Tuesday, January 17, 2017

The fear of loosing everything you know

'Fear is like a fog; it spreads everywhere and falsifies the shape of everything.'

John O’Donohue - Anam Cara


page from Into the Light by artist and writer Corina Duyn, showing a tree covered in fog and a quote about fear
page from Into the Light 


There were many times where I experienced Fear while going through ME/CFS.

FEAR associated with deterioration

In the early years, there were so many strange symptoms appearing. Sometimes on a daily basis. Suddenly being unable to walk properly. To coordinate my movements. To sit up and talk at the same time. A sore throat but no fever.  Pain. Excruciating pain.... (to name but a few). 
Yet another symptom appears and you don't know if it is ME/CFS related, or something else, and should also be concerned about.
Throughout the first decade I ended up in hospital on many occasions.
Severe unexplained headaches, with suspected tumor on one occasion, stroke at an other, meningitis...? A bad dose of gastroenteritis - for others a 'one-day-bug' made me so ill that I became severely dehydrated, even though I drank water all day. I was brought (yet again) to hospital by ambulance. I lost kilos in days. As a result I could not recognize myself in the mirror. In hospital I was suspected to be anorexic. I was not. I was just very very ill. I love my food... 

Fear too by loosing of mobility... will I ever walk again? Can I have shower today, or will that make me more ill. Fear of never seeing improvements. Ever.
Fear of dying. Fear of death. Fear I would fall through my bed as my body felt so heavy. Fear of dependency.

These are just a few thoughts that came to mind. The real list is unfortunately much longer.

The not knowing what is happening

ME, (and I am sure many other illnesses too, but I can only write from the ME/CFS perspective) bring this huge amount of unexplained symptoms in our lives. The not knowing what is happening, who to turn to, who can help us, who will understand, all bring fear.

Feelings of loosing control over every - thing 

Having a body which stops conforming to all we knew can feel like a complete loss of control over our lives. Our brain play tricks. We loose the ability to read, to write, to understand a conversation. Loosing one's independence. Having no control over what is bought in the shops, what we eat, when our house is cleaned, when we see our friends. If we still see out friends...
The list can seem endless. Which medical person to turn to, where to get information. Will I be believed. Will I be told that it is all in my head ...
Having to deal with a ineffective health system and having to wait for years to get test done to rule out other diagnosis. The fear that this waiting brings is hard to cope with.
I had years of slowly progressing in the right direction, but only to get very ill again five years ago due to another viral infection, and most likely also because of the onset of memo pause. The fear with having to go through the illness yet again brought its own level of fear. I felt I was loosing control over my life, over everything, again.

I do not want to give up. Or give in 

Yet, I do not want to give in. I do not want to give up. I do not want to give the power over my  life to illness.
I learned to work with the illness, but not make it my life. We can live together. Make deals. Learn to negotiate. 
This is not something that comes easily. It took me years.
Also, once the negotiations are made, it does not mean that all is rosy. New symptoms will still come. Some ME/CFS related, others are not. I had my brush with cancer scares. And although thank goodness all turned out well, the surgery and the fear still made its impact known in my well being. Temporarily. 

But as the very wise John O'Donohue shares with us in Anam Cara: 

Fear is like a fog; it spreads everywhere and falsifies the shape of everything.


If we manage to look beyond the fear and truly look at our lives, at our circumstances, there is a possibility that the fog will lift and we can yet again see the beauty in our lives. With different eyes perhaps, but there  is still beauty to be found.

Be well my dear, brave friends.

Links:
  • The image is a page from Into the Light  available from my shop
  • Details of John O'Donohue's book see here


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