Mobile note 30th July 2016 at 00:33 am:
I think I'm healed... I don't want to tell anybody. Because I can't prove it yet. I just believe it, in my own "naivety". I've believed it so many times before, without being right. But right now I don't care. Because one day I will be completely healed, and it might as well have happened today.
I wrote this note late in the evening of 29th July 2016, as I sat there on my couch in our Airbnb apartment in London – after three full-packed conference days – noticing how my body felt so different, so strange, so calm, so... normal.
Now I'm going to take you with me on my escape journey from the ME condition I suffered from for 3,5 years. First, let me describe to you how my life was up until that special evening when everything changed.
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| https://kavlifondet.no/app/uploads/2016/12/ME-forklaring.jpg |
FACTS ABOUT ME:
ME (myalgic encephalomyelitis) or chronic fatigue, as some call it, is a condition which is subject to a lot of research nowadays. A committee from the medical institute of the United States (IOM) has suggested to rename the disease SEID, which stands for systemic exertion intolerance disease. That name basically explains how this condition feels like: All kind of exertion, both physical and cognitive, has a negative effect on the body, because the ability to recover is severely weakened.
A research team from Haukeland Hospital has been able to locate changes in the blood of ME patients. Their research shows that the power station of the cells, the mitochondria, does not function as it ought to: its ability to produce energy from carbohydrates is weakened and abnormal amounts of lactic acid is stored even from mild exertion. (https://kavlifondet.no/2016/12/ny-studie-om-sykdomsmekanismer-ved-me-fra-forskningsgruppen-i-bergen/)
An everlasting flu
When somebody asks me how it feels to have ME, I give them this thought challenge:
Imagine you’ve caught the flu and feel feverish. While you are at your worst you are not able to do anything, and every kind of activity only makes you worse. The only thing you long for is to get proper rest and recovery. Exercising is out of the question, that will only slow down your recovery process. You even lack the energy to do things that demand a lot of brain activity. You easily get cold, your thinking is slow and your body feels ill.
We are designed to decrease our energy levels to a minimum whenever we’re attacked by a virus, so that the body can use all its strenght to defeat the intruder. Less important body functions will not use the energy they normally require, like body temperature regulation, memory and cognition. The body actually forces you to stay in bed while it sends white blood cells to fight the disease. And after a couple of calm days you start feeling better.
When I first got ill it was so severe that I had to rest several months before I felt any better at all. When I began to understand the relation between exertion and fatigue and managed to reduce my activity level to a minimum, I managed to feel better after only a week’s rest. During good and stable periods I’ve only had to rest a few days, and felt free from the flu symptoms most of the time. That has required a high amount of self discipline, because only a faint exertion of any kind was required to bring back the symptoms again. With this in mind I hope you can begin to imagine what a limited life I’ve been living for several years, where work and too much socializing have been out of the question.
ME for me is like a long flu that I never really recover from and that strikes me again and again as a result of only a small amount of exertion. Since there’s no cure, the only advice the doctors can give is how to manage to live with the disease in the best possible way, and how to get more stable periods by being aware of what you do in your daily life.
So there I stand, only 30 years old, with the future ahead of me, and I wonder how to keep my spirits up for yet a new autumn.
Living on social welfare isn’t exactly my first choice, but it’s the hardest job I’ve ever had: working to create a manageable every day life that brings happiness when you only function 30 % of what you normally would. It’s a full time job with no days off, no evenings or even a free weekend. Being ill this way should never be compared with having a lot of spare time. Those short periods you manage to stay up are eaten up by all the chores you simply have to do, like making food, showering etc. And more joyful activities are stealing from your energy reserve and have to be repaid by resting and resting even more...
ME is a nightmare you’d wish to awaken from, but after a year or two you realize that the dream is real, you are already awake. This was my life from close up to my 29th birthday in 2013 until the summer of 2016 when I was 32.
Diets, thought control, placebo and other recovery methods
At first I was quite optimistic. Of course I would be well soon. I only needed proper rest, better stress relief, optimizing my diet, a calmer mind and some quality rest, and then I would, with the help of God, get well soon. The fact that ME is a diagnosis that even the doctors in Norway don’t know how to treat, wasn’t on my mind. Of course I would manage to find the hidden recipe!
I was determined not to throw away my money on undocumented stuff, because there’s a whole lot of people out there who cost your shirt and can fix “all” your problems if only you are willing to pay enough and to repeat the treatment an x amount of times until you get totally healed.
And if you don’t get well, you must have done something wrong the first time and should most certainly try another expensive treatment program. Yeah, right!
I told myself that if I’d experienced getting well from ME and had found the answer for all ME-patients, I’d done whatever I could to spread the word to others as cheap as possible. So all the businesses claiming to have an over-priced cure for ME did not appeal to me.
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| ME mastering course at Aker Hospital spring 2015 |
Therefore I followed cheaper methods like activity management, the 30/70 rule (don’t use more than 70 % of your experienced energy), eating as healthy and blood sugar-stabilizing as possible, and I also practiced different relaxation techniques so that I didn’t just lie there in bed assuming to be resting, but actually managing to calm down my body and mind. I won’t go into all the details, but I can say that I tried as well as I could to read, learn and test out methods that could work for me. Some periods I was very dedicated, other periods it was harder for me. But at least I had faith that I would be able to manage my life so well that my body would recover and be restored to a normal energy level again.
According to the medical experts at the ME mastering course at Aker Hospital, which I attended during spring 2015, these methods help stabilizing the illness. This also became my own experience. But it didn’t make me well.
In my better periods when I didn’t feel the flu symptoms I could still only do a minimum level of activities without worsening.
On several occasions I truly believed that I was cured, or at least on my way to be, typically during periods where I had rested a lot and tried to “do everything right”, or after a very inspiring Christian meeting, where I thought to myself, that “now the illness really is disappearing”.
But not even the placebo effect was on my side… I use to say that if one can heal oneself simply through the power of the mind, I’d be well a long time ago! But to believe that you are healed, can actually be harming for seriously ill people, because of the small margins of worsening by exertion. So, no matter how much I tried to be determined and do the right things, disappointed I had to realize that when even the doctors aren’t able to cure ME, maybe it’s not that strange that I can’t cure myself.
Those who manage to cure themselves …and the rest of us
Through my membership in several different ME-groups on Social Media I have read about a number of methods that supposedly have helped people get better or totally well, and I am happy that individuals find their way out of ME. At the same time I really feel for all those others who bump into dead ends over and over again during their search for recovery.
- If you are not willing to try whatever it takes, then you really don’t wanna be well, is one opinion I have read people express.
- If you tried this method, but didn’t get well, then you didn’t do it accurately enough or long enough, is also a reoccurring theme.
For each and every success story there are thousands of hopefuls that have tried the same without succeeding.
Is there any hope for us who don’t succeed? Us who try and try and do as well as we can, but who fail over and over again? And what about the skeptics that haven’t even tried fermentation or the nettle soup diet? Is there hope, even for us? Until science progresses beyond the limits of the knowledge of today, one thing is sure: A miracle is indeed needed.
My travel to London – to freedom
Mobile note 1 August 2016 5:30am:
«I can’t comprehend this. My body isn’t like it used to be. Throughout yesterday I’ve been walking around and thinking: This is not the way my body normally reacts. This is unusual. Weird!
We woke up early in the morning at 4 to catch the bus that would take us to the airport train. That is to say, I never woke up, because I didn’t sleep at all. I was so excited after all the impressions from Saturday. (…)
I don’t want to sit in the wheelchair on our way to the bus, I roll it myself. Travel days are normally quite stressing to me, I get really shaky and on high gear. But not today. (…)
Then I’m on the bus. And I wonder about how my body feels. Because the body remembers. It KNOWS how it SHOULD feel after traveling. It KNOWS that it should feel different. Where is the heartbeat? The tickling inside each fiber? That restless feeling that occurs because of the body’s disability to calm down? Where is the adrenaline rush? Where is the feeling of having traveled a whole day? This doesn’t feel normal. Well, maybe that’s how it actually feels: Normal!
Because, of course I am tired, I am sleepy, I long for bed. But all those who have ME, know it’s not the same. They know that even on a very good day without flu symptoms, still the body reacts to this kind of exertion in a way healthy bodies don’t. ME-tired is not the same as normal tiredness. It feels different. And that’s exactly how it doesn’t feel now! It doesn’t!»
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| A wheelchair is a good aid when you travel with ME. |
Five days earlier:
Roger rolls me in at O2 Arena in London. I’ve brought my wheelchair to get enough rest, so that I can enjoy the three-day-long Christian conference, Hillsong Conference London. Two years ago we also visited the conference, and I still remember how exhausting it was to stand in line, all the noise, all the waiting. And how bad I felt the day after the conference, when we wanted to enjoy ourselves and go sightseeing in London, and my first activity that day actually was to locate the nearest green spot to have some rest…
This time we get fast track access to the arena because we have reported in advance that I am disabled. I’ve learnt my lesson and done thorough preparations this time. The guy who helps us with the disabled card, a cool, tall Brit with an emo-haircut, asks Roger carefully what is wrong with me. As we leave him to enter through the gate, he suddenly turns over to me and says:
«We’re gonna believe God for complete healing for you this conference!»
And I say: «Aaaamen!», because I of course want to be healed, and one day it has to happen!
We arrive at our seats, and luckily our group from OKS (Oslo Christian Center) has got its own lounge high up in the arena, with sofas behind the seats, so that I can lay down and rest whenever I want. What a blessing!
A man approaches me and gives me a note. He says they have a prayer team that prays for requests the guests may have, so if I have any, I can write them down on the note and they will pray for it.
I write that I suffer from ME, and that I want to be completely healed at the conference. Because that’s what I’ve been praying for ever since I got ill: To be well again. So they might as well join me in prayer for that.
The conference starts, and my little sister Ida is in the choir that sings in front of tens of thousands of people from different denominations from all over Europe. The music is tremendous and I’m enjoying myself big time.
The conference consists of a lot of music, praise and worship and different people sharing their experiences, their faith in God and preaching to us. I get a lot out of what they say, it fits my situation very well and I think to myself that I can really live long on this when I return home. This summer has been so heavy, I’ve been much more ill than expected, and I desperately need some inspiration to cling to, to be able to enter the coming autumn with hope for a change.
What do you want me to do for you?
On the last day, 29 August, the morning session is held by Erwin McManus. He talks about how he, when he was new to faith, didn’t know what you “should” and “shouldn’t” ask God for. He therefore told a girl who was about to lose faith that she could just ask God to show his existence to her by praying for something that meant a lot to her. So she said: “I want it to snow!” The problem was just that it was in the middle of the summer! But Erwin prayed, and what happened? It started snowing!
Erwins message is about our view of God; we often see Him as a one-way communicator, someone telling us what we should and shouldn’t do. But God wants a two-way communication with us. Erwin tells a story from the New Testament where Jesus asks the blind Bartimaeus: “What do you want me to do for you?” Of course the blind man wants to get his sight back, so Jesus prays for him, and he gets healed.
At the end of the sermon Erwin McManus challenges us: “What do YOU want Jesus to do for you?” Erwin says that we often underestimate how much joy it brings God to hear what’s on our hearts, and how it pleases our good Father to actually give us what WE want him to do for us.
After this session I find it necessary to have a hard talk with God.
Now I’m really gonna let God know what I want him to do for me. I’m so tired of being ill, so in my desperation I utter these words to him:
– God, if you really stand before me now and ask me: What do you want me to do for you… Like, if you seriously stand here now and ask ME that question, then I’m gonna tell you what I want: I want a miracle! I don’t want to get well during a process, so that people might think it’s only because I’ve changed my diet or lifestyle or something. I don’t even want to go on that treatment travel abroad that I planned in October, because I earnestly don’t think I’m gonna get well from it. To be honest, I want a miracle, so that it can be visible for all my friends who don’t believe in you that it’s you, Jesus, who has made me well! And I want it to happen at this conference, because that guy surely said to me that we’re gonna believe God for complete healing during this conference! And if you’d planned for it to happen any other way, I even see in the Bible that when your servants pray to you, you change your plans. So this is what I want you to do for me, Jesus! I want a miracle!”
Enough faith?
The day goes by, and when the evening comes, I’m so tired that I don’t have the strength to sit with the
The pastor shares a story of how he as a young man manages to drop into a Christian conference, and how the preacher experiences getting a message from God that there is someone in the room who is in this and that situation. Her details fit exactly with Chris’ current situation. He experiences that God sees him at a conference with 10 000 other people, and that turns his life upside down.
I say to God: - Here there are 20.000 people, but you see me!
Then the pastor starts to talk a lot about how you cannot expect to receive anything from God without having faith, and that you see in the Bible that all those who received miracles from God, had faith. He says that you can not just wish for things to happen, you’ve gotta believe God for it.
To hear this annoys me. For three and a half years I’ve put my trust in God for healing, and still nothing has happened. Does he mean it’s because I don’t have enough faith? But what on earth is faith then, if it’s not that what I have? I get so frustrated and discouraged. I’m fed up with preachers who focus on the level of faith you need to have to receive from God, although I’m sure that’s not what this preacher really meant.
I, who only a few minutes earlier was so exited, now feel very down, because I am so tired and fed up with my situation. What more does God want me to do?
- God, this is not the way this evening ought to end! I mourn to God.
- Can you help me, Holy Spirit! Because I am so tired and confused and I don’t have the strength to fight all these conflicting thoughts right now.
Suddenly the preacher says:
«You´ve gotta listen to the voice of belief inside of you and silence the voices of unbelief around you!»
Then I get a real aha moment: These thoughts about me not having enough faith to be healed, that I don’t have the right revelation on how to receive healing or have misunderstood something and so on, these thoughts don’t come from me, they come from the outside. I actually don’t agree with them. It’s not meant to be difficult to receive gifts from God, he gives them freely because Jesus paid the price at the cross, and I’ve believed this and held on to it all the way.
Then I decide to silence these “voices of unbelief”, and I simply speak out:
- In Jesus’ name, be silent!
And in that very moment it’s as if all discouragement and frustration suddenly is shut out, and it gets totally quiet. All those difficult feelings are gone and I find myself sitting there in wonder over the sudden change of atmosphere in the room. When this negative trail of thoughts disappears, I’m left with my simple faith in God, and I feel so strong on the inside.
I feel urged to put into words things that start to bubble up inside of me. It actually feels as if Jesus himself has risen on the inside and asks me to confess his truths about me, so I say everything that comes to me:
- I am a woman of faith, I’ve believed God all the way, so it isn’t true that I don’t have enough faith! That’s just a lie! And even if I don’t have enough faith, I have “the author and perfecter of our faith” on the inside (a title of Jesus in the Bible), so even if my faith weren’t enough, His faith is by all means enough!
I feel so powerful, as if Jesus is standing here and saying that it’s enough now, now my daughter has suffered long enough, and now it’s time for her to have what rightfully belongs to her.
The ME leaves the body
I believe that when Jesus died on the cross, all sin and evil was laid on him, and he received punishment in our place, so that we can go free and live for all eternity together with God. I also believe that Jesus, according to the Bible, took every disease and affliction, so that no evil shall have dominion over us. Therefore, when we get ill or experience evils in our lives, we can pray in Jesus’ name, because his name conquered sickness and death as he rose from the dead. In his name all that’s not according to his will must flee. That’s the authority given to us, that starts working when we invite Jesus into our hearts and our lives and receive his forgiveness and goodness. There’s nothing automatic about seeing his will be done, because evil holds great territory in this world, but these are areas we can conquer as we hold onto his promises with patience and believe in him.
You don’t need to be a Christian to experience a miracle of God in your life. Jesus asked us to lay hands on the sick and to pray for all people, so that they can be healed and experience that God cares for them. This applies regardless of faith, religion and outlook on life.
Many believe they don’t have enough faith to invite Jesus into their lives or receive answer to their prayers and miracles from him, but that’s the evil one who tries to keep us from all that God wants to give us. This becomes so clear to me, as I sit on the couch and observe all discouragement and confusion disappear, and notice how the voice of God stoops through the silence and puts everything in order once and for all. And now this silent, strong voice asks me to do yet another thing: I shall speak to the sickness, just as Jesus used to do, and command it to leave in His name.
You have no idea how many times during these last 3,5 years I’ve prayed and taken authority over the disease in Jesus’ name. And how weak I’ve felt when the ME still hasn’t let go. Where is the power of the name of Jesus? It ought to work! One day it has to work! I’ve seen and heard so many get healed instantly, from bow legs and tumors, to broken arms - and even from ME. I attend a church that regularly practices prayer for the sick. This isn’t a phenomenon unknown to me. So why does it happen to “everyone else” and not me?
The disciple Peter had been fishing the whole night without getting anything. Then Jesus asks him to go out again. - Jesus, we have tried many times, and it hasn’t worked. “But at your word I will let down the nets,” Peter says. And then they go out one last time, and the nets burst with fish.
I decide to pray again, on Jesus’ word. I say out loud: “ME, in the name of Jesus, LEAVE, and NEVER come back!”
Then something very strange happens. I see some kind of a vision, a white cloud departing from me. Then and there I just know that it was my sickness leaving, never to return again. I can’t explain it, but I have a conviction in my heart that Jesus gave me that sight so that I could know I am actually healed and do not have to fear ME anymore.
Has something really happened?
Diary Sunday 31 July 3:30 am:
«I wonder if I should tell Roger now, but even if I want to, I’m not sure. He probably will believe me, but at the same time he will warn me not to take completely off, just in case. (…) Right now I don’t want to feel that I have to explain myself, prove anything or convince anyone about the miracle, I just want to rejoice over it and let the miracle prove itself. So I decide not to tell, and let him rather discover it himself.”
I’ve told Roger before that when you have ME and receive prayer, you never know then and there whether you really have been healed, you have to give it some weeks or maybe a month. It could be that you THINK you are healed, only to fool yourself. First it has to be tested out, and then you can know.
What’s funny now is that I actually DO know that this season of sickness is over, and that’s not the kind of knowledge you try to convince yourself to believe in by thinking really hard and long. It feels more like a supernatural voice telling me that.
What I don’t know is whether the healing has manifested physically in my body yet. I notice I have the energy to stand up, and as the worship band begins to play, I walk out to the tribune where the others are. I do have the strength to stand there and sing, and strangely I find myself thanking and honoring God for the miracle I haven’t gotten confirmed yet. That’s so weird. It’s like I just know.
Now the last song is being played, it’s that kind of a jumping up-and-down song. And I notice I have the energy to jump! So here I stand, jumping and singing along. Roger is jumping too. He stares a bit surprised at me to begin with, but then he just sings and acts as if all is normal and well.
Then the conference is finished, and it’s time to sit down in the wheelchair and get rolled out. I do have the energy to walk, but in fear of being seen as someone who’s faked themselves to a wheelchair fast track, I sit down and let Roger roll me out. Now THAT feels fake! As soon as we’ve come out of the arena area, I get up and roll the wheelchair myself. I do have energy! It’s so strange.
We get on the bus, reach the apartment we’ve rented in London and get indoors. Roger sits down and watches TV, and I find myself a comfy seat in the sofa nearby to check out how my body is feeling.
Then I notice it: My body is totally calm. Not shaky at all, not tired to death, not like it should be feeling after three days of conference. My body has changed. It really has happened!
Next day – so abnormally normal
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| The first picture of me after I got healed, at Madame Tussauds. |
From my diary:
«I wake up and feel calm, recovered and ready for a new day. With all the strain from these last days, I should either a) be so exhausted that I just want to lie in bed and sleep on, or b) be so full of adrenaline that I wake up early, like now, but feel shaky and filled with restless energy. On the quite opposite I feel totally normal.”
I am not tired, not tense, and I have no problem making breakfast after taking a shower. “
«I insist on not bringing the wheelchair along downtown (London), even though it’s a bad idea for an ill Solveig to leave it at home. Roger tries to argue a bit with me to make me bring it along anyways, because he knows how this normally plays out. We’re gonna spend a day in London. And that didn’t go so well two years ago. Then I remember lying and resting for a long time on a green patch before we’d even gotten into town.
And with this very summer in mind, where I’ve been so ill and had such low exertion tolerance, the idea of not bringing the chair is really stupid. After all we’re visiting Madame Tussauds, we’re gonna stand in line a long time (1,5 hours, it turns out) and walk for a long time (we spend 1,5 hours inside the wax museum), and after that we walk a long distance to look for a restaurant, followed by a walk to the Selfridge shopping mall where I buy some clothes. For those who know me well, and definitely for Roger, all these things are normally quite bad for my health, even on a good day. I can not stand in line for 1,5 hours and then be able to enjoy the wax museum afterwards. That’s actually not possible for an ME-ill Solveig.
But I do! Of course I get tired now and then, but not the ME-way, just as a normal Solveig would feel.
Throughout the day I feel urged to share some of that joy with Roger, through smiles, kisses, caresses a.s.o., because I am not to telling him anything yet. And I wonder what’s on his mind.»
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| Saturday evening after the shopping: I don’t look too exhausted, do I? :D |
«When we go to look for a place to eat after these three hours [at Madame Tussauds], Roger says that he is worried about me, but I tell him everything is all right. That’s the only time he utters anything about ME that day.
And in the evening when we come home, and I DON’T lay down immediately, but start packing and fixing things for the departure, he doesn’t comment on that either.”
«The only thing not going so well is sleeping. I’m so pumped with impressions and thoughts after this day, and we’re getting up at 4 am to catch the plane, so the body is by no means able to fall asleep.
Now it’s 3 o’clock… Therefore I write in my diary. So that I get my thoughts on paper.
How is it to feel well?
Strangely enough it feels quite normal, as it should be. Yes, I’ve been extra glad and cheery today. But I have not taken off, I’m just rejoicing quietly, thinking about how tired I actually ought to be. Checking how my body feels, how it is able to handle exertion without me getting afraid of the consequences.»
«Keeping it a secret for Roger, amuses me, because then it will be such a big surprise when he gradually discovers it, since it will prove itself. And I’m reflecting on the fact that I can not make this testimony about my healing public in a long time, because the nature of ME is this, that it will be proven in the long run if you really are well or if you’ve only had a good period. If people are to believe me, it has to have lasted for at least a month, preferably half a year. But I can not stay silent on Facebook THAT long. I’ll just post some teasers from my everyday life and how it changes. And one day I’ll drop the bomb. He-he!
Thank you so much, Jesus! Love you!»
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Note Wednesday 3 August 2016 22:37:
«Can you imagine how much a healthy person gets done? It was lovely to be able to hurry in the kitchen, not having to slow down the tempo as I was tidying. And it’s such a great feeling that it’s not exhausting to wash clothes or hang them up. Everything has become so much easier. Is this really how normal people live? They really should appreciate it, but I guess it’s impossible to understand how lucky one is if one hasn’t experienced sickness as I have. I do understand that.»
Note Friday 5 August
«Every morning when I wake up, I’m so fascinated by how my body has recovered during the night. Because when I go to bed, I’m tired and exhausted after the day, and my mind tells me that I’ve exceeded my limits this day and that I will notice the negative consequences next day. Then a wonder happens during the night: The body is resting, and it gets ready for a new day. It doesn’t turn ill anymore!
This Friday morning I went downtown with Roger. I was going to deliver a job application, but the office wasn’t open, so I had to send it via mail. But imagine: I can apply for jobs again! It’s so exiting. Imagine being able to go to work during the weekdays and make money! Imagine having a work environment with colleagues again. What a blessing it will be! What I dare think! I’m actually applying for work only a week after getting well. That would be madness if I weren’t sure I was completely healed. It fascinates me how quickly I feel ready for a normal tempo again.»
Diary Saturday 6 August 2016 kl 19:58
«Now I’ve been well for one week and one day! Still only Roger knows. Plus some random people I’ve met this weekend, like that lady at the Berg-Hansen travel agency who called me to check if I was sure I wanted to cancel the trip to the Dead Sea Clinic. And then there was a Romanian salesman and a Bible school student I happened to bump into. I so want to tell the whole world, but I understand that being well for only a week is not that great a testimony. Still it is really hard to keep my mouth shut, so I keep hinting to people I know all the time, and put out pictures and texts on Facebook showing how active I am these days. I’m curious if people are starting to wonder?»
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