My life is a simple life. It has to be said because it is true. I do
not do very much at all. This fact cannot really be got round. In orderto write about my life it is simply not possible to exclude the ilnessthough that is what I would dearly like to do. It infiltrates everypart of my being and impacts upon my experience of the world.
It makesvisits to ordinary places to do ordinary things virtually impossible.
It makes seeing people a trial rather than a pleasure despite the fact
that I always described myself as a people person. I am sadly this no
more , at least , not on the outside.
I am it seems or at least I have become a silent person - a person who
loves as well as needs deep outer peace and tranquility to cope at
all with the world. Noise sensitivity is infact a dreadful thing - a
massive barrier to communicating. Everything irritates - especially
electrical and man-made noises. Natural things are easier to cope with
, though as I write I can think of more and more things that drive my
ears crazy - flies buzzing, bees humming, the cuckoos early morning
song that goes on and on,
Though it is not only noise that irritates me, it is vibration and
movement.There is a particular hover fly that hovers in the air then
darts about - and returns to the same place. Believe it or not, it
torments me. I cannot be outside if there is a lawn mower ; even
children playing can be too loud . Noise sends my symptoms into over
drive and often I have to lie down in a darkened room, as my energy
has drained away and my pain is screaming at me running riot in my skin
and muscles.
The sound of ponies walking down the street though, or the sound of
the waves swooshing gently on the pebbles; these things are
surprisingly a joy.
Life is then quite a complicated existance for me and anyone who wants
to stay in touch or engage in real ongoingrelationship with me. Sadly
many have not stayed the course. To be close to someone with severe ME
you have to truly see the person , through a range of complicated
symptoms that would alienate and divide, given the chance; you have to
really understand and reach out moment by moment , I think, to stay and
be with me, to find the joy of a moment of peace, peace within yet
somehow beyond the pain.
It has taken me many years to understand andaccept that my irritability
is not my fault.
It is the illness that keeps me apart from the world. Because I cannot live in the
world as I used to do at all. It is inaccesible completely, except in very tiny
moments. And yet because there is someone who chooses to live and be
with me, I am not isolated or alone. I am complete.
Life then has had to become simple. Yet it is simplicity itself that
makes us happy. For it is in quietness and stillness,in moments of
simplicity that we connect beyond the place of suffering to a deeper
more mystical place : where love touches love and all is well.
14 comments:
You write very well and I think it will help you to blog often. I write a right load of old tripe mostly but people read it and I'm flattered and feel connected. I'm also a bit isolated but by no means as isolated as you but take comfort from this wonderful site and all the purplecooers. Toady
Your illness must indeed be so isolating, I'm sorry to hear about it. I think the acceptance of silence is a great gift to the soul though, and through your wtiing you sound very peaceful.
Thomas Traherne wrote:
"A quiet silent person may possess
All that is great or high in blessedness.
The inward work is the supreme for all
the other were occasion'd by the Fall.
A man, that seemeth idle to the view
Of others, may the greatest business do....
See, prize, give thanks within, and love,
Which is the high and only work, above
Them all."
from his poem 'silence'
I thought of this poem when I read your blog.
You write with such feeling, deep from the heart, I can feel your suffering but you do not sound bitter. You are a brave person.
Being a Christain too I can see how your prayer life must help you, if it is ok I will start to think of you in my prayers too.
Do go on writing and tell us how you feel and help us understand.
Soph's ME was never as bad, though she still has relapses, she is doing veery well, I think being young the body heals better, but my friend Lynne who has it has not got better, but like you has learnt to live with it, struggling at times.
May the Lord meet you at your point of need and bless you.
Elaine
very nice to meet you write so lovley and look forward to reading more i would love to live in norfolk x jep
I suffer with extra sensitive hearing too, much of mine is attributed to under active thyroid -It is such a nightmare isnt it - I presume you have done the tests for food intolerances which helped my joints etc. I too was diagnosied with ME initially and then once I found out about the food, including tea and coffee it has helped enormously. York Laboratories did the test via post. Anyway worth a punt if you havent sorted this as well.
Your writing is very beautiful, lyrical and with an honesty and tenderness that is rare. I felt very honoured to be allowed an insight into your world. I am sure you are up to date with all the research on ME/CFS - but, in my work, I sometimes come across new info and if you'd like, I'll certainly forward it on. There is also a fascinating book called How Prayer Heals that is quite fascinating....
btw, I loved your painting!
You are a brave and courageous lady and it is both an honour and a privilege to meet you. I look forward to reading more of your blogs. Thank you for sharing your life with us.
Thank you - that was so brave of you and I bet it left you exhausted.
I hope you find this a relaxing and satisfying outlet for your obvious artistic and writing talents.
Take care.
It is so good that you can write about the disease like this, Hopping Moon! You provide an insight without bitterness, not only into the ME itself, but beyond that - into your spiritual world.
I hope that you will write whenever you feel up to it, it must be exhausting for you. I feel so priviledged to be able to read about your days, and to see your pastels - no matter what tiny thing you share, it is a delight!
More than that, though, I do hope you will find it therapeutic in some small way, and enjoy the company of this wonderful band of people.
I feel as though I know you better after reading that blog, so thank you for opening yourself up. Your writing is lovely.
Your lack of bitterness is admirable,which make your writings a pleasure to read. I shall pop in and see you often.
I have to admit to looking ME up on Wikipedia, just to find out what it was really, having only heard the 'bad' stories about it in the early to mid 90s.
Having read that, and a very full account it is, I could not even begin to imagine what it must be like, let alone empathise with a sufferer, but you have brought it to life, as it were, with your writing.
I hope that your moments of good times far exceed those other times, and that you will continue to ocasionally open the window onto your (shared) world, when you can.
Your blog was very beautiful. I never know what to say ..... everyone else says it for me though. Looking forward to reading more. God bless.
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