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 

gratitude

In this world

This fast

world

I am full of

Gratitude

To be able to

watch

a beautiful

world

unfold

in front of

my eyes

A world

that is 

my garden

Apple Blossom

Apple blossom

Dandelion

Bean sprout

I hope you can find yourself a patch of nature today.

Be well

Greenhousing ...or having to face one's vulnerability

" ... just to be able to stop and, instead of catastrophizing what might happen, 

to say, "I'm just so grateful, because to feel this vulnerable means I'm alive."

Brené Brown: The power of vulnerability 

'greenhousing'

Last week I underwent minor surgery to remove a Lipoma from my mid back. It had been there for a few years and it had given me a lot of grieve. Most movements with my (left) arm turned quickly into pain in my back. Bad pain. Over the years I had to limit all activities to not get to this point of pain.

For years I had asked doctors to look at it, to remove it. I pleaded with them. Please remove it.

In January 2015 my neurologist took me serious and asked me to come into hospital for a 5 day stay to look at this part of my back, and my whole spine, as I have other issues to.

This happened in June 2015.

But. He was on holidays so someone from his team took over my care. 

It was like I was a completely new patient. Plans for MRI, Heart scan, physio etc were only made on the second day. But for most of the week I sat up in bed. Frustrated, as nothing was happening. What a waste of HSE money. To occupy a bed, with very ill patients on trolleys downstairs. Anyway, My biggest overall goal was to Get That Lump Out!

On the third night, I was woken up at half 9, and was taken to the MRI department. 

On Friday- my last day - I was told that the lump was "just" a lipoma. And in order for it to be looked at I had to be seen by a surgeon .... THROUGH OUTPATIENTS... his blew my mind, as I was IN the hospital. The surgeon or his team were probably walking past my ward every day, and could look at me, and my scan...

And I was given a lecture about 'happy hormones' ie. In other words: The pain is in your head...

I waited for over a year to get an outpatient appointment with the surgeon. I was on a waiting list.

"Yes. We can remove it, but can't guarantee that it will solve your back pain." He was a kind man.

Anyway. I ended up on a new list.

The surgical waiting list.

7th April 2017. I got a call if I can come in and have the lump removed on the 12th April. Sure!

(Help.... be careful what you ask for as it might just happen...)

I got worried about the surgery. But mostly about the anaesthetic. ME and Anesthetic are not greatly compatible.

Yes, I was very nervous.

But the doctors (3) and a nurse, were extremely kind and understanding. They used a non-adrenal-local anaesthetic, as requested. The nurse held my hand and coordinated deep breathing with the moments of excruciating pain.

The lump was much bigger, and deeper than anyone had expected, and not the neath little domed piece of fatty tissue just under the skin, as expected by the medical team. Seeing the extend of this lump, they concluded that it had been there for a while - and was thus harder to remove- that it had a weird shape and that it must have given a lot of pain... YES! But nobody had believed me.

They had great difficulty cutting and pulling it out of my back... It was horrible...

So, roll on one week. Or ten days by now.

The pain was and is bad.

But I am hopeful it will eventually will solve the problems I was having. If I can be patient right now.

Emotionally. It is painful too.

That is where Vulnerability come in : the quality or state of being exposed to the possibility of being attacked or harmed, either physically or emotionally.

Over all these years of living with ME, I had to greatly adapt my way of living. Of how I conduct my activities. Look after myself. Ask of help. Find way to do what I like or need to do. I am pretty good at this (if I may say so myself).

But.

After surgery, I needed soo much more rest.

It turned out I could not use my left arm for anything. Not even having it lie on my desk and use the keyboard of my computer. My arm had to be immobilized.

I had to immobilized.

But did not want to.

I wanted to go out and pull a few weeds from my garden. It makes me happy. Or empty a box with delivery from health food store. I wanted to re-pot the bean seedlings, cut a piece of bread. Go into my studio. Finish the Snapshots book edits.

None.

and when I did it anyway. All gave me grief.

views during 'my greenhousing'

Yesterday I finally gave in. Fully gave in. 

And did Greenhousing. This is not getting my hands dirty in the greenhouse, but putting myself on the bench. To rest.

Wrapped in a blanket. Pot of tea beside me. 

Basking in the goodness of the warmth of the sun.

Hearing the birds.

Watching Sally Cat find a place in the raised flowerbed to have her snooze in.

I did let a friend know that I was feeling pretty miserable.

All I had left in me were tears. There was no need to talk, but sharing my feeling via a text message gave me permission to just be. To be tired. To be in pain. To be sad. To give in to rest. To feel the fear- what if my back does not improve, what if surgery made it worse... 

To allow myself to be vulnerable. To feel those horrible feelings, that nobody wants to deal with.

I thought I had a good knowledge of my body, and my mind. 

But each new challenge requires to yet again visit those feelings of vulnerability. 

Knowing that if I do not delve into those feelings of vulnerability I also would not feel the joy and gratitude in my life.

views during 'my greenhousing'

I feel the better for my day of greenhousing and extended rest.

I learned to be a one handed computer writer. To take out two bits of shopping out of the box at the time. To fold one pair of socks at the time. To not want to go out on the scooter. To leave the weeds enrich my garden in their own ways.

To be.

To let it all be.

To let me be.

Links and further reading

• If you have a little time, I can highly recommend this very entertaining Ted Talk: The Power of Vulnerability by Brené Brown: about our ability to empathize, belong, love. In a poignant, funny talk, she shares a deep insight from her research, one that sent her on a personal quest to know herself as well as to understand humanity.  

The joy of seedlings

Don't they just look so happy, and joyful to emerge?
'Arms' spread wide.
'Heads' up high.

A lesson from nature
A lesson from French Bean Seedlings.