Science Norway:
Victoria Augustine falls ill from everyday activities like taking a shower or family visits: “I end up bedridden with a feverish feeling and body aches"
By Ingrid Spilde
"Victoria Augustine Trulsen, 25, can remember the first time she thought: This can't be normal.
She had been struggling for a while after having mononucleosis. But there was never any doubt that when autumn came, Trulsen would start 10th grade – the final year of lower secondary school.
However, that plan crashed already on the first day of school.
'I managed half a day of school. Then I just had to go home, and I was bedridden afterwards. It was really scary,' Trulsen tells sciencenorway.no.
'At first, I clung to what the doctors said – that you can be unwell for a long time after mono. I'm glad I didn't know it would last this long.'
This was the start of a period where Trulsen was very ill. She spent most of her time in bed and was unable to complete the school year. She was eventually diagnosed with ME/CFS."
---
"She frequently exceeds the limits of what she can tolerate, and then the first symptoms appear.
'My pulse rises, and my face swells up. My skin becomes red and shiny. My hands shake, and my body starts to ache. Then I lie down if I can. I draw the curtains and put in earplugs' says Trulsen.
Sometimes she manages to save herself and avoid crashing. But it's not that easy.
'You want to do so much. I live a bit on adrenaline and just want to take care of this or that task,' says Trulsen.
The result can be a serious PEM episode."
---
"However, pacing is not as easy to achieve as we might think.
A characteristic feature of PEM is that the reaction to activity is often delayed. It can come several hours after the activity itself. Often, the reaction does not fully set in until the next day. Additionally, the amount of energy you have at your disposal can vary from day to day.
This variability makes it extra difficult to know which activities one can tolerate and how much activity triggers PEM."
---
"Sommerfelt believes part of the problem is that PEM is often completely invisible to others.
'During an activity, it's not possible for others to notice that someone has gone over their limit,' he says.
And when the crash comes, perhaps the next day, no one notices that the person is in bed and feeling terribly unwell.
Many ME/CFS patients have expressed that they wish other people could understand how profoundly ill they become.
Cotton would like people to understand that cheering them on doesn't help.
We are so used to thinking that it is healthy and positive to push ourselves. We cheer and motivate each other to keep going. But for people with PEM, the effect can be the exact opposite, Cotton believes.
'Pushing, persuading, and cheering – come on, you can do this, just a little more – is one of the most dangerous things you can do. By exceeding our tolerance limit over time, we risk long-term deterioration,' she says.
'Instead, we need those around us to encourage us to rest and take breaks. We need to hear them say: 'Sit down, put on sunglasses, go and rest for fifteen minutes!' And then you can come back so we can be together again afterwards,' she says."
