Why it Feels Like Suicide is Always an Option – from A Chronic Voice

This is an emotive post shared by Sheryl from A Chronic Voice blog.  She gives us a Trigger Warning that this post is about chronic illness and thoughts on suicide – it may be potentially triggering.  For help contact:

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The Fears of Aging with Sickness

While I did not ask others with chronic illness how they feel about this, I know that many of us share the same sentiments. It feels like suicide is always an option on the table. And putting suicide aside, the number one cause of death in the world is due to chronic illness as well.

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We are living out that rainy day scenario others are saving up for. Modern medicine combined with pieces of complementary therapies is like an umbrella. But one that is never big enough to shield us completely from the downpour. My lovely caregivers are also getting older by the day, and everyone grows naturally weaker with age.

To read the full post visit A Chronic Voice

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Book Review “The Girl at the End of the Road”

Disclaimer: I was fortunate to be given a copy of this book by The Book Club on Facebook in exchange for a fair and honest review.

The Girl at the End of the Road by K A Hitchins

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Vincent has found himself in a situation that any self-respecting “City” boy would balk at.  He has lost his job, his rented home, possibly his high maintenance girlfriend and perhaps most humiliating of all, he is on his way home to his parents’ house in Suffolk.  Rural Suffolk.  At this point in his life, a decade or so after leaving school, he did not expect to find himself becoming reacquainted with his childhood bedroom or learning how to live with his loving, but in his eyes, staid middle aged parents.

But he is clear in his own mind that this is just a temporary glitch.  The downturn in the economy and his huge personal debts will not hold him back.  However adjusting to life in the rural village of Elmsford proves hard for Vincent, who assumes himself to be a city hotshot.  There is no immediate access to internet, the job offers that he expected to flood in are nowhere in sight and his social life is virtually non-existent – unless you count dog walks with his parents’ elderly dog.  A trip to the local library brings him face to face with a memory from the past in the shape of librarian Sarah Penny.  Having run into this old school friend once, he finds himself encountering her on dog walks and then actively seeking her out.

So begins what initially seems to be the most unlikely of friendships.  Sarah is the antithesis of friends who have featured in Vincent’s life as she is serious, quiet, slightly dowdy and happy to be in Suffolk.  She is certainly unlike the city girls who dress and make up to the nines, expecting champagne fuelled dates and expensive accessories.  Sarah, in her almost simplistic view of the world, makes Vincent accept some unpleasant truths about himself and his attitudes to life.

The story could be very clichéd, and at first Vincent is a pretty unlikeable character.  But it was with real interest that I watched his character evolve from spoilt young man to something altogether different.  Maybe there is an element of fairy tale to this, but as Vincent grows so does Sarah and the reader begins to have a glimpse into a simple world of an exceptional young lady.  I don’t want to give any spoilers, but I believe that there is enough already written about Sarah’s autism not to be giving anything away.  I am not autistic so do not pretend to have any inside knowledge about this complex condition.  But I do belong to a community of chronic illness sufferers, some of whom are on the autistic spectrum and I have recently read articles by author Laura James, who has autism and my own condition, Ehlers Danlos Syndrome.  I feel that Sarah’s autism, which included her extraordinary intelligence, has been handled sensitively and with relevance to real life.  For instance, her coping mechanisms at dealing with life following her mother’s death and her growing relationship with Vincent.

This book made me think, made me sad and in parts made me laugh out loud.  Perhaps most importantly it made me examine my own attitudes to those we consider to be different to ourselves and also those closest to us.  In my disability chronic illness community we call ourselves “spoonies”, in the book Sarah and her friends call themselves “The Specials” – a fantastic name.  Of course there is a moral to the story for Vincent regarding what in life really makes you happy…..and sometimes you are unable to see it for trying too hard.

For me a great read, with a long review, but 5 stars all the way!

Compassion

I have just found this fantastic blog through Dream Big Dream, Dream Often Blog Sharing – definitely one to follow!

A Lion Sleeps in the Heart of the Brave

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There is no denying the fact the living with mental and chronic illness is a challenge. This seems especially true for those of us who have also experienced trauma. Childhood trauma sets us on a path that leads to low self-esteem, depression, anxiety, PTSD, and attachment issues. Many live in this state of maladjustment for years, often unable to recognize that something is wrong until we are well into adulthood, believing it to be the norm.

At some point in our lives, we begin to acknowledge the effects of childhood trauma. For some, this awareness surprises us, when we find ourselves, once again, in traumatic situations. For others, this awareness has a way of sneaking up on us, as we struggle with confusing and frightening emotions. Often times attempting to keep them at bay through unhealthy coping mechanisms. The faster we try to run away, the stronger the fear latches…

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Migraine, Anxiety, Ehlers Danlos and Guilt

Our household has been plagued by migraine this week.  Whilst the actual physical condition only affected one member of the family, the anxiety it caused affected us all. The A level student is all but an adult, a tall, lanky young man not so different from every other adolescent on the edge of adulthood.  But he is afflicted with migraine headaches and anxiety which are becoming more and more regular.

da4c13fb137e5947d72059d0e43cdd2eI was much the same as a teen, but I think that mine reached a peak at about the age of 20, when I found myself referred to both a neurologist and gynaecologist.  Of course something that I now know that my mum didn’t, is that migraine is particularly prevalent in the Ehlers Danlos community – actually we had never even heard of EDS.  But mum has always experienced migraines, and we all have painful necks and what mum has often described as a lollypop head.  You know, when your head is too heavy for your neck.  I have memories going back to childhood of needing to roll my head and crack my neck, starting when sitting on a schoolroom floor looking up at the blackboard – yes, I am that old!

But now the anxiety comes from concern for the next generation in our household.  We are constantly being told that the mental health of our youngsters is on the decline, and the school have told us that there is enough work to keep the counsellor in full time employment for the sixth form alone.  I suppose we could say that whilst my  three have not been formerly diagnosed, I can recognise enough EDS traits in them and they all share high anxiety levels.  This, coupled with migraine and the stresses of coursework and public examinations for the second, have pushed me to become that mother who seems to be constantly emailing the head of year at school.  I have gone from merely attending parents’ evenings to contacting the school on a weekly basis and I even sent in an information sheet about EDS.e1d71b3efb257e52d557e74dca09aa6d

Being aware that your children, no matter how old they are, have inherited certain traits from you and believing that your own health issues have impacted upon them, is very different when actually seen written down in black and white!  An assessment that we received this week, in an attempt to help gain some control for my son over the migraines ahead of his exams, listed out issues for all of us.  In fact the only one not covered is the dog and he probably is the most stressed of the lot!!  He was a rescue who was diagnosed as special needs and autistic when we took him to training…..now aged 14, he is pretty happy so long as he is at home with no other dogs in sight.

Whilst the rational part of me knows that I shouldn’t blame myself, the irrational psyche is guilt ridden.  I know that many other chronic illness bloggers have written  how nothing can adequately describe the guilt that we can feel about the impact that our health has upon our loved ones. For me it has weighed more heavily  than ever this week as I read that assessment – maybe it is self indulgent to feel that I shoulder the blame for my husband’s stress related health problems, the university student’s peaks and troughs of angst with the world, the migraines of the A level student and the the now increasing subluxations of the lovely girl.  The kids all have pain in their hands and wrists upon writing, and my daughter has never been able to hold a pen “normally” to write.SONY DSC  It was only when I recently purchased finger splints that I realised that I too have always felt pain in my hand, struggled  with pressure in my fingers and found myself much slower at writing than my contemporaries.  For all of us aches and pains are just normal everyday.

 

Although we currently await an appointment for the younger two to be seen at University College Hospital, London where I was diagnosed, and the right medication needs to be found to stabilise the migraines, at least I have learnt enough to find the A level student qualifies for rest breaks during his exams – politics, history and English literature.  All essays…all heavy on bendy fingers, thumbs and wrists.   Thanks to all those who have offered support and advice when I have asked for help this week – you know who you are!

 

#Depression – it can happen to anyone!

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I want to share a link to a blog post from a very talented young man who has just announced his departure from progressive rock band The Enid.  Please don’t switch off because Prog Rock isn’t your thing – it isn’t really mine either, but my husband has followed The Enid for years and so also the career of Joe Payne since he became their lead singer 5 years ago.  His talent is undeniable – his vocals would work on any musical theatre stage let alone a rock band.

My reason for sharing is that Joe has written a very candid post describing how life overtook him and before he really knew it, he had been taken over by anxiety and depression and breakdown.  I have described before how my husband suffered a similar mental health breakdown a couple of years ago, after a period of extreme pressure from both work and several life experiences.  There is still a stigma attached to any health issues that are related to the psyche rather than the physical – but this should remind us that if a young, talented and successful young man can succumb to depression, it really can effect anyone. Let’s all continue to raise awareness of the importance of mental health care – thank you Joe for sharing and very best wishes for your future.

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https://thatjoepayne.wordpress.com/2016/09/05/a-new-chapter/

Paint away the Pain #arttherapy

I’m sitting here recharging – yes literally as the scs running a bit low on juice – watching the Olympics and downing Pimms.  The divers and then the gymnasts, wow they are fit and so many of them have overcome injuries to be at the top of their game.

This got me thinking about a lady whose work we admired in an art gallery recently and her story.  She was an ordinary young housewife who had her family and set about bringing up her children and supporting her husband as a stay at home mum.  Life felt pretty dark at times, although it should have been great, and now that wonderful thing hindsight has shown her and her husband that she probably had post natal depression for many years.  During these difficult days she developed a painful nerve condition of the face called trigeminal neuralgia – all the same awful nerve pain that is experienced with sciatica down the leg or nerve pain down the arm, but running through the side of the face.  I know that I have written at length over the last year about nerve pain and just how hard it is to treat, but it really is the hardest thing to control and the trigeminal nerve is probably the hardest to symptom control.  This would have led to a continuous cycle of pain and depression.

She had never painted beforebut with encouragement started to put brush to paper and found a fantastic outlet for her pain and depression.  Ov61f4zqdeCAL._AC_US160_er a period of years she developed her own very distinctive style – the gallery described it as Marmite, as people either love her work or hate it – and her work started to be noticed by art critics.  Today she has exhibited in a top London gallery, her art sells for thousands and she is a leading figure in the Royal Institute of watercolour painters.  Just think, this all started with what was effectively art therapy!

http://www.adrianhillfineart.com/ – link for the gallery in Holt for more information

 
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Therapies that complement traditional medicine have long been recognised for their beneficial qualities in mental health, palliative care and cancer care.  The use of art and specifically colouring is now becoming a regular therapy for symptom control.  Adult colouring books are quite the rage!  I have found that when the pain is not settling, sitting quietly with a picture to colour in really changes my mindset and thus my response to the pain.  There is something about the different way in which you have to concentrate that slows down the mind and is calming.  My girl, who does more than just colour, says that she finds painting and drawing relaxing.  With art, it is possible to express thoughts and feelings that can’t be voiced.  In the paintings of the artist described, it really is possible to see her battle with depression and pain in the dark outer edges of every painting – and yet the details of the actual pictures are bright and vibrant, depicting people living life to the full.  Maybe some these actually picture activities that she would have liked to have done or places to have visited – even the slightly more risque elements to some of her work could be expressing a side to life never experienced.  I wonder how many of us bloggers (not just those with an illness) use writing as a similar therapy – whether it is as a distraction from illness, a means to express ourselves in a way that we are unable to voice in everyday life or merely a way to escape from the stresses & strains of modern day life for a few minutes.

So to return to my original thoughts, it is possible to work and strive to overcome physical & emotional difficulties in order to produce a work of art, be that a physical painting, a novel or a perfectly executed high bars programme. images (2) But we mustn’t feel or be made to feel the lesser for failing to overcome our situations or to
produce wonderful artwork.  We can take inspiration from others though and each find our own outlet.

 

 

So, I’ve finished charging, my battery is showing full, the Pimms is long gone……nearly forgot, we came away from that art gallery truly inspired, but also with a slightly lighter purse and a girl grinning from ear to ear as she carried oil paints home!  I think I know how she plans to express herself over the remainder of the holidays!

 

Selfies – good or bad?#body image

12797598_167283200324894_1482877079_aMy beautiful daughter stood up and gave a talk with this title at the end of last week.  Of course I’m biased when I say beautiful because I’m her mum, but with her petite, shapely frame, huge eyes and long blond hair we see the boys sneeking looks when we are out (although her brothers would never admit it!).  What I’m really referring to though is her lovely personality – she is caring, compassionate, the peace keeper in the group, always fighting for a cause or the underdog.  No, she isn’t perfect – she leaves her clothes over her floor, needs nagging to do her homework, is disorganised, spends too much time on her ipad – in other words is a teenage girl.

But she doesn’t like what the selfie culture is bringing out in her friends.  The obsession with posing in crop tops and layers of makeup.  So she went away and looked at statistics, including anorexia, suicides and body dysmorphia, and stood up to speak to her friends.  She doesn’t find this easy and img_1165initially the girls laughed as they thought she was joking when she started with the words “Selfies – good or bad?”, but she talked and they listened.  Hopefully it made them think for just a few minutes.

Years ago as a post reg nurse studying for a Head & Neck cancer qualification, I chose to write my dissertation on body image, or rather the effects of altered body image.  There was very little literature – mainly studies by the American Mary Jo Dropkin and the book by Mave Salter.  Body image was a touchy feely subject that we didn’t really talk about, and certainly not in relation to ourselves.  How times have changed!  The impact on my patients undergoing major, disfiguring facial surgery should not have been underestimated – for not only was there the obvious physical changes (removal of voice box, tongue, nose, eye, mandible, sinuses or a combination) but the alteration to voice and speech, the ability to eat and drink, the impact on relationships and social lives.

imagesToday I think about the impact of hidden illness on body image and self esteem.  The increasing need for perfection in our social media culture is tough enough on the healthy, but when an illness creeps insidiously into your life it can rob you of so much that we take for granted.  On a course in the ’90s for the care of people with HIV and AIDS, the lecturer asked us all to define ourselves in a list.  Most comprised of nurse, girl/boyfriend, wife/husband, parent, child, lover, friend, sibling………..we were then challenged to imagine chunks of this personality being eroded away with no hope of cure.  Of course the outlook with an HIV diagnosis is today very different, but since finding myself living with chronic pain, worsening EDS etc, I have thought back to that day often.  To find that your partner’s relationship has changed from that of your lover to that of your carer, your teenagers have undergone a role reversal and are taking you to the toilet, helping you to walk and dressing you and, most importantly my father would tell you, as parents of the nurse daughter who was supposed to look after them in their old age, he doesn’t know what they will do now!!  But writing seriously, my own self worth has shifted significantly.  I no longer feel like the person that I was supposed to be.  Yes we can all say this as we grow older and our lives don’t take the course that we had envisaged – after all I hear you sigh, how many lives do pan out just the way we dream in our teens??

Chronic pain and back surgeries have robbed me of my independence.  This is probably my most prized possession that I have unwillingly lost.  It affects all areas of my life from just throwing on my coat, grabbing the car keys and popping to the shops to needing help to sit up in bed in the morning.  The reality is that I constantly have to rely upon other people to take me to places, to remember to ask if I would like a lift because I feel like a nuisance for constantly asking, to wash my hair, blah, blah,blah….I miss my able body.  A mixture of drugs and immobility have caused me to pile on the pounds – about 3 and half stone in total.  I have never struggled with my weight, even after babies, but this has been so tough.  Initially I managed it and only gained a few pounds, but as the pregabalin/lyrica dose increased so the weight did.  I always knew that my patients said the dreaded pregabalin piled on the pounds, but you cannot understand until you experience it – the fluid retention, one day being able to wear a watch and the next not – and the fact that the weight may go on very quickly with the drugs, but it doesn’t come off easily when the drugs cease.  I know that other people think I’m mad, I’m tall and carry it easier and that this should be the least of my problems.  But staring at a wardrobe full of clothes that no longer fit just adds to the decreasing confidence and at times self loathing.  I miss my able body.  The tiredness, lethargy, feeling like I’ve run a marathon when I’ve actually only been to the cinema – catching a glimpse of myself in a shop front creeping along with a walking stick, albeit a pink, sparkly one!  I have turned 80, aging at an ever increasing rate, giving new meaning to the aging process.  I miss my able body.

Yet I know I’m still one of the lucky ones.  There is always someone worse off than you, isn’t there?  So back to my lovely girl’s dilemma and I read in the press that young girls are now taking selfies of their waist sizes…..by measuring them with a piece of A4 paper!!  Yes, you read correctly and if this isn’t going to have a negative impact on the body image of healthy youngsters, god help the unhealthy amongst us!!instagram-in-yeni-cilginligi-a4-kagidiyla-selfie-6752966

Reflections and resolutions

The end of the year always feels like a time for reflection, doesn’t it? Or is it just a time for looking ahead and making those dreaded New Year resolutions, only to broken by Jan 5th!?  I really, really want to be looking forward for my own sanity and for those around me – but not before I reflect on this year.  Please indulge me……

It has been a tricky year in our house for a variety of health issues and the related monetary concerns that being unable to work brings.  It is almost exactly a year since Duncan was given the correct meds for his depression and was able to start on the long road to recovery.  At first, when he was so ill and unable to think straight, he was adamant he wouldn’t take drugs.  During my time nursing I cared for many patients and relatives who resisted antidepressants and we had the “if you had a headache you’d take a paracetamol; you have a chemical imbalance that just needs a little extra help to be put back to normal” chat.  At least when it was my own husband, not only had I this medical experience, but I had also been there myself just 2 years ago.  As a society we still prefer not to discuss issues of the psyche, whether our own or others – there remains a stigma around mental health problems.  Maybe this is part of the reason that so many of us feel an overwhelming need to refuse medication – feelings of shame, embarrassment, failure, fear, addiction concern, to name a few.  I remember feeling like a huge failure when I joined club Prozac and illogically ashamed.  It took several months before Duncan was convinced of the need for chemical help and then the first drug only went and made his symptoms worse.  But with great support from our GP and the correct drug, he has made progress.  We would probably both say, about each other, that seeing your partner in the grips of something that you have no control over is the hardest thing to witness.images (10)

Then one of our sons was also ill and this really did knock us for six, as we had never seen him like this before.  It emerged that he had recognised certain symptoms when reading articles with titles such as “Existential depression in the gifted and talented adolescent” – I was lost by the end of the first paragraph!  Happily with the right support all round,  we all have a better understanding and things are back on an even keel.  But our youngsters today never switch off.  They are constantly over stimulated as they rely on social media to communicate, and have a powerful hand held computer in the shape of a mobile phone on tap 24/7.  Overthinking has always been an issue in the very bright, but I wonder if we will see it increasingly becoming the norm?

My appointment with the specialist pain team at St Thomas’s came just in the midst of these crises.  I warned the psychologist that she had caught me at the end of a particularly stressful and emotional week, but she told me to describe everything from the start of my back problems.  “But that began in 1991 – should I really go back that far?” “Yes, please” “How long do you have?” Poor woman didn’t quite know what had hit her!!  This in turn led to my 2 week inpatient programme and subsequently the implant.  It all sounds terribly easy like this……

I have had some highs and lows over the last fortnight.  One real success was a trip to London to visit the student with the other teenagers.  We decided to brave the train rather than London Xmas roads, and I even had a member of BR help me to get into the carriage which made me feel about 90!  We had a lovely meal on the South bank and then enjoyed following our three offspring around the Xmas market. download (2) So nice to see them actually getting on.  In their black skinny jeans, I couldn’t help but compare the legs to strips of liquorice…..but I digress.  We walked to Trafalgar Square to see the Norwegian tree and then the kids went back with their brother to the student flat, whilst we made our way slowly back to Waterloo.  It wasn’t easy, my foot was dead and my leg kept giving way, but with the help of the stim (and Duncan half carrying me!) I did it – a far cry from a similar visit last year when we went to the theatre on the same night as the tube strike.  That was one very long trek and never has  Waterloo  bridge felt so endless – it took 45 minutes to get me across the bridge alone!  A couple of walks in our local park were made so much easier and even enjoyable as I was able to whack up the stim and counter the leg pain, even sitting outside for a hot choc.

But I have also learnt that the stim can only deal with so much!  As the weather has become colder over the last few days and the nights have been so windy, so my barometer body has played up accordingly.  My EDS has left me with extremely painful shoulders which dislocate regularly – Duncan monitors me when asleep to ensure that I haven’t lifted an arm above my head…and the weight then pulls itself out of socket!! The back pain at night has been reaching a peak and I actually fell asleep with the stim turned on, and a trip to our local shops became extreme as both the weather changed and my leg pain rocketed.  Even the stimulation couldn’t do battle with the nerve pain exacerbated by cold wind and rain – we couldn’t even stand upright – and the then familiar nausea and vomiting that follows when my body experiences large changes in temperature.  In this case it was stepping into our warm home!

For someone living with a chronic condition, looking forward to a new year can become something to dread rather than to celebrate.  At times the thought of living through another year in pain has been too much to contemplate even with the love and support of family and friends.  So this New Year, as others resolve to try that new diet, join the gym, do “dry January” etc., etc., I will continue to take each day as it comes.  As a family we will move forward together, continue to battle the intricacies of the benefits system, look toward Dunc returning to employment (albeit on a different level), the kids being teenagers(!) and for me to cautiously look to a year with some control over my body, that has been stolen by chronic pain, being restored to me with my stim.  I hope that we can remember that there is always someone worse off ……

Finally, after a very long post which I started on NYE, as you recover from festivities – I wish all my Painpals a peaceful and healthy 2016! download (1)