Back to life

Photos by Tor Erik H. Mathiesen

Elene was diagnosed with ME Autumn 2001, when she didn’t recover after having contracted mononucleosis. She had just turned 16, started high-school, and up till then having an above average  active life. Her life now changed dramatically, an 8 year lie-down period started.  Elene had her first infusion of Rituximab in December 2007. Today she consider herself to be well, and  has recently ended a one year outdoor study at Songdal Folkehøyskule, which has engaged her in activities like hiking, biking and skiing, to mention a few.

Never completely recovered
May 2001: Elene is in the 10th grade. She has just turned 16 when she contracts mononucleosis. “My life was perfectly normal up to that point,” she says.
Normal meant above average active. In addition to school she was dancing, singing in a choir, had a part time job and went on numerous hikes. “Idleness wasn’t for me”.
Weeks and months pass but the mononucleosis won’t let go.

“I was weak and tired; I suffered from a sore throat, aching lymph nodes and muscle pain. It felt like a constant flu,” says Elene.

By early autumn, her doctor sent her to Professor Harald Nyland at the Neurology Department at Haukeland University Hospital. He suspected she was suffering from ME, and consequently diagnosed her with it. Elene had barely heard of the disease, but she soon became familiar with its afflictions. In autumn 2001 she started high school, but by the autumn holiday she had experienced more sick days than school days. She had no strength.

“I simply had to throw in the towel,” she states.

A total turnover
It was a total turnover. During the first year she hardly did anything.

“I sat in a chair or lay in bed. If I did something it always rebounded on me, and I needed to rest.”

That was the worst of it: nothing, not even exercise, helped. Still, Elene was one of the “lucky” ones who didn’t need to rest absolutely all the time. It enabled her to finish high school – but it took her 7 years instead of the normal 3 years..

“From 2003 until 2009 I attended between two and ten classes a week. During some periods I had a special room for resting.”

All her energy was needed for school, but as long as she managed a little Elene refused to give up. Any social life outside home was as good as non-existent. Energy planning was the key word.

“If I wanted to do something on a certain day, I had to drop something else the next couple of days. That was no fun at all.”

No choice
In autumn 2007 Elene received a phone call from Nyland. He told her about the pilot study at the Cancer Department. She decided to join after talking to Olav Mella and Øystein Fluge, even though she wasn’t entirely convinced.

“On the one hand it seemed a bit scary, and I entertained no hope or expectations of recovery,” she says.

On the other hand, she could sleep for 18 hours a day and she had almost given in to the idea of this being her life.

“I felt I had no choice”.

 Elene had her first infusion of Rituximab in December 2007. At first she noticed little change. After about 6 months, when both she and the researchers were beginning to loose courage, something suddenly happened. And it happened fast.

“I could feel it in everything – energy, muscles and not least in everything cognitive. I didn’t realise how badly the disease had afflicted my memory and concentration, but now it felt like the fog was lifting. Everything fell into place, it was crazy!”

For about four months Elene was able to live like she used to before she fell ill. Then there was a relapse.

“At that point I almost wished I had never been part of the study at all”, she says.

But Elene was well looked after, and she was offered a new round of treatment during the next study – with the same positive result.

The lie-down is over
Elene is now a pilot patient in the study engaged in maintenance treatment and has had six infusions of Rituximab. She will be under further observation, although without any more infusions, and undergo regular controls at the Cancer Outpatient Department.

“I’ve been in good shape, and I have defined myself as recovered since December 2009,” she says.

Inspired by The Snow Cave Man
In spring 2010 she sat her remaining high school exams as a private without any difficulties. Her exams over and done with, she applied for nursing school. She had second thoughts, though, after seeing “The Snow Cave Man” at the cinema.

“There’s a scene where the main character is skiing in his underpants in glittering sunlight and singing at the top of his voice. I then realised I wasn’t ready for any studies quite yet,” she laughs.

When she came home that night she went straight on the internet and applied for the outdoor studies at Sogndal Folkehøgskule. These studies engage students in activities like hiking, biking and skiing, to mention a few. At present she has just finished her year in Sogndal, together with 80-90 other…19 year olds?

“My official age is 19,” the 26 year old laughs. “I’m at the same stage in life as the other pupils. I’ve simply put life on hold for the past few years, but now I’m back on track, and I’m able to live my life as the real me.”

Back to mainpage CFS? click here