, Ariana Grande, Beyonce and so many other stars. I was having a great time and then half way through I realised my mum might have been right. I just want it to end and go home to bed.
DAY 6
I got up to go to school today I spoke to my mum and dad about how I'm feeling and that I'm getting worse and need to see my superhero. I called Dr Zamva (my consultant) my superhero as she was the only one who believed me when I was in so much pain. I felt she wrapped me in her arms and has never let go. She is always there looking after me.
I lasted the morning at school and had to come home (my mum left work to collect me). Dr Zamvar had rang to discuss my blood results and wanted to see me, I was relieved, I knew I had to see her I was in so much pain.
DAY 7
I couldn't make school today as I felt so poorly; as I walked into the hospital I was all ready to see my superhero. I knew deep down things would be better now. Dr Zamvar confirmed I was in a flare. I had the option of a NG Tube or steroids. 8 months ago I had an NG Tube and as it has been a while since I had been on steroids. So I opted for steroids, although I hate looking so bloated I know they will help me.
THINGS ABOUT ME:
- I take 8 medications a day and drink at least 2 to 3 protein drinks
- I sometimes wonder if it's a test because I get asked my date of birth and address so many times
- I constantly hear 'sharp scratch'
- My IBD team are now part of my family and I feel safe
- I wish I was normal; I wish I didn't have Crohn's or at least get a break!
- But I'm working with Child Friendly Leeds to make a difference for other children living with health difficulties
