“I was housebound, but now I have my life back.”

24 February 2020
Rebecca Wynne and her family.
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Rebecca Wynne is a 35-year-old architect living in Saffron Walden with her young family. Unlike most, she knows what it’s like to have arthritis as a child, university student and mother.

At the start of 2019 she had life-changing hip surgery after her condition left her housebound and, just a few months ago, received a new diagnosis.

She’s here to tell us her story.

“It was a total shock to the system.”

I went to see the doctor in the summer before secondary school, after noticing unusual swelling in my feet and hands. I was diagnosed very quickly with juvenile idiopathic arthritis (JIA) and put on methotrexate right away.

I remember I had to take small, yellow methotrexate pills, which gave me horrendous nausea and sickness all the time. To this day, I can’t eat sweetcorn because it reminds me of those pills. 

I started secondary school almost immediately after this. Anything that makes you stand out and feel different at that age is hard to come to terms with, and JIA undoubtedly made me feel that way.

I had to wear trainers instead of school shoes, for example. And I couldn’t do PE, so I’d just sit and watch the others do the classes.

It was demoralising to watch people around me doing things that I couldn’t. It made me feel isolated and detached from people, like nobody understood me. I think I’ve carried those feelings into adulthood.

“I discovered my resilience.”

When I got to university it really hit home how much harder life would be without my parents’ help. They’d taken responsibility of managing my pain when I was a child and, now, I was going to have to do it for myself.

Having the ‘normal’ university life was difficult because I wasn’t supposed to drink, and I felt more fatigued than ever. I had never appreciated how completely drained of energy it can make you feel. 

Some amazing things came out of uni, though. I met Tom, my amazing husband. I kick started my career as an architect. And, by learning how challenging life can be, I discovered my resilience.  

“Having family around helped occupy my mind with other things.”

I still have JIA today, but it’s evolved as I’ve gotten older. In that time, I’ve had some bad flare ups, the worst being just after my daughter, Lottie, was born.

The arthritis started attacking my hips, they rapidly degenerated, and I soon became housebound. This was the start of a very depressing period of my life.

You could hear the crunch of my hips grinding together by this point, so the pain was unbearable. My husband had to carry me up the stairs.

I dragged myself around the house using anything I could hold onto, just to take the weight off my legs and hips. I couldn’t even get into the car without help, so I rarely left the house.

The most heart-breaking part was that I couldn’t pick my children up. It was awful not being able to care for them in such a basic way.

But I got through it with the amazing support of Tom, my mum, and the rest of my family. Having people around all the time gave me things to focus on other than the pain.

“Being able to walk my children to school again is life changing.”

After breaking down in tears one day at a consultation, the doctor finally referred me to a surgeon. But, even then, I was looking at months of waiting. I respect the NHS hugely, but being told to wait so long while in that condition just felt cruel. I knew I would have to fight for help.

I spoke to three private surgeons and luckily found someone who was happy to operate on me. Everything happened very quickly from there.

Despite the surgical pain, I was able to stand up the morning after the surgery. It was just incredible to do this without feeling any arthritic pain. Now I’m able to walk my daughters to school, celebrate their birthdays and climb the stairs. I have my life back!

If you’re told to wait, my advice would be to push back and stick up for yourself. You don’t deserve to have your life withheld from you. 

“It’s still here, but the worst is gone.”

My main diagnoses today are osteoarthritis in my ankles and feet from inflammation damage, and spondyloarthritis (SA).

I recently found out about the SA diagnosis after having unusual backpain late last year. I went to see my rheumatologist about it and an MRI scan showed inflammation in my spine. This really scared me initially.

I thought the flare ups might attack my spine in the same way they attacked my hips, which would be even worse. My rheumatologist has been very reassuring, though. There aren’t any major risk factors at the moment and there’s a plan in place to treat it.

I’m so thankful the worst of it is gone, and that I’m back to caring for my children and continuing my career as an architect.

 

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