At the start of December, I will be celebrating my 20th year since first dragging my “tin-man” body to the Scleroderma Unit at the Royal Free Hospital in London. September 2017. (Courtesy of Nicola Whitehill) The previous year, at the time of my…
At times, I can become really despondent when I see the changes that scleroderma has caused to my physical appearance. One of those times happened last weekend when I was trying to decide what to wear to a friend’s wedding. As usual, the normal kerfuffle occurred…
Systemic scleroderma has taught me many things; some useful and interesting, and others relating to the more difficult side of life. When the disease hit me, it was like a tornado wiped out every energy store I had, leaving me empty and depleted. Because of this,…
The skin is the largest organ in the body and is affected in most scleroderma patients. At the time of my diffuse scleroderma diagnosis in 1997, I had extremely tight skin across my chest, arms, hands, face, legs — all over my body. My…
Over the past week, I have been an angry little person. I contracted my husband’s head cold, and my immune system hasn’t coped well at all. Three weeks later, I remain exhausted. I’ve also had clinic appointments for my adrenal insufficiency, and doctors have concluded…
Life certainly is complicated, isn’t it? Over countless cups of tea with friends, I get to hear all about tricky mega-deals tangling big corporations, complex staffing issues, and legal wrangles with contracts. My friends have full and intricate working days and deal with perplexing problems at the…
Invisible Disabilities Week took place from Oct. 14-20. The Invisible Disabilities Association explains how those with invisible disabilities can be misunderstood: “People often ask us to define invisible disability. To define invisible disability in simple terms is a physical, mental or neurological condition that…
Since childhood, I have had a wonderful reoccurring dream in which I fly around a town on a magic carpet. The carpet arrives and hovers around knee height, waiting for me to climb aboard. I get on, lie on my stomach, and hold the edges while…
I want to write about a strange little topic today that some may find uncomfortable to read. I am sure it is a theme that those without a serious disease also can identify with, but I think that being chronically unwell can magnify the entire matter.
October is Raynaud’s Awareness Month. It is also the month when the beautiful autumnal shades over here in the U.K. remind me that my winter “full-time hibernation” is looming. My 50 shades of blue “party trick,” where my hands and feet change color…
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