Severe ME- awareness day 8. august

ME. Myalgisk Encefalopati. 

Sykdommen de færreste forstår seg på, har respekt for, eller ønsker å snakke om. 

Sykdommen de fleste tror kun er å være "sliten", og at det sitter i hodet.

Selv har jeg skaffet meg moped for å kunne utvide rekkevidden min bittelitt når jeg kan, men det virker som folk tror at nå kan jeg kjøre når jeg vil, hvor jeg vil. Det er så absolutt ikke sant. Jeg har enn så lenge kun kjørt frem og tilbake til butikken som er like ved, og må legge meg ned etter en sånn tur. Har du noen gang tenkt over hvor mange av sansene man bruker på å kjøre? Alt blir forsterket, så lyder, bevegelser, vinden og konsentrasjonen krever masse energi. Energi vi med ME ikke har. Jeg har moderat ME og klarer meg selv, men lever et veldig så ensomt og stille liv. Det visste du kanskje ikke når du ser alt det gode jeg deler via sosiale media? Det er fordi jeg fokuserer på nettopp de små gledene, for de blir uendelig viktige å holde fast i med et sånt liv.

Damen på bildet er en av de tapreste damene jeg kjenner. Jeg har aldri møtt henne ansikt til ansikt, men jeg har møtt henne via FB- som med så mange andre MEd- søstere og brødre. Der andre ikke forstår, prøver nettopp vi å forstå hverandre, backe hverandre opp, gi virituelle klemmer og humor i hverdagen. Den blir faktisk mindre ensom når vi har hverandre, og jeg håper vi en dag blir friske og kan møtes irl. Det er alles ønske.

ME er mer enn å være sliten, og damen på bildet har alvorlig ME. Symptomene hun beskriver har alle vi med denne sykdommen i større eller mindre grad, så det er faktisk mye mer enn å være sliten.
Ta deg tid til å lese det hun skriver. Håper det er flere en kun mine ME-venner som faktisk gjør det.

You're trapped inside your own body. You've lost your friends, your ability to take care of yourself, your independency. You're bedbound in a dark room with sunglasses and ear plugs. For years.

You've lost your life.

Severe ME is no joke. I have no idea how to explain what severe ME actually is to someone who doesn't have a clue. Most of the people who are open about their illness, to their friends, family and on social medias, have mild or moderate ME. You might know this illness is what we call an invisible illness. You might meet people on the street, looking healthy and fresh. People who've spent hours to rest ahead of that trip outside. People who'll spend days in bed afterwards.

But we are also a bunch of people with this illness who are not able to get outside at all. We are not around to tell friends, family or people who we should have been meeting with, about our reality. In fact 25 % of all ME/CFS sufferers are severely affected. Meaning they're house bound, relying on a wheelchair or even bedbound. Like I am.

Some people are so sick they can't tolerate any sound or light at all. They have to be tube fed. They can't move at all and need help just to turn themselves in bed. They can't talk. They are in extreme pain. And they are hidden for the rest of the world. Some of them die.

Some of us with this diagnosis die. Think about that for a while. How often haven't you heard, or maybe even thought for yourself, that ME is just being a little tired. That if we just get it together, we'll be just fine. It's all in our heads.

I tell you what. ME is classified as a serious neurological disorder. In this very moment chemotherapy is being tested - with great results from what I've heard - to help this patient group. When this illness gets severe it starts to affect so many aspects of your body, you can't even imagine.

I myself have over 30 symptoms that I'm dealing with every single month, week, day, hour and minute. I have severe muscle and joint pain, muscle weakness, cramps and spasms, gastronomic trouble, sleeping trouble, sensitivity to light and sound, extreme fatigue, cognitive issues, trouble with talking, disturbed heart rhythm, my lungs often collapse and I'm unable to eat food cause of the life threatening allergic shocks my ME has started up in my body. And these are just a little handful of my symptoms. I am very sick, but there are people who are even more sick than I am.

Can you imagine being 24 years old, having the last 2 years spent in bed watching your life pass by without attending to it at all? While having parents, a fiancé and home care nurses to take care of you? Dress you, wash you, sometimes even feed you and carry you. I bet you can't. You have to experience it yourself to understand. And I absolutely hope you never will. I don't wish this upon my worst enemy.

But what you can do is to educate yourself. Gain knowledge about this serious condition, and meet people with the respect they deserve. Maybe even share your knowledge with some of those stigmatizing people who spread fake rumors about this illness. Knowledge is power. And it's also the first step in the right direction to figure out what's causing this awful illness and hopefully find a cure.

I am one of those people in that 25 % group severely affected. One of those who are bedbound, unable to eat. Unable to take care of myself. But I am able to raise my voice through this post on social medias.

Tomorrow is the international severe ME day. And I raise my voice for myself, for all of us in that 25 % group and most of all to remember all of those we've lost to this awful disease.

It took me several weeks to write this post. Please don't let it be for granted. Take a 5 minute break from you busy life to educate yourself about severe ME. Or at least remember some of what you've just read here and meet the next ME patient in your life with respect and a bit of understanding. That's what we wish more than anything.

Thank you for taking the time to read this.
Love and light to all of you.

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-MG

Link til Graham`s Univers om du ønsker å følge henne.