Tamjin has a hard time sitting and is very sensitive to light.Photo / Katie Harris
Tamzin Rumsey is having a hard time speaking for this interview.
Too much effort to sit in a chair, the interview leans halfway through her head
On her back, hitting a reclining chair, she is attached to an oxygen concentrator.
At the end of last year, she began to collapse and was shocked.
Today she has a hard time doing something, is very sensitive to light, is in a permanently dark room, is too tired to see her friends, and needs energy she doesn’t have to walk. , Often need to crawl on the toilet.
“All my friends are doing things and have succeeded in pursuing their lives. I … it’s not difficult.”
The 19-year-old is one of an estimated 25,000 kiwis fighting chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME).
This is a condition that is more commonly affected by women and is characterized by severe fatigue, difficulty concentrating, akinesia, and memory problems.
Her beloved parents, Dave and Glennie, initially didn’t know what to do with Tamjin’s symptoms and initially put it on a recent diagnosis of celiac disease or fatigue after graduating from college.
However, looking back on the journey since then, neither can hold back tears.
In high school, Tamjin was a cheerleader, surf life saver, circus performer, and netball center.
However, when he had a glandular fever at the age of 15, it stopped. They thought she had almost recovered, but the illness recurred and bothered her.
“I wasn’t really the same, but like doing outdoor education, I went back to it [education], And I used to play cards and rock climbing all the time. “
She was happy and healthy and was studying at the University of Victoria last year when she first noticed something was wrong.
It started with “Crazy Brain Fog”. I stopped by the class, forgot where she was heading, and at some point needed the help of a stranger to get home from the lecture.
“It was really scary. I went to the doctor and explained all this, and they were like,” What do you want me to do about it? Do you want me to send you to the hospital or something? ” rice field.
In a statement, the Ministry of Health told Herald on Sunday that conditions such as CFS are difficult for patients because there are no specific treatments or treatments.
“The focus of treatment is on the management of symptoms, which is best coordinated through a general practitioner.
“Individual DHBs may also have local pathways to support diagnosis and treatment in that area.”
As her health swirled further, Tamjin called her mother and said she thought she had a brain tumor because of what was happening to her.
That year she collapsed twice.
This is known as a “freeze” or “crash” where the body just stops.
“We went to A & E, and he [the doctor] He said, “Oh, it’s in your head, it’s just a psychological reaction.” And I seemed to “make sense in that sense.” “
As Tamjin’s physical health burst, so did her mental health, but the medicines to help her were ineffective for her and she had to quit.
The energy clashes she experienced were “very scary,” Glenys says, they were “incredible.”
“When that’s happening, I don’t know why. If I leave Tamjin paralyzed, it’s okay, but the pain begins in different parts of her body and it moves.” Grennie says.
Dave says he had a lot of sadness about his daughter’s health problems because he lost some of his healthy children.
“It’s not easy to see her experiencing this.”
In addition to stress, she is trying to get government help to help cover the cost of her condition.
He says Tamjin must enjoy the benefits of job seekers and must show up every month and prove ill to renew every few months.
“Every time it happens, it’s stress and a spiritual effort. Heaven helps anyone trying to do this without support. Anyone trying to live this alone,” Dave said. Says.
If the patient is lucky, he says, with the permission of the doctor, some people can take advantage of the supported living allowances. They are waiting to hear if Tamjin has approved this.
Kay Reed, general manager of client services at the Ministry of Social Development, told Herald on Sunday that there is a variety of support available for people with health conditions or disabilities, including ME / CFS.
“Giving benefits for health and disability reasons will be based on advice from their doctors who provide medical certificates that advise how long they cannot work as a result of their medical condition.”
Changes to this system will also be announced in Budget 2021, starting January 31, next year, with a new medical certificate process that assesses people’s work abilities and obligations if their health, injury, or disability affects their work abilities. there is.
According to the ministry’s website, these could reduce unnecessary visits to health care workers, reduce costs, and reduce the income support gap.
Currently, Tamzin focuses on pacing. This means deliberately slowing down to rebuild energy storage.
She had to do this in preparation for this interview.
“It was a little easier when I realized I was really sick and this was my life, because I just let go of my duty.”
Dave says that people with ME / CFS still face a lot of stigma, and some call it “yuppie flu” and think it’s “lazy.”
“What we want people to know about it is that it’s real. You shouldn’t blame those who have it for being lazy.”
For most people with ME / CFS, he says they desperately want to return to good health and start their lives again.
“They don’t want to be where they are, it’s not lazy. Many people with me were high achievers, that’s what we really noticed.”
Tamzin felt the stigma directly. She remembers hitting an old teacher in a supermarket while in a wheelchair.
When asked why she was in a wheelchair, she said it was due to ME / CFS and said, “Oh, you’re just tired.”
“The pain is terrible and the crash is terrible. If you want to do something, you just have to sit there,” says Tamjin. “When I have an adrenaline dump, it feels like my body is giving me the wrong energy, it’s intolerable.”
Even reading a text message longer than a few words is overkill for her, but she can sometimes play the game Minecraft-it’s less focused.
“I’m having a hard time. I’m talking now, so I believe it’s not just my mind making things. I can laugh. I can exist. And I’m not.
“I’m stuck doing three things. I can lie down, make phone calls, watch movies, play funny Minecraft. I don’t like Minecraft either, but that’s what gives me It’s one of the only things you can do. Why can’t I crochet when I can? Why can’t I cook? “
This terrible fatigue was evident during this interview, where Tamjin had to leave before the end because he could no longer sit.
Professor Emeritus Warren Tate knows what Ramsey is experiencing.
Thirty years ago, his daughter, then 14 years old, had a mysterious illness that later turned out to be ME / CFS.
Since then, molecular biologists have been studying the condition.
He states that reports of the disease began in the 1930s, with 75 “incidents” about what Tate probably described as a viral infection, and several illnesses have continued since then.
“We had our own in New Zealand, you may have heard of the Tapanui flu. [In] In a small town in South Otago, all of the inhabitants suddenly became ill, and some remained ill. “
It was in 1984, but before this there was a similar outbreak at the Royal Free Hospital in London, affecting about 300 staff and some patients were ill, he says.
This is a place named Myalgic Encephalomyelitis because they had myalgia
Brain pain that clearly points to effects on the brain and inflammation.
As far as he knows, Tate says the name Chronic Fatigue came from an incident on Lake Tahoe, then called just “hysteria,” almost at the same time as the outbreak of the “Tapanui flu.”
“Healthcare professionals have actually dismissed it as a serious illness in the United States for many years, and it has actually received the right attention only in the last five to ten years.”
He says his daughter develops the disease after a bout of glandular fever, and one in ten develops ME / CFS after the disease.
For the next three to four years, she was basically tied to bed and took three hours to recover after taking a shower.
“She felt a lot of pain during the night and had countless symptoms. She was allergic to all foods .. .. the wife had to systematically return to the basics. Which Eating the kind of flour was unresponsive, and thirty years later she still lives primarily in that life. “
Usually he has an acute phase and, sadly, one in four never actually leaves it and has to live in a house, and three in four go to the chronic phase. , Says that you can try to build a restricted but constructive life.
He says these people can relapse frequently.
“My daughter has been in that situation for three to four years and has begun to climb the ladder in an attempt to regain her life. It will go up two steps and go down one step.”
People with ME / CFS now have more information, but doctors weren’t trained about the condition until 2013 when they started giving medical students an education frame about it, he said. say.
“Therefore, untrained doctors find it very difficult to deal with the disease because they have never been exposed to it. Therefore, patients generally know more about it. , The patient feels frustrated. “
In terms of financial support, Tate told Herald on Sunday that people in need of social payments are not eligible for the same funding as other sick people.
“This is an ongoing illness, and ME / CFS seems to be lifelong for the vast majority of patients-and we are talking about 95%.”
He says that instead of hundreds or thousands of cases here and there because of a pandemic, 20-40 million are now suffering from a postviral fatigue syndrome called Longcovid.
People with long Covids aren’t officially classified as ME / CFS, but Tate finds out if people like him have molecular signatures from ME / CFS in long Covids. He says he is trying to do research for him.
Every day is still a fight, but Glenys says this month Tamzin went out for the first time for a very long time and went into the yard.
“It was sunny. This was an important part of our life. The situation is getting better because this is the first time she has done it and sat there.”
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SourceWellington Teen’s Broken Heart When Chronic Fatigue Is Tied To Her Bed And Fighting For Help