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Fiona's story – living with lupus

Fiona, a young mum from Stirling, has been living with lupus for the past nine years.

Symptoms and diagnosis

Fiona first noticed signs of the condition when she had intense pain all over her body, and her joints were getting painful and stiff. The symptoms began with a sore ankle and then pain progressed to her shoulders.

She also had Raynaud’s phenomenon, which caused her hands and toes to be unusually white and painful. Doing everyday tasks, such as coming out of the shower, taking wet washing out of the machine and hanging it out outside, touching baby wipes and taking milk out of the fridge would trigger this symptom.

The Raynaud's phenomenon was a sign of an underlying conditon, and soon enough she was diagnosed with lupus. She felt relieved that she finally knew what she had, but it changed her life. She had to adjust the way she cared for her two young children and how she got around on a daily basis.

Making adjustments

Some Fiona she finds it hard to get in and out of the car or even push her youngest son in the pram. She says: “Planning is key to getting me through the day. I always plan ‘rest’ periods in case I get a flare-up and my day is disrupted."There's no way I will let it defeat me."

"Planning every step of my day around my condition can soon become exhausting and get me down, but I've accepted that I need to be positive and carry on for my family”.

Support

Fiona says: “I have a good network of support. My mum is really helpful and cleans the house from top to bottom some weekends as I find this difficult to manage. My husband is also very supportive.” 

As a speech and language therapist, Fiona's employer has also had to make changes to the way she works. Fiona says: “My managers are really understanding and have been supportive of the adaptations I’ve had to make. I used to drive everywhere for my job but now this has been reduced.

"The occupational health department have also assisted me with correct seating and making it for comfortable for me in my office”.

Self-help

The severity of Fiona's lupus has fluctuated over the years and she has to deal with joint and muscle pain all over her body that causes constant pain and significant levels of fatigue. She also has to constantly change treatments. One way she's learned to cope is to help herself as much as she can.

Fiona says: “I've visited my rheumatologist numerous times as I wanted to know how to manage my symptoms on a daily basis.  Alternative therapies, such as acupuncture, combined with steady exercise have allowed me some independence and a bit more control over the condition.

"There's no way I will let it defeat me."

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