The Blessed Project

Flicking through the blog posts on the blog share threads last weekend (Big Up Your Blog), one from Susie Lindau’s Wild Ride leapt off the page at me.  She has invited bloggers to join her in a very special, positive experience – The Blessed Project.

Susie says “Last year, I posted a list of blessings and included a few photos. The exercise took me to a place in my heart filled with love, gratitude, happiness, and sparkly things. My favorite! For the time it took to create the list, it banished bad news, headlines, and normal everyday frustrations like surfing to buy the perfect gift which is as slippery as Elf on a Shelf.”  What could possible be better at this time of the year than to focus on blessings…and some photos to embarrass your kids??

So where shall I start?

My family naturally…..hubby Duncan puts up with a lot, particularly on those flare days when I am horrible to be around, but he is always there.  He spends half his life running me to different hospitals across London and never (well almost never) complains and is always there to pick up the pieces – or just to pick me up!!

The kids…..it is challenging having the student engineer living back at home after 3 years away and my kitchen is living proof, but he is getting better at catching me before I pass out.  The middle one – do all middle children play on the old adage that middle borns have such a tough time? – is due home from uni next weekend and it will be lovely to see him (I think – dirty washing???).  We haven’t heard much from him, but presume that is a good thing – although he does send regular pics to his sister.  Finally my baby – my lovely girl.  She drives me mad with her untidiness, but she looks after me over and above what a teen should have to do for her mum – and constantly plays down the fact that she also has the same condition.

My parents – they live up the road and without them our lives would be so much harder on so many levels. Thank you, Mum & Dad!

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Their first and only selfie!

My wheelchair – yes really!  It has given me a new lease of life as my mobility has decreased and pain has increased.  I have spent the last few years struggling to maintain some independence and to walk.  But the back pain initially and then the disabling effects of 2 back fusions (they really did add to my problems) and more hip dislocations have led to first funky walking sticks, then Smart crutches and now my wheels.  Not what I wanted during my 40s, but I can go out and join in! My eldest plans on taking me ice skating in it but I didn’t like the wicked glint in his eye when he suggested it!!

Friends who don’t give up on me when I blow them out, who stick by me and let me feel like the woman I used to be.  I also am very blessed to have a whole virtual friends family – bloggers and the chronic illness community who give such support and friendship…and “get it”!  Meeting with online Book Club friends at our annual birthday party was a treat.

I feel blessed to have found some kindred spirits this year at our EDS UK support group.

My furry friends – we have been blessed with some extra time with our elderly mutt, Sam, due to an understanding vet and painkillers (yes, for the dog!); but also our surrogate dogs, Chester who I love like my own, and Prince – both come round every week for walks with hubby and cuddles with me!

Samson

Samson

30 years on – meeting up with old school friends and feeling the years just slip away.  Hopefully staying in touch….have already met up with one and his family.Class of 87 pic

Finally….staying with the old school theme, I feel very blessed as the Chair of our alumni committee to have been invited to some wonderful events (Henley, the school drama) including the beautiful Carol Service last night in the parish church.  Talking to some of the parents and staff after, over mulled wine and mince pies, we all said that whether we were religious or not, it was a lovely way to start Christmas proper – putting aside the commercialism for just a short time and enjoying some true Christmas spirit.  There just might be a bit more of this spirit at the pub next week when I go to the One Term On event, for the youngsters returning after their first term at university…..won’t be staying too long as this old bird might really cramp their style!!!

 

Why don’t you link up your blessings with Susie?

Join the Blessed Project and Get Featured!

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Review of a great contemporary novel! “All We Have Lost” by Aimee Alexander

Fab stocking filler

 

Disclaimer: I was given an ARC of this contemporary novel by The Book Club on Facebook & the author in exchange for a fair and honest review.  All views are my own. This review contains an affiliate link.

I am a huge fan of classic novels, particularly those with strong female leads, but I also have an enormous soft spot for contemporary fiction.  “All We Have Lost” features business woman, wife and mother Kim who really does seem to have it all.  She runs a successful PR agency, is married to the good looking Ian – the love of her life, has two lovely young children, a great nanny to care for them and supportive family and friends.  Kim knows her own mind, has life mapped out and is certain where she is headed.  Or is she?

For one day Kim wakes up and realises that this isn’t the road she wants to be on at all.  She rarely sees her children, her home is virtually run by another woman and her husband sees more of the children than he does her.  Add to this her parents’ “perfect marriage” that Kim has placed on a pedestal since her father’s death, and suddenly Kim feels like she is in fact failing.  She decides to wind the business down, let the nanny go and be an author who happens to be a stay at home mum.  Her husband is on trial for a new job, she has always aspired to writing like her best friend Sarah and she is certain that she can work this around the needs of 2 preschool children.  How hard could it be?

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All We Have Lost

I think that any parent – particularly the mums out there – will be able to relate to this, working or stay at home!  Of course Kim has no idea just how demanding caring for young children can be.  A 2 year old just will not stick to your carefully constructed time table allowing mum time to write her novel whilst the tot naps.  Add in cooking, housework and a bit of writer’s block into the mix and suddenly the grass isn’t greener on the other side.  I really enjoyed the way that Aimee Alexander showed Kim’s gradual decline from a business woman in control, to a woman who was “letting herself go” and suddenly felt powerless to take back that control.  How many of us can empathise with the gradual weight gain (gym, who has time to visit the gym with young children?), the lack of regular personal grooming time (feel grateful if your hair sees the backside of a brush daily, let alone regular visits for a blow dry at the salon) and the overwhelming tiredness that strikes before hubby even gets home (from his fourth late night of the week).  But it should be ok if only Kim can start writing – and yet even this is not the easy task that she has imagined.

The author shows just how quickly and easily relationships can change – in Kim’s situation it is not just her marital relationship, but also that with her mother and her friends too.  Failure to communicate leads to misunderstandings, jumping to the wrong conclusions, reading signals incorrectly and great hurt.  At times I found myself becoming so frustrated with Kim and Ian, wanting to shout at them to stand still, take a breath and look what is happening.  Kim seems to become completely hung up on her world at home, forgetting that the very things that she complains about in Ian in his new job were her not so long ago.  Ian is so intent on making up for the fact that he is suddenly the main breadwinner and also feels he has to prove himself in his new job, that he becomes unable to communicate his concerns to a wife who no longer seems to have time for him. Aghhhh – I can see your relationship falling apart and yet neither of you can.  It is a testament to Ms Alexander’s writing that I could also feel Kim’s envy for her friend Sarah’s life as an author, yet also hear the alarm bells ringing loudly to warn Kim that her decisions were having awful consequences and yet she didn’t seem to see it.  Misunderstandings and knee jerk reactions have such devastating effects for all the people that Kim holds dear – including the children.

There are no schmaltzy happy endings for every character here.  This is real life and certain actions cannot be undone or forgiven.  I admire the additional change in the relationship between Kim and her mother – how a mother’s desire to protect her children can have devastating consequences if lies are uncovered, even years later.  I laughed and I cried with the characters in this book and I found them to be believable.  The visit to a single friend’s modern flat with 2 young children for a long weekend did make me smile – you will understand when you read it! The author even examines that age old chestnut – can a man and a woman ever be just good friends?

In my opinion an enjoyable contemporary novel about real life relationships that gets 4 stars!

 

About the Author:

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Aimee Alexander is the pen name of best selling author Denise Deegan who writes contemporary family dramas about ordinary people who become extraordinary in crisis. Her novels have been published by Penguin, Random House and Hachette.

Aimee lives in Dublin with her family where she regularly dreams of sunshine, a life without cooking and her novels being made into movies. She has a Masters in Public Relations and has been a college lecturer, nurse, china restorer, pharmaceutical sales rep, public relations executive and entrepreneur. (taken from Author’s Amazon page)

Publisher: CreateSpace Independent Publishing Platform; 1 edition (20 Dec. 2015)

Buy the novel on Amazon by clicking here:

Book Review Eva Jordan’s new novel “All the Colours in Between”

I was fortunate to be given an ARC via The Book Club on Facebook in return for a fair and honest review. All opinions expressed are my own.

 Brilliant blog posts on HonestMum.com

I must be honest with you.  When I asked to review this book by author Eva Jordan I had not read the first book in the series, “183 Times A Year”, so my first stop was to do just that.  I read the books back to back so it is possible I may muddle some events, BUT the first thing that I would recommend is that you do read the first novel before embarking on “All the Colours In Between” for both maximum background and enjoyment.  I will try my best not to give any spoilers for the second book!

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The modern blended, extended family.  Marriage, divorce, teenagers, love, deceit, 3 generations, ex partners, friends, illness, flying the nest – this list is the tip of the iceberg of the life topics to be found in “All the Colours In Between”.  Lizzie is the mum, step mum, lover, daughter, ex-wife, friend and mentor driving the story of her family and the individual members life journeys.  She lives with her daughter, step daughter and son – all young adults by this book – and her partner Simon.  Her parents play a huge role in the family, along with her brother and his family and not forgetting the rollercoaster that is best friend Ruby.  The relationship with her ex, the father of Cassie and Connor, is strained at best.  But at this point Lizzie has become an author against all the odds – selling real books and featuring in the best sellers list – whilst in the first book she dreamed of this whilst working with books as a librarian.images (2)

In this book Lizzie’s daughters Cassie and Maisie have grown up, ditched their teen disguises, spread their wings and left home. Her son Connor has evolved from a lovely pre-teen into a grunting, hoody wearing, sullen sixteen year old.  I normally write a bit more about the plot in my reviews, but I really don’t want to give too much away.  Reading both of Eva Jordan’s novels gave me the same feeling that I had when I first saw the BBC comedy Outnumbered.  I was certain that someone had planted cameras in my household!  Of course as mum I identify with Lizzie – so much.  When she describes her conversations with her children and her own parents, I was shouting “Yes!”  The feelings of exasperation trying to get through to a teenage boy who looks like a man, is the size of a man, sounds like a man, and thinks he is a man yet is really a man boy – these could have been penned by yours truly!  The descriptions of her forays onto Social Media mirrored my own – my young adult kids shake their heads and ask themselves why they introduced me to it!

But Ms Jordan shakes up the commentary by writing different chapters with the voices of different family members.  In the first book she writes as Lizzie and Cassie for the majority of the time, and in this book Connor features to a greater extent too.  The Cassie of “All the Colours In Between” is older, slightly wiser, but still hilarious in her ability to use completely the wrong phrase or to misunderstand a saying.  Whilst her story is extremely dark in places, her love for her family shines through from start to finish.  Her description of a particularly stressful car journey with Maisy toward the end of the book is just hilarious – no spoilers, so no more!  Connor is that teen who feels misunderstood by all adults, is just experiencing sexual attractions, the pull of alcohol, spliffs and parties, yet is still damaged from the rejection by his father as a young child.  Maisy has moved across the world as true love struck, but when life took an unexpected turn (including a meeting with biological mum) it is her family who she returns to.Book Review - All the Colours In Between

I really could write an essay about this book, but needless to say I LOVED IT!  There is no sugar coating life here – relationships fail, family life is hard work to maintain, good things happen and shit happens.  Eva Jordan gives us it all in a way that had me laughing out loud one minute – particularly with Salocin, the grandfather – and then crying the next.  But no matter what life throws at them, this family will continue to grow and love each other….with some hiccoughs along the way. I cannot wait for the next instalment…..please, Eva Jordan!

Five golden stars from me.

 

Monday Magic – Inspiring Blogs for You!

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I am shattered today, PainPals and those pals not in pain!  Saturday was the day for the big reunion – that is 3 decades – 30 years since we left school.  I’m not quite sure which timescale sounds better!  How did that time pass so quickly? I remember my grandma telling me to value every day as the older you get the faster the time flies…but as a youngster I never took any notice.  Put together a group of people, some who haven’t seen each other for said 30 years, but who grew up together during those important teenage years….and it will feel like yesterday.  Similar theme to last week!

I was worried on Saturday morning for 2 reasons – firstly would anyone turn up and secondly I was feeling extremely POTSIE with the shakes and snow vision and forgot to take my midodrine pills with mine!  But on the up side about 20 people turned up over the course of the day/evening….and whilst I spent the first part of the day in my wheelchair the adrenalin seemed to kick in and I was able to stand for periods in the pub, sent out for my pills (good old Duncan) and was still in the pub for dinner in the evening.  It is amazing how you can push yourself when you need to and when you want to.  I find that it is about picking the occasions wisely to use your spoons, as it isn’t possible to live like this every day when a chronic illness is your constant companion.

The feedback has been fantastic – we had a great day renewing old friendships, reminiscing (being thrown out of choir, altering the wording on the carol service leaflet, sending Valentine cards, hockey, rowing, detentions for pranks…..the teachers) but also learning how everyone’s lives have moved on.  We had doctors, a headmistress, lawyers, an acupuncturist, a sports coach, a teacher, a horticulturist, an entrepreneur….the list goes on. Families have grown..and shrunk. Life goes on!

Class of 87 pic

Class of 87

So whilst I have had to sit back due to a self imposed inability to stand, I have found some new blog posts for you.  This week we have blogging posts, a yummy looking recipe site, a musical tribute and the feelings encountered when a pet is found to be very sick.  I am delighted to report that my list of blogs I have shared here has grown to 230 and many of these have been featured several times.  What a wonderful community you are!

Hope you have a cuppa in your hand, an hour to sit back and the enthusiasm to enjoy and explore these fantastic blogs.

https://www.disabledgo.com/blog/2017/09/activists-plan-day-long-musical-tribute-to-radical-and-brilliant-robert-dellar/#.Wb7PB7KGPIU

http://www.youcanalwaysstartnow.com/2017/09/11/is-the-universe-pushing-your-buttons-deal-with-it/

http://www.blessingmanifesting.com/2017/09/self-care-awareness-month.html/

http://riverandquill.com/2017/09/identity-theft.html/

https://beinglydia.com/2017/09/17/what-finding-out-my-dog-is-sick-has-taught-me/

http://www.livingnaturaltoday.com/2017/09/heart-goes-texas/

http://raisingzebras.weebly.com/blog/brain-mri-and-the-wheelchair-arrives

https://starbrightcooking.com/21-tips-classic-comfort-cooking/

http://www.strugglingwithserendipity.com/blog/accepting-harvard

http://www.angiecruise.com/what-i-learned-in-my-first-year-of-blogging/

Please, please share, pin, like, comment to let our bloggers know that you have enjoyed and value their writing. Have a lovely week!

Claire x

 

Monday Magic – Inspiring Blogs for You!

Another week, time for another Magic Monday!  The events in our household really pale into insignificance compared to the natural disasters taking over so many parts of America at the moment.  The majority of us, thankfully, will never have to encounter the devastation that these natural phenomena wreak, but I want to send support and good wishes to all our American blogging pals who are living through this.  There is an additional blog post this week that my pal Cheryl at Chronic Mom blog wrote last week about what no one tells you about surviving a natural disaster with chronic illness – but I think that there are  probably aspects that apply to everyone!

 

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We had an unexpected trip over the weekend – hence no blog post – and as it was a long trip for this chronic bird to make in a day, we paid an impromptu visit to old friends to beg a bed for the night.  Panic not other old friends, we gave them 24 hours notice!!  We haven’t seen each other for about 5 years, yet we have known each other for nearly 30 years – we “girls” did our nurse training together and the blokes have always been hifi and gadget buddies. Not forgetting that this fellow hifi nut was hubby’s best man 25 years ago!  With just a few precious friendships the years roll away and it is possible to appreciate the long and deep connections that you have with each other. As two couples, we have had our fair share of traumas over the past couple of years – we decided we should form the “Happy Pill” brigade as we must have shares in antidepressant companies between us – but we have survived and it is testament to our friendship that we can come together as if it was yesterday!  How many people in your life can you call on and truly rely upon to be there for you no matter what?  Quick shout out here for our fab friends’ facebook page – check it out (chocolate brownies to die for) Keeley House Bakery 

 

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I have found some great blog reads for you this week including  becoming a real mermaid (just read it!), a fab book review, and using your imagination when putting pen to paper.  There is also a piece about the scandal currently coming to light about the use of mesh implants in surgical procedures.  So grab a cuppa, put your feet up and enjoy some fabulous writing in these inspiring blog posts!

http://www.chronicmom.com/2017/09/what-no-one-tells-you-about-surviving-a-natural-disaster-with-a-chronic-illness.html/

http://www.nataliemabbott.com/quitting-everything-to-be-a-mermaid/

http://moonglotexas.com/2017/09/10/book-review-death-at-thorburn-by-julianna-deering/

https://1stimeblogger1232.blogspot.co.uk/2017/09/every-scar-tells-story.html

http://www.meaction.net/2017/09/01/reading-matters-lets-hear-it/

https://dystoniaandme.com/2017/09/10/5th-blog-birthday/

http://www.amundanelife.co.uk/2017/09/anxiety-is-not-trend.html

http://invisiblyme.com/2017/09/05/the-mesh-scandal/

https://globehousesitterx2.wordpress.com/2017/09/10/a-pen-paper-and-my-imagination/

https://mindovermetablog.wordpress.com/2017/09/06/how-to-deal-with-toxic-people/

https://ginlemonade.wordpress.com/2017/08/30/when-the-accessible-hotel-room-is-inaccessible/

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Please share this post and make a blogger’s day with a like, share, pin or comment….it makes it all worthwhile.

Have a great week!

Claire x

 

 

Monday Magic – Inspiring Blogs for You

Monday Magic

Here we are a week into August – and it turns out that what my grandma used to say is true – time really does move faster the older you get!  Where has the year gone? In fact where have all the years gone?

 

 

 

 

I have just taken up the Chair of the alumni committee for my old school – whilst I’ve been on the committee for a few years the shoes I’m filling feel enormous as they were previously worn by my old chemistry teacher – one of my first official roles will be at the 30 year reunion for my own year group in September.  A couple of us are currently tracking down classmates – stalking people on Facebook, Linked In etc according to my kids – and it has unleashed so many memories.

Can it really be 30 years since we left school?  Some of this group know that I am now disabled, but it is going to be a really big deal attending this event in my wheelchair and answering the questions!  I think when I give a little speech at the beginning standing up, I might say that the wheels are to accommodate my high heels!

C and D

Who are those youngsters? Aged about 18 – Duncan in his Rick Astley days!!  

 

 

 

 

 

 

 

 

 

 

 

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The current 18 year old!

 

 

The funny thing is that despite all the physical changes in my body, the family I now have, the career I loved and lost, the exhaustion of life with chronic illness, inside I can still feel that 18 year old.  My own 18 year old just looks at me, shakes his head and tells me I am old – ha, ha, ha, none of us believe it will ever happen do we?

 

 

 

 

 

 

Playing 18

Mum and friends playing at 18 year olds!

So what better way to get over the feeling of being past it, than to find some inspiring blog posts to inject some zest today!  Kick off your shoes, grab a cuppa and settle down for some fantastic reads – I hope you enjoy this week’s gems as much as I have!

https://movementdisordersblog.wordpress.com/2017/07/31/skimming-through/

https://chronicyogiblog.wordpress.com/2017/07/31/what-if-it-stays-this-bad-chronic-illness-and-managing-the-what-ifs-spoonie-yoga-day-8/

https://brainlessblogger.net/2017/07/28/managing-work-with-chronic-pain/

https://wheelescapades.wordpress.com/2017/04/05/naidex-the-nec-birmingham/

http://jessicagimeno.com/how-chester-benningtons-music-helped-me-survive-depression-abuse-chronic-pain/

https://kellyontherun.com/2017/07/11/perception-icebergs/

http://www.goldengraine.com/2017/07/26/disabled-full-time-job/

http://www.chronicallypositivemom.com/the-last-lecture-inspiration-for-everyone/

http://www.themerrymomma.com/2017/08/3-ways-building-closer-family/

https://thoughtsinamoment.com/2017/08/03/biofeedback-therapy-with-mindful-nutrition-wellness/

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From Chronically Positive Mom blog

Remember to comment, like, share and make a blogger happy!

Claire x

 

 

To conclude her Book Blog Tour – Q&A with author Laura Trentham

Earlier this week I posted my review for new novel Leave the Night On and now to celebrate and conclude her blog tour, here is a fantastic Q&A with author Laura Trentham.

 

  1. What inspired the novel plot?

Plots are strange things for me…I can rarely pinpoint anything in particular that triggers an idea. They usually pop into my head when I doing something else entirely like making dinner of driving the kids around.

  1. What’s your favorite scene? Why?

I love the scene where Sutton gets drunk and finally propositions Wyatt for real. I hope it’s funny and sexy and the reader can feel her mortification when she thinks he turns her down.

  1. Who’s your favorite character? Why?

Wyatt. He’s sexy and tough, but also incredibly sweet. He loves his family and would do anything for them. My heroes are complex and most definitely not a-holes.

  1. Any other books in the pipeline?

Two more Cottonbloom books! WHEN THE STARS COME OUT (1/30/2018) features Wyatt’s twin brother Jackson. SET THE NIGHT ON FIRE (8/2018) is Mack Abbott’s book. Also, sometime in the fall of 2018, I’ll have a military themed romance/women’s fiction book releasing! I’m super excited about it too.

  1. What led you to write in this genre over others?

Actually, my first books were historical romances, and I’ll be re-releasing two and adding a new book in my historical Spies and Lovers series this fall (Sept/Nov 2017). But, while the historical books were on submission with publishers, my agent suggested I try a contemporary. It sold to St. Martin’s Press only a couple of months after my historicals sold. I’ve set all my contemporaries in the American south because that’s where I was born and have lived most of my life. I understand the way southerners talk and think.

  1. Do you have a favorite book and author?

I’m going to have to throw it back to Mary Stewart as my favorite author. I quite often reread her books. But as far as which book I’ve reread the most, it would have to be Julie Garwood’s The Bride.

  1. Why and how did you decide you wanted to write for a living?

I’ve always been an avid reader, but I didn’t even consider writing until five years ago. My daughter started preschool, and going back to work doing what I went to school for (chemical engineering) wasn’t feasible. I sat down one morning and started writing. At first, I didn’t even tell my husband what I was doing. I won’t lie, it took a lot of work and rewrites to get those first manuscripts good enough. But, eventually, I signed with an agent and sold them both.

  1. What’s your favorite way to relax?

Reading! (I know that’s a shocker:) I also enjoy the mindlessness of games on my phone.

  1. What’s your favorite food?

Fried rice! I just learned to make it at home. My rice cooker is my second favorite appliance (behind my coffee maker!)

  1. Sounds like Sutton’s fiancé’s a cheating…um…cheats.  Why did you decide to use that as an aspect of your story?

Andrew is a secondary character in the first Cottonbloom trilogy about the Fournette siblings. He’s kind of a slime ball in those books too.

  1. Tell us something about Wyatt that we don’t learn from the book.

He likes to wear women’s underwear. Just kidding!! Actually, I’m drawing a blank, he’s an open, honest kind of man.

  1. This book is set in Mississippi.  Does this location contribute to the story in some way?

It’s actually set half in Mississippi and half in Louisiana. I wanted a southern location. But, I also envisioned a twist on the wrong side of the tracks story. In Cottonbloom, the more affluent live on the Mississippi side and the blue-collar working class live on the Louisiana side. I wanted that push-pull and rivalry between the two. It informs the relationships between my couples.

Thanks Laura for a great new read!  I will be looking out for some of the other Cottonbloom books….quite fancy finding out what happens to those other Abbott boys!

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Chronic pain, opiates…& where does that leave me? (Part 2)

continuing from yesterday’s republished post, this is the follow up written at the time with a few additions and adjustments for today…..

So where does this leave me?  I am the person sitting in that seat desperately in need of help.  This “me” refers to all of us experiencing chronic pain whatever the reason – pain that has lasted for longer than 12 weeks – 6 months depending upon who you read!

From that first visit to our general practitioner to the physio to the surgeon, it can feel like everyone is giving conflicting advice.  I don’t blame the GPs for starting so many of us on opiates.  When the gabapentin or lyrica isn’t sufficient, and the amitryptilline doesn’t touch the sides, there isn’t much else left to turn to when this desperate individual is begging for help. images (20) In the same way, how many of us have surgery out of desperation?  I am sure that the neurosurgeon who performed my first fusion really didn’t know what else to do with this weeping woman on his consulting room floor, declaring she couldn’t take any more!  I don’t think that anyone takes these drugs lightly as the side effects can be so debilitating and vary from person to person.  The consultant from my last job prescribed my first cocktail and I never dreamt that I would be taking them for so long or quite how they would affect me.

We’re prescribed tramadol, sevredol, oromorph, MST, oxynorm/contin, and at first there is usually some relief.  For me the drugs never completely masked the pain and the dose of pregabalin was soon topping the scale and the oxynorm started creeping upwards soon to be replaced with the long acting variety.  I smile now when I think how at work the “control” drugs are kept in double locked cupboards and yet my bottle of oxynorm was stuck on the kitchen window sill to take a quick swig when the pain became too much.  My GP never tried to limit amounts and gradually increased the dose over the years.  I had also been prescribed mirtazepine to take at night – another antidepressant drug prescribed by my old consultant.  The side effects were horrendous.  I tossed and turned all night yet was unable to function the next morning to the extent that I knew the kids were in the room, but I couldn’t open my eyes.  Eventually I weaned myself off. But at my very first appointment at St Thomas’ Dr P took one look at my meds and informed me that the opiates would have to be reduced.  Yes, he did explain why with the reasons from part 1, but I think that everything that came after was a blank.  There is a feeling of panic – how on earth will I cope with less than I am taking?  This isn’t even working!  A fear deep in the pit of your stomach as the realisation that you may be forced to try to tolerate higher levels of pain hits home.images (21)

St Thomas’ hospital, London, policy for patients on the spinal cord stimulator programme is that you should not be taking any liquid or injectables; breakthrough doses should be weaned right down before the trial; and high doses of long acting opiates should be weaned down (MST & oxycontin).  I don’t know why different hospitals have different policies.  In my experience over the years consultant preference has always played a huge role in this type of policy.  I have no idea how other countries deal with this issue, but I do know that the USA carry out a huge number of  nerve transmitter inplants each year.  We all have different pain and maybe a one policy fits all is not the right way to go.  Within our group a lady barrister had a chronic bladder problem (interstitial cystitis) which left her with constant raw areas on the bladder wall.  Her pain had very specific flares resulting in a trip to A&E approx monthly and pethidine injections until the flare subsides.  She was unable to imagine how she could possibly cope during these times of crises.

Telling us that we must cut back is the easy part. Doing it is somewhat trickier.  There will be several people on SCS facebook support groups at any one time who are currently struggling as the pain spirals up as the drugs go down.  It is tough on nearest and dearest too.  Every time that I have lost the plot in recent weeks, my daughter looks knowingly at the rest of the family and mouths “drugs” – even when she deserves to be yelled at!  So is there a simple answer?  I guess the obvious would be not to prescribe opiates in the first place, but until a suitable alternative becomes available, I don’t believe this will happen any time soon.  So meanwhile, we dependents will have to ask you friends, carers and medics to bare with us as we attempt to wean down our dosage, to offer love, support and most importantly, please don’t judge when the going gets tough, as it certainly will.

Update 2017:  I was still taking oxycontin when I had my scs trial and the permanent implant, although I had managed to reduce the dose.  Over the following months, with huge support from my GP, I continued the process of weaning down my dosage – afterall one of the reasons for having the implant was to be free of drugs.  Bloody mindedness stepped in and I came down the doses considerably quicker than my GP wanted me to, but be under no illusion, it was not easy.  Upset stomach and cramps (for someone with EDS gut issues normally), sweating (additional to POTS symptoms), concentrations issues, insomnia (worse than previously) and more.  I met up with several friends I mad on the pain course last summer, and whilst we had all had different experiences with the scs, we were all agreed that we felt better since ceasing opiates.  We still have chronic pain.  But we have found that we have better nights (remember I can’t have my scs switched on at night so have no relief for my nerve pain) – not necessarily sleeping more, but better quality sleep – and the feeling of being oneself again.

For me a noticeable difference has been an increase in the pain associated with my Ehlers Danlos syndrome in my joints and soft tissues since stopping the oxycontin.  I believe that the opiate was masking my deteriorating condition and I am now having to learn to manage this without resorting to strong opiates again.  On bad days it would be very easy to open those bottles of oxynorm again!  download (1)Funnily enough I actually find that weak opiate based drugs, such as codeine phosphate/paracetamol mixes, give me more side effects causing me to reach for alternatives first (heat, gentle movements, gels etc etc). On the bad days……! The spinal cord stimulator has definitely given me control over the chronic pain in my back and leg caused by nerve root damage – I can go as far as to say that I would be unable to manage life without it.  But I am not drug free – I remain on the highest dose of pregablin/lyrica – and it currently is unable to provide any relief for my other chronic pain.

I plan to cover some of the more recent innovations in neuromodulation and also pregabalin?Lyrica – please send me your thoughts or suggestions!

 

#Book #Blog Tour – “Calling Major Tom”

This week author David M Barnett is on a blog tour to promote his wonderful book Calling Major Tom and he will be stopping by Pain Pals on Wednesday!

If you have read this heart warming story and have a question or a comment then drop by – or comment here right now!

Blog-tour

Book Blog Tour – “Calling Major Tom”

This week author David M Barnett is on a blog tour to promote his wonderful book Calling Major Tom and he will be stopping by Pain Pals on Wednesday for a Q&A post!

If you have read this heart warming story and have a question or a comment then drop by – or comment here right now!

Blog-tour