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Where there is will, there is pain

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 Kübler-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."
Today is again CFS/ME (and fibromyalgia) awareness day. This year's interview is of 22-year old Timo, a (former) Olympic-level athlete.

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

Thank you for the Daily Deviation! Oh, and after writing this piece, I also met Timo in real life, and did an interview of him for a Finnish health/fitness magazine. Sadly it's nowhere near as deep and thorough, as they only gave me 8,000 characters to fill, which isn't much for a profile. I added as a preview image one of the pictures I took for the article.
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Daily Deviation

Given 2011-09-29
Where there is will... by ~diamondie is a powerful and well-crafted article written for CFS/ME awareness day--and for any other day. ( Featured by nycterent )
:iconbettashark:
bettashark Featured By Owner Jun 22, 2016  Hobbyist General Artist
Thank you so much for writing this. I have CFS, and my experience has been virtually identical to Timo's.
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:iconsnow-valkyrie:
snow-valkyrie Featured By Owner Sep 29, 2011  Hobbyist Digital Artist
I cried clear till the end. If Timo can live with CFS (not only live but flourish) then I can cope with Post Traumatic Stress Disorder. Thank you for posting this work. It was wonderful.
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:icondiamondie:
diamondie Featured By Owner Oct 26, 2011  Professional Writer
I'm glad the piece gave you some hope/inspiration. I have to say Timo isn't all that happy though. He's surviving more with anger than acceptance. But I'm sure he will reach the acceptance stage at some point, but it can take many years. I know I'm happy most of the time despite still being ill (even if nowhere near as ill as I used to be). I have PTSD too, though only minor and it does not bother me much any more (sadly, the physical effects of some of that trauma still do).
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:iconipawed:
iPawed Featured By Owner Sep 29, 2011  Hobbyist Writer
it saddens me that this has so few comments: i hope the lack does not imply people didn't read this through.

this is a piece of literature that cracks open ribs to expose all the fragile, painful, unhappy things and says, "see me". you are opening eyes, showing us so much intense emotion about a life that we can barely begin to comprehend, and yet it doesn't make us feel alienated the way Timo's disease alienates him. you make me want to meet him, to shake his hand, and to make an effort. to let him know that i care, that we care. that i want to help him, somehow.

before reading this, i didn't even know this disease existed. i wish everyone who has it, though, some relief, and hope towards a cure.

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:icondiamondie:
diamondie Featured By Owner Oct 27, 2011  Professional Writer
Thank you, that was a very moving comment. When I wrote this article I had only known Timo online, but in August, when I was back in Finland (I'm Finnish but live in the Netherlands now) I met Timo and did an interview of him for a Finnish health/fitness magazine. I also shot photos for the article and I've now added one of them as a preview image for this article, so that you and others can (kind of) "meet" him. And I will pass on what you said.
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:iconipawed:
iPawed Featured By Owner Oct 28, 2011  Hobbyist Writer
cheers - all the best to him, and thanks again for sharing his inspiring story in such an amazing way.
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:iconeuxiom:
Euxiom Featured By Owner Sep 29, 2011
Very good article/interview. :)
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:iconzeaphra247:
Zeaphra247 Featured By Owner Sep 29, 2011
this was really informative. I had heard some people accuse those with this disease of being depressed and it makes me ashamed sometimes that I am interested in psychology. Those people mean well but they give the field a bad name sometimes. Hopefully a cure will be found now that they disease is being treated as being real. Its good that he has hope for the future. I pray it will keep him going until a cure is found for him
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:icondiamondie:
diamondie Featured By Owner Oct 27, 2011  Professional Writer
Thank you. Sadly, it's far from being treated as real universally, despite over 4,000 studies showing a clear organic origin. :-/ Some treatments can occasionally be curative, but they cost thousands of euros a month.
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:iconlentekriebel:
Lentekriebel Featured By Owner Sep 29, 2011  Hobbyist General Artist
I'm also struggling with CFS/ME and fibromyalgia for more than 25 years now!! Developed other diseases since I was diagnosed also.
The best with everything and hang in there! Like Timo I was a good gymnast before I became sick and I know how hard it is to adjust. Lets hope they find a cure real soon.
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:iconlobika:
LOBIKA Featured By Owner Sep 29, 2011  Hobbyist General Artist
IS WONDERFUL PIECE OF WRITTING
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:iconsainte-vincient:
Sainte-Vincient Featured By Owner Sep 29, 2011  Hobbyist Digital Artist
This is a fabulous peek into what life is like for those of us with these kinds of chronic disorders. I've had the Fibromyalgia Dx for 12 years now (I'm 31), though my doctors suspect it's been there since childhood. I know it's difficult for those who still have their health to comprehend just what life is like with a chronic disorder that saps all of your strength, leaves you in agony and takes your mind as well, so thank you for writing this dynamic and insightful piece.
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:iconroger-the-elfin-soul:
Very powerfully written indeed, clear, bright and mirror-like, actually makes you feel how it is to live with that horrible disease. It's nothing to lose a thing, it's a great loss to lose your health, but the worst ever to happen is losing your mind. Thank you so much Diamondie for sharing this.
God help you Timo...
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:iconself-epidemic:
Self-Epidemic Featured By Owner Sep 29, 2011  Professional Digital Artist
My ex had ME for 14 years, he still struggles from stamina issues, we both go to uni and after about 2 hours hes exhausted and drained and cant do anything for the rest of the day.
His mum also has it, and has for about 7 years.. its insane, because it isnt heridatary. D:
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:icondiamondie:
diamondie Featured By Owner Oct 26, 2011  Professional Writer
It's not hereditary, but there is some genetic predisposition, and it is somewhat infectious too. I know many families with more than one member who is sick, including a friend with a sick brother and mother.
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:iconlit-twitter:
Lit-Twitter Featured By Owner Sep 29, 2011
Chirp, congrats on the DD, it's been twittered. [link] :)
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:iconvigilo:
Vigilo Featured By Owner Sep 29, 2011  Student Writer
Congratulations on your DD. This is a beautifully written interview. :heart:
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:iconzebrazebrazebra:
zebrazebrazebra Featured By Owner Aug 21, 2011  Professional Writer
I am all but diagnosed with CFS/ME. The time you put into raising awareness means an awful lot to me.
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:iconhoodimann:
Hoodimann Featured By Owner May 13, 2011
Well-written, compassionate.
Thank you, Diamondie.
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