Like most people, we had no idea what Lupus was until it affected someone we loved dearly. This month is Lupus Awareness Month and on the 10th of May, it’s World Lupus Day! We really wanted to share a blog which would highlight why donations to the Hibbs Lupus Trust means so much to us, and why we will “Go Purple” in honour of our own Lupus Warrior!!
Danni is our daughter, she has had a rollercoaster ride with her Lupus diagnosis, like many others she had doctors say her rashes were ringworm or fungal infections and just generally made to feel like a nuisance. It was bad enough that she was 21 and felt so ill, but she also felt like she was some contagious monster that needed to be kept away from the world.
After a lot of antibiotics, antifungal drugs (which caused her liver issues) and copious amounts of creams and potions, she was finally seen by a GP who had studied Dermatology. He wasn’t afraid to get right up close and check it out with a magnifying glass. He got her an emergency dermatology referral and on her first appointment with Dr Lochee-Bayne an amazing specialist with true passion for what she did, she was having a skin biopsy, and being diagnosed with SCLE – Subacute Cutaneous Lupus Erythematosus.
Since then, it has progressed to an SLE – Systemic Lupus Erythematosus which has meant she’s at risk of organ involvement, luckily her treatments have kept it stable enough for them not to be affected. She’s had facial and body rashes which have been terribly painful, vitamin D and B12 deficiencies, Lupus chilblains, hair loss, weight gain and some pretty nasty flare ups that have left her with no energy at all. Yet she continues to live her life the best she can!
Christine Miserandino is the creator of the “Spoon Theory” which is something that really helped us to understand what Danni was going through. Christine thought this idea up when trying to help her friend understand what it is like to live with Lupus, and how it affects a person on a daily basis. She used spoons to represent Lupus, and to show that by doing simple tasks, you’d lose spoons… symbolising your energy levels depleting. It’s now become a great metaphor for not only Lupus but other chronic illnesses and disabilities. It’s a brilliant way to help family and friends understand your condition and how it affects you.
Below is a video of Christine reading out “The Spoon Theory” whilst giving the keynote speech at the September 11, 2010 Lupus Symposium.
Christine said “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.” I resonate so much with her words. I, myself have Fibromyalgia which is a disorder characterised by widespread musculoskeletal pain and fatigue. The cause is still unknown; however, studies seem to think it’s linked to trauma and autoimmune issues. I tend to live by the spoon theory too, much like my daughter who has Lupus and Fibromyalgia. We always rest up to gather our spoons ready for an event whereby we know will take a lot out of us like a wedding or a full-on day at work.
It’s not been easy, and although she goes through all of the flares and additional illnesses that have come along for the ride, she smiles and continues to keep plodding on, a day at a time. All of this whilst holding down a full time job and at one point full time caring in her spare time for her partner.
With this in mind, we previously created a spoon charm, to ensure all people with Lupus have an extra spoon whenever they need it. This year, it has evolved into a keyring (photo’s to be added soon), alongside a purple bracelet and set of earrings. These will be available to purchase in our shop or from within our treatment room, prices will vary, however, the proceeds will go onto the Hibbs Lupus Trust donation page.
For this World Lupus Day on the 10th of May, we are taking part in the Hibbs Lupus Trust – “Go Purple” event. We will be turning our uniforms purple in support of Lupus. We’ll donate ourselves but would love to bump it up with the sales of these items and any little donations our lovely clients could manage would be so greatly appreciated. Doesn’t matter if it’s only small, even 50p will make a difference and help raise awareness and to help researchers find a much-needed cure.
Still unsure what Lupus even is? Head to Lupus UK to read up yourself. It’s such a complex illness that masks as many others and a lot of patients wait years for diagnosis and treatments. Our daughter continues to do everything in her power to live her best life, despite this awful condition and we are so very proud of her.