My “life” as a carer of someone with Lupus

A bit of background summary to get us going;

We started down this path when we were on our honeymoon back in 1985, no-one had heard of Lupus back then, we were staying in Orlando relaxing by the pool, visiting Disneyworld and Epcot. Then it struck out of the blue, Julie developed a sunburn that blistered and other smaller symptoms like a bit of joint pain and tiredness. The thing we were focusing on was the blisters caused by the rash. When we returned to the UK our GP sent us to a “specialist” and he diagnosed Polymorphic Light Eruption (PLE), she was put on Plaquenil and Steroids, which eventually helped with the rash but this had already killed off some of her pigmentation. Further down the line she was diagnosed with Discoid Lupus due to other symptoms developing. At this point Julie was still working and feeling fit and healthy apart from “minor” irritations. Little did we know what was to come down the line. Fast forward to 1998 and our arrival as new immigrants down under, Julie arrived first and stayed with her sister, travelling to work by bus, train and foot. During this period she was taken quite ill and admitted to hospital, where she was further diagnosed with Systemic Lupus, and our lives began to change now that we had to control the wolf within.

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