Nobody said it would be easy – cake, life and curveballs

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Tonight is the 3rd birthday for The Book Club on Facebook – a fantastic group that I belong to full of authors, reviewers and readers.  Basically book people.  Yours truly has been making the birthday cake over the last few days and with a shoulder slipping in and out of socket it has been no easy task!

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Of course I have been too ambitious and I always start with an image of the finished cake, and then am disappointed in my results.  This has taken me longer not just due to my lack of a right arm – yes, I am right handed – but also down to the design and needing to let it harden in phases.  More of that later.  It has made me draw parallels with expectations of everyday life – don’t worry I’m not going to get too deep here.

But how often do we set out with expectations of how an area of life will turn out only to be disappointed.  So many people talk about their life plans from university to careers to marriage to children etc, etc.  But life has this habit of throwing in a few surprises and curve balls along the way doesn’t it? Isn’t this true for everyone?

Life with illness – be it chronic, acute, mental or physical – is something few of us can anticipate and much less embrace.  When I set off to nursing college as an eager 18 year old, I never dreamed that life would turn out like it has.  But then I guess it is a good thing because with each setback it is so important to be able to get back up, brush yourself off and continue.  If I had known when I had major back surgery at 21 that by 38 I would be heading for medical retirement, I might not have tried so hard to get myself back on my feet and back to work.  I loved those years nursing and I think that I was a pretty good nurse.  If I had known my genetic diagnosis – Ehlers Danlos Syndrome – and all that it covers aged in my teens, I might not taken up rowing and then gone on to nursing – probably the worst things I could have done but great experiences.

But then some of the curve balls can be pleasant surprises.  For me probably the biggest surprise was falling pregnant when I had been told I would never conceive naturally.  The tiredness, anaemia and nausea/sickness turned into a pregnancy when my GP carried out a PAP smear and informed my cervix was blue – a classic sign of a 13 week pregnancy apparently!  I was taking HRT and had gone for a check up ahead of a new job – but came out as a mummy.  A huge curve ball, not in the game plan but fantastic (although I wasn’t saying that half an hour ago when said babe, 21 years on, created havoc in the kitchen with a pot of pasta on the stove!).

Being Mum

The surprise. aged 4 weeks….now a cover board on Pinterest!

I suppose what I am getting at is the importance to strive hard but also to accept that not everything will go exactly to plan…..and this is ok.  For me I’ve been thinking about the periods of needing to let my cake set before I can continue with it – living with chronic illness has these periods when fatigue hits and symptoms flare equalling a need to rest and pace.  Wait for the cake to set!  Don’t rush it, don’t take short cuts because there will be some sort of pay back.  In my experience this is life – illness or not.

So back to the cake….it is for a book club, so clever clogs here decided to make a stack of books.  The individual books were made – one chocolate, one Victoria sponge and one lemon – and then the icing covers started.  This is where the patience and waiting was required and I’m not good at this part!  Then last night came the final assembly of the three tier cake to form a stack of books……it wasn’t completely straight forward, there have been a couple of corners broken, some scaffolding was required and this morning some patch were required to plaster a few stress fractures.  The result is a stack of books that are not altogether straight and definitely look like they have been well loved if a little dog eared.  Not so different to life, I’d say – starting with high expectations (nothing wrong with that and I am not saying they should be lowered), hitting a few bumps along the way, the odd curve ball and maybe the finished product not quite as expected, but nevertheless created and to be made the best of.  Not always easy to do or accept, but as the infamous anonymous quote says “Nobody said it would be easy, they just promised it would be worth it..”

Will let you know if this holds for the cake when it is tasted, as for comparisons with life….what do you think?

Nobody said....

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Tips for Throwing a Party – from Julie at ME/CFS Self Help Guru blog

I might have mentioned in a post earlier this week that it is currently the return visit of our lovely girl’s German exchange partner…or more specifically the return visit of thirteen 15 and 16 year olds.  The British girls, led by our daughter, decided that they didn’t want to revisit the awkward first few days of getting to know you that they had in Germany – they have all kept in touch in the intervening months and wanted to fall straight into “having fun”.  So this meant all being together on their first night….but not in a formal setting of a restaurant….”really we just want pizza and music in someone’s house, Mum!”.

Hmmm……no prizes for guessing who hosted 26 youngsters on Wednesday night.  It did prove to be a great ice breaker and they were extremely well behaved (I think there was more noise last week with just 8 girls!). The lack of mess after a delivery of 10 takeaway pizzas, crisps and drinks was unbelievable.  Whilst I had little to do on the evening, the beginning of this week was busy and Thursday morning saw me have an incredible crash and symptom flare.  I am just so hopeless at pacing myself and saying no…..we had 4 staying last night after visiting Thorpe Park and I think there might be 6 tonight…..I think that I should have read this post by Julie a little sooner!!  Great tips here whether you are chronically ill or fighting fit!

13 Top Tips for Throwing a Party When You Have a Chronic Illness

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A couple of weeks ago, I turned 50 and I really wanted to celebrate with a party. I shared the following tips in a Facebook live broadcast on the day. But just in case you didn’t see that or you prefer to take things in, in writing, I thought I’d share them here too, with the added wisdom of a little hindsight and an extra tip!

  1. Remember you’re choosing the consequences!

Sometimes we can choose to do too much, we just have to be willing and prepared to deal with the consequences (and what better excuse than turning 50!) I planned lots of rest before and after the party. Although my parents were coming to stay a couple of days after, they were warned that I might not have done all the clearing up by the time they arrived and that I would probably have to take it easy. I was willing to accept not feeling on top form for a while afterwards and when I felt rough for a few days I didn’t resist or resent it.

  1. Only invite people you really want to spend time with.

I decided I would only invite people that I really enjoyed socialising with.

To read the remainder of Julie’s tips please visit ME/CFS Self Help Guru

#ThrowBack Thursday – Searching for Happiness – Happiness is a Choice

This post was put up for Throw Back Thursday by Scale It Simple and it really got me thinking.  With the emphasis being placed on mindfulness and yet more in the press (UK) this week about mental health issues in teens – apparently a quarter of teen girls have experienced depression by the age of 14 – maybe we have forgotten how to be happy.

Let me wet your appetite…..

Searching for Happiness – Happiness is a Choice

Human beings are such interesting creatures. We are the only creatures that place personal “happiness” above safety and health.

For thousands of years, humans have walked this earth like nomads of the soul, searching for happiness.

Happiness is this way. No, this way. If you do this you will be happy. No, wait, this is what really makes you happy.

Did you hear about this car? This job? This brand? If you look like this you will be happy forever. If only I was younger I would be happier, if only I was older.

Humans roam all corners of the earth searching high and low for happiness. What makes one happy today will not do the job tomorrow and what makes you happy doesn’t do the trick for me.

So how do we find it? Where is happiness?

What if happiness can’t be found at all, what if in all this searching we are just confusing ourselves and wasting our time?

What if happiness is just a choice?

Want to read more?  Follow this link for the rest of a fab article!

Copy-of-Copy-of-Why-I-Switched-to-All-Natural-Beauty-Productshttp://scaleitsimple.com/2016/07/21/searching-for-happiness-happiness-is-a-choice/

Bank Holiday Monday humour: I Should Have Googled how to Play Soccer

This is so funny that I have to share it with you – just as Sick Christine shared it with me.  Hot Mess Memoir you have really cheered my day…..

 

I Should Have Googled How To Play Soccer

I can barely move my legs; they hurt so bad. This is somewhat of a wake up call that I need to A. continue my diet and B. exercise. Tonight was our parents vs. kids soccer game with my 8 year old-C. I decided to go all out so I hit the thrift store yesterday and scored an old-school pair of shorts and an Ohio State Soccer t-shirt for $4.50. I finished off the look with a thick white headband from The Walmart.

The Soccer Game

hot mess soccerAfter arriving at the field, I asked my friend to take this picture. Do you like it?

Find the rest of the post here: I should have googled how to play soccer

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!

What we are is up to us….in recognition of the Bard

It can’t have escaped your notice that it is the anniversary of William Shakespeare’s death, 400 years to be precise.  So in a small act of homage to the good bard prepare for a smattering of literature!

“What greater punishment is thereromeo & juliet quote

than life when you’ve lost everything

that made it worth living?”

Romeo & Juliet

 

 

 

 

 

 

 

 

Some days it feels like this doesn’t it?  What is the point in getting out of bed when your once ordinary life is now disappearing?  Of course angst ridden teenagers always have the monopoly upon the unfairness of life, just remember Harry Enfield’s “It’s not fair!” Kevin, and particularly on getting out of bed. The student engineer and lovely girl certainly fall into the latter group!  If the uni exams next week have questions about sleep and bed, he will be on his way to a first with no problem.  This might be the time to share that he is actually “revising” really hard on the beach in Barcelona right now – some student life!!

Chronic conditions aren’t going anywhere.  They have a nasty knack of rearing up just in time for that long awaited trip, but rarely taking a holiday when their wearer most needs some respite.  Sometimes pain, physical or mental, does feel like a punishment – to me anyway!  I don’t believe that there are many of us who are so selfless that we have never had that really bad day when we bemoan “why me?”.  But I suppose the greater question is “well why not me?” because in Kevin’s words life is not fair.  So on the good days I must focus on the things that do still make life worth living, so that on the bad days I can catch a glimmer that all is not lost.

“Virtue? A fig! ‘Tis in ourselves that we aShakespearere thus or thus. Our bodies are our gardens, to the which our wills are gardeners. So that if we will plant nettles or sow lettuce, set hyssop and weed up thyme, supply it with one gender of herbs or distract it with many—either to have it sterile with idleness, or manured with industry—why, the power and corrigible authority of this lies in our wills.”

Othello Act 1, Scene 3

 

 

 

Was Iago right?  Am I really in charge? A Twitter quote today said something similar CglAZQwXEAUz1Xj

I quite like the idea of my will power being the gardener and that this gardener can nurture new growth through good and bad weather.  This means that I can choose how I care for myself, that the seeds that I choose to sow and cultivate will shape me.

As someone with several chronic conditions I have lost things that made life worth living.  Independence, mobility, waking up without pain, spontaneity, feeling carefree.  But we all lose precious things throughout our lives, whether suffering an illness or not, as life constantly evolves and changes.  As the gardener, I must learn to appreciate the new blooms as they appear in my garden; to take one day at a time whether thunderclouds gather or the sun shines; to tend and care for this sometimes failing garden in order to appreciate the “rich and productive” things that do still make life worth living. Coffee with friends, a child’s excitement, a partner’s touch, a faithful pet, favourite meal, or the days when the sun shines.

So as we celebrate the Bard, remember fellow spoonies that rather than viewing life as a punishment because of what we have lost, look to the future with Shakespeare for “What we are is up to us”.