M.E. is for real, for me and for many, many other people. Many not as fortunate as me to have recovered a great deal.
Last night I wrote in my notebook: "So... what am I going to do about it?"
A few months ago I had resolved to 'add my voice' to bringing knowledge of M.E. to the wider community. That is a great thought, until I am too much confronted with this blasted illness, and I want to escape. I didn't make it easy on myself by 'drooling' over a beautiful Dutch looking bike in a new bicycle shop in Dungarvan. My biggest dream - cycling a bike again. I even had a red jacket picked out... Tough... :-(
So... what am I going to do about it?
Well, at first I just wanted to 'chicken out'. Ignore my resolve and just do what I like best; write, work on the Tree Project (*), do some gardening, or read.
In terms of my blog: write about fun things, like books and writing, and making soup out of homegrown produce, and add some lovely pictures. Then something Mariela keeps reminding me, came to mind: "Your venom is in your pen." How can I 'chicken out' with that thought stuck in my head...
While looking for the correct spelling of venom in the dictionary, (I couldn't find it, and looked under bee in the hope I'll find the name of the sting... ) I came across many words that made me think about what living with M.E. can be like for many people.
Bedraggle: Wet (garment) by trailing it or so that it hangs limp. Sounds like a clear, although rather unfortunate description of a person with M.E. - the person being the garment...
Bedrest: confinement of an invalid to bed. Bed-rest has taken on a whole different meaning...
Bedtime: usual time for going to bed. Permanently for some. Several times a day for others...
Bedsit bedroom and sitting-room in one. For many that is how they live, although they might have a whole house at their disposal, all they see is their bedroom (bedsit), or is there such a word as "bed-lie"...
So here I am. Have I decided what I am going to do about it?
Well, after writing and sorting out my thoughts, annoyances, wishes and dreams in my notebook last night, I came to the resolve that blogs are about writing, and maybe, just maybe, I can reach one more person in this big world of ours and create an understanding about M.E. And at the same time I get to do what I love best. Writing!
(*) Leaves I created for the Tree Project
5 comments:
All you can do is live your life as richly as you are able at any given point and that is what you do and have done already for many years. Your message is already out there just by you living your life the way you do. Continue as you have and keep up the blog and publicity and you are doing all you need to do.
(*)
Thank you Cusp for caring and for your very encouraging words.
I will keep doing what I know best.I'll find my 'feet' again I'm sure. I hope you will find yours too!
You don't need feet. You got wings :O)
After a long and 'wrotten' day in A@E and having to deal with the aftermath... you managed to put the smile back on my face again! Thanks! .... I will look for those wings again! :-)
Ps.
Lying on the couch trying to keep the dizzy spell away, I was thinking about Cusp's Wings comment. I remembered a chapter (first edti!) in the next Cirrus story:
A Sad Angel
Zebra flew through the large iron gates to the cathedral. A flock of sparkling starlings were happily singing their song.
“Will you look at that!” he said. “So close to my home, and I didn’t even know it was here.”
All three looked up at the enormously high spire, which reached far into the sky. Cirrus remembered seeing this on his first morning in Ballynelligan. Seeing it so near is another story altogether.
Flying around the churchyard, they saw many old gravestones standing crisscross on the grass like disorganised soldiers. White daisies took their pride of place among them.
“Look!” said Cirrus, pointing down to the ground. “There is a little bird. It looks a bit like the pigeon that brought my letter to you!”
When they landed and had a closer look, they realized that the dove was made of marble and must have broken off one of the sculptures.
Walking through high grass, they stopped to talk to a beautiful, but sad looking angel.
“Why are you so sad?” Cirrus asked.
“I have been here a long time as you can read on my stone.”
“Ambrose William Bush Power … 1907” Cirrus read out loud. You are here for more than one hundred years!”
“Exactly, I am a bit lonely to be honest. All the relations of Ambrose have now died, and there is nobody around to fix my hands.”
“Your hands? I don’t understand. You are an Angel. You have wings!”
“Yes, but look,” the Angel looked down. “My hands have broken off in the frost, and I so much would like to feel the birds and the butterflies that come to rest on me.”
Wally took out his notebook and copied all the names and text from the gravestone. “I’ll see what we can do!” He said firmly.
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