Going on holidays in my front garden

I am a bit overwhelmed at the moment with all that is ahead of me in the coming three weeks.

Next week I will be in hospital for five days under the care of my neurologist. A care week, in a way, in which I hope to receive some physiotherapy support and a look at why my right hand and arm are tingling and loosing its power. Why my heart is doing funny jumps, etc. etc.

I have had these 'support weeks' in the past. Sometimes they are immensely useful to get a chance to have the many symptoms associated with M.E. looked at.
I have had MRI scans, meetings with OT, muscle testing, physiotherapy, etc. But also a meeting with the liaison officer for unexplained neurological illness  which truthfully broke my heart. The psychiatrist whom I met afterward deemed me of sound mind, but it all took a huge amount of energy. Which is something I don't have to spare...

The last time, two years ago,  I was under the care of my neurologist's colleague, as my own neurologist was on holidays. I was there to have the intense back pain looked at. I could no longer sit for any longer than a few minutes, due to pain at the tailbone area.  And the lump on my back was causing me a lot of grieve.  The doctor in charge tried very hard to convince me that it was all in my head. I was given lectures about endorphins:

1. any of a group of hormones secreted within the brain and nervous system and having a number of physiological functions. They are peptides which activate the body's opiate receptors, causing an analgesic effect.

and that I was perceiving pain that was not there. That I don't have enough positive hormones.... GRRRRRR.
The pain arises from activities I LIKE to do, like writing, and weaving, and sculpting, and gardening... They give me huge pleasures. AND pain.


This time I am going will be going in armed with the documentation compiled by Joan et all, for the Millions Missing Protest. It is brilliant. Clear. To the point.
I will read it every day over the next few days and bring a few copies of the text with me. And hand it to anyone who will try to tell me that it is all in my head or dismisses the diagnosis of M.E.

So, yes.

I am tired. I am worried. And yet I hope that the week will be a good and positive week.
I am planning to go in with an open mind, and trust that my neurologist did put a plan in place, like he promised to do. So no wasted days, and no frustration.

I hope that I can somehow use this week to build up some energy and have some rest too, as the following weeks will have an intensity of a different kind.

The family reunion is coming up in Holland.
It means a lot of travel. Staying in four different locations in eleven days. For one weekend being in a house with 30 people. It makes me anxious to think of it all.
But I have put the best self-care-plan in place.

Trust.
Trust that all will be well over the coming weeks, and that I actually enjoy that big family event.

So for today, and the coming days, I will have a holiday in my garden.
I will sleep in my greenhouse and take adventure to my front garden.
Sitting there always makes me feel as if I am on holidays.
Honestly.

The view is so different from my back garden - a walled in garden. The view is so much wider. and Further. It has a different energy!
I will bring a book, and a snack, and just BE.

See you soon

Be well.



Further reading and links

• gardening
• My garden 

Self Hug

I starting writing another post about Sleep - for Sue ...

But I realized that what I needed myself today, and I know some of you do as well, is a Self Hug.

Self Hug © Corina Duyn

Self Hug © Corina Duyn

I am scheduled for a procedure in a few days time, and I realized this morning that when I think about it, it almost brings me to tears. Fear. Fear of how my body will cope on the day. Fear, perhaps, on what might be found, although when I think about that realistically, that is not the biggest worry.

I contacted a dear friend of mine. The wise Dolores Ronayne.
She guided me through a short meditation, to hold myself, and the fear.

I like to share this meditation with you.

Place your left hand on your solar plexus.
The right hand on top of the left.
Breathe into it.
Breathe out.
Relax into it.
Do this for as long as needed.
Add a colour to your in-breath if one comes to mind.
You can move the right hand to your lower belly, or your heart, whatever needs more care at that moment.

It gave me peace, and I will keep in touch with my body this way over the next few days. To reassure my body and mind that the procedure is helpful to look into what issues might be there.
That I am minding my body. And my mind. That I hear my body.

Be well.


Links

• Dolores Ronayne- Holistic Therapist

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 

There were many times where I experienced Fear while going through M.E.

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 M.E. 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 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 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