What follows are a number of articles I’ve written over the last few years, & contributed to the ANZMES Magazine,”Meeting Place,” also some cartoons. I’d like to think that anyone reading this who has M.E. or knows someone with it might find some food for thought. Meeting place is published quarterly & is full of valuable information, it covers both scientific research & personal stories, & is a valuable link with other people treading the same or similar paths. Sub is $40 per year. www.anzmes.org.nz or email info@anzmes.org.nz

Good Health?

“Good health is everything,” we often say this without stopping to consider what this means, it’s a trite expression, & once upon a time I would have nodded in agreement, without giving it a thought. Now I pause to consider…

The change in my thinking is in part because I have M.E. but the main catalyst is a funeral that I went to not so long ago. This sounds morbid, but bear with me, this is going somewhere. The church was packed with a variety of people & I remember thinking just how many lives had been touched by Mark’s life & his death. Favourite songs & pieces of music were played, speakers referred to his wicked sense of humour, his delight in everyday events. Tears were shed & we laughed together at shared memories. I remember thinking what a privilege it had been to know Mark & spend time with him.

Can you get an idea of the sort of person Mark was? A big person, who inspired those around him to give their best, & to be happy, a brave person who faced his life & death with grace & optimism, he readily expressed love & pleasure, curiosity & enthusiasm. Now there are some pieces of this puzzle to fill in: Mark was sixteen, he couldn’t speak. He could barely move. He was born with cerebral palsy, he also had to contend with severe asthma, epilepsy & increasing curvature of the spine.

Mark was probably the size of a small five year old, yet he had the spirit of an adventurer, he loved any physical activity we could contrive to involve him in, being swung in a blanket, doing wheelies in his wheelchair, being held & dancing to music. He rarely complained, his little life shone like a beacon, his face would light up with pleasure at the first few notes of a song, or the merest hint that lunch was on the way.

Geoff & I  & our family were shared caregivers for Mark, for over seven years, until my own health became a problem. Mark would come home for the weekend, every second or third weekend, & he brought an enormous amount of learning & pleasure into our lives. He died peacefully, & I am sure that he is enjoying his new freedom to the maximum.

As I ponder on all this, I have to say that good health is a wonderful thing, yes, but what really counts is what we do with what we have, how we live our lives, each with it’s own set of unique gifts & limitations. Our sense of joy & wonder, the ability to see the funny side & not take it all personally, to share love & affection, these are tools we can use at any time. For me the challenge of knowing Mark, is how to recognise & make the most of what I do have.

Saying “Goodbye” to Pioneer Girl

I remember, when I first got sick, nearly four years ago, I felt that I was no longer me, I had nothing to offer, I was so much less of a person, & that I had no idea who this new me was.

Up until that time I had defined myself, by what I could do, my work, my stamina, & what I could give of myself. One evening, I was watching a documentary about workaholics on T.V. One woman was talking about how driven she had been, not resting when she was tired, always pushing herself etc. etc. & then she had got M.E. For me it was like a slap in the face, a serious wake up call. I had never seen myself as driven, I wasn’t in a high powered job & yet I related totally to what she was saying. I had some thinking to do, the attitudes I had to work, rest, my health & my self value had contributed to my health problems.

At the time I was too poorly to do much self evaluation, any emotional upheaval left me exhausted for days. A year or so later, when I was feeling that I had a little spare energy I went to counselling. I was lucky that the local Womens’ Centre provided counsellors trained in Psychotherapy, on a koha /donation system. It was a daunting & tiring process, often I would need a few days to recover after a session, but we unravelled many useful pieces of information. We looked at my fears, beliefs, my lack of skill in defining boundaries, relationships: which ones nurtured me & which drained me.

It was in one of these sessions that ‘pioneer girl’ emerged, she was a facet of myself that I’d developed over 30 years ago. At the age of 19, with a young son & a tentative marriage, I had emigrated to New Zealand, to join my parents & younger sister. I was sad to leave England, my friends & family & all that was familiar. Initially, we lived in a tiny caravan, in Northland, with  my parents in a bach, we had no bathroom, no toilet, only a bucket in the shed, a water tank we baled water from to do the washing & a six month old baby.

I worked hard physically, so that each night I fell into bed exhausted, I think I numbed myself to the strangeness & sadness I felt. A year or so later when my parents divorced I already had a strategy in place for coping.

My ‘pioneer girl’ attitudes helped me through some difficult times, but in retrospect she outlived her usefulness & became a rod for my own back. Unconsciously I pushed myself to the limit over & over, physically, mentally & emotionally, expecting far more of myself than I did of other people.

I’m pleased to report that I am learning that I am still me, regardless of what I do or don’t do. I am better able to regulate the drives I have, & can even stop part way through a task, no small achievement!. I write a list of goals, & instead of trying to finish them in a day, I allow a week, or more, & sometimes I just cross things off, undone.

 I’m learning to be ‘time’ oriented rather than ‘task’, re-training myself with a timer. I have learnt that it’s OK to say ‘no’ & be inconsistent,  I choose to spend time with people who have similar values & aren’t driven. All in all, my life is richer & more nourishing. Often at the end of the day I ask myself “ what have been 3 good things today?”  The answers are surprisingly simple, such as sitting in the sun with a cuppa, watching tuis in the Kowhai tree, talking with one of my children. That elusive & magical sense of calm, & joy can strike at unexpected times, & places, &  is not conditional on what I have achieved.

Spirituality

“Whatever your heart clings to & confides in, that is really your God.”

                                                                                        Martin Luther

When I first got sick, five or so years ago, some of the first symptoms I experienced were heartbeat irregularities. They scared the life out of me, literally, & that made me more scared since I knew that stress would only make matters worse. So began my search for calmness & a sense of myself as steady & able to weather life’s storms.

My spiritual beliefs have always been an amalgam, bits & pieces of wisdom gleaned here & there, that have resonated with me, a sense of “Aha, of course…” I think my spiritual growth accelerated about 20 years ago, when a close friend  committed suicide. I began to read a lot of books on metaphysics & the afterlife, trying to understand what might have happened to him after he died. Some of the things I read did help me to make sense of, not only his death, but my life, like finding pieces of a jigsaw.

Being sick motivated me to hunt out more pieces of the jigsaw, & also to explore who I was, & how I had shaped & could shape my life. The finding of a calm acceptance, & the ability to find pleasure & delight in my daily life, seemed crucial to me.

It’s difficult to pull together the strands of my beliefs, which are a unique & personal blend, if I said I belong to such & such a church, most people would have some  model to work on.

So here is my own belief system, allowing for errors in language & important things I may have forgotten right now:

I believe that we all carry Godliness, Oneness, Light, whatever you want to call it, inside of us.

I believe in personal responsibility, Karma, & reincarnation by choice.

I believe that we are here to explore life fully,  & with joy.

I believe that I am here to be the most “Jan” I can be, embracing my uniqueness.

I believe that often the most profound learning comes from the most difficult situations.

I believe that the Universe is abundant, there is enough, so I can share what I have.

I believe that my thoughts  do shape my reality, & the clearer & more positive I am in my thoughts, the  better it is.

I believe that other people make their own choices, & grow their own way, I can’t be responsible for that.

I feel very lucky that I have always loved & appreciated the natural world. Watching the turn of the Seasons, birds in the garden, the sky by day & night, water in its many forms, all of these things feed & delight me, even in the hardest times.  The world outside my window is  one of the things my heart clings to, & the first place I look to find “my God.”

Books etc I have found helpful:

Living Magically by Gill Edwards

The New Book of Runes, by Ralph Blum

Conversations with God by Neale Donald Walsch

Black Holes & Energy Pirates by Jesse Reeder

What the bleep do we know? DVD

Wai Lana, Yoga- Easy Beginners Work Out, Video (maybe DVD) from Library, don’t be tempted by the others in her range they are discouragingly hard, this one is well balanced & you can work to your ability or lack of.

Talking Books.

These have been  a mainstay for me, I have a few favourites, that I could listen to over & over. I find CDs easier than tapes, if I fall asleep I can backtrack easily( actually I use them to help me sleep.) It’s worth giving the discs a clean before you start listening, to avoid the frustration of having to get it out half way through to clean it. I always get out more stories than I think I’ll need, as some readers are hard to listen too, & some stories are too boring or violent. One more thing, remember to check the case has all its cassettes or CDs in before you return it, it is very embarrassing to ring up, more than once to tell the library you’ve just found one left in the machine!

The Cadfael series, by Ellis Peters. Brother Cadfael is a sleuthing monk, & herbalist, who is gently subversive. The murders are not upsetting, in part because the writing is so lyrical & rich, & also they are handled in an objective way. I say this as someone with a strong aversion to anything remotely heavy. Read by Derek Jacobi, who plays Cadfael in the film series, (also at the Library). I think the first in the series is “A Morbid Taste for Bones” which has a wonderful twist in its tail.

No 1 Ladies Detective Agency, by Alexander McCaull Smith.

Set in Botswana, Ma Maromotswe (apologies for spelling) sets up the agency, & very gently goes about solving, & philosophising a number of very human problems. Read brilliantly, & with a great cast of characters. There are about 5 books in the series.

My Family & other Animals, by Gerald Durrell, & any others by him. Great stories of a famous naturalist.This first book is about growing up in Corfu. Beautifully written, laugh out loud funny in places, & evocative of a bygone era.  Durrell has a great ear for accents &  idiosyncrasies of speech, & his love of nature shines through.

Setting Boundaries Cartoons:

Book Reviews

Chronic Fatigue Unmasked 2000

Gerald E. Poesnecker N.D  D.C.

Published by Humanitarian Publishing Co.

I’ve probably read 20 or 30 books on M.E./C.F.S in the last four years, & if I can glean  one or two useful pieces of information from one I’m happy. ‘Chronic Fatigue Unmasked’ has plenty of helpful information & explanations. It’s written in an unpatronising & perceptive style, the print is clear & readable, & the format is not so dense & technical as to be daunting. It repeats certain points in a number of ways, so that concepts sink in ( speaking for myself that is.) I must confess I haven’t read it cover to cover, I’ve dipped into the interesting pages, & I didn’t read the chapter on history at all!

The main thrust of the book, looks at the neurohormonal system & explains a number of things that have seemed perplexing, like why when I first became unwell my energy levels were all over the place, sometimes frenetic &  then  flat on my back. You’ll have to read about the Hypothalamic-Pituitary Axis to find out why, I can’t explain it in a few words.

Poesnecker explores the differences between someone with an inherently weakened  hormonal system, who needs very little stress of any sort to trigger C.F.S & someone with a tough system that gets thrashed by long term stresses until it weakens. He talks about minimising stress in a realistic way, he likens physical stress to 1 point on the stress scale, mental to 2  & emotional stress to 4 points, & discusses that sometimes doing something  physical that we know is tiring, may be less of a stress than the emotional burden of not doing it. I liked that, as sometimes I feel like I make the wrong choices, to do something, like going out in the evening, but perhaps I’ve been making the optimum choice after all.

The book is also very clear that we should avoid anything that stresses our systems as much as possible, & this may mean weighing up treatments, looking at whether work of some type is more or less stressful. In the chapter headed “The Nature of the Patient” a couple of things interested me, firstly it talks about some  people  who energise & how others deplete our energies, & how many C.F.S sufferers are very sensitive to  this, & especially find crowds exhausting. ( So I’m not just being weird!) One of the other drains on our energy is the telephone, I thought I was just being odd when I refused to talk on the phone for  weeks on end, it’s reassuring to discover that many of my so-called idiosyncracies are “normal.” Well you know what I mean.

Finally, my favourite chapter, & Geoff backs me up on this. I was a little surprised to come across a chapter headed “Sex & the C.F.S Patient” not that the title is unusual, but the content surprised me. Mr Poesnecker is following a whole new train of thought here: he  has written about using sexual energy for healing, it’s a novel & yet simple & appealing concept. In case you’re interested I’ll just run through the basics, to quote

1)      There must be a physical exchange of both male & female fluids at each coitus.

2)      There must be strong feelings of love, not lust or mere sexual attraction .

3)      There must be a willingness on the part of both participants to accept full responsibilities for the consequences of their act. ( not just pregnancy, but responsibility for each other.)

The affirmation in the book is a bit wordy for me, being “ we are desirous of utilising as much as possible these energies which we are exchanging during this act of love, to help build & strengthen my body (his/her body) to help overcome the weakness in my (his/her) neurohormonal system” We use a much simpler version, “I take (give) this energy & love for healing” & I always send some back to Geoff to keep him strong & healthy, as well.

I’m uncertain of what tests & treatments are available in N.Z, but even without these I feel there is a lot of useful advice in this book. I’ve found a homoepathic  glandular remedy, Lifeforce ENS, & I would imagine there are a number of other alternative supports.

It concerns me that many of us, when we first get sick,damage our systems & compromise our recoveries, by not knowing that rest is so important, & stress level management  critical. It would be great if there were flyers in all Doctors surgeries explaining this very basic tenet of M.E.

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