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Losing a beloved pet is heart-breaking for anyone, but even more so for someone who has already lost so much to years of being sick. Even when you have a neurological illness that few people understand, animals can provide unconditional love and support.

Helen still has her other bichon frisé dog Snuffe, but the recent loss of "her little shadow" Lillen (pictured) dealt a devastating blow, especially since any stress tends to make chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) even worse.

Helen studied Swedish and English, became a librarian and had three children in just over three years. For several years she was effectively a single parent, as her husband worked in a different city, and she had no family members around to help.

Then, when the children went to school and she was planning to return to work, Helen got sick. She was constantly suffering from colds and flus and ran a fever for many months. After that she never recovered.

That was 16 years ago. Helen, 57 now, believes the stressful situation may well have contributed to her not recovering from a viral infection. Before that she was always healthy, besides exercise-induced asthma which took decades to get a diagnosis. Now she struggles with a number of debilitating symptoms.

"At its worst I feel like moving in a slow-motion film, or through molasses", Helen explains. "Even lifting my hand can feel like an impossible struggle, and I can't even think about going out. I get light-headed, as if I could pass out at any moment. Often I feel nauseous and the fatigue makes my tinnitus worse."

Besides fatigue, Helen's worst symptoms are sleeping problems, impaired concentration, poor memory, problems with digestion and pain in shoulders, above knees and in her back.

"The newest symptom is that I cannot tolerate loud noises, they even cause physical pain", Helen says. She has also become intolerant to grains containing gluten. Heat saps her of all energy, but cold temperatures also cause pain - quite problematic when you live in Finland. All of these are very typical symptoms of CFS/ME.


Helen has been on disability for years, the official diagnosis being "severe depression". It is impossible to get on disability for CFS/ME in Finland. As is almost the norm, doctors kept telling Helen she was just depressed.

Like many CFS/ME patients, Helen was also offered antidepressants. Sometimes they do help the symptoms a bit, but often they do more harm than good. In Helen, they only did harm.

"The newer drugs made my sleep even more superficial, which caused daytime sleepiness", Helen recalls. "The older drugs just made me more drowsy, I could sleep for 20 hours ."

Helen has found relief in low dose naltrexone (LDN), an immunomodulator and likely the most effective treatment for CFS/ME. It has particularly helped with her sleep and concentration problems. Melatonin also helps her sleep and magnesium relieves neuralgic pain.

Still, she has got sicker over the years and has developed new symptoms. Pain in particular has increased, but the fatigue is worse, too.

In the earlier years of her illness Helen used to be active in some organizations, which included meetings all over Finland, and sometimes even flew abroad. Now just taking the bus to the nearest city, a 30-minute journey, takes a massive effort.

"Just staying awake is agony. I can't talk with anyone. I can't read, can't watch TV, the only thing in my mind is to lie down. I don't have the energy to invite friends or relatives over or visit them."

As is typical of CFS/ME, all kinds of physical and mental exertion is detrimental to her health. If Helen has a chat with a friend, she has a lot of trouble calming her mind down afterwards and despite being exhausted can't fall asleep.

"If I'm feeling slightly better one day and exert myself too much, I will feel the punishment over the next days. I end up bedridden."


Besides her dogs, her faith, her family and the few friends who understand have helped Helen cope. But she also says:

"Sometimes nothing helps me cope with the illness, I just feel like screaming and fighting, breaking something, because I'm so angry when my body won't do as I want to!"

Helen feels that people just can't understand what CFS/ME is like, especially since she doesn't look sick. She is frustrated by the common idea she and other CFS/ME sufferers are just lazy, that her life is a "constant holiday".

"Not all disabled people are in wheelchair", she notes. "The worst advice I've got was that I should go play chess with some old person so that I could feel useful. Yeah, right. If someone takes care of my house in return, then maybe."

Even though some treatments have helped Helen, she doesn't believe she'll ever get well. She feels the situation in Finland is pretty much hopeless. Yes, it will probably improve, but she doubts that will happen in her lifetime. But what if she did get well?

"I would first do a thorough clean-up at our house, then I would start applying for work and if I couldn't find work, I'd study literature. I would also do volunteer work. I wouldn't run short of things to do."
Today is again CFS/ME (and fibromyalgia) awareness day. This year's interview is of 57-year old Helen.

Note that this article is not meant as a comprehensive view of CFS/ME as an illness. It is intended a "snapshot" of what life can be with CFS/ME, along with my other articles:

* The flu that didn't go away
* Abnormal but unspecific
* On life, death and "fatigue"
* Wash it away
* Mind games
* Where there is will
delliversagain Featured By Owner Jul 9, 2012   General Artist
Feeling very fatigued over the past couple of days, I can empathize. It's debilitating even just being slightly fatigued.

Well written.
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