ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Meet The 29-Year-Old Woman Who's Allergic To The World
Friday 16 January 2015
Meet the 29-year-old woman who’s allergic to the world
AT 26 years old, Crystal Goodwin suddenly developed a rare and devastating disease.
It left her allergic to well, almost everything.
If she puts one foot wrong, Crystal could be dead within minutes.
Now 29, the young woman from Maine is desperate to move out of her mother’s home and have a place of her own.
But the outside world is riddled with dangers.
Among other things, Crystal is allergic to paper, plastics, soap, detergent, pain medication, scents, dust, lip balm, nuts, lollies, air fresheners, antibiotics, powders, adhesives, dairy, gluten and food colourings (specifically red and blue).
She subsists on fresh salads, organic chicken and water. Her histamine allergy makes even leftovers a no-go.
She wears a mask outdoors, and has to completely cover up in sunlight.
“We never know what’s going to trigger her,” says her mother, Susan.
The auto-immune disease Crystal suffers from, mast cell activation syndrome, has no known cure. Doctors say she may have it for the rest of her life, another year, or could go into remission tomorrow — it’s impossible to know.
“I don’t know if there’s ever a time I don’t feel anxious,” Crystal says in a video by Narratively. “Any minute something could happen. I don’t know if I ever truly relax”.
Before her diagnosis, Crystal was constantly busy, working 50 or 60 hours a week with the Opportunity Alliance Family Center in South Portland.
Then one day, she was rushed to the emergency room with hives, a swollen tongue, difficulty breathing, fainting, burning in her extremities and fatigue, the Sentry reported.
It was the first of a stream of hospital visits that has continued ever since, with Crystal often forced to call an ambulance after something as simple as drinking Gatorade.
“I define myself by my job, I define myself by my social life, I define myself by the things I like to do outside of the house and those were all gone, everything was gone,” she says.
These days, she says, “Every day I have to find a reason to get up”.
For a while, Crystal sank into depression. Her mother is still afraid she might return to “that mode where she says, ‘Stop, I’m all done, I don’t want it any more’.”
But as she enters her thirties, Crystal is reclaiming control over her life.
She exercises regularly, to maintain bone density and increase her lung capacity.
She is determined to move into her own apartment, despite the grave risks, and the fact she will have to wear a mask in the hallways.
The chemicals from the laundry room pose a serious danger, as does the fact that people sometimes sneak cigarettes on the stairwell.
If smoke came under her door, she admits: “I would probably die”.
Crystal is on 22 medications and sees 12 doctors on a regular basis.
One day, her body could become immune to the drugs that are helping her.
And yet, she sees hope in the hand fate has dealt her.
“I feel like I’m lucky, which sounds weird,” she says. “Even though I’m not living the life that I wanted, I’m still living.
“Most people will go through their whole lives not going through what I’ve gone through — like becoming healthier emotionally and spiritually — so I feel lucky.”
The above originally appeared here.
blog comments powered by Disqus