The Beesley Buzz: March 2020

Wednesday 18th March 2020 is WORD Day which stands for World yOung Rheumatic Diseases day. Rheumatic diseases involve inflammation, most often related to joints but also sometimes tendons, ligaments, muscles and even organs.

Juvenile Idiopathic Arthritis (JIA) is a rheumatic disease affecting children and young people. Most regular readers of this blog will know that our youngest daughter, Trinity, has had the condition since the age of 2. She's now nearly 8. We wrote a blogpost on WORD Day 2019 last year and regularly write about what life is like for a child with JIA.

This year, I'm going to share something a little bit different for WORD Day. I was recently contacted by a university student, Niamh, who is studying journalism. She wanted to write one of her university assignments to help raise awareness of JIA by sharing the story of a child with the condition. She interviewed me by telephone and wrote the piece in first person narrative, as if I was telling the story. I love how she has written both mine and Trinity's diagnosis stories intertwined, comparing our JIA journeys. With Niamh's permission, I am sharing the powerful piece here:

"But when will it get better?" by Niamh Adams

Juvenile Idiopathic Arthritis (JIA) affects one in a thousand children. Unlike the Arthritis that your Nan has, JIA is an autoimmune condition where the body attacks the joints causing pain and swelling. This is the story of Rebecca Beesley (42) and her daughter Trinity (7) who are desperately trying to raise awareness for this condition which is not talked about enough.

Naturally, you want to protect your children and when something goes wrong you want to take all their pain away. When my daughter, Trinity, was diagnosed with JIA I first felt relief, we knew what we were fighting but then came an overwhelming sense of guilt - is she in pain because of me?

I was diagnosed with JIA at age 11. My daughter, Trinity was diagnosed at just age two. I never thought or even understood that it could be genetic.

The days both our conditions came to light weren’t too dissimilar, we were both just children enjoying our childhoods, apparently with severe growing pains:

The day I couldn’t move, the day I just sat on my school hall floor in agony, the day all my classmates and friends filed out of the harvest assembly metaphorically foreshadowing what was yet to come. At that moment all I could do was cry as my mum rushed towards me. That was my first stay in the hospital for what doctors concluded was just growing pains.

I was discharged from hospital with my growing pains: barely able to walk, basically housebound and unable to go to school. My mum had to hire a wheelchair for me, it was the worst growing pains ever, a deep twisting pain inside my hip.

When Trinity was two and a half and was walking, she started saying “Mummy, sore toes” and I remember thinking why do her toes hurt? We took her to see our GP who told us it was growing pains. A similar story to what I was told as a child.

It was Christmas, my eldest son fell on Trinity’s ankle and it suddenly blew up like a balloon and she was crying in pain. We went straight to A&E however there was no sign of any fracture on her X-ray. Nevertheless, they put her leg in a plaster cast.

While it took me the best part of a few years to get a diagnosis, Trinity, thank goodness managed to get diagnosed fairly quickly:

I had my second hospital stay, now aged eleven, in the following year except this time it was a lot longer. I had all the tests - many of them inflicting horrible pain onto me; my leg was put in traction and I had a hip biopsy. When they had ruled everything else out, I eventually saw a rheumatologist who said, “you have Juvenile Idiopathic Arthritis.” Three words that changed the whole course of my life.

The one thing I wanted to know was “when will it get better?” I just wanted my childhood back, I broke down. I thought why me? Why is this happening to me?

I arrived home soon after I got that news and I just burst into tears the ceilings were so low in comparison to the old Victorian hospital that I had stayed in for the past month. My friends no longer came to see me I was out of sight so therefore out of mind. Like they filed out of assembly that very first day they had forgotten about me.

With Trinity we went to get her plaster cast taken off, yet her leg was now completely stiff, and she was still in unbelievable pain, pain no toddler should ever have to feel. Therefore, we met with a paediatrician, she said: “I think we are looking at JIA.” Not again I thought. How can my sweet little girl be going through the same thing as I am? She then sent an urgent referral to Great Ormond Street Children’s Hospital.

Within a matter of weeks, we were sat in the waiting room of Great Ormond Street Children’s hospital. Sat there, I remember thinking what if this isn’t JIA, then what? Imagine hoping your child has a long-term condition just so you have an answer, no parent should ever have to be in that position. She was officially diagnosed with Juvenile Idiopathic Arthritis - three words that will change the course of her entire life. She started on horrible medication that broke my heart, seeing a young child having to take eleven medications a day just so they weren’t in as severe pain, is awful.

After diagnosis comes physio, medication and lots of hard work to try and get your body to the place it was before Arthritis. While mine revolved around physiotherapy, Trinity had to battle with getting weekly injections:

I remember getting in the shower, sometime after my diagnosis and staring down at my leg, it was a stick, all the muscle had withered away. There was nothing there but skin and bone. That gave me the wakeup call that I needed to do my physio exercises, I needed to become strong again!

My dad, as he described it, was being "cruel to be kind". He would take my crutches away and tell me “do one step without your crutches.” I would plead with him saying “I can’t, I can’t.” Nevertheless, I would. The next day he would make me do two steps and so on. Until I grew in strength and slowly re-learnt to walk. Those two years passed by and I did get better. I still struggled but it was better.

Trinity was so good with her injections, “Daddy, I am ready for my injection” she would exclaim but after a year she started getting anxiety sickness. It is horrible having to stick a needle into my daughter especially when she hates it so much. I can now relate to my father and his way of being cruel to be kind as horrible and painful as it is, I know the injection will help her in the long run and make her better.

These days JIA is just part of our lives. Trinity is now seven years old and me 42.

I just get on with my life and don’t let JIA define it. I do things bit by bit, slower than your average person but I have accepted that is just the way it has to be.

Trinity has regular blood tests and is still on medication, but she can live a full life. She attends school and on the whole, she is a very happy and normal seven-year-old girl. I am thankful that JIA doesn’t control her childhood in the way it robbed me of mine.

I hope she will be able to have a normal life and I hope it will never stop her doing what she wants to do. I hope she comes off all the medication one day and goes into remission. I know Trinity is a strong girl and JIA won’t stop her doing anything she wants to do. Finally, I want to raise awareness, so more research is done, a cure is found, and children don’t ever have to feel isolated with Arthritis.

Please consider sharing this blogpost, or any of the awareness raising images and posts on Juvenile Arthritis Research's social media channels who will be joining in the #WORDday2020 conversation in the UK. Help us get the word out that children and young people get arthritis too!

Pages

"Once you choose hope, anything is possible"

"But when will it get better?" WORD Day 2020

"But when will it get better?" by Niamh Adams

February 2020 unboxing