Emma Walker, 37, was diagnosed with rheumatoid arthritis two years ago. A whisky specialist for a drinks company, she lives with her long-term partner. Here she shares her story
What type of arthritis do you have?
When were you diagnosed?
I started getting symptoms in July 2013, and had an official diagnosis November 2013.
Can you share a little about your treatment journey?
I started on Paracetamol, Naproxen and Codeine in September 2013 to manage symptoms, before starting on Prednisolone in December 2013, alongside Hydroxychloroquine (taken twice a day). I started taking Methotrexate tablets (15 mg, weekly) a week after this, with folic acid once a week – this was increased to 25 mg after a couple of months to better manage my RA symptoms. Folic acid was increased to six days a week, to manage Methotrexate side effects (mouth ulcers, sore stomach).
I also tried Metoclopramide, but I had to change to Methotrexate injections in June 2014, due to these side effects (1 month on 20 mg then up to 25 mg). Sulfasalazine was added in October 2015 – increased pain in hand & wrists, reduced grip strength; 500 mg tablets, built up to two on a morning and two on an evening, increasing to three after six months. I still have some slight wrist / elbow / knuckle pain, and have a GP review next week.
For the first year I was regularly seeing the rheumatology nurses about every six weeks – they administered steroid injections when needed, and managed the change to Methotrexate injections. I initially saw a physiotherapist to regain movement and flexibility in my feet, hands, elbows and shoulders, and an occupational therapist to advise on how to handle the condition day to day.
I have support from orthotics – receiving insoles for work boots so that I could continue to work. I have also attended the clinical podiatrist for assessment with painful feet, when no active inflammation or damage was shown on ultrasound in 2014. I see my Rheumatologist annually for check- ups / assessments, and have been supporting the SERA study at Edinburgh’s Western General Hospital.
What is the best piece of advice you have received?
When you’re not feeling great, take time to look after yourself – don’t feel bad about needing time to recover.
What helps you to feel better, physically and mentally, on a sore day?
Hot bath, power nap on the couch, Netflix boxset!
What do you love to do on an energy day?
Swimming, walking, wandering between a couple of pubs.
Which tasks drain you?
I struggle to concentrate over long periods of time, which can be difficult managing work.
What is your best practical tip?
I have a nice ‘shoe box’ for storing medication, so I can see when things are running low. I put out the day’s medication on a morning as I have a terrible memory on an evening! A jar and bottle opener is a must at work – I need to open a lot of sample bottles! And take a break from repetitive tasks.
How else do you look after yourself?
I try to exercise but it’s difficult after a day at work. My boyfriend does most of the cooking, and understands if I’m struggling to do much housework (he does a lot!). We also try to make sure to do fun things; I just need to temper expectations! Don’t let this define who you are.
Do you have any advice for someone who is newly diagnosed?
Talk to your specialist nurse, GP & rheumatologist. Don’t be scared to ask questions, they’re never stupid questions! You need to understand what decisions are being made and why. Learn that sometimes it will take you more time to do things and don’t beat yourself up over it.
What message would you share with the world about young people with a chronic illness?
RA isn’t something only old people get. Just because you can’t see someone’s condition doesn’t mean it’s not real. This is a chronic condition – people don’t become magically cured with copper bracelets. I’ve been very lucky – everyone I know has been very understanding or have experience of this disease.