ME/CFS - a permanent battle of your cells and why we're so much craving our peace

Maybe you're in bed in a dark room just this moment, while reading this text (using the few pacing units still left).
Perhaps you're using noise canceling ear pods, trying to stop this burning, sharp and permanent pain inside of you by helper like cool- or heat-pads whilst reading this.
Possibly you didn't eat or drink without help since days or the greatest you achieved was having a shower.

Every word, every movement, every bite and swallow may force your body to give in - and you along.´

Maybe you are "lucky" and the ME is not that worse, but anyway you know, the next little trip to the world outside (if the bench around the corner or the nice restaurant) may force you back to or to the sofa for days.

Perhaps today you lifted a bottle of milk out of your shopping basket and you're battling with burning pain not knowing where it begins and end since then, like I did today. 
And I am so aware of the fact, I am so lucky being able to move milk bottles at - because a lot of "us" are not even able to do this anymore. 

ME is an endless battle and fight. 

Not only a fight with all you may find between milk bottles and turn around in the bed - a fight in any way. Our cells permanently battle against something the science can't name exactly, not yet. But regarding the current state of researches they don't fight (anymore) against an intruder from the outside. The fight against themselves. The immune system unlearned to stop alarm / battle mode after the releasing infection. 

In an analogy all your soldiers still run around on the battlefield like crazy - furiously screaming, beating around. But, there is nothing to defeat anymore. They only destroy themselves. It is a biochemical war of attrition. 

It feels eaxactly this merciless. As if our body would battle against itself in wildest aggresion. All is screaming, loud, overstimulated and dysfunctional. 

How do we react to this sickness?

Well, as with the most sicknesses we decide, to fight against it. We want to f..k this sickness. We do NOT WANT it. 

All these emotions are important, pretty normal and huma. But, unfortunately they fuel the battle mode in our anxious system more and more and do exactly what we don't wish: They worsen us. 

So many of us know the result of all the doctor's visit and the diagnosis marathon before we finally got to know we suffer from ME. The most  persons worsened intensely by this.  

We all know: The only help is pacing, absolutely and consistently. Constitent REST. It's the try to create an external peace to effect our screaming body being in a neon-light-like fight mode. Lights dimmed, noises cancelled,  every stimulus to the lowest possible level.  

Because our cells fight and fight so much, so even the most ordinary scent, smell or taste, movement or word could cost too much energy, if we wish to avoid the wild soldiers to fight even more and even blinder and destroy even more. 

But, if we go into resistance against our situation (and this is understandable!) again and again, we cause exactly this to happen, on the biological level. This is what we name psycho-neuro-immunology (and don't be scared about the word *psyche* again, the context is very biological).

Short explanation: 

The resistance / fight against ME stimulates our Amygdala (anxiety center in our brain) -->  it recognizes "danger/life danger" --> Fight&Flight Mode --> Releasing of stress hormones --> Trigger of inflammation and pain chemicals --> we worsen 

 

In an analogy: We place ourselfs to the battlefield with a screaming Heavy Metal orchestra and a stroboscope and we do scream: "F..K! I want peace, so I will kill of you, if you don't stop right now!" I guess, we shouldn't expect the soldiers to be calmed down by this, lay down arms and unpack their yoga mat.

Regarded in a spiritual / religios way, fighting also is not the best way to end an unwished situation, most times it leads to the opposite result. 

Let's look, for instance, to christianity. (and the same you'll find similar in any religion). Christians know the principle of surrendering trustfully to god's will. This does NOT mean to be a marionette - it means to trust, to let go. 

In Christianity we know the beautiful Serenity Prayer: 

God, grant me the serenity to accept the things I cannot change,
courage to change the things I can, and wisdom to know the difference." 

And it does NOT matter now, if you are religious, spiritual or an atheist. Just reading this words offers the biochemical potentail to weaken the circle of fear - fight - worsening chemicals at least a little, little bit. 

That is, in religion, how the prayer releases spiritual change. By letting go and surrendering. Somehow, he exhales finally, after a long while of holding breath.  

Well, all of this reads and writes so easily and I could imagine you thinking now (furious?) PFFFF? Are you mad? 

I understand you so much! 💓

How could you ever stop fighting against something that terrible, while grieving for your old life, your old Me, while having to handle so much and not seeing any light at the horizon? 

It it is not easy. 
In fact, it is incredibly exhaisting and I tell you: It is not a Heal-it-all, no guarantee and at last it is a switch you touch and all will be fine again. It is not the pill to swallow and making everything fine again and it is not 5-minute-meal. It is a long and exhausting way. 

Two steps forward, one back, two forward, two back, three forward, two back. You got me. 

But maybe you could here and now - being exhausted by milk-bottle-wrestling or the chatting of your neighbours in front of your window or the stunt of pulling the blanket a little higher in bed  - search inside your self for a moment. And imagine how it could possibly feel if some of the screaming soldiers inside of you would stop for a second to fight and find peace. 

If you would try to find out what the word
PEACE
does to you, if you open your mind, body and soul a split second. 
If you imagine to end the fight. For a second at least.  

And this does NOT mean to stop hoping or having the purpose to get back to health! Oh no - purpose and hope are something very different than fighting. 

During the next weeks I will give you some insights that may help you to ensure a little breather for these fighting soldiers inside. 

But for today... I only wish you this: Listen to yourself for a moment, listen into your body and check what the thought of ceasefire or even peace releases inside you and your cells, your body and your being. 

And let it happen. And with this you will have done for your, your milkbottels and anything else so difficult, way more than you may imagine. 

Just try. Open your heart to the power of peace, and if only a single second a day. One breath. Without the expection of a miracle. 

Inhale. Exhale. And consciously leave the battlefied for a short moment. And embrace peace. 

 

 

 

My story

 A very warm welcome, dearest reader. 

Here, for the beginning, I wanna share my story with you, so you know about my background. 

I was the age of 17 when I suddenly got sick. I remember quite well - I visited a fair with some friends, was a nice evening. When I got home, I suddenly felt terribly. The next morning I had a terribly aching throat and - very strange for me - a high fever. 

My mother went to the general practionicer with me, who diagnosed a normal infection and - like usual in the 90s and 2000s - gave me a prescription for antibiotcs (the worst he could do, as we know today).

The high fever stayed anyway - for days about 39 to 40°C. I was so worn out, I've never been that sick. After a week it got a little better, but then I had an intense allergic reaction to the antiobiotcs, throwing me back. I was not even able to get out of the bed anymore. 
 
My parents went to another doctor with me - an internist - who said, this may be something "exotic" like glandula fever, maybe. He said, we may not know. But he gave me another antibiotic. I was very sick another five days, totally worn out in bed. Then, it slowly got better. 
 
The moment my fever was gone,  I got back to school. I was grade 12 and scared to miss too much. But I realised, I was not getting back to normal. Everything so exhausting. I remember, I had troubles to climb the stairs to level 2 in school, when lessons took part there. The next months I suffered sudden hear loss, stiff neck and one infect after the other. I was tired all the time. But I had a lot of stress (school and so on), so doctors said, that may be the reason. 

My normal life was not THAT limited - I was able to go to school and enjoy most of my freetime. But I realised my weakness when I did sports or was on tour for a whole day.  
If I was away with friends a whole day from dawn till dast, I felt totally done afterwards, sick  for 1-2 days. 

The next year one health issue greeted the next - gynecological, orthopedic, internal. All was explained by stress of graduation and private life. 

It kept going like this for years. Ja, a normal life was possible, as long it was a quiet life. It worked out like this and I never had the idea of being real and chronically sick. One always rated the single situation (me and the doctors). That I always missed the power and physical strength of a woman of 20-30 years was overseen again and again.  I myself sometimes realized, of course. But my life was not a kind of "aventure-holiday-wildwater-rafting"-kind, it was a "ordinary and cozy"-life. It was the holiday at the beach, not the hiking tour in the alps, and it was the nice BBQ with friends, not a night at the club. 
 
Of course, there were a lot of "states" - intestinal, hormonal, pain (a lot of pain). But all was explained again and again - allergics, IBS, psyche (of how often!), daily stress, wrong movements, too lesss sports... 

I learned living with it and stopped questioning. Of course I ran from Pontius to Pilatus, but any doctor said: "Comes and goes"... so I left it in peace. 

But round bout 10 years ago my life offered a new level of stress and I had a lot of health issues. My strength weakened mor and more and more and more difficult symptoms came up. It started with blackouts, terrible feeling of sickness, permanent infects, troubles with eating (and weight loss) and got more and more by the infections and the sress. I wasn't able to manage my daily life anymore. 

An ATP-Block-Test gave the result of ME/CFS - but almost nobody knew about this once. My general doctor knew about it and diagnosed it clearly, because of the tests, the results of the mitochrondium and the canadian consens. But I had to have differential diagnoses, so I had to visit other doctors. Those doctors only shook head and puffed: "This is not CFS!" Fatigue only shows up after cancer, they said, and my symptoms are not fatigue. 
 
I ran from doctor to doctor without success, but with the consequence that I weakened more and more by the constant overdoing with all these appointments and the sickness bloomed. At the end the result was again and gain "Psyche". I was a young mother, this naturally means stress, hysteric and "too much", they said.

At the end, I searched for help in the UK (where ME was better known) and my consultant made clear, I have to calm down my overstressed neural system.  

But how, if you have to work out in daily life and the persons around you are ZERO able to get what your sickness means? I asked for help and got it in parts... but then, I had a good day, went for a walk some minutes ... and the others stopped helping, because "you are fine again, if you can go for a walk". That I felt like dead afterwards, was gently overseen.... 

So, the way down was irrevocable. Not only because of the missed support - it was irrevocable, because I fought and fought against my sickness. I HAD TO be functional and strong! 
 
With this endless "being brave" and battling I fed the sickness exactly what she needed - my nervous system was in a permanent battle mode, my body burned out with the most simple movement (and no, I do not talk about psyche, I talk about natural over-stimulation, because one says *IT MUST NOT BE*)

After some months I wasn't able to get up anymore, had terrible seizures, blacked out again and again, lost (for minutes) abilities of speaking or moving. It was a hard time. 

Today I know I had glandula fever, really, with 17. This must have released ME, but it stayed moderate for years. Until this cascade when I was mittle of my 30s. 

Fortunately, I found a good doctor who stopped my way down. He gave complementary medical treatments and my body was able to recover, the inflammation slowed down, the mitochrondion stronger. I learned that Pacing was the Game Changer and my spiritual side guided me through the deep darkness of the terrible time back to a brigther life. And there came a lot of precious persons to my life, teaching me to leave the battlefield and turn to myself in love. To lick my wounds and honour my scars. So my nervous system started to relax by and by. 
 
With this, I slowly started to get better. SLOWLY. One step forward, one backwards, two forward, one backwards and so on. Snail-like. The paralyzing, the seizures and blackouts disappeared. What's left were a lot of symptoms, weakness, feeling sick and pain. 

I still am not healthy, far away, but I feel so much better. The most time of the day I still do rest. Pacing is the most important, but my life got back to a quality. It may be far away from a normal life... but define normal.  

I stoppped fighting, and with this - I won. You will read more about this here. 

CFS/ME is like a trip to hell, but it seems to have no end.

It is a dying life or living death. Like Grönemeyer sings in his german song "Tell me about tomorrow": "Because hell is a place without love - and so terribly silent."
 
But: In the stillness one can find some chances and if you accept them, you may find a way back to silent, calm but still worthy life. A life offering the right tunes. YOUR tunes, the important. 
 
Not to forget about love. I do not talk about love from around (it is important too!) but loving yourself. To find love for yourself in the middle of survival battle - oh my, this is so so hard! But it may be the only Gamechanger, like the Pacing itself. 
 
And in the end, it can not be hell anymore, when there is love, can it?

 Oh and yes - my, I know, this seems like a kind of phrase out of the fortune cookie. 

Let me tell you this: NOTHING of this is easy or making this sickness really bearable. No.
But: It IS a ray of light in the darkness. And this is able to lead you out of the dark valley, as hard the way may be.

It is possible.