Endometriosis & ME

by Vivien Steels

 

 

My Experience    Things I’ve Found Helpful  
Why I Write    Poetry    Artwork

 


My Experience

I’m in contact with many people with M.E., both by e-mail and letter, and it is such a lonely disease with many people not being diagnosed properly or given any help even today. I had to give up my job of teaching and lecturing in 1986/7 and now spend any energy I get on writing (mainly poetry – my passion, but also short stories and articles) and painting, which I’ve always done, but ironically I can now spend more time doing the things I love most.

I was supposed to do an M.Ed. in Human Relations at Nottingham University from October 1990, but I had to give up my place due to ill health. They kept my place open for me the next year, but I was never well enough to do it. I wanted to become a counsellor.

M.E. is really a rollercoaster of an illness. For about 11 years until 1997 I used to run a self-help group and was a counsellor for women with Endometriosis (allied to the Endometriosis Society), a condition I had had since Christmas 1980; it started together with M.E. and an underactive thyroid after a very bad upper respiratory virus from which I never recovered.

In December 1980 I had a ‘knock-out’ type virus with chest pains, exhaustion, muscle pain and weakness, sweating, severe head and neck pain, shivering and shaking, difficulty breathing, sleep disruption with nightmares, nausea, dizziness and swollen glands. Menstrual problems/pain were exacerbated after this viral infection. I had five weeks off work (teaching). When I went back to work, I became increasingly exhausted with viral symptoms as I have previously described flaring up. I had severe chest pain and palpitations on exertion. I really thought I had a heart problem. With exhaustion and new menstrual symptoms of severe period pain, painful ovulation, heavy periods, pain in lower left side, bowel pain on a cyclical basis and bad PMS, I became increasingly depressed.

All the above went undiagnosed for years by my former GP, who told me it was all ‘psychosomatic, nerves, stress, being a woman!! etc., etc.’, but when I was rushed into hospital, as an emergency for surgery in 1983 for Endometriosis, then I changed my doctor to a female doctor at a different practice (she has recently retired); things began to change, though it was always a real battle to get all my symptoms believed and diagnosed, probably because of the way I look… I was always told I looked too well to be ill!!

I also then joined Action for M.E. and became their contact for Women with M.E. and Endometriosis for a few years - it is quite common for women to have both illnesses.

Most people know very little about M.E. and don’t really care about it, until they have it or someone close to them does, but that is human nature and you can only really appreciate how an illness makes you feel, if you suffer from it yourself. People find illness, when something tangible isn’t visible, always difficult to accept.

As I’ve had M.E. (I’m not bothered by Endometriosis now, as I had a total hysterectomy in 1989 and have daily Thyroxine for an underactive thyroid, which was detected in 1991) for 32 years, I have now come to terms with it, though it still causes intense frustration for me, because I am naturally a very active person and have loads of things I want to do in life. For me, a total hysterectomy was the best thing. I seemed to sail through it. A friend from the US sent me some 'Successful Surgery & Recovery - Conditioning Mind and Body' tapes beforehand, which really helped. Also, my body was not being drained by the Endometriosis. I didn't have a dramatic effect from a sudden lack of oestrogen, though I know some women can. I got over the effects of the surgery very quickly in about six weeks and the M.E. actually improved. I went on to have two years free of HRT, which is good for Endometriosis. If any tiny bits are left behind they are not being fed hormonally to grow bigger so they shrivel and disappear. I only went on HRT in 1991 as my bone density dropped 18% in those two years. I had oestrogen-only patches until 2003.

Ian, my lovely husband, has been so important to me and is so kind, but he probably too has a milder form of M.E. (from his case history before he met me), where he can work, but has to rest a lot of the time at home. As he is self-employed and works very long hours at his business, it is very difficult, as he does the shopping for me and anything else that takes a certain amount of energy. We have a cleaner and a gardener to help us (privately employed).

At the moment and for a few years now, I’ve reached a sort of plateau where I can do a few things some days, but pay for it by having to rest/be in bed afterwards, although I'm not bed-bound for weeks/months at a time now like I was at one time. Anything I do costs me, be it physical activity or mental concentration. I don’t do anything in the evening, because I’m far too exhausted and am often in bed by 8 or 9 pm or earlier. A few years ago I went through a very bad relapse (after flu + two infections, antibiotics + antifungals, which both totally disagreed with me).

I became a Christian in 1983 while very ill with M.E. and undergoing a year of psychotherapy, as all my medical symptoms were classed as psychological, but I was severely depressed and I also had to grieve for the death of my father from leukaemia in 1980, when I was 18, which I had suppressed when going away to do my English Literature degree in Reading and being away from home for the first time.

My Christian faith is very important to me and I have received God’s healing on many occasions and been involved in the Healing Ministry. I am an inveterate animal lover, who has always had cats and rabbits. Animals are wonderfully healing and I can’t exist without their company.

I am also very lucky to live inside a Country Park with two lakes, from which an abundance of wildlife overflows into our garden, and on a good day I can walk out of our drive into the greenness of trees echoing with the soft lapping of water.

I have recently re-designed my website, Talking Paint, and have also produced and designed six collections of my published poetry illustrated with my paintings called Promise, Mandala, Secrets, Home from Home, Winter White and Into the Past at Vivi*Press Poetry. I gained a Distinction in a Creative and Professional Writing Course at Nottingham University in 2010. Recently I have designed a new online journal called Heart-Work.

I hope this article will increase your understanding of both Endometriosis and M.E. For further information about Endometriosis please visit Endometriosis UK. I would love to hear from anyone who shares my interests and beliefs; please Contact me through Heart-Work.

 


Things I’ve Found Helpful

 
  • Pets:
    I have a lovely cat called Mittens and a lovely rabbit called Shadow.

  • Homeopathy:
    Aconite – for painful muscles
    Sepia – for exhaustion-induced depression

  • Vitamins:
    Vitamin C, B complex, magnesium, fish oils and acidophilis (for Irritable Bowel Syndrome).

  • Diet:
    Very healthy/wholefood diet – low fat/no salt/low sugar with lots of fresh vegetables and soya milk or goat’s milk. I eat eggs, cheese (goat and buffalo cheese), seeds, pulses, wholegrains, seafood, fish and free-range chicken with occasional red meat. I dd a Candida diet for three years from 1986 to 1989. I can’t eat wheat/gluten or cow’s milk.

  • Relaxation Tapes:
    Twice a day.
    Deep breathing.
    Autonomic relaxation techniques.

  • Hobbies:
    Painting and writing – crafts.
    Reading, films, the arts, music.

  • Counselling:
    By someone who believed M.E. was a physical disease.

  • Christian Faith:
    Strong faith and belief in healing in all forms and an interest in all forms of spirituality.

  • Very Supportive Husband:
    My husband, Ian, is very kind and understanding and will do anything to help me. He runs his own business and often is very exhausted himself. It is a strain on the partner, who is the carer, as well as the sufferer from the illness.

  • Sense of Humour:
    Vital!
 


Why I Write

I have M.E. but M.E. doesn’t have me – writing and painting do, especially poetry, which wells up from an inner compulsion as lava from a volcano, so that I am driven to put pen to paper and always do, having notebooks all round the house, bits of paper with scrawly Italic scribbles over them.

My bedside book is the most important for I often wake up in the middle of the night feeling grim, experiencing vivid, lucid dreams and inspirations for poems.

I envisage myself as a poet and painter and every precious particle of spare energy M.E. allows me goes towards that goal. As I had to leave teaching and lecturing in 1987, writing now preserves my sanity, keeping the vital, creative centre of myself aflame, keeping me in touch and sensitive to the world around me, even when my muscles scream like a marathon runner’s and I wobble like a baby taking its first steps. My brain will often refuse to find exactly the right word as all cerebral activity seems to be conducted through porridge.

So I have M.E. Ironically I have more time than when I was working fulltime (plus involving myself in voluntary work, plus sports, plus an active social life, because I always liked to be ‘doing’ something), to concentrate on what really contributes to feeling fulfilled – writing.

Writing is an activity that requires a minimum of physical effort – you can do it anywhere, but it specially lends itself to bed, where I reside quite a lot of the time. I prop myself up with an architecture of pillows, until I disappear amongst large, white marshmallows, then I draw my feet up so that my legs form a natural support for my pad of paper. My pen seems to take on a life of its own – almost like automatic writing, where a person goes into a trance, pen flashing across the paper in a specific style of writing that does not belong to them. Only on a good day can I type my work onto my computer and I need the feeling of pen on paper first to make my writing breathe.

I view my writing as part of me, like children. I create poems; they issue forth after a certain length of time, are given life, then I have to let them go. I wrap them up carefully in a white envelope, caress them with an address, tuck them up with a friendly SAE and seal with a stamp, sending them away like floating paper boats on a stream. Then I wait for the miracle, the impossible, of a return floating back upstream with a ‘yes’ emblazoned on its sail.

The last poem I have written is always the best. I have a sort of love affair with it, keep reading it, go back to look at it, then it is superseded by my next offering. I am very fickle, loving the last one best and forgetting former attachments.

I’m sure I have a ‘daemon’ – not a demon, but a creative spirit, which holds a middle place between heaven and earth, shadowing me, conjuring up visions, colouring my mind with words and pictures, presiding over my destiny.

Ultimately I believe wordcraft (as well as paintcraft) is a spiritual gift from God and although I must have faith in my ability to use words in the best possible way, I am thankful for loving the use of words when trying to interpret and convey how I see, hear, smell, taste and feel the world around me, as well as the mystery of that which is unseen.

 


Poetry

Here is a selection of my published poetry with some from my collections Promise and Mandala. You have permission from both Vivien and M.E. Support to copy them to your friends or family. Please do not alter the poems and ensure that you include the title and credit.

 

So You Have M.E.
by Vivien Steels

You have muscle weakness,
you have exhaustion,
you have pain.
But you have four walls upstairs,
four walls downstairs
and a bit of the garden,
if you are lucky –
on a good day.

You cannot walk far,
you cannot think straight,
you cannot talk long.
But you have a bed upstairs,
a sofa downstairs
and a bit of concentration,
if you are lucky –
on a good day.

You have an ignorant GP,
you have an arrogant Consultant,
you have negative tests.
But you have a radio upstairs,
a television downstairs
and a book to read,
if you are lucky –
on a good day.

Today is a bad day.

 

Echoes
by Vivien Steels

The echo of ourselves -
a lifetime in love –
indestructible if we persevere
for the next song,
poem, picture, person, saint,
all sent specially for us,
all devices made to reach us
as day falls through stained glass
tracing sunlight to heaven.

Separate from food and drink
(that dependable magic)
our spiritual elixir, energising,
blessing our bodies with peace –
peace, travelling along green-shadowed paths,
joy, spiralling into blueness of blue sky,
love, enfolding our hearts with
echoes of a lifetime.

 

Winter of the Soul
by Vivien Steels

I have died so many deaths
in this one life
and still the snow comes.
Every day is night,
every cloud holds rain,
grass does not grow
or birds sing
in this barren garden
where the pond of hope
has iced over
with frosted sighs.
Here depression reigns as queen;
she will not be overthrown,
until the resurrection
of the glorious green of spring
is burnished with His hands and feet.

 

Stasis
by Vivien Steels

There’s that awful halt in everything –
breeze stops blowing, sky stops racing,
sun stops shining,
stars stop sparking –
and the lift has stuck between floors
leaving your stomach up in your throat,
tongue dry and tasting of metal,
swallowing mouthfuls of tacks
while water stops flowing.

There’s that dreadful stasis of nothing –
phone stops ringing,
post stops arriving,
radio stops singing,
garden stops growing –
and the engine has flooded in tears,
ignition cackling ineffectually,
key incorrect and turning only so far,
seats holding thousands of holes
while wheels stop moving.

There’s that terrible state of nonentity –
hair stops glossing,
eyes stop glinting,
lips stop smiling,
skin stops glowing –
and the body has begun to break down,
locked limbs from another dimension,
footsteps warped and wobbling,
pointing in all directions
while world stops turning.

 

Psychedelic
by Vivien Steels

I want to go somewhere;
somewhere there is sky
so blue, so vast,
it fills up my eyes
with sapphires of colour;

somewhere there are tents
made of red felt
singing in the desert winds;
a backdrop of undulating dunes
drifting gold across shifting sands;

somewhere there is sun,
so yellow, so warm,
it knits my bones together
and tickles my skin
with a honey-brown glow;

somewhere there are fields
rolling gorgeous green
over the backbone of hills;
holding its wild flowers up to sinking rain
streaming in from distant seas;

somewhere a kaleidoscope of shapes
whirls its frenzy into the retina
causing psychedelic auras to pulse;
mesmerising with a rhythm of colour
painting my mind with dreams.

 

Colwick Lakes
by Vivien Steels

Water forget-me-nots hug the shoreline round rocks.
The cobbled underbed of dark, dappled stone undulates,
latticed by wave upon wave of light and shade.
Cormorants, like besuited old men in clubs,
cackle, necks curved, and talk about old catches.
A drake, head indigo and shimmering,
drops pearls while shedding streams.
Moorhens stride jerkily by on feet too big –
road-running to snatch the last offered crumbs.
Sun cuts the lake’s surface into diamond facets,
while whorled purple clouds soften the glare,
as the wind throws ruffles of silk
across the grey, marbled water.

The trout man – dull green jacket, speckled cap –
casts his silken line, fly-feathered, back
then forward to lure foolish fish from friendly waters to an airy bank,
and an iron bar.

 
 


Artwork

These are just a few examples of my artwork. My work ranges from Native American Indian paintings to landscapes, to flower studies, to animals, to people, to fantasy subjects and I tend to illustrate my poetry with my paintings.

 
 

 

 

 

 

 

 
 
 

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My brother Stuart and I went to our local screening of Unrest recently, an award-winning documentary film about Myalgic Encephalomyelitis.

Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head”, she turns her camera on herself and her community as she looks for answers and fights for a cure.

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18 Apr 2018
Awareness Ribbons & Wristbands
2 Apr 2018
European Network on ME/CFS
1 Apr 2018
M.E. Support Competition
1 Apr 2018
Anniversary Statement
31 Mar 2018
It Started with a Story
28 Mar 2018
Latest Rituximab Study
26 Mar 2018
Netherlands M.E./CFS Report
25 Mar 2018
M.E. Organisations
22 Mar 2018
PACE Study Reanalysed
21 Mar 2018
Link Between CFS & Thyroid Hormones

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