“I have a strong belief that arthritis shouldn’t stop me”

Leoni allen standing and sitting outside.

Critical Care Nurse, Leoni Allen was diagnosed with rheumatoid arthritis ten years ago at the age of 20. She tells us about her fluctuating journey through flares and remission, how her condition has impacted her life at home and at work and how she manages the bad days with the help of a strong support network.

Arthritis came completely out of the blue

I had really bad flu and then, all of a sudden, I had swelling in my hands. I went about 6 or 7 times to my GP, and saw different doctors on each visit, each one suggested something different, like stress or carpal tunnel syndrome. I was sent away with pain killers.

It wasn’t until one doctor who thought I had lupus, prompted my bloods to be sent away, which then resulted in my referral to rheumatology. From there I was diagnosed with rheumatoid arthritis and started on medication very quickly.

At the time I didn’t really understand what was happening and hadn’t even realised you could get arthritis at such a young age. Nobody in my family has arthritis so it was a big shock for everyone.

Despite this, my close family were a huge support and came along to my first rheumatology appointment with lots of questions. We all did a lot of reading to find out as much as we could, and I have a much better understanding now.

I have good weeks and bad weeks

Sometimes I can be completely fine and if you looked at me now you wouldn’t think I had arthritis because I don’t have any physical deformities. But other days I feel awful, and it’s hard to explain this change to people.

Bad days vary for me, sometimes I can’t get out of bed. The main areas affected are my hands and hips, so it’ll be difficult to walk and do daily tasks if they’re flaring. Things like cooking, doing my hair, having a shower, I won’t be able to do on my own if my hands are bad.

I have been struggling at work too. I work as a nurse in intensive care doing 13-hour shifts, which can be very full on. After a big stretch of shifts, especially night shifts, it can make me very unwell.

I really love my job though and have recently had a promotion, so I don’t want to have to stop what I’m doing.

I didn't realise my rights as an employee at first, so I just pushed myself and it made me feel worse. But now I’ve got in touch with HR and Occupational Health and they’ve supported me thoroughly. We’re looking at reduced hours and a role where I’m on my feet less. So, for anyone struggling at work, there is support for you.

I live alone and this can be daunting

I started renting and living independently when I was 24 and then saved for my own place. There’s a lot of pressure and responsibility that come with having your own house. I worry about money and how I’d cope if I couldn’t work.

I have friends that live locally who come and help me when I need it, they’re only 5 minutes away and have a key to let themselves in if I’m having a particularly bad day. And my parents are a half an hour drive, so they come down occasionally too.

It’s so important to explain your condition and help people to understand your needs.

On a bad day I pace myself as much possible

Sometimes I’ll stay upstairs and just really take my time doing things.

I’ve tried various different treatments, and there was a period where I went into remission, came off all medication and was doing really well. But all symptoms started again at the beginning of this year.

At the moment I’ve had to come off methotrexate due to the side effects and I have an appointment to discuss moving me onto Humira. It can be nerve-wracking changing medication, but I try to find out as much as I can to make informed decisions.

I also try to stay active and still go out and have a good time, but it just depends on how I’m feeling. It’s often the little things I need help with – I’ll ask my friend to drive if I’m having a bad hand day.

I have all sorts of aids and adaptations to help around the house too. I use resting splints and have small finger splints too when just certain finger joints are playing up. I use special jar openers, which have really helped. I know these tools are there if I need them.

A good support network has been the most important thing

It’s really important to know that help is out there. Push your GP to refer you. It was only after my referral, that I received support from rheumatology specialist nurses who explained everything.
Occupational therapists were also instrumental in helping with support aids. Unfortunately, when I was diagnosed there wasn’t much support around for young people.

I believe you can still do all the things you want to do, if you use the help available to you – you can still work, go out, or go on holiday if you make sure to ask for help when you need it.

And don’t feel embarrassed about wearing a splint or using a stick. I think this is especially important when you’re diagnosed at a young age. You know your body best, so make sure you’re listening to it and looking after it as best you can.

Since seeing the Versus Arthritis advert, I looked at the website and it opened the flood gates to all the support out there. Mostly it allowed me to see others share my same experience! I've spoken to people on social media and it’s been wonderful not feeling like it’s just me going through it alone. I wish this was around back when I was diagnosed.

I’ve only learnt to talk about my condition the last couple of months. It can be really scary, but there’s support out there.

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