Going back to the very early years, Carol was always sick as a child and her parents were told that she had to consume goats’ milk, and unable to have any cow’s milk products. It wasn’t until age 11 when she turned a corner, but this was short lived when she was hospitalised as a teenager with a fatigue illness, which she can’t recall being told the name of. This was another mystery case, which they administer medication to help her through it and was sent on her way.
From then on, she just continued living life, met her now husband and had two children. When she was 33 years old, she was plagued by another mystery illness, causing the doctors to perform multiple tests, with no results. One specialist even tested for Polio, which she did not have, and after this, he was no longer interested in helping her determine the cause of her constant illness.
Due to work, the family relocated to Perth (for her husband’s job) and she had to visit a new GP. This doctor was her saving grace as he was willing to investigate her ailments, and work with her to figure out what was going on. Meanwhile at this time, there was research coming out that highlighted the kinds of illnesses she was presenting with, so they worked together to try and figure out what was going on.
After two years, they moved back to Bendigo, and the new doctor was much the same as many before and advised he couldn’t help her. He did suggest that she visited another physician who was having some success with Vitamin C injections. So, off Carol went to this doctor. During her time seeing this doctor, she was given Vitamin C sessions three times a week, and it was the only thing that gave her enough energy to continue to fight.
Around this time, Carol was diagnosed with Fibromyalgia, a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory, and mood issues. This was followed by other medical illnesses that she must continually fight.
After returning from a trip to China in 2018, it was revealed that she contracted a ‘bug’, which she was able to ‘kill’ with medication, however since then she has not been able to fix her system, and has been troubled with chronic gut issues, and pancreas that doesn’t produce enough enzymes.
In 2020, Carol went through a very traumatic brain disease. She contracted Bacteria Myocardial, which entered through her lungs, got into the blood stream, and produced multiple abscesses on the brain. She was told, she was one of the rare people to survive this kind of illness. It was also found during this time that her body does not produce enough white blood cells – confirming her immunodeficiency diagnosis of CVID.
After this, she completed genetic testing, which provided information that she had likely has this condition since birth, and it is contributing to her other ailments.
Throughout her life, she has had many food intolerances, and now is battling constant digestive and bowel issues, which impact her everyday life.
Carol is glad that although her Gastroenterologist was not interested in investigating the connection between her gut problems and her immunodeficiency diagnosis, her current immunologist is going to go down this path and determine if there is a connection.
To help manage her immunodeficiency, Carol receives Intravenous immunoglobulin (IVIG) injections every four weeks.
Although everyday is different, Carol still enjoys gardening as much as she can. The main challenge for her is ensuring that she does her own form of mental planning so that she can tackle every day. To do this, Carol has completed the Pain Management course and find the tools and lessons learnt here to be lifechanging. Each day, she wakes up and makes her bed, with the aim of completing at least two tasks for the day, sometimes these are very small jobs (depending on how unwell she is) to larger things. The mental gymnastics she plays with aiming to get things done is very important and has improved her life.
Carol is aware that she can not overreach each day, otherwise she is impacted both mentally and physically the subsequent days. The most important thing is her mental and physical health, and she continues to fight for the best one possible.
Although she has now found a community of people living with an immunodeficiency, Carol does wish that she has the support and knowledge of IDFA earlier in her life.