Keep circling until you run out of fuel...

On the last day of my planned 5-day-hospital stay in May, my neurologist gave me the analogy of 'airport landing slots'  in terms of getting the requested MRI done. If you miss your slot, you just ahve to keep 'circling'.

keep circling until you run out of fuel

At the time of discharge, I was told that I would be getting an outpatient appointment for this MRI, and be seen by the neurologist in 6 weeks time to discuss any of the findings from my stay and tests.
Of course, this is daft (as I wrote in that same post): "... It blows my mind that one is given an inpatient stay because it is so hard to get tests done via outpatients. And then you're an inpatient, hugging a bed for 5 days, they ask you to come back as an outpatient ..."

But what choice do you really have?
None.
Other than speak up, or take back control.

I was patiently waiting for these appointment to arrive.
I did get an appointment to see the neurologist in July.
I also got an appointment for a Nerve Conduction Test ... which was already done while in hospital...

As I did not get an appointment yet for the MRI, I rang the neurologist secretary again. Friday, and yesterday.

The telephone conversation brought me close to tears. 
Tears of utter disbelief.
Tears of anger.
Tears of having to deal with an incompetent "health" system. 

I was let to belief that I made up the MRI request...
There was no mention of an MRI request in the discharge notes, according the secretary.
So I must be wrong.

I know she is only reading the notes. She did not treat me while in hospital.
But somebody screwed up. Somewhere along the line.
OR
I am a writer of great fiction, instead of non-fiction, and I made up the stories I wrote about my 5-day-stay. See links to these at bottom of this page.

I told her of the neurologist and his team's attempts to get this scan done; their responses to the waiting times; the nurses constant ringing the MRI department; the requested needle (not being) in my arm, the physio in the community reading the letter from the hospital, which included a note about the upcoming MRI... etc. etc.

I am so utterly done with dealing with a sick "health" system,

They make me sick.
They make me depressed.
And then they have 'won', as they can say that I am ill because I am depressed...

So, will I keep circling- until I run out of fuel * and crash - to get this MRI?
Or will I safely land in a world which I know and understand, and stay put in my garden, in my house, in my studio and with people who do understand me, and support me...

I was ready to cancel any upcoming hospital appointments, and live the way I feel is best for me. Trust me, this does not involve hospitals...

Had an appointment my GP this morning (was already booked before yesterday's frustration).

She was appalled at the (non) treatment. Of wasting my time. Their time. And tax-payers money (to have me read books for 5 days). But unfortunately these incoherent hospital antics are NOT uncommon. She spends a great deal of her time chasing hospital consultants, and organizing appointments for tests. Which should have been done/organised by the hospitals.

Infuriating.
She is making her annoyance known to the neurologist, by phone, and if no luck there, by letter.
She did advise me to get the MRI. Just to be sure.
And reassured me that I am no where near being depressed... 
Angry? Yes. Upset? Yes. But not depressed.
At the anology of "keep flying until you run out of fuel...", she responded: 'until you end up in A&E, and then you get tests done very quickly as they want you out of A&E!

Incidentally: The word Patient:

noun

a person receiving or registered to receive medical treatment.

1. synonyms:

   sick person, case, sufferer, victim

adjective

1. able to accept or tolerate delays, problems, or suffering without becoming annoyed or anxious.

   
   

   synonyms:

   forbearing, uncomplaining, tolerant, long-suffering, resigned, stoical;

Do I need to say more?

Hospital stories:

• Day 1: The peculiar world of hospitals
• Day 2: To Paris by hospital bed
• Day 3: Speaking different languages
• Day 4: The honeymoon in over
• Day 5: Unfinished business
• After thoughts: Taking back the power

* Thanks Joan B for the title!

Retreat

... from Latin retrahere ‘pull back’ 

For the past few days

I had the great need, 

to retreat 

from the world.

To clear space

in my mind.

I found solace

in my front garden

Connecting with the earth

clearing weeds

cutting back

making space.

A few minutes at the time.

Taking plenty of time

to watch the snails 'moving house'

as I unintentionally 

disrupted their world.

My apologies.

Today, I was grateful

to connect
with the earth
when a bizarre telephone conversation
with a hospital staff member
brought my sanity

into question.

Sitting on my small crate

under the apple trees

pulling weeds

brought my mind back to

trusting my own thoughts.

Nature is healing.

reuniting with my studio friends

Yesterday I made the tentavite steps back into my studio, to re- acquaint with the two little figures who are eager to make it out into the world.

These two are to feature in a Very Short animated video... whenever I get them finished, and filmed, and figure out How to actually make the video.

A project one year in the making already, and at this rate, might take another year.

All in it's own good time.

For now I am glad I made it back to my wonderful little cave, even for a few minutes.
I put some hair on the one with the hat, and added sleeves under her sweater.

Unfortuantelly, I am having some problems with her hands, so have to remake them again. (fourth time?) Eyes to be painted next, on a day when my hands are good and steady!

The sweater and hat were made by my granny for my Sindy doll, when I was about 10 years old. So, 45 years ago.

Dance of Life project

Dance of Life project

Dance of Life project

Dance of Life project

Dance of Life project

The power of Meditation music

I start and finish each day

with listening to Meditation music

Free download from Sounds True

In the morning

I listen to Meditation Music from Sounds True during meditation,
during writing,
or if I wake up too early and still need some time to relax.

The music is FREE to download if you sign up to Sounds True, which has a store of other free downloads and an amazing array of books and CD's etc for healing, and learning.

It sets me up for the day.

Available from Sounds True

At night

When getting ready for bed, I listen to Self healing with Sound and Music; Revitalize Your Body & Mind with Proven Sound-Healing Tools by Andrew Weil, Kimba Arem

There are two CD's: in Session One, Dr. Weil discusses the latest in medical research that demonstrates how music heals the body and mind, while Kimba Arem teaches breathing and vocalization techniques for harnessing this potential. Session Two gives listeners just the music: a complete sound journey into expanded states of consciousness optimized for healing.

Some free videos on Youtube , and the CD, or download is available here.

I first found it in my local library years ago,and have listened to it almost daily. I have it downloaded onto an old iPod which is permanently in my bedroom.

Walking sticks or rolator

Yesterday I had a follow up meeting with the Community Physiotherapist after the hospital stay a month or so ago.
I was greeted with utmost respect and understanding. The assessment was detailed and lasted for over an hour. She gave me much credit for knowing my body well, and for being aware of the value of pacing etc. It really warms the heart to be listened to, and to have someone work with, to see if there is anyway I can improve my mobility and ability to some degree.

As we conducted the first part of a balance test, I kind of joked how I used to be a gymnast in my day. A reasonably good one. I even did some teaching for a few years. Good memories. Very good memories.
The physiotherapist said that the experience of being a gymnast probably helps me now with how to evaluate the workings (or non-workings) of my physical body. I know how to adjust my posture, although this does not come natural anymore.

Another discussion, after spotting a rolator in the gym, was about the use of mobility aids.
I have a parking lot full ...
From walking sticks, to a rolator, manual wheelchair and two mobility scooters (a small portable one, and a big sturdy one).

After my steps into the sea in Texel,
with my brother Kees

As I want to build up my walking outside the house again, which I had resumed last autumn but collapsed back in February  I was wondering should I use the rolator in stead of my two sticks?

During a test, it proved that I walk with the same """speed""' (ha ha) with both, but that maybe the rolator, which has a little seat on it, will ease the stress of walking outside the door.
I can walk the same distance, but can sit down and enjoy the view, without the worry that I need to get home quick before my legs give up.

I like that.
It makes sense.

The reason I suppose I am more likely to use sticks v. rolator is a mental one.
With sticks I feel less disabled than using a rolator.
The same counts for a manual wheelchair verses a powered one.
My 'pimped' wheelchair versus a boring black one.
I feel less disabled ON my scooter, than IN my wheelchair.
Or being in wheelchair accessible taxi (seated in my wheelchair) than in the a transit with the HUGE letters Irish Wheelchair Association on it.

It is all just a tricks of the mind.

page from Into the Light. 
IN a wheelchair, or ON a scooter

my pimped wheelchair

Snail's pace

Nature is so incredibly beautiful

I spotted this snail in the raised bird bath
while dealing with the little bird 
 a few days ago.

It takes my breath away.

Snail in the bird bath

Back Garden Bliss

In yesterday's post I wrote about the clearing of my garden, with the help of Anne.
Here a few pictures of the lovely cleared, and again tranquil garden.
My deepest gratitude for this amazing kindness of time and friendship.

Anne who so kindly helped me to clear my back garden of weeds.
I can now See the garden again,
and have clear paths.

Foxglove standing proud

The wonders called Poppies.
Never tired of looking at them.

Free path to my studio

... and free path to my herb garden

my beloved greenhouse
and Tranquil setting of Buddha, Maple and water feature

side of studio, with Hypericum shrub,
which will, after flowering be transplanted to Anne's Garden

Jasmin, just outside my studio door

Sally overseeing the cleared garden
on the steps of my studio

view from the studio

• Another follow up from Yesterday's post consists of two podcasts about dealing with M.E. and ongoing research. See HERE

Two M.E. research podcasts

In light of yesterday's post.

I watched/listened to this interview yesterday:  Dr. Myhill: Why Mitochondria are the Real Cause of Fatigue. 

Very interesting, although I could not follow all of it. It has a huge amount of medical information, but also suggestions on nutritional and mineral supplements, diet and good quality sleep. Probably need to listen a few times, or buy the book: It’s Mitochondria, Not Hypochondria.

She finished with the thought that, yes, it is important to put the 'right fuel' in your body, but if you constantly overdo it, there is little hope of recovery. 

We ALL have to pace our activities (ill or not), but particular important for people living with M.E.

You are never going to get well if you keep overdoing it...

Ah, I am sure we all know...

Links:

• Dr. Myhill's interview is on The Energy Blueprint, and can be listened to on youtube and various other formats. Just over an hour long
• Another interesting interview is with Ron Davis, Director, Stanford Genome Technology Center on Mendelspod The Last Major Disease To Be Studied? Ron Davis of Stanford Thinks So.  Davis is working to characterize the disease at the molecular level. Just under half hour.

That will keep you busy for the Sunday, or for the week.

Be well.

Is routine the key to living well with illness?

Lots of thoughts this morning. About meditation, medication, routine, pacing, finding my way again.

Meditation

The power of meditation to feel how my body truly feels. And not to mask pain totally with pain medication.
A fine line, I think.

Medication

Yes, I do take pain medication. I am very glad to have them.
After many trails over the years of strong pain relief, I now mainly use very basic medication. The more drastic ones all had me end up living like a zombie, or had too many side effects, which made life more intolerable in different ways. (Note: This is my experience. I am sure that we all have different views on this.)

There are days that I find it important to really see/feel how my body is functioning.
By taking too much pain medication, there is the change that I continually overdo it, because I don't feel the pain which activities are causing. The danger arises that I end up in a vicious circle.
... if that makes sense...?

Preventative pain relief

I do take pain medication in advance of an activity, when I know I simply don't have a choice not to overdo it. Like for travel, or extended outings.
Sometimes I take pain medication when I am in the middle of an activity where there is no choice but to keep going. I can hardly lie down in a shop, or on the street when I can no longer function due to pain or fatigue. The basic Paracetamol seems to work for this to some degree.
In the hospital I was advised to take paracetamol on a routine basis. I followed this advise for the Holland adventures, but am now trying to take less again.

... and dealing with pain after doing too much

Other times I have already grossly overstayed my own welcome in being kind and considerate to my body...
Like yesterday.
Where I had a friend help me in the garden to do some weeding. She did not mind at all, at all, if I did nothing but observe. But I LOVE being involved in my garden so I did my bit of weeding. Sitting down. But I did too much. I felt ill. In so much pain. I spend the rest of the afternoon on the bench in the garden and on the couch. So, yes. I did dowse myself with pain relief. And yes I did feel a bit better after a few hours. But is that really the answer?

I don't think it is.

'Wisdom' sculpture by Corina Duyn 2015, background view is in Dzogchen Beara

So, back to meditation

Hence I started my day with meditation, to really explore where I am at. How to proceed. How to get back to being well again. Well within illness. Well without putting too many chemicals into my body. Well by listening to my body.

I would like to get back to my routine. To stay within my levels of ability. Which due to the surgery and the 'hospital-Holland-marathon' has taken a good few steps backwards.

I know that for me routine is the key to living well with illness. 

I need to get back to:

• Pacing my activities:
•  Exploring over the next few weeks where my level of ability is at this point in time.
• Establishing my routine again:
• Spend time in Meditation
• To be involved in creative activities and writing
• Connect with nature
• Have social contact at least once a day, in the form of actual meetings, and if that is not possible, than a phone call or skype is great too.
• Do some form of movement, through breathing, yoga, tai chi, or walking.
• Prepare for a Proper sleepWhen things get tough to do a very short healing meditation 

• To eat well. To not put the 'wrong fuel in my body'.
• To just be. Be with whatever is happening.

That is my plan.

What is your plan?

For the Love of Birds

Is is remotely possible that my little Sally Cat actually rescued a fledgelings Sparrow?

two fledgelings sparrows in my garden

Sally came in my bedroom this morning with a tiny bird, which was slightly frothing at the mouth.
Sally had the same 'talk' as she does when she brings me her Teddy.
Unlike any other cat I know when it has a prey, she did not held onto it but 'gave' it to me in a way. Talking to me, and purring.

I picked up the little bird, brought it to the kitchen and put its bill in a small bowl of water. It immediately revived ...And flew off the kitchen counter and under the couch...

Today's exercise taken care of for me so!  I had to crouch on the floor, stretching my arms to reach the little bird, before trying to get up again, bird in hand to walk outside...
I put it in the grasses, in the hope it was ok.
But as Sally still had an interest in it, I thought I should make a 'safe-house' for the bird. Just in case.

Walked into my studio, found a large tub. Filled it with compost, twigs, shelter, moss, water, food... only to not being able to find the little bird again.
Neither did Sally, who watched with interest, and purred all the time...
I hope to goodness that it was able to fly away.

I went back to bed to recover from these early morning exercises. My legs are sore, my arms are hanging like useless objects along my body.

All for the Love of Birds.

fledgelings sparrow few days ago

sparrow

fledgling Great tit

Thank you for your kindness

We may decide that a puma is worth more to us than a caterpillar, 

but surely we can agree that the habitat is all the better for being able to sustain each.

Stephen Fry - The Fry Chronicles

A big thank you to my readers far and wide who responded with such kindness towards yesterday's post, about making sense of living life with illness.
You responded with sharing your own stories and experiences, which I know will be of support to many others.

"... Since I came to accept my condition (accepting doesn't mean I'm happy with it!), kinda made 'friends' with it, seeing it as a part of me (not 'me'), I feel much more content and can actually enjoy life within all my limitations..."

So many of you responded on my Facebook page, via personal messages and emails.

Thank you all, for keeping me and others who live with their own challenges, in your hearts and minds.

Also thank you for helping me to see again that perhaps my life is not as 'bizarre' as I thought it was/is. My life is just different.

"You are a true artist, and in remaining true to yourself and your art and what you create from your own intimate self you are then whole as a person as a spiritual and human being..."


There is little point in comparing my life with those living in a different world. I just got a little confused for the past while.

I leave you with some words I wrote in my Into the Light book, which also has the above quote by Stephen Fry in it.
We are all different, thank goodness for that...

Be well my friends, and thank you again for your company and opening your hearts.



my words on the page from Into the Light read:

Bodies come in all shapes colours and sizes
White bodies and black Tall bodies and little ones Female, and male Healthy ones and ill ones
The right body and the other

Throughout the history of western civilization emphasis has been placed on achieving the perfect body 
Great value is put on physical ability

We are all different thank goodness
What a boring world we would have if we were all perfect Whatever that might be 

Making sense of life with illness

... 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

I thought I felt challenged these past few days because of the reality of pain and pretty extreme fatigue as aftermath from my marathon weeks of hospital and travel. But there is something else at play. 

I read this question on facebook yesterday from another person living with M.E.: [abstract] ... I am thinking a lot about purpose and meaning at the moment, especially because I am feeling unmotivated, depressed and *useless*.
While writing a response, I realised why I feel vulnerable at the moment: I am out of my comfort zone and realised how bizarre my life really is, in terms of the "norm".

stepping into the real world

Having had my 'toe in the real world' during the Holland adventures, seemed to have unsettled me. A world in which I am surrounded by people who live normal lives. Who have jobs, family, kids, and go about their activities at will. (most likely a generalization, and not always true, but that is what is looks and feels like from my point of view.)

Maybe, I find it easier to stay in my own created world. 
A world that I understand and can function in. If that makes sense. 
No, it is not what I have hoped for in my life, but within my life with illness I have created a good life. I do truly believe that. 

These views are just a little askew at the moment. 
I have to find ways to find my own life again. To reconnect with my creativity, my garden, and my writing. To start doing things a few minutes at the time again, to reestablish a routine.

But also to give myself the time to feel what is really feels like to live with a body which does not conform. A body which is painful, and has many demands. To look at how I have a tendency to look at the good things, and to laugh away something that in all honesty is not funny at all. 

My dear friend Chris, whom I had the pleasure of spending a few days with in Holland, mentioned this too, during our last night's dinner. I asked her at the time 'not to go there, as I would start to cry.'

My animation project cocoon.
Nothing is a coincidence

So it really is important to now, in the comfort of my own home, in my own cocoon, to truly look at this. And to look at what the family reunion, and the making of Snapshots, means for me. 
Nothing is a coincidence...

Life. Creativity. Writing. Meeting people. 
Nothing is a coincidence...

Be well my dear friends, and I gladly hear or read your own thoughts on vulnerability, and how you finds ways to make sense of it all.

When Sally met Teddy

The care from a cat

Sally's Teddy

A few months ago I found two cushions in my study in various location on the floor. I suspected Sally Cat to be responsible for this... (other option were aliens...).
My assumptions were right. I saw Sally fight with one of the cushions one day. The cushion being at least three times the size of my little cat, I decided to buy her a Teddy.

Love at first sight.

Sally walks around with Teddy in her mouth and 'talks' in a different way.
I have not yet decided if she thinks it is a kitten, or a 'prize-catch'.

What I DO know is that she wants me to acknowledge her Teddy.
At ANY time of the day.
Also at 3 am.
She 'talks-her-talk' until I turn on the light and tell her how good a girl she is.

She now offers me her Teddy.
At 3 am...
And drops it on my bed, beside my head.

The sweetheart.

Fragile

Today I aspire to be like the fragile, and yet strong poppy flower

poppy flower

While I try to hang on to those amazing moments of my trip to my country of birth, there are so many thoughts swirling through my painful and tired body. Too many to relate in the one post. 

While I re-arrange them into order in my head, and make sense of them all, the one overriding word for today is: 

FRAGILE: 

(of a person) not strong or sturdy; delicate and vulnerable.

Synonyms: weak, delicate, frail, debilitated, shaky, ill, unwell, ailing, poorly, infirm, feeble...

Origin: late 15th century (in the sense ‘morally weak’): from Latin fragilis, from frangere ‘to break’. The sense ‘liable to break’ dates from the mid 16th century. (and an interesting graft of the use of the word Fragile over time - became popular since the 60's)

Imploding, exploding

 

Home!

While my body seems to have "Imploded"

implode

ɪmˈpləʊd/

verb

past tense: imploded; past participle: imploded

1. 
   

   collapse or cause to collapse violently inwards.

My Garden seems to have  "Exploded" 

into a vast array of colours and massive growth.

explode

ɪkˈspləʊd,ɛkˈspləʊd/

verb

burst or shatter violently and noisily as a result of rapid combustion,

excessive internal pressure, or other process.

 

Good to be home.

I will 'process' all that happened 

during the past three weeks

all in its own good time.

Always lovely to have your company.
Be well.