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Article: ME/CFS - Myalgic encephalomyelitis / chronic (or postviral) fatigue syndrome

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Living with ME/CFS


Living with ME/CFS

I am just one of the millions of people in our world living with ME/CFS and it's #MillionsMissing week - read about Parents and Children Missing from their Lives due to M.E.

Myalgic encephalomyelitis (also known as chronic or postviral fatigue syndrome) is a multisystem illness that affects your entire body and the nervous and immune systems, including your brain.

Typically you suffer from flu-like symptoms, postexertional malaise, insomnia and cognitive impairment. During periods of enhanced physical or mental exertion your symptoms worsen.

Depending on the grade of severity you can be or become house or bedbound, living a very small and limited life.

Headaches, fatigue, severe exhaustion, brainfog, recurrent infections, irritable bowel syndrome, feeling feverish and generally unwell as well as nerve damage are all part of my daily life.

Doctors had no idea what was wrong with me and urged me to keep pushing myself to get better.
My own will and determination to achieve goals meant that kept on training and thinking positively.
This made my condition worse.

I am still the same human being, love life and proudly watching my son grow up☺!
We laugh and have fun times yet I need lots of rests. I am his caring mum and always will be here for him.
Like a tree that is firmly grounded he returns to me from school and after his holiday adventures with my mum and family, telling me excitedly about his achievements.
I am so proud of him!

I don't miss the stage.
I don't miss the media attention and limelight.
I don't even miss the gym workouts anymore.

Living with ME/CFS

But I miss visiting my family abroad.
And I miss the energy I once had, that seemed endless... the old me.

My life may have become small. But seeing the beauty and miracles in details most people aren't even aware of makes my life a better place.

I struggle mostly when I have to hold long conversations.
I get frequent migraines after too much brain activity.

Although all the millions of us live with ME, we are all still very much alive and have dreams and passions locked away that will always be our source and force to keep us going.
Yet medical research is far behind where it should be and understanding of our daily struggles is rare amongst most GPs.

Last year I was fortunate enough to find a specialist team in Switzerland.
After more than 4 years of suffering from many symptoms no doctor could understand or help me with, I feel lucky now to know I am not alone in the fight for more UNDERSTANDING of ME/CFS.

We need funding for future research and we need the medical professionals to aknowledge that this disease is REAL, despite not yet having the medical evidance (bloodtests, MRI scans etc.)to prove it.

Millions of people are missing out on the life outside their homes.
And the world is missing out on talented, passionate and enthusiastic people to share their knowledge, to make this World a better place.

So i will continue doing all I can - even from my small yet precious world - and I have faith and hope, ME will one day be better understood.

I love working with healing crystals, listening to piano and harp music.
I meditate, use affirmations and practise healstreaming methods when my energy levels allow it...

Love,
Tanja

As featured on Parents and Children Missing from their Lives due to M.E. (see link above)

Before ME/CFS Living with ME/CFS

I am a single Mum with ME and Asperger Syndrome. I was also a World Fitness Champion before getting ME.
Tanja | Schweiz, Wädenswil

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First published: 8 May 2019, Photos: Tanja Baumann

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