Making a difference

This is the story of a 10-year olds journey through the diagnosis of Arthritis.  Told in his own words.

01.01.2015 – New Year’s Day

Something’s Wrong

Today should have been a day full of celebration and excitement, yet the reality has been the opposite of what it should have been.

Waking up really excited, I leapt out of bed.  My knees felt so stiff and my heart was pounding:  something was not right.  I had been feeling bad for the past few days but just thought it would go away; I even told Mum but she’s been to busy with Christmas (like all Mums are) and kept telling me my aches would go away.

As the day went by, my heart refused to calm down and my knees became stiffer and stiffer until I had to lie down and rest.  Mum told me that she’d book an appointment, which I was pleased about – thinking about it, I really must be poorly because I normally hate going to the Doctors.

Hopefully the Calpol will help me sleep tonight.

17.04.15 – The day of the appointment.

The diagnosis.

It seems like such a long time ago when we all this started.

We drove for ages, or what seemed like ages, towards the special hospital (I think it was called “The NOC” but I’ so tired I can’t remember.

When we arrived, we booked in and we were sent to the child’s place:  it will take five hours to see me!  Hearing Mum chatting to Dad made me question what they were talking about; hopefully it wasn’t anything bad!

After a while, I started to read my book, “Wonder”, that’s what we are reading in school.  It reminded me of my friends and I thought how lucky I was not to be like August.

Two hours later, I had finished my reading book and had nothing else to do, so I started to play on my Mum’s phone to distract me from the way I was feeling.  My hands were sweaty, I had butterflies and my head had started to pound.

Elaine was my Consultant in the Orthopaedics department.  Being quite tall, she had to kneel to talk to me.  I remember noticing just how tall she was because her trouser legs looked super long and so did her clothes.  She reminded me of a person on Cbeebies who I used to watch when I was little, however, I have forgotten her name.

Mum looked a little nervous, which made me feel nervous too.  The questions kept coming and I struggled to answer them because there were so many and I couldn’t keep up.  Mum kept telling me she loved me and squeezed my hand really tight while she kept a really close eye on Elaine, probably to try and work out what was happening.

My parents and I waited outside for another three hours while they checked the results of all the tests:  heart scans, ultrasounds, blood tests and blood pressure.  No-one had said anything.  Finally, Elaine called us into the room … She showed us lots of x-rays and spoke in some words I didn’t understand.  Apparently, I had a thing called Arthritis.

16.06.2015 – The Future

Everything gets better

Despite a year of hell, things are slowly getting better, I still have good and bad days, definitely but most of them are good now.

The last bad one was the last day of SATS week:  Friday 15^th May.  Miss Price had promised that we’d be able to use the new ROMO Robots all afternoon and I was so excited!  SATS weeks had been stressful because I was so worried I’d feel sick or something (in the end I was really fine – through all the tests Miss Price kept on checking me which was funny!)

That Friday morning I woke up as normal and my heart sank because I knew I had another appointment and if it was bad I was going to miss the Robots.  Elaine had become like a friend and she had a lovely Irish person with her this time; Dad kept trying to make her laugh by talking in a terrible Irish accent which was a bit embarrassing!  As Elaine pushed the massive needle into my leg, I didn’t look but I knew it was massive because Dad said so.  The magic cream helped but it still really hurt and my eyes fuzzed with stinging tears.  Determined to get back to my class and the Romos, I told everyone I felt fine and so I went to school.

These days I just get on with things and they said it might go away in the future so hopefully it will.  Meanwhile I am carrying on as normal and I’m used to the needles and the injections Mum does for me every week (she’s been on at me for ages to write a diary so I might show her this sometime) Thanks to her I feel much better and I’m really looking forward to next year it should be good.

If I had to sum up the year, I would say that bad things have happened, but there are loads of good things still to come and over all I’ve definitely enjoyed this year probably more than any other.

My body may have let me down but my heart has never missed a beat.