Rheumatoid Awareness Week 2021: Julie's story

Written by Julie Harron, 13 September

Rheumatoid arthritis is a condition that causes pain, swelling and stiffness in the joints usually affecting hands, feet and wrists. This RA Awareness Week Julie Harron writes about her experience living with RA.

My diagnosis story

I have Osteoarthritis (diagnosed in 2008) and at the time when they were making the diagnosis for it, they had done various blood tests and scans on me, A new test had been developed and they trialled it. It showed early indications that I had Rheumatoid Arthritis even though I had no symptoms at that time. Fast forward 6 years later after my daughter was born I began experiencing pain and stiffness in my hands and feet. The mornings were the worst. I could barely lift my newborn and my 18 month old, never mind try and walk down the stairs. There were evenings my husband had to carry me up the stairs as I couldn't face the pain. My Rheumatologist who thankfully had arranged an appointment to see me after both of my pregnancies requested blood tests. They came back with overwhelming inflammation levels. It was then that a formal diagnosis was made and my journey to trying to find the correct meds to work for me began.

How R.A. affects my everyday life

I continue to have stiff hands and get extremely tired if I over do things. My feet continue to cause me daily pain too. These symptoms limit my driving ability. I can drive short, close to home distances but require family or friends to drive if I need to go on long journeys. I had to give up my much loved and perfect job because it was too physical and energetic for me. However I am able to work from home and now run my own illustration and stationery business. (Let's face it I need as many post it notes and reminders at the ready because R.A. causes me to forget things and my memory is shocking. Writing things down is the only way I can semi-manage to stay organised). This business definitely doesn't have the same income but it does give me a sense of purpose and worth again, something money cannot buy. I had started to fall into a cycle of self pity and doubted my ability as a mother, wife, colleague and friend. Being able to have a job where I can now take on as much or as little work as suits me based on my pain levels around that time is perfect. I am not worried about my colleagues having to pick up the slack on a day when I am too tired and sore. I don't have to travel to work which reserves some energy to be able to actually paint and illustrate. I still have days where I feel bad I can't do everything I want to, but thankfully they are a lot less now. My medication seems to be working which helps manage my pain levels and with the use of aids around my house I can do things I relied heavily on others being around to help me with. Keeping as much independence for me has been invaluable. I don't like the feeling of being an inconvenience to others so swallowing my pride and adding subtle aids to my home has been a game changer.

What living with R.A. means to me

It means I am having to continually (even 7 years later) set boundaries where I have to say 'no' a word that was alien to me prior to my diagnosis. It means I can't do some of the things I would love to do, but it does mean I have become a lot more creative and imaginative in thinking up low energetic activities to do with my friends and family so I can still be involved. It means my life is daily pain and fatigue and deciding what I want to use my energy levels up doing each week but as a result I have learnt to pace myself and have a lot more empathy for others in pain. Living with R.A. means I have been forced to grow an inner strength I didn't know I needed to get through and I am pleased to say I am becoming a stronger person because of it. It's funny how weakness helps you become strong isn't it?

Image source: Towfiqu Barbhuiya, Unsplash

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