Where there is will, there is pain

An interview of Timo from my Finnish CFS/ME forum, done in the spring of 2011.

Timo is 22. He used to do gymnastics in the Finnish national team. He wouldn't let something little come in the way. It's not that he is a perfectionist, he just wanted everything. Or at least a Masters of Science and to be a top athlete.

Then Timo got an ear infection, not exactly a major illness, but that's when things started to go wrong. After a few weeks of tinnitus and antibiotics he got well again. Almost. He was more tired than usual and started struggling with brainfog.

Six months later the doctor of the Olympic committee diagnosed Timo with mycoplasma, a bacterial infection which is usually only a short-lived problem, but sometimes becomes chronic. The first round of antibiotics tided him over for 2-3 months, the second for a month. The third one no longer did anything.

This was in 2007. Despite not feeling well Timo spent the summer training, hoping to be among the three athletes to gain the coveted spot in the Word Championship team. Training was getting really hard and he often spiked a fever afterwards. He was often sick, visited many doctors and chowed down many rounds of antibiotics. Not surprisingly he didn't make it into the team.

Despite all this Timo went to the army in the summer of 2008. As an athlete he could have got away with six months of service, but he chose to spend a full year there. Things weren't too bad.

"I got lucky in that had I gone there a year later I would've been so sick I'd still be crawling towards the barracks", Timo says.

***

Only when Timo resumed his studies after the army did the real problems start. Fatigue and cognitive problems took hold and he failed to pass any courses on his first year.

A year later Timo passed an entrance exam to take another major in the same school, the Helsinki university of technology. At first things were going smoothly, but then the monster began to rear its head again, no matter how in denial Timo was. After passing a few courses and finding some new friends he was forced to stop again.

"I remember cursing my low-intellect brain, my feeble and weak muscles", Timo says. "Now I understand that they were the biggest wealth I've ever had, something I should have been grateful for."

But Timo is very stubborn. On his worst days he can barely do anything and even sitting down exhausts him, yet on his good days he's still training. His doctors would probably be happy. With many illnesses exercise is a good idea, even if it temporarily makes you feel worse.

But Timo has chronic fatigue syndrome/myalgic encephalomyelitis, an infectious neurological illness similar to both multiple sclerosis and HIV/AIDS, but its hallmark is severe post-exertional fatigue. Exercise is detrimental in CFS/ME, just like it's not a good idea when you have the flu. It can lead to long relapses, even death.

Timo describes a feeling somewhere between intoxication, hungover and concussion, with dizziness, achiness and fever thrown in for a good measure.

"I don't mean anything like 'oh, I'm so tired, I don't feel like doing anything', but like running 10 kilometers while having a fever after which someone beats you up. Fighting that exhaustion is like trying to fight a diesel locomotive."

He can barely breathe, he feels like he's going to faint and sometimes he throws up. Yet he feels he must do it, perhaps something only an athlete can understand.

"To be honest, the pain in my muscles, the aches in my joints and the malaise bring some welcome change to this exhausted, dream-like state which would otherwise continue unchanged from one day to another. They make me feel like I'm still alive."

***

Timo's physique isn't the only thing that has suffered. Being deprived of sports is painful, but so is being deprived of his mind. He quotes from the Finnish Wikipedia page of Alzheimer's disease and suggests he would fill the criteria. He may be right: at its worst the "brainfog" caused by CFS/ME can be akin to dementia. Some patients can't even recognize their family members.

Timo finds it difficult to learn new things, difficult to talk with his friends, difficult to even think. He feels confused and unreal. Communication difficulties make an alienating illness even more alienating.

For a little while it seemed like Timo had uncovered the solution: modafinil or Provigil, a stimulant used e.g. in the treatment of narcolepsy. His brainfog disappeared and he was even able to study maths.

"It was like awakening from a dream", Timo recalls. "It's as if some invisible power had dragged my brain from the middle of a storm cloud."

Things even looked different. The world had appeared messy and flat, as if his brain had trouble perceiving depth, but suddenly everything was crystal clear and properly three-dimensional.

Alas, it was not to last. Mental exertion still exhausted Timo just as badly as before. And after just a few days modafinil began to lose its near-magical powers, as often happens Now it still relieves his fatigue and it has helped him continue training, but it no longer wipes away the brainfog.

Timo has tried several other drugs and supplements, but nothing seems to help much. But the fact that modafinil did work like a dream for a while gives him hope that he will find something else with more lasting effects.

*** In early 2010 Timo was told by an internist that his symptoms were caused by depression. Doctors often claim that people with CFS/ME are determined to find a (non-existent) physical cause for their symptoms and unwilling to consider that it's all just psychiatric. In reality most would be more than happy with such a solution.

Timo was absolutely delighted to hear that just by starting an antidepressant all his problems would go away. No news could have been better. Finally he would get well, finally the torture would be over!

"I had to believe the guy", Timo says. "How could a doctor with both glasses and beard not be smart?"

Timo really wanted to believe the diagnosis, even though he didn't even get out of the doctor's before he started doubting it. He was so excited about the prospect of finally getting better that he ran down the stairs. That short sprint made him feel incredibly sick. Six months ago he was training for World Championships, how could depression rob him of his stamina that quickly?

But he shrugged off that nagging doubt. The physical deterioration was surely just a deficiency of serotonin, right?

"Whenever I felt deceivingly cheery, even happy, I just reminded myself that I was depressed. I even told all my friends I had depression, which in hindsight was a really bad idea."

The citalopram, an SSRI antidepressant, did nothing. Despite Timo's conviction it would work there wasn't even a placebo effect - studies show placebo does very little in CFS/ME compared to other illnesses.

Timo realized that the more he rested, the better he felt - and the better results he could achieve when training. The more he trained, the worse he felt and the more his results deteriorated.

"Later that spring I realized I had been an idiot to believe that doctor."

Soon afterwards a leading infectious disease specialist told him that he filled all the criteria for CFS/ME.

***

Timo used to believe he could cure himself with pure willpower. Others disbelieved him and thought he was just lazy, but he was going to prove them all wrong, to show that nothing could falter his spirit. The lower Timo sank, the more determined he was to fight. He listened to Eye of the Tiger and watched a training montage from Rocky IV to psych himself up.

"Willpower. That's all I ever had", Timo says and summarizes his past world view: "I'm not talented in anything and I don't need to be. I can reach anything I wanted if I just focus all my willpower on my goals. I'm driven by a burning desire to succeed. It was going to solve this problem. Yet my will was what others questioned the most."

Others have tried to push him to go on, to just be "determined".

"As if I hadn't tried. You might as well apply that same method to a wound in your leg. 'Just be determined that if you whack the wound with an axe, it will get better!'"

Timo realizes that if he was healthy, he might react the same. But at times he feels like punching those who suggest he's not trying hard enough, especially when it's people who have known him since childhood.

"I still remember when looking at the mirror I would see the fear and despair in my eyes, from realization that my willpower did not matter. I had lost control of my life."

***

Timo has come up with a lot of analogies and imagery to describe his symptoms. He speaks about storm clouds and diesel locomotives, compares his brain to mashed potatoes and his fight against the fatigue to fighting a fire with kerosene. Healthy people just can't understand what he feels like.

But Timo also speaks squarely about the way the illness has destroyed his life. He is looking forward to nothing else but the faint hope that some day, he will be cured.

"I have even considered that I'd be willing to pay to change this illness for cancer. At least cancer patients get some respect, but more importantly, cancer you can get rid of. It can be beaten, or otherwise it beats you. But one way or another, you get rid of it."

Psychiatrist and author Elizabeth K├╝bler-Ross who came up with the famous "five stages of grief" would call that "the bargaining stage" of grief. Other CFS/ME patients understand very well what Timo means. With chronic illness getting to the last stage of grief, acceptance, can seem impossible. How to accept everything you had is gone?

Timo feels like the illness has made him grow "at least three meters" as a person. If he ever gets better, he says he will have new respect for his life, and of course his health, which he used to take for granted. But that day just seems way too far away.

"I'm not depressed or anxious. I'm just so. Fucking. Angry."