Fearlessly shivering

I have been pondering the symptom of shivering. Its a beautiful expression yet it might not feel as comfortable to be shivering. As a dancer I can choose the quality of shivering in my movement work. As an ME patient I cant stop shivering when the symptom appears. The nuances are that it is not by choice that I shiver. But I still enjoy the shivering. If I accept and I choose to.

To shiver might be a sign of being cold, of being fearful, of not having enough power and of being fragile. Yet to think that the shiver comes from an emotional state, provokes me to the core. Something is sick in this body of mine and the accumulation of effort makes it shiver. Its not emotional. Its a symptom emerging in a sick body.

Yet when I was lying in the bed on stage, for the final run through before the actual performance on the 12th of May, Tv filming, dancers focusing, musician and technical crew working: I was shivering. I couldnt control the shiver and I did what I have been taught through my career: The show must go on. I cant stop, leave or make a scene. I have to accept what the body does and make it part of the dance. In this ambivalence between being professional, being an artist and being a human being, lies the challenge of creating art that is sustainable for me. Here is the link for Tv2 coverage of the performance. I am grateful that the press paid attention. Karantena #millionsmissing part 3 news.

Photo: Rett Vest and Kristine Nilsen Oma (On stage at Studio Bergen during the final run-through)

Post exertional

Brutal beauty

Quietly the inflamed backside of the head is raring its ugly pain signals.

The darkness surrounds me as I lie still in bed, acknowledging the emerging pain signal. By lying here and doing nothing, the inflammation will calm down. I know this signal now. I feel certain.

I wish for running outdoors, calling all dancers and collaborators, hugging them and talk about where and how we could take the next step in the work. Develop part 4, perform the work elsewhere, involve more collaborators…

And those steps are emerging as dreams in my mind.

I lose days as people move on and I lie in bed. The tinnitus is meeting the sounds of silence, and the simultaneous brain fog is stopping the mind from thinking clear thoughts. Its an awareness that is more on a sensory level that the world moves on and I lie here as the world passes by. There is silence in this that I have come to appreciate, a silence that allows me to be truly authentic, yet at the same time it feels like I am cutting off my human relations.  

Yet underneath all these brutal facts I feel immense gratitude, joy and a beauty: I managed to create a work I am proud of with fantastic collaborators and performers. How did I do this? Passion and a refusal to allow any sense of low self esteem rule any decision making. I cant wait for the body to be ready for part 4. And perhaps performing part 3 again. We will see. Please Body Follow.

Kan ME bli sexy?

Jeg tenker ikke at alle skal få lyst å få diagnosen men jeg tenker at alle skal være interessert i forstå hva ME faktisk er. Og at vi alle må gjøre det vi kan for å bidra til hvordan vi kan gjøre det bedre for alle ME syke. Her er noen nye intervju jeg har gjort om ME og dansekunsten 12 mai. Velkommen til

Karantena del 3 #millionsmissing.

Livmødrene – en podcast om kvinne sykdom. Denne episoden intervjuer de meg om ME.

TVVEST – et intervju med tv kanalen om dansekunsten og markeringen av ME dagen 12 mai

Åsane Tidende: Noe jeg var nødt å gjøre

Foto: Per Rutledal med Kristine Nilsen Oma vi oppdaget en ny tagging på Laksevåg. Jeg hadde ikke krefter til å danse, men vi måtte ta bilde.

Journeyling

There are so many aspects and so many ways of seing things. I am pondering how to start journaling from the experience of going on this journey. In many ways I am disappointed and in many ways I am exhilarated.

I had to learn my ME/CFS in a different clima. It turns out its the same illness, just a different climate. And the tropical climate of Manglaralto, close to the Paficic Ocean and the rainforest comes with advantage and disadvantages. I didnt have the normal muscle pain, and so I started to get severe swellings instead. My eyes started loosing its moist and my right eye starting not wanting to open up in the mornings. Most likely due to the sunlight My back went into lockdown and forced me on long walks and anti inflammatory medicine that caused uproar in my stomach. Yet the tropical climate provided a smooth painkiller for tension, deep sleep 70% of the time, wearing a dress every day for 2 months and a slight tan even though the maximum I spent outdoors in a day would be 30 minutes.

The exhilaration is from the fact that I could travel this far, I can travel, and I do survive. But at what cost? Financially its a cost. As I dont do much in everyday life I can somehow afford a little cost, but not too much. I fear the PEM, but I am ready for war with the weapons of my bed, my assistant, the tools of diet, hot yoga and more…

After 6 days back in Bergen, I am still in Ecuador with my body. I hope for more awake days soon as I am finishing up preparing for a rehearsal with the dancers for the 12th of May presenting part 3 of Karantena #millonsmissing. I hope you will come and experience the horisontal with me.

Life is a never-ending struggle to grow. Daisaku Ikeda

Photo: Per Rutledal with Kristine Nilsen Oma

Muscle weakness = not a weakling

Karantena #millonsmissing part 3 will be presented in co production with Carte Blanche, ME union/Vestland Norway and Bergen Dansesenter the 12th of May this year. Click on this text and keep informed on the development of the work.

Muscle weakness is one of the MECFS symptoms.

This symptom has gradually become worse in my experience with the illness. I remember I went to a yoga workshop and asked for some feedback on one of the exercises. I was told I had no physical power. It took me while to accept this, as my will is much stronger than my physical power. The problem with MECFS is how difficult it is to build power in the muscles. Any attempt I have had to build muscle power has worsened my general health.

If you dont exercise, your body gets weaker. I do deep breathing exercises and mild stretching and it keeps my back in check. Yet my body feels like it is getting weaker every year. But dont mistake my muscles becoming weaker with my character and integrity doing the same. As my body gets weaker my determination grows stronger to have hope, to create and be an honest voice.

And I particularly are feeling this muscle weakness here I lie horizontally writing this in my bed in beautiful Ecuador. I went for a walk down the ocean yesterday which is a couple of hundred meters from my bed. I sat down by the ocean and rested before walking back to bed. That activity took me about 30 minutes. Today I wake up with aches and pains in my legs like I would have if I had trained all day in a dance studio 15 years ago. One of my legs are constantly cramping and my body starts shivering if I attempt to do anything that requires active use of muscles. I am not fond of this symptom, in fact it has caused tremendous grief, but I accept its an illness and I keep asking what do I learn from this symptom? I am human, I need to accept and receive assistance daily, I am the mercy of my bodys command. I have a seeking mind towards what can improve this particular symptom as well as all the others. Surely that is a good thing? Muscle weakness is directly the symptom that makes me NOT dance physically. I know this is also part of getting older, but getting older is not MECFS….

The carefulness I now move with due to the muscle weakness is softer, calmer, sensitive and more alert to whats going on inside and outside the body. The patience of this life is character building and not synonymous with being a weakling.

Photo: Per Rutledal with Kristine Nilsen Oma: I was attempting to move in the meeting with this beautiful turquoise wall. Very soon my muscles give in and we move back inside to rest horizontally.

Insomnia

Insomnia is one of the MECFS symptoms.

As most people know, not sleeping can literally drive you insane. Insomnia is hellish particularly when it lasts for longer periods of time. I have found myself being happily awake at night, but stressed at what I know it leads too. I have tried milder versions of sleep medication to assist me if the insomnia takes over, but I refuse to take medicine strong enough to make me sleep as deep as I probably need at those times. I fear the side effects of heavy sleep medication more than I fear the insanity of longer periods of insomnia.

What are the benefits of insomnia? I keep returning to the gratitude I feel when I DO sleep again after a period of not sleeping. Yet this symptom is a symptom I feel I master 60-70% of the time. I have built a solid discipline that involves isolation from 4pm of every day. This way my body seems to not become triggered, and so its more likely that it falls asleep. Its a very boring life at times, yet I have come to appreciate my own company in a different way than before. Unfortunately I dont have the stamina to entertain my inner world too much (TV, courses, books etc), yet I see the potential for doing so if I one day got better from the illness. Insomnia can also be experienced from a high life state, I certainly have felt this experience in moments when I feel gratitude for being alive and having so much love in my life. Yet its un human to sustain this high life state with a symptom so real and recurring. Yet I cling to the wisdom that I can choose to feel joy as long as I choose hope as a daily ingredient in my life. I know deep down that this illness has very little, if anything, to do with what I have done in my life, what I have thought, what I have eaten, how I was raised and all else circumstantial. What I do with my insomnia and my illness is something that I have huge influence on however. The benefit of insomnia for me is the chosen development of patience with myself and the opening of understanding the concept of time. When I have had insomnia for a while, and less time for quality life, I tune into the wisdom that this is only right now, and it will change. I practice gratitude for every moment I got. That is a benefit I choose to take from insomnia.

Patience is, in and of itself, a great challenge and it often holds the key to breaking through a seeming impasse.. Daisaku Ikeda

Welcome to the premiere of Karantena #millionsmissing part 3 on the 12th of May.

Blending into the bench outside the flat I live in Ecuador, pondering how I dance now that insomnia stole a night of sleep from me. Photo: Per Rutledal with Kristine Nilsen Oma

Muscle/less pain

I am currently choreographing (With great pleasure in my heart) Karantena #millionsmissing part 3 lying horizontally in Ecuador, feeling the tropical climates painkilling effect to this common symptom with MECFS:

Muscle pain is a typical MECFS symptom. Not every patient has it, but many do. I do.

The pain has varying levels in my MECFS life. The pain can be a tingling ache that burns nonstop. It can be tension as a secondary symptom due to the fact that I cant move much. Staying still creates stiffness in the body which is painful. Nerves, particularly in the lower back likes to get tangled with too much stillness and the pain can start to ache. I do deep breathing and some exercises lying down every day that keeps the worst pain in control.

I used to think that pain always related to how I was feeling and be very hard on myself for feeling any pain. Yet this pain is very different to emotional pain. I sometimes reflect that it is connected still to inner turmoil, but it serves no purpose in my healing to entertain this idea, so I have moved away from it. Every day has physical pain in it, the question is at what level. The reason I spend 20 hours of every day in horizontal position is the pain that emerges through the body: the neck, shoulders, spine, hips, legs and head…… It can be a whole body ache or a more isolated ache. If I dont spend 20 hours in the horizontal, the pain is excruciating together with the other symptoms.

Is it muscle pain or is it the inflammation of nerves sending signals through the body? Or is it both and more? I never have the necessary concentration to read the research to understand the anatomy of what the scientists are finding. I can only go by how I feel my body. I know my body well after a lifetime working as a dancer, choreographer and at times a dance and pilates teacher. Sometimes its like the ache you feel when you as a normative bodied person has the flue. Then there is the pain of tingling in the nerves of the mouth, the whole head, the jaw, the eyes and more. The muscles attached to the whole body, so I guess in that way I can with certainty explain it as a ´muscle pain´.

I wanted to dance in the ocean during the sunset here in Ecuador, but my body didnt allow me to execute any energetic movements. The muscles have no force and power to them and for moments an utter sadness fills me as this longing to dance full out through my body is real. I regulate this feeling of longing and I cant allow to visit the feeling too much. Its just sad not to be able to physically dance. I could pose carefully in the water, and I thoroughly enjoyed the thrill og the waves hitting me, the surprize of not understanding the pull and force of the wave. Photo: Per Rutledal with Kristine Nilsen Oma

Unrefreshing sleep

Unrefreshing sleep is one of the MECFS symptoms.

Unrefreshing sleep has had different variables in my experience, but the consistent factor is that no matter how well I sleep I never find myself refreshed from sleeping. I always wake up extremely fatigued. Fatigued is not the same as tired. Tired is something everyone feels at times, as an MECFS patient the fatigue has a completely different dimension to it. I urge you not to compare your tiredness to an MECFS patient´s fatigue. It is not the same. The fatigue in MECFS is constant and it never goes away. I cant relate to claims that compare this to depression or other mental illnesses/imbalances other than the fact that if I am not in a good place mentally the fatigue gets worse.

Unrefreshed. Constantly in a daze, never fully present, gravity pulls to the horisontal, not managing to fathom whats going on in ones surrounding with any precition and constantly needing to rest.

The more I sleep the more tired I am. The less deep I sleep the more hyper I tend to be, its like an adrenalin kick. But I know being led by the adrenalin leads to a physical crash and Post-exertional malaise. I take good care of following routines when it comes to my sleeping time. And if I dont sleep, I stay in bed longer to make sure my body doesnt use any physical power.

Are there any benefits to unrefreshed sleep? On a deep level there is the benefit of developing understanding about sickness that has the potential to develop empathy towards others with similar challenges. On a creative level, it makes one truly human and as such people tend to relate more to you as a human being. Unrefreshed sleep is part of a circle of symptoms that all feed into each other. If I get a good long night of sleep, I get more tired, yet the body have more capacity to push through. But pushing through makes all the symptoms worse, and an endless circle of the different shades of fatigue follows.

I would say the benefit of unrefreshing sleep is not so much in being unrefreshed but in the appreciation of the clarity of focus when I can find it.

Blending in to the roof of the house I live in Ecuador on a morning with particularly unrefreshed sleep. Constantly searching for the dance in each moment and what the MECFS symptom ´unfrefreshed´ can offer the dance. Photo: Per Rutledal with Kristine Nilsen Oma

The benefits of having problems thinking

Problems thinking (A typical ME/CFS symptom: Having problems thinking with ME/CFS comes from lack of physical stamina in the way I understand and experience it)

I had a teacher in choreography who told me I had a genius mind.

I had another teacher in secondary school who later in life told me she was disappointed I was a dancer, as she thought I should have become a doctor (I assume she thought I was head smart).

I had an affair with a man that said I certainly didnt have a problem with thinking too little.

I am proud of the marks I got during my studies of choreography where we had to write numerous reflective and research assignments.

I had periods in my life where I was over analyzing everything.

Its safe to say that judging historically I was very much a thinker, with potential for intellectual endeavor, had I chosen that route for myself.

I love to think. So when I have problem thinking due to ME/CFS illness its not easy to recognize myself.

What are the benefits of having problems thinking?

Having to let go and trust life. Let time be. Let time run its course. Being in the moment and just feeling ´what is´ . When I have problems thinking, I cant control what I think. Thinking becomes instinctual and all sensory is heightened. Having problems thinking can be nice when I have to rest and be a zombie to ease the various ME/CFS symptoms, when I just breathe and time has to pass for me to rest enough to find my thoughts again hopefully. In this way having ´problems thinking´ can be a bonus.

Dont confuse having problems thinking with problematic thinking or thinking of problems. The ME/CFS illness I live with cant be changed through willful mental activity beyond finding deep rest. With deep rest comes the capacity for constructive thinking. #StopRestPace

The symptom of having problems thinking in ME/CFS illness is important to take seriously, as much for the patient as it is for the people around the patient. It means I have to be patient with myself. And it means people around me have to be patient with me. Because the mind doesnt work fast, in the worst PEM periods it hardly works. So the moment I am impatient with myself I get worse. And the moment someone else doesnt have the patience to listen or explain something carefully, I get worse.

Please remember that patience is in and of itself a great challenge and that it often holds the key to breaking through a seeming impasse. —Daisaku Ikeda“Blending into problems thinking on a bad PEM day” Photo: Per Rutledal with Kristine Nilsen Oma

What are the creative benefits to cognitive exhaustion?

Cognitive exhaustion

For me the experience of this particular symptom within the ME/CFS illness is best described as when all thoughts are muddled, and there is no overview. On top of the lack of clarity, feelings starts to interfere and the feelings like to believe they are in the right. Feelings are important and having cognitive exhaustion can be a particularly intricate, intense and awful experience.

I have noticed through my dreamwork as a practice, that the mental exhaustion gives me lucid dreams that opens images and fantasies that are close to hallucinations. I have befriended this state, I am curious to what it offers of imageries, and it becomes in itself a creative tool to the extent I also get my deep sleep, my rest, my horizontal, my time alone…..when mental exhaustion is all there is beside all the other physical ME/CFS symptoms, life is hellish. Cognitive exhaustion can only be a creative tool coupled with lots of mindful care and willing determination to see it as such. Mind you, I have lived with this illness for over 11 years, and I didnt always have the capacity for this point of view. This emerging wisdom I also find to be a benefit as it has forced a deeper look on life, both as an artist and a human being. I always need to #StopRestPace

I am slowly starting to see how utilizing my dream work and cognitive exhaustion can contribute towards creating part 3 of Karantena #millionsmissing on the international ME/CFS awareness day. At least its an idea I am presenting to myself, as I am aiming towards developing awareness through my slow process in creating the work.

“Blending in” a rock. Photos: Per Rutledal with Kristine Nilsen Oma