I first saw my GP after symptoms had begun limiting my daily life. I had swollen fingers, hands, knees and feet, difficulty walking, pain and stiffness. My hands looked like they had been used to punch someone, and I couldn’t straighten or grip things. I was also experiencing exhaustion and feeling constantly tired. Over a 10 month period, I visited my GP surgery 7-8 times, but was told to take ibuprofen, or my symptoms dismissed as psychosomatic, despite physical evidence of swelling – it was very frustrating.
I eventually got a rheumatology referral and was diagnosed with inflammatory arthritis.
It was good to receive the acknowledgement that it was something real, but facing the prospect of interventions and treatments and not knowing what to expect was quite stressful. Working with my rheumatologist, we discussed my situation and treatment options, balancing benefits with side-effects. I am trying to keep an open mind about other treatment options at this stage.
Following a healthy lifestyle, I try to keep a steady weight and to cook from scratch, incorporating lots of vegetables and nuts to ensure my vegan diet is as healthy as possible, as I know this is an important part of managing my condition.
As a working, single parent, my time is precious. Exhaustion makes it hard for me to motivate myself to do exercise beyond keeping the house tidy and shopping. Although I walk to and from work when I can. My son, aged 12, plays an important role as my carer (a role officially recognised which allows him some leeway at school) and he has really shone in this and enjoys the responsibility. As well as helping at home, he is sympathetic when “mum just needs a rest”. This role has really deepened the bond between us.
I consider myself lucky that my specialist skills mean my employers are keen to ensure I had the flexibility to do my job to the best of my ability and they have been very accommodating. I can work remotely from home, with an ergonomic chair, keyboard, track pad mouse alternative and footrest.
I am pleased that Flexible Working Regulations have made flexible working more acceptable to people in all sorts of situations, such as parenting, caring or for those with long-term health conditions. But it doesn’t take away the feeling of vulnerability if you have to take more sick days or time off than other workers.
Employers don’t always understand the flexibility you need having a condition such as inflammatory arthritis that waxes and wanes.
Getting out and socialising can be quite exhausting, so I enjoy joining Arthritis Action online groups to meet others in a similar situation to myself, without needing to leave the house.
I am content with my current set up which allows me to maintain as normal life as possible and I am happy living life day-to-day, I couldn’t do this without both the support of my employer and the fantastic carer I have in my son.
Sophie spoke to Marc Williams about parenting with arthritis, in the Arthritis Action Podcast.
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