Endometriosis & ME
Endometriosis & ME By Poet & Painter Vivien Steels October 2005 vivien@riverroad2.freeserve.co.ukLast Reviewed November 2006
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| Introduction |
| I’m in contact with many people who have M.E. both by e-mail & letter & 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 & lecturing in 1986/7 & now spend any energy I get on writing (mainly poetry – my passion, but also short stories & articles) & painting, which I’ve always done, but ironically 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 roller-coaster of an illness. For about 11 years until 1997 I used to run an Endometriosis self-help group & was a telephone counsellor for women with Endometriosis (allied to the The National Endometriosis Society), which I had since Christmas 1980 & it started together with M.E. & an under-active 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 & weakness, sweating, severe head & neck pain, shivering & shaking, difficulty breathing, sleep disruption with nightmares, nausea, dizziness & swollen glands. Menstrual problems/pain were exacerbated after this viral infection. I had 5 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 & palpitations on exertion. I really thought I had a heart problem. With exhaustion & new menstrual symptoms of severe period pain, painful ovulation, heavy periods, pain in lower left side, bowel pain on a cyclical basis & bad Premenstrual Syndrome (PMS), I became increasingly depressed. |
| Endometriosis |
| Endometriosis is one of the most common gynaecological illnesses to affect women & girls (2 million in the UK). It occurs when cells of the endometrium (or lining of the womb) are found in other areas of the body, but usually within the pelvic region. With menstruation, these cells bleed causing inflammation, scar tissue, cysts on the ovaries & adhesions, which can attach themselves to sites such as the fallopian tubes, bowel & bladder. In its severe form it can cause infertility as well as a range of unpleasant symptoms including very painful, heavy periods, PMS, tiredness & exhaustion, abdominal pain, painful sex & painful bowel movements. It often affects women in their 30s, who have delayed having children, but can affect any woman from the onset of menstruation to the Menopause. Usually women do not get the illness after the Menopause. Theories as to why this illness occurs in women are retrograde menstruation, lymphatic/circulatory spread, immune dysfunction (which would tie in with M.E.), genetic pre-disposition & environmental causes such as exposure to pesticides & other pollutants. The main treatments for Endometriosis are drug/hormonal, surgery & complementary therapies. High dose Essential Fatty Acids (EFAs) such as Evening Primrose Oil or Fish Oil, B Vitamins & Magnesium plus an anti-Candida diet/regime may help. All the above went undiagnosed for years by my former Genural Practitioner, 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 & diagnosed, probably because of the way I look… I was always told I looked too well to be ill!! And many women with M.E. & Endometriosis today still have this battle to be believed & diagnosed. I also joined Action for M.E. & became their contact for Women with M.E. & Endometriosis until a few years ago - it is quite common for women to have both illnesses. |
| M.E. |
| Most people know very little about M.E. & don’t really care about it, until they have it or someone close to them does, but that is human nature & 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 affected by Endometriosis now, as I had a total Hysterectomy in 1989 & have daily Thyroxine (see NetDoctor.co.uk for details) for an under-active thyroid, which was detected in 1991) for 25 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 & have loads of things I want to do in life. Ian, my lovely husband &, has been so important to me & 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 & works very long hours at his business, it is very difficult, as he does the shopping for me & anything else that takes a certain amount of energy. We have a cleaner & a gardener to help us (privately employed). At the moment & for a few years now, I’ve reached a sort of plateau where I can do 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 & am often in bed by 8 or 9 pm or earlier. Recently I went through a very bad relapse (after Flu + two infections, antibiotics + antifungals, which both totally disagreed with me). |
| My Life |
| I became a Christian in 1983 while very ill with M.E. & undergoing a year of psychotherapy, as all my medical symptoms were classed as psychological, but I was severely depressed & 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 & being away from home for the first time. My Christian faith is very important to me & I have received God’s healing on many occasions & been involved in the Healing Ministry. I am an inveterate animal lover, who has always had cats & rabbits, though after my last lovely rabbit, Honey, died in 2002, I just have my cat, Misty. Animals are wonderfully healing & I can’t exist without their company. Writing is most important to me (particularly poetry) & painting. Being creative makes me feel alive & links me with creation often at times when I feel most ill & can’t be active & participate socially in life. I am also very lucky to live inside a Country Park with two lakes, from which an abundance of wildlife overflows into our garden & 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 created & designed three websites featuring my poetry, artwork & prose & have also produced & designed two collections of my poetry illustrated with my paintings called *PROMISE* & *MANDALA* at Vivi*Press: • http://talkingpaint.mysite.orange.co.uk • http://vivipresscards.mysite.orange.co.uk • http://petsplace.mysite.orange.co.uk |
| Why I Write |
| I have M.E. But M.E. doesn’t have me – writing & painting do, but especially poetry, which wells up from an inner compulsion as lava from a volcano, so that I am driven to put pen to paper & 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 & inspirations for poems. I envisage myself as a poet & painter & every precious particle of spare energy M.E. allows me goes towards that goal. Having to leave teaching & lecturing in 1987, writing now preserves my sanity, keeping the vital, creative centre of myself aflame, keeping me in touch & sensitive to the world around me, even when my muscles scream like a marathon runner’s & 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. But 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 & 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 & 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 & forgetting former attachments. I’m sure I have a ‘daemon’ – not a demon, but a creative spirit, which holds a middle place between heaven & earth, shadowing me, conjuring up visions, colouring my mind with words & pictures, presiding over my destiny. Ultimately I believe wordcraft (as well as paintcraft) is a spiritual gift from God & 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 & convey how I see, hear, smell, taste & feel the world around me, as well as the mystery of that which is unseen. |
| Poetry |
| A selection of my published poetry with some from my collections *PROMISE* & *MANDALA*. |
| So You Have M.E. 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. © Vivien Steels (Published in Smiths Knoll No:8 – 1994, WRITE-AWAY from 1st November 2002 – 10th January 2003, *PROMISE* - first collection of poems/colour illustrations designed/printed by Vivien Steels/Vivi*Press – June 2003 & accepted by POET TREE/A.B.H.D for publication in 2005) Echoes 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. © Vivien Steels (Published in MOODSWING No: 8 – July 2003, PANDA No: 16 – October 2003, in EXPOSE’D @www.exposweb.net from Nov 2003 & in *PROMISE* - first collection of poems/colour illustrations designed/printed by Vivien Steels/Vivi*Press – June 2003) Winter of the Soul 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. © Vivien Steels (Published in Orthodox Parish of St Aidan & St Chad Newsletter - No: 33 Jan 2002) Stasis 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. © Vivien Steels (Published in WRITE-AWAY Poetry as Therapy feature @ www.radiocad.karoo.net/wa21/poetic-therapy/page12.htm 2nd June – 28th August 2003 & FIRE 25 – March 2005) Why this poem was written: This poem tries to convey the awfulness of depression, which can be caused by continued physical illness, exhaustion, constant battling with trying to find an equilibrium between having no energy and having a little, which like a carrot dangled before you lures you on to ‘do’ things, only to be knocked back again with days, sometimes weeks, in bed having to ‘rest’. Some uninformed doctors argue M.E. is really just depression, but I would argue the depression M.E. sufferers experience results from having such a limited lifestyle when they desperately want to ‘do’ lots of things that healthy people take for granted!! Psychedelic 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. © Vivien Steels (Published in MOONSTONE 95 – August 2004) Colwick Lakes 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. © Vivien Steels (Published in anthology IMMORTAL DIAMOND – Oct 1997 & in EXPOSE’D @ www.exposweb.net from Nov 2003) |
| I hope this article has increased your understanding of both Endometriosis & M.E. I would love to hear from anyone that shares my interests and beliefs. Please take a moment to Tell-A-Friend about Louise’s excellent M.E. Support website. |
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