Tilly Moore's blog

Age 14
Tilly making adding paper poppies to a display for rememberance day that reads we will remember.

May 2019

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Hi I’m Tilly, I’m 14 and I’m from Dover. For me, it all started in the summer of 2011 when I first showed signs of having arthritis.

My joints were swollen and tight, I couldn’t grip with my hands and I found it very hard to walk. I had to keep stopping as I was in so much pain. My mum took me to the doctors and then to our local hospital but they didn’t know what was up. So they sent us to the children’s hospital in Canterbury and after loads of tests, I was finally diagnosed with juvenile idiopathic arthritis (JIA).

I was put on a pen injection, which my mum had to give me once a week at home. I hated this injection so much because it used to sting me and it made a loud click, which made me jump. It also made me have anxiety as when the pen was out of the fridge I knew that within that hour I had to have the injection. After a while of having these, I developed needle phobia and I needed to change to a push injection. I started to do the injections myself because I had heard other children my age and younger were doing their own, so I wanted to be able to do the same and it didn’t hurt as much which was the good bit.

Tilly Moore at Evelina London having treatment for her arthritis.

After a while though, I started to flare up which told us the meds had stopped working. I’d tried lots of different medications and the doctor said we needed more specialist treatment so I got referred to Evelina London for infusions, which meant I needed to come into hospital. I started new meds just before Christmas 2018, and they’re still working!

I still to this day don’t like having the cannula put in and I have magic cream so I can’t feel them putting it in. Ariana (my nurse) said that was fine if that’s what I’m comfortable with. We do talk about maybe trying without the cream, but I get so worked up and upset that the better option for now is to use the magic cream. We put this on while on the train to London as we live in Dover, which saves us a little bit of time as the cream has already done its job while me and my mum watch out the window and see what’s new each time we travel up to London. We come for my infusion every 4 weeks and the train ride takes about 2 hours.

The ward I'm on is Snow Fox  and they always do their best to make me feel safe and welcome, I love them all. Thanks to Patrick, who I like to joke about with, Ariana, who makes me feel safe and OK with needles, and Rachel who is a kind young lady and always smiling- happy faces are what I like to see! They are my main nurses and treat me amazingly while I'm there.

Michelle is the play lady who always has loads to offer and makes sure I have something to do. She asked me if I would like to make a poppy for their poppy wall for Remembrance Day in November last year as I was up at an appointment. I got to put the very last poppy on the wall, it made my day to be involved with something so special.

Tilly on a piece of climbing equipment.

I have had arthritis for 7 years now and I will probably still have for years to come. I like to swim just to keep active, as my joints are not as painful when I’m in the water. Getting out of the pool hurts, but there’s a brand new pool not far from my house with walk-in steps, which helps me so much to feel kind of normal.

I do get upset sometimes because I can’t do the things other people my age do, but when the meds are working I can join in more. Just the other day I took part in Clip’ n’ Climb with my family. My body hurt afterwards but I’m glad I gave it a go. I do join in with P.E. at school and like to push myself. Arthritis doesn’t like moving bodies but I’m meant to be the boss of my body, not this arthritis. 

My advice to anyone who has arthritis would be keep strong, don’t try and hide how you feel and always talk to people for help.

I am on an arthritis page on Facebook and stay active. If you wake up stiff, a warm bath helps get you going. Sometimes I find it hard to get in and out the bath but I have a seat to use and my mum helps me even though I’m too big for her to lift now I’m 14, but she helps because she loves me.

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This is my story about my life with arthritis. Keep smiling people!

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