Social networks for people with M.E.

hi there all,

for the past few weeks, I have been visiting my Facebook page on a pretty regular basis. And am loving it! This after swearing that I will NEVER have a facebook page…

So, why do I have one?

Well, shortly after my first book in the cirrus-chronicles was launched, I was listening to a radio interview where facebook was heralded as a great way to promote ones work. Good point I thought, so I set up a page under the name of the main character of the book Cirrus Kalani. (So I was off the hook, it was Cirrus who had a page, not me!)

Cirrus made lots of friends and commented on posts from his point of view: a ten year old Cloud Fairy who had only once been on earth – Ballynelligan in Ireland.

Fun!

But, somehow, I – Corina – became more involved in the communication with Cirrus’s facebook friends. So about two weeks ago, I took the brave step to change the profile name to my own name.

Two benefits. I have been asked for ‘facebook-frienship’ by some people I have met in real life, and I made some new friends, some who are living with the condition M.E./CFS. All are a healthy bunch at heart. Thank you all! The second benefit is that I really enjoy their company and comments about the little things in life we enjoy, and that is increases my social contacts beyond the usual real -life -ones.

However, this is also where I ‘fall on my face’ so to speak.

My usual routine for the day was/is to check my emails in the morning, check if there is anything I need to respond to, and ‘put the computer to sleep’ again. Later in the day, I would like to get back to the computer to do some writing, or work on images, or whatever the plan is for the day.

But having increased my communications online, either through facebook or Second Life, I use up my alloted computer time for the day, and don’t get to do my work… A double edged sword. If I do both anyway, as I did- the pains in my neck-back-head are increasing dramatically. This in turn affects my overall day.

So, what to do about this?
I know the answer is pacing… be vigilant with energy consumption… but at times I am so in ‘need’ of social contacts, especially when my health doesn’t allow me much to go outside the door for the more common type of social interaction…

It makes me want to research- and write an article – for which I need your help- how the Internet, and in particular social networks, impacts on the lives of people with ME/CFS.

If you like to help me with this research – which I hope to publish on various blogs and ME/CFS support sites, and post it to the newspapers- please email me, or send me a message via my facebook or website-contact page.

• I would like to know what social networks you use
• what your situation is, in terms of being housebound etc
• what age you are and
• are you living alone, or being cared for by partner/parents.
• what impact this type of virtual contact has on your overall wellbeing
• and what is the downside/ if any
• and anthing else you would like to add!
• If at all possible, please email me before the end of August, Thanks

If you like to stay anonymous, please indicate this in your communication.

Thanking you in advance!

A little holiday

After a busy few weeks, in all sorts of ways,

I treated myself to a little break.

Where else, then at the grounds of the Murdoch University.

After a meditation at the Japanese garden on the floating patio,

I decided to go for a swim.

The beauty of this Second Life is, that no energy is required,

and there is no need to get changed into a swiming tugs, you don't get wet!

I swam among the fishes and coral reef to inspect the treasure chest

left on the bottom of the sea.

Touching the red coral will bring you to the Da Vince garden.

Didn't go there this time...

... I came for a rest!

My towel was waiting for me on the lovely sandy beach,

with the relaxing sound of a crackling fire.

Life is good!

Mary

Let’s call her Mary

You know, that girl who sat in the back of the class. When she was in school at all. Mary had a sad kind of face, with dull-ish brown eyes. Her home-haircut held in place with a brown hairclip. I haven’t seen her in thirty-six years. Yet she is often on my mind.

When we were about ten years old I went to visit my classmate, as she was sick at home. I brought my dolls so we could play together. A woman answered the door. ‘Mary is not here’ was all I got. Not being the bravest to ask any more questions, I left.

Mary didn’t come back to school for a long time. As it turned out, she was send to a children’s home.

The group photograph taken before we left primary school, shows Mary more mature than many of us. Certainly me, I was only a little ‘thing’. Mary had breast. Her posture was like one of the tough guys. She had a smile on her face. But then we all had. We seemed a happy bunch.

The truth was different.

We had a few ‘Mary’s’ among us. I joined that outsider group for a while too. I remember our school holiday to a village about two-hour cycle away. Actually what I remember is the weeks before our departure. We were sewing hats in craft class, the girls that is… A hat design that our ancient teacher had probably used for her school holiday decades ago. I hated that blue-and-white-chequered cap. The teacher thought it would just be wonderful that more than a dozen girls would cycle with the same type of hat… I blanked out ever having worn it. I blanked out a lot of that time. It was my turn to being bullied. Or to be more precise, being ignored.

Memory can be a good thing.

What we, or at any rate what I, refer to confidently as memory-- meaning a moment, a scene, a fact that has been subjected to a fixative and thereby rescued from oblivion-- is really a form of storytelling that goes on continually in the mind and often changes with the telling. Too many conflicting emotional interests are involved for life ever to be wholly acceptable, and possibly it is the work of the storyteller to rearrange things so that they conform to this end. In any case, in talking about the past we lie with every breath we draw. (William Maxwell, So Long, see you tomorrow)

The other Mary’s might agree.

I have never been very good in asking questions at the appropriate time. I observe, and hope that one day the answer will come.

Having starting the write a story about Mary, I came up with all sorts of scenarios of what might have happened to her. As I had no facts, I gave her the main role in a fictional story. An unassuming woman, who didn’t get carried away with the hype of the Celtic Tiger era. In the story the reader would get to know about Mary through an obituary in the Irish Times. To help me piece together my fictional Mary, I read newspaper articles I had saved over the past few years. The character was taking shape in my head. Then I thought, ‘maybe my classmate Mary has a presence on the Internet’. After finding a birthday book we had made in that last year in primary school, I found Mary’s surname and date of birth. I Googled her.

The first entry that came up was of the cemetery in the town we grew up in.

Mary died in 2005.

The postmaster of the website kindly forwarded the death notice which had appeared in the local paper. The notice started with a poem. I would like to think it was written by Mary herself.

(Translated from Dutch by me)

I always thought ‘later’.

Later I’ll do this or that.

Later I will make long journeys

Write a book, something like that.

Later my dreams will come true,

one by one.

Later ‘will make everything ok’.

But I have realized in life

that this is not the way one should think.

I can’t make it happen anymore

But I would like you to promise

that your will complete this for me together.

The piece continues with the statement that she loved her family dearly; she lived for her family and forgot herself.

In memory of Mary Boontjes- Aardenburg

30-1-1962 - 12-4-2005

Photographs of my garden

Just quick note: For those of you who like the photos of life in my garden, please see my facebook album.

I have also added a link to my facebook profile in the top bar.

Thank you all so much for your lovely comments (through various means) about my photographs It is lovely to share them with you.

X

Apreciate life when you can

Just watched an amazing documentary about Stuart Manag,

Stuart was paralysed from the head down, but decided he had a life to live.

A truly remarkable young man.

It makes you appreciate life in every way you can!

For me, right now, that is writing and photographing, or is it photographing and writing about the photographing....

I was watching the acrobatics of the wasp-like hover flies, when they tried to get the nectar from the borage flowers. Many of its petals were 'resting' on the patio slabs. For the flies to get into the petal, it looked like hover-flies had to fly upside down, or at least 'lie on their back' to get close. Fascinating stuff... Well, I think so anyway.

Even Buttons - (Robert Cat's friend) thought is of interest ...

... after he had a good sniff at the catnip! :-)

And so the day passes by.

The gourmet capital

No rest for the wicked - as the saying goes.

While lying on the settle outside with the intention to relax a while, I couldn't resist the temptation to get up again.

The many bees, wasps, and butterflies are busy exploring my garden. But what is the attraction for the hover-flies to this one particular poppy?

Is there a birthday party going on (and I am not invited), are they munching on the equivalent of a wedding cake? Or was there an article in the 'hover-buzz' newspaper this morning about THE place to get your Sunday Brunch - in the gourmet capital which is my little patch of a garden?

Who knows!

All I know is, that my head comes up with stories, and there is no getting away with ignoring the specatcles in my garden.

Lucky me!

I am still learning

On Thursday last I finally attended the West Waterford Writers group. Only until the break, but I was pleased to be amidst a group of writing-loving-people.

To get our creative-writing-juices going, Rose the facilitator for the night, had brought in this plaque:

The results were as varied as the birds in the sky: a poem about politicians, a dialogue between Michelangelo and Angelo Michael, a word play on the word still, procrastination, and the worry about being a facilitator.

For me, the quote brought me very close to my emotions of the recent past.

I am still learning...

...to deal with this illness, after twelve years.

The past two months have been tough to say the least - my body has been ravaged by various infections- which in turn triggered M.E. symptoms. Medication to combat the infections, leaves me exhausted- a double edged sword.

Surely by now I know that I need to rest, and that better health will come my way again.

I have been here before.

Many many times.

I fight the fatigue. I want to go out and do some gardening. I do, and get more whacked- and feel worse.

I want a social life, or at least social contact- but even that leaves me exhausted and in pain.

I am still learning.

I know what to do - I know the tide will change when I have reached acceptance again.

So, why am I still learning?

...because I don't want to know.

I don't want to know, really know, that I am ill.

I am still learning to find the absolute acceptance....

...and wonder will I ever find it.

As a footnote I wrote:

I made it to the writers group, as writing is what I would really like to do, and I am still learning.

I hope that being here will shift the focus from M.E. to me...

...and rediscover the writer within.

Coming home, all I wanted to do was write, but common sense prevailed and I went straight to bed. Slept for almost 11 hours, woke up tired. But! I feel that I am back!

By the way

There are some exciting writing opportunities in County Waterford right now:

Molly Keane's House as Writer's Retreat, and a

Waterford Co. Council writing bursary to attend one of the courses at: Dingle Writing courses

See you all soon!

Swallow feeding it's young

Lying on the couch, looking through the open kitchen door, I spotted a young swallow on the neighbour's roof, preening itself. Lucky me to click the camera at this exciting moment: the mouth of the fledgling open, while it's "mammy' came with food!