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Sunshine and Hope

Posted on October 29, 2011 at 2:40 PM Comments comments (0)

Sitting on the sofa this afternoon, hands clasped tightly around a mug of tea whilst gazing through the window, it suddenly dawned on me that British Summer Time ends tonight. The shorter days and longer nights are once again upon us. Unbelievably I can remember writing a blog post at this time last year; the months have sailed by at an alarming pace. Perhaps even more alarming is Christmas, looming like the grim reaper in the not too distant future. Sorry folks, for those of you who don’t know; I am the original Bah Humbug! I wish I wasn’t, I really do. However, I can say with confidence that I am not alone. The breakdown of my first marriage in 1991 put an end to enjoying Christmas ever again. The addition of another husband, a third child, and then... Another broken marriage, only served to exacerbate my reluctance, or rather my inability to enjoy the ‘festivities’

 

Anyhow, attempting not to think too far ahead I began to reflect on the last year. It somehow seemed an appropriate time to stop and address my ‘bucket list’. You know all the things you want to achieve set out in a list! For me, it has always been about setting realistic goals. Not expecting the impossible, and finding some kind of serenity amidst the uncertainty and difficulties living with chronic illness poses.

 

I was devastated when Lupus put an end to my career. Losing a job I loved through an incurable illness when I was a single mother with a mortgage to pay, was probably one of the darkest times in my life. For a while I battled blindly whilst trying to cope. Feelings of inadequacy, hopelessness and loneliness filled my days, never believing I would see sunshine again. Life had become an abyss of darkness. Eventually I learnt to live in the here and now and take the good days with the bad. I renewed my faith and focused on my dreams. From deep within my psyche came the overwhelming passion to write verse I went to sleep one night, only to wake the following morning with"‘Do Not Judge" the first poem I ever wrote reciting in my head... And so it began!

 

I was able to tick ‘publishing a book’ off my list in February 2011 when "Raw Emotion" was released. I am very proud of my little book which was produced in support of the two charities close to my heart; Lupus UK and Breakthrough Breast Cancer. March and April were surreal months... I was on the radio, I did book signings and was regularly in the newspaper. As always, pushing the boundaries of my day to day had its repercussions; between signings I could do little else. Having Lupus means you often pay a high price for assuming normality.

 

A rare afternoon of sunshine during March had me sitting in the little yard. The breeze was ruffling through my hair and the sunrays warming my face. Deep In the archives of my mind were memories of lost love which somehow ignited the inspiration to write a song. Furthermore I had a strong desire to enter the lyrics category of a prestigious song writing competition - the 'UK Song Writing Contest' which attracts entrants from all around the world. I didn't disclose this to anyone believing that if I didn't do well, nobody need know! 

 

Summer arrived to see my daughter graduate from university; I think graduation is always a difficult time for any mother. Already suffering the effects of ‘empty nest syndrome’ I was faced with the reality; my little girl, all grown up, would not be returning to her home town but would stay in the south over two hundred miles away. One evening, whilst reflecting on her childhood the burning desire to write another song was conceived.

 

Over the following months I discovered three of my poems had been chosen for publication in three separate anthologies; two in publications by United Press and one in a publication called ‘Forever Words’ by Forward Poetry due out on October 31st. There is no greater endorsement as a writer than to have your work chosen for publication...

 

Late July, August and September were particularly bad months; cerebral lupus reared its ugly head and I felt desperately ill. I had to retreat back into ‘myself’ to summon the strength to continue. Imagine my delight when I received the exciting news, my lyrics entry “Sitting in the Sunshine” had reached the semi final of the song writing contest... It was my first song, written only a few months earlier! I was thrilled. Ironically it was “Do Not Judge” my first poem which was chosen by United Press to be included in ‘The Power of Poetry’ anthology.

 

Doing well in the competition gave me the impetus to explore and develop my song writing further. I’ve met people from within the song writing community, who I would never otherwise have met. Both “Sitting In the Sunshine” and “Angel Child” have been beautifully composed after collaborating with two very talented composer/songwriters.

 

I guess many of us dream about writing a book, or a song that later goes on to become a hit. I can dream about the ‘hit’ part; although the joy I get from writing is immeasurable; it is my ‘Sanctuary’ the fire inside which keeps me strong. I remember saying the very same after ‘Raw Emotion’ was published. I’m undoubtedly on a journey, I don’t know where it may lead; but at the very least it is a journey! One which surrounds me with sunshine and hope.

 

So, dark nights may be upon us and my health issues will continue, but I am approaching the latter part of the year with eager anticipation rather than trepidation.

 

On Monday 31st October I will be joining Sally Naden on BBC Radio Lancashire to discuss poetry and song writing. It will be my third time on the radio... However remaining on my ‘bucket list’ is a wish to appear on the ‘This Morning’ couch with Philip and Holly! Do I still dream, or make it a reality? All I know is; If the last year is anything to go by, anything is possible!!

* To listen to the songs visit the links page here on "Shared Experiences"*

Tormented Souls.

Posted on July 25, 2011 at 9:54 AM Comments comments (1)

Amy Winehouse dead at 27. A premature end to the life of an extremely talented, yet hugely tormented soul.

 

I cannot help feeling incense at the many ill informed, judgemental, incompassionate comments which have appeared on my twitter timeline.

 

To understand pain you have to have felt pain, be it mental or physical; otherwise you can only assume you know. Assumption is arrogant. The depth of anguish one feels when driven towards any form of substance abuse is tragic. Addiction is an illness. For those of you who think otherwise, consider yourselves ignorant!

 

It is said that depression will become the second biggest killer after heart disease by 2020. I for one, battle depression on a daily basis. For me it is a consequence of chronic illness and what I consider to be, a result of my sad life. It is not a personal weakness as some may suggest. I would go as far as to say it takes tremendous strength to fight ones demons.

 

Amy’s state of mind transpired in the creativity of her profound song lyrics. The desperate state of a gifted mind is adept at creating works of art during devastating episodes of despair. It is during these moments our thoughts are at their most prolific. We can recall many of the late; great artists, poets, authors and musicians who are known to have suffered mental illness. John Keats, Michael Angelo, Charles Dickins and Tennesee Williams to name but a few. How ironic that from deep within a troubled psyche creativity flourishes and in many cases serves to leave a lasting legacy.

 

The sadness I feel when remembering the demise of the King of Rock and Roll and the King of Pop; Elvis and Michael, will never leave. Like Amy, departing from this world amidst a furore. One which was fuelled by drugs and immeasurable pain.

 

I cannot comprehend some people’s unwillingness or ignorance in understanding the destructive cycle an addict find themselves in. Addiction is a painful, insidious illness, often resulting from underlying mental health issues. It was no secret that these iconic musicians led deeply troubled lives, battling their demons within, whilst constantly being scrutinised by the media.

 

Have you ever found yourself engulfed in an abyss of sadness… A deep dark solitary place., where there is no light, and even the gentle breeze hurts? I’ve lived with physical illness virtually all of my life. I’ve had more surgery than I care to remember and I’ve beaten cancer, yet depression can still…

 

* Engulf me when I least expect and draw me deep inside, to a lonely cavern of emptiness… a place I want to hide... *

 

Okay, I haven’t succumbed to illegal substances to get me through, but I do rely heavily on prescription drugs. However, if I was rich and famous and lived my life in the media spotlight, would I have the strength to resist? I would like to say yes, but that would be arrogant! I’m not rich, or famous, therefore in all honesty I don’t know. The pressure must be immense!

 

What I do know is; illness, mental or physical is destructive; it eats away at the very core of your existence. It robs you of choices in life, it holds you captive in a private world of anguish that seemingly few understand.

 

Amy’s music will live on in the hearts and minds of those who adored her. Her creativity, as in the case of others, was born from within one deeply troubled soul.

I only hope now she will rest in peace, along with the other iconic musicians and artists who sadly left this earth prematurely.

RIP Amy.

                                                                     - - - - - - - -

* This line was taken from one of my poems Depression featured in my book

Raw Emotion By Jane Gill-Wilson.

The book is available to buy from Amazon and candidly shares my own journey through illness, including depression.

 

 

Rhyme or Reason!

Posted on June 30, 2011 at 12:38 PM Comments comments (0)

There was a time when I was unsettled by unexplained phenomena; you know, the things that go bump in the night! The fear of the unknown use to scare the hell out of me, I hated the dark and would sleep with the landing light on, well into adulthood.

 

There’s so much about my life that defies explanation; I’m not a ‘bad’ person, I might have done some stupid things, made bad choices, but then who hasn’t? No matter how hard I try to reconcile all the ‘wrong’ in my life, or attempt to turn desperate situations into purpose I’m continually left sinking in quick sand, or swimming against the tide… Wishing, hoping, longing and yes, SO very often praying! I guess the message I grew up with was… Nothing is ever so bad, there’s always a solution, and we do have choices. However life has taught me that actually; life can indeed be really bad! Solutions aren’t always easy to find, and choice is a luxury.

 

The greatest gift we can be blessed with is good health; something many take for granted. Those of us who battle every single day with debilitating illness would trade all the money in the world to live a life free from pain and malady. Illness eradicates the freedom of choice; it enforces restriction on what we can do, and can destroy ones ability to maintain employment. The belief that life on sickness benefit is easy couldn’t be further from reality. As an intelligent, self respecting individual I find the mere process demeaning, humiliating and tragically hard. Many of you reading this will be aware of my current campaign addressing the unreliable ‘all for one’ work test the government have implemented. It’s my aim to raise awareness of the plight sufferers of chronic illness face, and encourage a more lenient, empathetic approach to reassessment. It is unjust and immoral to continue putting ‘sick’ people through the current means of testing.

 

I couldn’t tell you how many times I’ve cried into my pillow at night. Losing my job and home as a direct result of ill health was devastating; looking ahead at a bleak future is soul destroying. Unpredictability makes it impossible to plan anything, I don’t know how I’ll feel, or which symptom will rear its ugly head day to day. I have little energy and miss out on planned events with family and friends, as all too often I’m forced to cancel.

 

 

You know the saying… “Life is a bitch” Well for some, it really is!

 

Last night I became overwhelmed with fears for the future and all too quickly was consumed with negativity. Sometimes I’ll wake in the night choking and gasping for breath, I don’t know why this happens I haven’t mentioned it to my doctor as I’m choosing to believe it’s a manifestation of anxiety… I couldn’t face yet another medical referral! However, to wake alone in the dead of night fighting for breath is terrifying. As I turned off the bedside lamp and settled down under the duvet I said a silent prayer; I prayed for strength to see me through the next day and a peaceful nights sleep. I awoke calmly this morning to discover my bedside lamp glowing brightly beside me and music playing from the radio channel on the TV. I might be a ‘Lupie’ (the endearing name Lupus sufferers give each other) but I do know I turned both off last night; the remote for the TV was left by its side… How bizarre! Bizarre it might appear, nevertheless comforting for me.

 

The unexplained has happened many times, particularly over the last year! Often I feel I’m being guided and inspired to pursue writing. I have no idea how my ability to write verse transpired. I went to sleep one night over a year ago; I was physically and mentally drained, and so desperately sad. I prayed again for strength; for life to provide a sense of meaning, a purpose amidst adversity.

 

The next day, overcome with emotion I penned my first poem… “Do Not Judge.” For weeks I was compelled to keep writing. I was writing verse in my head, whilst in the shower, driving my car; anywhere and everywhere, it was truly surreal! Now I look at my little book ‘out there’ and wonder how it all began… Suddenly, from nowhere!

Since the publication of ‘Raw Emotion’ I’ve been inspired to write and produce a new range of inspirational cards. ‘Original Raw Emotion’ Tender words from the heart. I’ve taken delivery of two print runs and am proud to see the finished cards. I can’t work for an employer, I can go days without the energy to even get dressed. But what I can do is utilise my emotional energy and create beautiful verse in my head…

 

“I’m thankful for the place I go

When my life is filled with dread,

The comforting place called sanctuary

I found it in my head.”

 

I guess last night my prayers were answered; the negativity had been replaced with a renewed sense of optimism on waking today. I’m fuelled with desire to explore this inspirational opportunity and create a means of working from home within the constraints of my illness; one that will alleviate the constant financial burden I carry each day. However, above all I want to share my verse and will stop at nothing until I see ‘Original Raw Emotion’ in shops up and down the country.

 

I’ve contacted the department for work and pensions to discuss my business initiative in an attempt to seek some kind of support; surely they would welcome someone trying to ‘help themselves‘… Alas it would appear there isn’t support other than the permitted week scheme! So, for now I’m left struggling through the fog, I have absolutely no business acumen which is making the process even more daunting, however I do have an ex husband who is an accountant and a number of old friends who are astute business men… Perhaps it’s time to dig out my address book!

 

My lovely late nana always believed that things were sent for a purpose. When life is tough, when we are overwhelmed with difficulties it is SO hard to find reason but slowly in time reason becomes clearer and right now I have never been more clearer about my ‘reason.’

 

Thank you for reading, that’s if you made it to the end! And… watch this space :-)

Kindred Spirits

Posted on May 21, 2011 at 11:00 AM Comments comments (1)

I guess there are only SO many times you can say “No thank you, I can’t do that,” or “I’m sorry I’ll have to cancel today” to well meaning family and friends. Eventually they tire of your response and stop asking. The sceptics amongst them might even challenge your reason; with, “But you don’t look sick” or, “Surely you can?”

 

This is the harsh reality of life as a lupus sufferer, or indeed anyone who lives with the debilitating effects of chronic autoimmune disease.

 

Lupus, is an incurable, unpredictable, unbelievably frustrating disease. As yet there is no cure; treatments range from anti malarial drugs to steroids, and in some cases cytotoxic drugs (chemotherapy). Treatment may include anti depressants and copious amounts of pain relief. I have an acute sensitivity to some drugs, which means I can’t tolerate everything prescribed; this reaction isn’t uncommon amongst sufferers, it impedes symptom management and prolongs duration.

 

There’s so little understanding of this disease, often called ‘The Wolf.’ It rears its ugly head when you least expect and stalks our every move! Even when the disease is classed as inactive, the overwhelming exhaustion which plagues almost all of us never leaves. It serves as a reminder that our life is compromised; that we have to take care of ourselves, that we may not assume ‘normality’ for if we do, we may pay a heavy price.

 

Can you imagine a life where pain affects your every move, where exhaustion accompanies you every day; or the anguish that comes with not knowing which symptom will attack you next?

 

My history of lupus is life long. I was a ‘sick’ child with many episodes of viral illness. There was always something; I have such vivid memories of my plagued childhood. Frequent urinary tract infections, fever, swollen glands, malaise, painful mouth ulcers, headaches. The affliction continued into adolescence, by the time I reached adulthood symptoms were so varied and debilitating, my life became seriously compromised. My relationships were affected, maintaining employment became difficult, and the overwhelming depression that haunts the chronically sick became too much to bear, and I ashamedly admit to attempting to take my own life.

 

I know I’m writing on behalf of the millions of lupus sufferers out there. We may not have exactly the same symptoms, but what we do have is a compassionate understanding of each other.

 

Even though my whole life has been blighted by illness, and it’s the belief that a severe attack of infectious mononucleosis was the catalyst for me developing lupus. It was however, only during the six years prior to diagnosis that I regularly saw a Consultant Immunologist. He knew I was ‘sick’ I was his puzzle, one which was increasingly hard to solve. He would regularly scratch his head whilst shuffling test results around his desk. He had a determined desire to discover what was wrong; he displayed the utmost respect and concern towards me and I felt privileged to have him as my doctor. He noticed a problem with my white cells and platelets; it was as though he was arduously fitting together the pieces of a jigsaw puzzle. One day, I was so ‘sick’ my parents made an urgent call to the hospital and demanded I was seen immediately. I was losing weight, completely devoid of energy, and covered in a rash; my head hurt so badly I was losing the will to live. Thank goodness I was seen, the final piece of the jigsaw slotted into place as a series of blood results finally clinched the diagnosis. I was diagnosed with SLE in 1996 and referred to my now Rheumatologist, a specialist in connective tissue disorders.

 

I was very ill, I was experiencing ‘stroke’ like symptoms and severe headache. It was at that point I began cytotoxic drug therapy to treat cerebral vasculitis. Lupus affected my pelvic organs, damaged my eyes, I have symptoms too painful to disclose. I have widespread osteoarthritis in my whole spine, knees, hips and feet. Fibromyalgia affects my soft tissues, making at times even the slightest hug painful. No amount of rest can alleviate the insatiable exhaustion I feel. Symptoms which can be there one day and gone the next, are too vast to mention. The fear is never knowing which one will strike again, and when.

 

It’s now fifteen years since my diagnosis, I’ve battled other serious illness including breast cancer; I’ve had gynaecological disease and surgery. My life seems to be dominated by frequent hospital appointments with little respite.

 

I’m a qualified nurse and during the years I was able to work I devoted my life to helping others. Either in a ‘hands on’ nursing environment or in a listening advisory/counselling capacity. My career ended in 2007, since then I’ve battled overwhelming depression associated with the disease: I’ve felt let down by society, abandoned by people I thought were my friends. I’ve experienced reaction from people whose ignorance wont allow them to ‘look’ beneath the surface… The “You look okay so you must be” reaction! I’ve struggled every single day to make sense of my life, to find reason to get up in a morning. All the time attempting to reach out to others, to raise awareness of this wretched disease and the isolation it can inflict on its victims.

 

I’m sadly alarmed by the lack of understanding and knowledge there is of lupus There’s a high level of support for sufferers of cancer and other diseases which have greater public awareness. Yet, for Systemic Lupus Erythematosus - hard to say yet SO much harder to live with! There is little understanding, and in many cases a lack of compassion. Lupus is incurable, it can be life threatening, it affects the lives of millions of people world wide and continues to compromise mine.

 

I often blog about the internet being my ‘lifeline’ the isolation I feel at times is devastating. I’ve always been a ‘people’s person’ who thrived on conversation. Giving up work created an enormous void in my life, one great big empty hole! Little by little, people who once called, stopped calling… I’ve been so busy living one day at a time, trying to cope, that I hadn’t realised how insidious isolation could be. It hit me just lately, I’m very much alone in a private anguish that few understand. That is until I discovered a facebook site for lupus sufferers… other ‘lupies’ the endearing name we give ourselves.

 

It’s been refreshing after fifteen years of feeling ‘alone’ to connect with many people who feel as I do… ‘Alone in a world that few people understand’ I’ve connected with remarkable, courageous people from all over the world, who all share a very special bond… Lupus.

 

I want to thank each and everyone of you whose life has touched mine over the last few weeks, and say “Never Lose Hope” God bless.

 

The Spark That Makes My Fire Grow.

Posted on April 6, 2011 at 12:19 PM Comments comments (0)

How delightful it would be to have Josh, my seventeen year old, greet every morning with the enthusiasm he demonstrated today! I guess a trip from Old Trafford to Stamford Bridge, the home of Chelsea Football Club on the supporters coach, is considerably more appealing than the hour bus journey into college. His passion for Manchester United is one that’s intensified since his first home game, at the age of three. A furore he shares with his older brother and Father. His Father, a ‘Mancunian’ as indeed I am - has followed his beloved team since the Bobby Charlton days… The days when he stood in the ‘Stretford End’ with his own Father cheering on the ‘mighty reds’.

 

Football has the uncanny ability to arouse a vast array of energy and, emotion in my otherwise apathetic son. Witnessing his vigour on getting out of bed this morning was somewhat refreshing. The tedious morning ritual of repeatedly yelling; “Josh will you get a ****** move on” was replaced with

 “Ah Good Morning son, how are you? Have a nice day” 

It would be much easier to start the day on a positive note, rather than the negativity which usually governs!

 

Dragging myself out from under the duvet following a night of interrupted sleep is arduous. My vision’s blurred, my joints are painful and the overwhelming fatigue which continually blights my existence does little to arouse enthusiasm. Couple that with a stroppy teenager, who needs a rocket up his backside; then it’s not surprising I find the temptation to crawl back under the duvet, hard to resist.

 

This morning was like no other - Josh was up, ready, and eager to go! I, on the other hand, was not eager to go anywhere. However, I was up; unusual pleasantries exchanged over breakfast, and a positive start to Wednesday commenced.

 

The sun’s reflection through the window fooled me into thinking how nice it would be to venture outside. Maybe take my beautiful bound notebook, a tool every writer should possess - and go and sit by the river; tap into ‘Sanctuary’ the little place inside my head, where I record my thoughts in rhyme! Sadly the sight of the trees blowing relentlessly in the wind, were enough to alert me to, it not being a ‘Janey day’ My aversion to this weather, has and always will, cause anxiety.

 

I’ve spent a lifetime disguising the anomaly, with my hair! Goldenhar syndrome caused my auricular deformity and hearing loss, which fuelled the abhorrent feelings within myself. The intense need to remain covered at all times manifest itself at a young age. I wanted to be like other girls, wear plaits or pigtails and feel my hair blowing carelessly in the wind. I guess the ridicule at school did nothing, but reinforce that I was different; fuelling my belief that I was in fact ugly. No amount of reasoning will have me believe otherwise, and being outside on a windy day is akin to being naked in public! I guess it’s just another cross I have to bear, albeit a self limitating aspect of my life.

 

Josh gone, I sat at the dining room table admiring the scenic views through the living room window, I sat quietly for a while watching the trees wavering in the distance.

“Why can’t I laugh and toss my hair? And feel it sweeping in the air” the words from ‘Why Can’t I See’ a poem from “Raw Emotion” suddenly sounded in my mind! I really do cherish the little place inside my head. Losing myself in writing has become my deepest passion. I jot down thoughts and ideas in the little notebook, or tap away at the keyboard whenever I’m inspired. It didn’t matter that I would spend the day inside. The creative juices were flowing, and the warmth of the sun through the window proved comforting.

 

In a couple of weeks it will be the first anniversary of Shared Experiences. I couldn’t have imagined twelve months ago what opportunities would present themselves; doors are opening and more projects are on the horizon. Physically life will always be a struggle, but mentally I’m feeling good - Hmmm!!! Providing Manchester United secure a win at Chelsea this evening; otherwise I will have an enraged Josh to contend with on his return.

 

A year ago, whilst fraught with emotion I made a pledge to myself. “Never give up on my dreams and never lose hope” Losing my ability to work robbed me of self worth, thrust me into isolation and exacerbated my depression. Channelling emotional energy into something creative has been a most cathartic experience.

 

I was delighted to receive a letter from Denise Robertson of ITV This Morning, who said:

 

“Your poetry certainly touched my heart and I think the reason it works so well is two-fold. Firstly, those who have known suffering will be able to identify with your journey and your sorrows. Secondly, it gives those who have been more fortunate a glimpse behind the ‘condition’, the ‘problem’ and the face that is presented”

 

I was honoured to receive endorsement of my work from a popular figure and, as the respected author Denise is. It gives me great satisfaction to know that my little book is ‘out there’ and has been received positively.

 

Inside all of us is a fire; often just smouldering embers which need reigniting from time to time… A belief in ourselves, or a fiery passion which has the ability to lighten the darkest day. Whilst Manchester United may well be the spark that ignites many a fire, I’m content in having found mine… Writing - which truly is, the spark that makes MY power grow!

 

 

A Dream Turned Reality!

Posted on March 16, 2011 at 10:56 AM Comments comments (0)

“As every bud of life appears I can relinquish all my fears, the welcome sight of blossom bloom casts aside all my gloom”

 

Spring has to be my favourite time of year; the dark cloud of winter slowly evaporates, lighter nights emerge and a renewed sense of optimism for the future is born. Winter is a challenging time for many, but living with a debilitating illness under the dark cloud of shorter days, adverse weather conditions, exacerbated symptoms and isolation, is a trial to say the least!

 

At the end of last summer I set myself a goal; one which would keep me focused through the long, challenging, arduous months. Writing is my passion, something I can do from the comfort of my bed or sat in my dressing gown at the dining room table. It’s undoubtedly cathartic and has helped me through some incredibly difficult times.

 

I remember having a conversation with my hairdresser of twenty three years; I emphasise twenty three years… The longest relationship I’ve ever had with a man! I was eager to tell him about my plan to publish a book, it seemed nothing more than a dream back then. I was fuelled with inspiration, I’d stumbled across an innovative way of telling my story through verse. Ralph said, “Do it Jane, believe in yourself, stick a post it note on your fridge with a date on, a date to work towards”

 

… And, so I did!

I decided I would write my book and launch it with a Spring theme. Spring being a poignant time of year and cherry blossom particularly symbolic, having planted a tree in the garden following my breast cancer diagnosis in 1997.

 

I therefore spent the winter months, crafting poems, as and when I was inspired; often waking in the early hours with verse in my head. I wrote ‘The Gift Of Life’ on my birthday in a local coffee shop. I was filled with melancholy that day, but sitting alone drinking coffee and eating cake I realised: ME! of all people should embrace the life I have; for I survived, I beat cancer, I therefore “Have no right to sit and weep”

 

‘Blossom Bloom’ another of my poems describes exactly how I feel at this time of year. The elegant book jacket, designed by my son captures perfectly the symbolism of cherry blossom. ‘Sanctuary’ is a depiction of what writing means to me and is the opening poem in my collection.

 

It wasn’t easy finding a publisher who would endorse my work and put their name to producing my first collection. Venturing into the world of publishing is daunting, yet I’m so very lucky to have found Helen Hart of Silverwood Books. Helen has guided me through the process with expert ease, and ahead of schedule published my first book ‘Raw Emotion’ in early February.

 

On 5th March I held my official launch. WHSmith store in Accrington hosted an author signing event and ordered a stock of my book! What a surreal day that proved to be. It began with a live interview on BBC Radio Lancashire. I’d been invited into the studio very early in the morning, sadly I had to decline the invitation as being a ‘Lupie’ I would have burnt out by lunchtime. I needed to retain all energy for the launch at 1pm. Not easily deterred, radio Lancashire decided they could interview me, LIVE on the telephone. GULP! The things I do in my dressing gown… Yes! you’ve guessed; I was sitting at my dining room table, in my pj’s sweating profusely, teeth trembling when I got the call from the producer:

“Good morning Jane, how are you? Great ok, there’ll be a thirty second intro then you’re on”

All I can say is “Oh My God!” It was unnerving talking to the north west especially whilst still in my pj’s! However, I’m glad I felt the fear but did it anyway. A number of people turned up at WHSmith having heard me on the radio, and not only that, ALL the books were sold!

 

For two days following, I was fit for nothing coming back down to earth with a tremendous bump. My body ached, and once again I was filled with insatiable exhaustion; as ‘explanation it does defy’ Lupus, SO hard to live with!

 

Waterstone’s Bolton hosted an author signing event last Saturday the 12th, just one week after the first. Again it was successful selling 80% of ordered stock, which I believe was a good result from an ‘unknown author’ But goodness, I can’t do this every week! Between both events I was fit to leave the house just once!

 

The next signing event is booked for the 2nd April at WHSmith in Clitheroe, which allows plenty of time to recover. If any of you are nearby that day, please drop in and say hello.

 

I should be at the hospital this afternoon to see the Rheumatologist. But apparently even Rheumatologists get sick, so it’s been cancelled! Although I needed an injection I’m actually quite relieved… I’m not sure how I’d have summoned the energy to drive there, and back today! Instead I’ve taken the opportunity to update my blog, once again from the comfort of my bed.

 

April will see the one year anniversary of Shared Experiences. Unbelievably it will be a whole year since I created the website; another year gone, almost in the blink of an eye! At least I can look back at the last year and feel proud of my achievement; having made the best of a complicated set of compounding circumstances.

 

I’m now working on new ideas and maybe even a second collection. The arrival of Spring really will “cast aside all my gloom” every year when the flowers bloom I say... “Thank you God” and realise, despite everything, I really am one lucky lady!

The Wolf!

Posted on February 26, 2011 at 2:11 PM Comments comments (0)

I doubt I will ever understand this ‘thing’ they call Lupus, despite being affected by it for virtually all of my life! Systemic Lupus Erythematosus, hard to say yet even harder to live with. Sometimes called the ‘wolf’ the most misunderstood and misdiagnosed disease in the history of medicine. I should know, it took nineteen years to arrive at a diagnosis. Endless hospital visits, episodes of devastating ill health, wrongly being labelled as having ME. Eventually, after seeing the same consultant for years, a series of blood tests revealed that my unsuspecting body was actually under attack from this auto immune disease called Lupus! Incurable, but in most cases manageable, and SO very frustrating due to its unpredictable nature; not to mention the incomprehensible exhaustion that curses most of us.

 

No two people will suffer Lupus in the same way; many, like myself will have other related conditions. Arthritis, Fibromyalgia, Sjogren’s syndrome to name just a few. Regular appointments with a Rheumatologist is necessary if Lupus is to be managed successfully, as GP’s knowledge of the disease remains somewhat limited. Many will have few ‘Lupies’ (the endearing name we give ourselves) on their caseload if any!

 

In a nutshell that’s it… Does it make me feel better writing about it? Perhaps the cathartic process of tapping on the keyboard pouring out my feelings about this little known disease should somehow make me feel better. Today however, it doesn’t! and if you will forgive me I’m about to let out a rather large Grrrrroan!!! Yes, you’ve guessed I’m frustrated, weary, and wishing that for once, just once… not a lot to ask is it? That I could venture out of my comfort zone and not have to pay the penalty for assuming an ‘almost’ state of normality.

 

My little girl, always ‘My Little Girl’ regardless of the fact she’s twenty two! was in crisis this week and really needed her Mum. Bristol is a long drive for anyone; more so for a ‘Lupie’ and for those of you wondering, I don’t ‘Do public transport’ Oh my goodness, NO! The thought of being away from my car thrusts me into nervous panic… I’m very heavily reliant on my vehicle.

 

SO, my daughter needed me and I needed to see her! The logical solution was to meet half way in Birmingham and spend two nights in a hotel courtesy of Superbreak, a very respectable deal indeed.

 

It was lovely to spend quality time with her, regardless of the circumstances being less than ideal. She was in need of TLC; what better way to administer it than taking her for some retail therapy. Apparently a cure for all evils, but boy! Does my girl know how to shop… ‘til you drop is most apt in my case, and I did, on a rather large sofa in the changing room of Top Shop. I must just put this into perspective; this shopping expedition by no means matched the type my sisters regularly encounter. For most it will be unimaginable that the simplest task of retail therapy could be enough to induce an exacerbation of symptoms… WHY?? I wish I understood.

 

I’m home now, and have once again gone to ground! I need to recover ahead of my first signing event next week. I’ve remained in my pj’s all day, shut out the world and, as is usually the case I’m having to accept that it will be a few days before I can do much else.

 

Before I end this blog I would like to say a BIG thank you to all of you who have purchased my book ‘Raw Emotion’ Don’t forget an annual donation from the royalties will be made to Lupus UK and Breakthrough Breast Cancer during their awareness month in October. For those of you still thinking about purchasing one please do show your support. Also, I will be at WHSmith Accrington Lancashire on 5th March from 1pm and Waterstones Bolton on 12th March, again from 1pm signing copies of the book.

 

So, between now and then I aim to administer my own TLC, and until next time, Godbless!

My Little Book!

Posted on February 6, 2011 at 2:14 PM Comments comments (1)

It’s late Sunday afternoon, almost dusk. The rain is lashing against the window, it’s cold, extremely windy and I’m glad I’m here; tucked up inside, tapping on my keyboard. There’s something comforting about being inside on a miserable day, especially when you close the curtains, light the candles and shut out the world. Soft music in the background, my keyboard and that little place in my head I call sanctuary! I have to admit I’ve arrived at the end of the week slumped over the keyboard… A headache which has persisted for eight days and a body which feels as if it’s been run over by a steam roller!

 

It has however, been a week like no other: My little book ‘Raw Emotion’ was finally released. After all the months of preparation it was somewhat surreal to see it sitting proudly in the online bookstores.

 

Excitement, anxiety, many emotions surfaced quite unexpectedly. I guess I wasn’t prepared for how daunting releasing a book could be; especially one so personal. Each rhyme carefully crafted, written from the heart during times when I’ve had to dig deep into my psyche to unleash inner strength. The purpose behind ‘Raw Emotion’ is not only to touch hearts with poignant rhymes which one can identify with, but to support two charities close to my heart… Lupus UK and Breakthrough Breast Cancer.

 

Last Monday I was interviewed by the features editor of ‘Lancashire Life’ magazine. I’m looking forward to seeing ‘Raw Emotion’ unveiled in the March edition. Also my scheduled book signings at Waterstones and WH Smith are cause for excitement.

 

Over the next couple of weeks I’m going to step back and recoup some energy. Anyone living with chronic illness may be familiar with the term ‘spoonie’ For those of you left wondering; there’s an interesting article relating to this called ‘But You Don’t Look Sick’ which can be read on the links page. I need to use my spoons wisely… Forcing myself from within my comfort zone is never without consequence, hence the physical slump I find myself in just now.

 

On Thursday I returned to the eye hospital to have my post operative check up. It sadly wasn’t the positive appointment I’d been hoping for. I’m still unable to drive at night and some issues with the right implant mean I can’t go ahead and have the cataract removed from my left eye until I’ve had further tests. I didn’t know whether to laugh or cry when my consultant said he considered me his challenge. Meanwhile I’m left with unbalanced eyes and a persistent headache! I was so very positive during the early days following surgery… I wish, just once things would be straight forward.

 

Physically I might not be feeling great, but I do have a satisfied little smile on my face having fulfilled one of my life time goals. If you’ve purchased a copy of ‘Raw Emotion’ Thank you! Also a big thank you to all of you who continue to read my blog.

Bright Eyes.

Posted on January 13, 2011 at 8:04 AM Comments comments (0)

It’s hard to believe that mid January is upon us and Christmas is all but a distant memory. I for one, am relieved that it’s over; done, dusted and put back in the cupboard so to speak! My artificial tree was reluctantly resurrected after much deliberating as to whether I should erect one at all… I relented just in time for my older children’s homecoming, but by 1st January it was wrestled back into its box unclear as to whether it will see the light of day again… I’m such a ‘bah humbug’ and not afraid to admit it!

 

On the 3rd January I went into hospital; another new year and more surgery. This time a brief stay to undergo my long awaited eye operation. After being informed on admission that the procedure might not take place as planned, due to having latex allergy… Yes, something else to complicate matters! It did however, go ahead much to my relief.

 

I’m now nine days post surgery and seeing the world through a much clearer right eye. Although my night vision is worryingly impaired I’m trying to remain optimistic for improvement. I’ve been told it could take 6-12 weeks before things settle down. During the day is a different matter, the dull world I’ve been living in is suddenly brighter, clearer and colourful. White is no longer yellow, but pure, clean and beautiful! Surgery on my left eye will go ahead once the surgeon is confident that the right has been a success. In the meantime, I’m sure I’ll be spending much time admiring the picturesque view of the countryside from my living room window, whilst noticing a world I’d forgotten through a new right eye!

 

So, my future looks brighter in more ways than one… I’m having a respite from the arthritis which plagued most of last year; the treatment administered in November has arrested the inflammation and pain in my joints, giving me chance to enjoy freedom of movement… I don’t always realise how bad I felt, until I start to feel better. The sad thing is, I know it wont last, but have become adept at taking the good with the bad.

 

Many of you will know I spent the latter end of 2010 working on the publication of my book “Raw Emotion” I’m very excited as my dream is about to be realised, the book has gone to print and will be available from http://www.silverwoodbooks.co.uk/ by the end of February. I believe it will be listed for preview on Amazon by the end of January. I've decided to support Lupus UK and Breakthrough Breast Cancer, the two charities close to my heart; therefore an annual donation will be made from the royalties of “Raw Emotion” during their awareness month in October.

 

 

Last Saturday I received notification of my poem “Do Not Judge” having been chosen for inclusion in an anthology of works by creative UK writers called the “Power Of Poetry.” This will be available through United Press; as yet I haven’t been informed of the release date.

 

I often talk about the difficulties chronic illness brings, especially with exacerbating factors such as divorce and loss of employment. I seem to have struggled through too many years than I care to remember. So many hopes and dreams have been dissolved by influences out of my control, a life long battle with illness and much sadness in life. My maternal grandmother used to say, “Everything is sent for a reason” her words echo in my psyche often. It isn’t always easy to share that belief, although it’s true to say our experiences shape our existence. If we’ve never experienced illness, how can we appreciate being well? How can we understand someone else’s pain if we’ve never suffered? How could I have written my collection of “Raw Emotion” if I hadn’t felt the emotion required to write from the heart? As the release date draws closer I’m nervous, excited, someone suggested I should feel proud! Strangely, proud has never crossed my mind. Maybe I will feel it when I hold the printed book in my hand for the first time.

 

I choose to believe 2011 is going to be a better year, I have much to focus on and a new eye to focus with!!!

The Grim Reaper And Better Things!

Posted on December 4, 2010 at 11:44 AM Comments comments (0)

Well, it arrived; like the grim reaper burying everything beneath its evil blanket of pretence! The Christmas card effect looks beautiful whilst looking out of the window, but for the elderly or infirm, snow isn’t a welcome sight. My plans for the week have been well and truly thwarted by the offending stuff. It’s difficult enough managing a debilitating illness which regularly has you prisoner in your own home for prolonged periods. The addition of treacherous weather really does add insult to injury!

 

The cruel reality of life was brought to the fore yesterday after it became apparent I wasn’t going to be able to see my sister. Who, having lived in Spain for twenty two years is over on a brief visit. I was looking forward to spending the evening with my parents, two sisters, niece and youngest son. It must be three years since I last saw my niece, and eighteen months since I saw my older sister. If I was fit and healthy nothing would stop me trekking through the snow to be with them. Goodness! I remember some horrendous winters during the early 80’s… Snow and ice certainly didn’t deter me back then.

 

Ironically yesterday whilst feeling so tremendously low I happened to read this…

 

“The I in illness is isolation & the crucial letters in wellness are WE”

 

Such a true poignant sentence; sadly I expect only few will understand the profound meaning. I don’t think you ever come to terms with a life compromised by illness: You learn to manage it… To live one day at a time, but it doesn’t stop you wishing that things were different or stop the hurt when you can’t do what others do. I’m not ashamed to admit that I cried into my pillow last night; I’m only human and I’m not ashamed to admit that occasionally I yearn to lead a normal life!

 

However, today is a new day and I’ve lots ahead to be positive about. I’m so excited to share my news. It’s happened, I’ve signed a publishing agreement; “Raw Emotion” my collection of thoughts in rhyme is due to be released at the end of February. I’ve spent the last couple of months writing the collection and directing what little energy I have towards the project. All the hard work is completed and the rest is in the hands of my publisher; I can’t wait to see my work in print, although it does all seem rather surreal at present.

 

The local newspaper published my story on Friday, complete with a picture of me with Joshua, my youngest son. I’m not sure how Josh feels about being in the newspaper; although he did mutter something about paying him copyright as the picture was one taken on his seventeenth birthday… An ingenious way of extracting money from me I suspect! The link to the piece can be read below:

 

http://menmedia.co.uk/accringtonobserver/news/s/1388016_brave_mum_jane_has_published_first_book

 

I’m afraid I’ve been guilty of not updating my blog quite as often. I’ve been focusing on producing the book, plus winter is a challenging time with symptoms exacerbating in the cold weather. Anyhow, I can now pay more attention to “Shared Experiences” whilst awaiting the release of “Raw Emotion” and eagerly anticipating a new year filled with better things.

 

For now I will watch the pounds disappear out of my central heating flue, as it constantly ticks over in its almost failed attempt to keep me warm. At least I’m not alone there… The worry of increased heating bills is one more source of anxiety for all of us during this grim weather.

 

I’m sure a night in front of the television watching X Factor and Celebrity Get Me Out Of Here accompanied by a bottle of red is the light hearted release I need to get me through another lonely, cold night.

 

SO, until next time Cheers!


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