My Disease is largely non-visible (on a good day) and I have chosen to capitalise on this fact in a Campaign at work called “This is Me”. The Campaign is targeted at awareness for non-visible disabilities including, mental health, hearing loss, mobility and many more disabilities. The message is simple “Don’t judge a book by its cover”. You don’t know what I am fighting today. Is my fatigue off the scale, are my fingers working, can I string a sentence together (the brain fog can be a real killer) or am I at my best? My video and that of many other Colleagues has been shared across our organisation and has helped other organisations to set up similar campaigns. The Campaign also led to me talking live on National Television during an Annual Conservative Party Conference!
Note from Cathy: Sallie is a wonderful friend I met through our work together for a non-profit organization. Although we live on different continents, I learn so much from Sallie and value her friendship. Sometimes I feel like she has packed me up in her suitcase and is giving me a “holiday” experience as she travels through Europe and shares her adventures on Facebook. I learn through these photos to stop and make memories. I also love that she doesn’t hesitate to post photos of her swollen feet for the world to see. She is definitely an example if living outside your blog/community.
Guest Blog – “This is Me”, Live TV and Rock Choir.
I am a 54 year old Woman with 2 beautiful grown up Daughters and 4 wonderful Grandchildren. I live in just about the centre of England in Northamptonshire and have been living in the same house for 36 years, since I married my Husband, Fred. For those of you quick at maths, you will realise that I was married at 18 and just in case you are wondering, my Daughters came along in the first 2 years.
I have had a varied and fairly successful career; the last 10 years having been spent in Banking.
So, why you may ask, am I writing a blog about Arthritis? Let’s back pedal to 4 years ago, I can distinctly remember the strange swellings on firstly my right wrist and pain. This was followed within weeks by pain in my left risk and more swelling. “Repetitive strain” I thought and made a mental note to use the iPAD less and take more breaks away from my Computer. At the time my Mum was very unwell and the symptoms didn’t feel a priority. Admittedly, travelling for work and attempting to lift a suitcase in to the overhead locker did move the problem up the agenda a little. It wasn’t however, until my feet became so swollen with the added sensation of walking on broken glass that I decided that I could no longer ignore the symptoms and took the first appointment to see a Nurse at our local surgery.
The Nurse very wisely instructed me to get on top of the pain with Paracetamol and suggested that in her view, I was demonstrating a form of Arthritis that needed blood tests to confirm. Within a few weeks, by which time Mum had sadly passed away, I was handed the diagnosis of Rheumatoid Arthritis and sent away to research both the Disease and the DMARDs I was told were needed to get on top of the chronic inflammation.
During this time of learning and adjusting I read various blogs and made connections with organisations that I believed could help me and some that I believed I could help. I have had the pleasure of working with Cathy Kramer (The Life and Adventures of Cateepoo), Lene Andersen (The Seated View) and Jessica Murphy with a common aim to make a difference to a few of the lives of those diagnosed with Inflammatory Arthritis.
Distraction is a wonderful technique. I wish I was better at Meditation or better at practising Meditation but so far, I haven’t mastered the technique. So, what do I do for distraction? I sing? Not very good, but I sing – I am an alto in a Rock Choir (I will leave you to look the organisation up and if you are based in the UK, why not sign up). I join a group of Women and Men every week to sing our hearts out – covering the likes of Don’t stop me now, Living on a Prayer, Something inside so strong, Budapest and many more – I LOVE IT! Highlights so far have been singing at Wembley Stadium to 85k people and had the great honour of backing Russell Watson when he performed at a local Theatre.
I can honestly say that the pain melts away while I sing. My Disease doesn’t define me but it has certainly brought opportunity and challenges in to my life and I am loving every moment.