Dear hormones

Dear Hormones,

What are you playing at? Seriously, I thought we, as a body, were all in this together; fighting against the odds of EDS and Heart Failure, beating them against all expectations and doing a pretty impressive job of it actually.  Then, you took it upon yourselves to go off-piste and take control in, frankly, a hostile-coup!  I have been kidnapped and need to be rescued before all the things I know about myself and who I am fail to exist!

Menopause, peri or otherwise, you need to take a long-hard look at your behaviour and attitude to this relationship.  You’re walking all over the rest of the bodily functions and just making decisions without consultation, or warning, and expecting the rest of us to keep up.  What about some instructions or case-studies to ponder before being taken down a path we did not choose?

Let’s start with emotions; I have always been an emotional person, driven to hasty outbursts of love, tears or anger, not one to hide how I feel about things.  I had them pretty much under control as a woman approaching 50 though, and could usually decide appropriate locations to share emotions that might impact others.  Now, however, you’ve decided that I need shaking up a bit and even the mention of a sad-pet-story or a child telling her dad she loves him, reduces me to a wreck, crying uncontrollably, with snot-bubbles and everything.  I heard Michael Buble singing this morning and cried for almost an hour.  When John innocently entered the room and asked what was wrong, I started all over again.

And let’s not even begin to talk about Politics or I’ll be ranting for hours about the injustices on the planet and whom I believe to be responsible for them.  This is often followed by me throwing things!  Seriously, I had to replace a whole set of glasses last week as we were down to our last three.  I go outside almost daily and throw something at the wall, just so I won’t do anything worse.  John is learning to spot the signs and has started suggesting we go and cut wood in these moments as I achieve so much more that physically I thought possible when filled with this overwhelming urge.

Night time seems to be your chance to really punish me though, with sweats that mean I have to shower at 2am and anxiety like I’ve never experienced before. I’m worried about everything at night; from our ongoing struggle to sort our accounts out from when I had my surgery to whether I will make it my 50th this autumn, to what might cause the house to burn down.  And each worry seems to real, so important, that I am totally unable to resolve any of them with a sense of my usual calm.

I am horrible to John, to myself and even on occasion to our pets.  I am ashamed to say I shouted at Branston (our dog) yesterday, just because he made me jump when he put his head in my lap.  He just wanted to let me know he’d picked up my mood and could help, but I shouted at him.  I hated myself for a whole day for that.  I cried over it every time I thought about it.  Thank you for that, dear hormones.

I tell myself every day that I will take control and “own” my response to your constant changing, and that I can get through this without being awful or angry or ridiculously sad.  And so far, every day, you do your best to scupper my plans.  Well, okay, I get it, you want my attention and you want to be noticed.  I NOTICED!  YOU HAVE MY ATTENTION!  Now please, can we attempt to work together on this?

Yours, in hope,

Dinah

Brexit: much more than politics

It’s taken until now for me to feel ready to write about the results of the UK Referendum on our membership of the European Union.  I made no secret of the fact I was voting to remain, and while I stand by my decision, I am more in despair of how we seem to be reacting to the result than I am by the result itself.  I keep waiting for us to respond how everyone says we will “we always stand together when the going gets tough” and “Us Brits are great in a crisis” must be the most common phrases I’ve heard since the vote.  As I write this, however, I have yet to see signs of either of these being true.

When I was growing up, my parents were among very few adults I encountered who didn’t believe you shouldn’t talk politics or religion; they positively encouraged it and on more than one occasion I sat enthralled listening to heated discussions over their dinner table that went on into the small hours.  I got my love of debate from listening to them talk about the Israel/Palestine crisis, Socialism and how it was being diluted and manipulated, who had which part of our Press in their pocket and how we could change any of these things.  It drove me to want to be part of the change.

Currently, the trend seems to be that talking politics is a dangerous thing, to be avoided or shouted down.  Indeed, many of my friends, whichever way they voted, have received angry abuse aimed at them on blogs, Facebook and Twitter.  It’s shameful how quickly we are prepared to pounce on the views of others and say they are wrong because they do not agree with our own. This, for me, has been one of the most unpleasant aspects of the Referendum.  Watching the language of people I know and respect turn from measured and thought-through to angry and reactionary and often down-right offensive.  Aggressive defending of a political position and the desire to say “Told you so!” are not only unattractive behaviour, they also show a lack of control, a limited vocabulary and a side of someone that can make many review connections.  I personally stopped following over thirty people on Facebook during the build-up to the vote as I did not want their remarks on my timeline.

Had we been living in a country like Syria, indeed anywhere in the Middle East or many of the areas to the East of our planet, then perhaps I would understand the anger that boils over to hatred.  Lives have been touched by politics and religion in many parts of the world that we, in the West, can only read about or imagine.  Images on TV and in the media do not come close to experiencing these awful situations first-hand.  In the protected, wealthy (relatively speaking), safe haven of the West, we are living lives than most of the refugees we read so much about cannot even imagine.  And yet instead of seeing hope, community, the chance to make change happen and express our opinions, we choose to create hatred, spread lies and call each other names.

I’d love to see a change, to the way we “do” politics in this country.  I’d love to make it compulsory for every single adult in the UK to vote and for it to be a subject taught at school not simply as an A level of choice but as a subject of real pride; we are living in a country where our voices are heard and listened to and where they can make such vast change than our entire government has had to be changed to deal with it.  I’d love to see proportional representation where every single vote matters and the opinions of every member of our society is heard.  I’d love, more than anything, to see our Politicians held to account for their promises and actions, meaning they would leave behind their shouting and hatred-fuelled words, their words that incite violence and anger.

Do I believe that this vote will lead to these?  No.  Sadly, with what I’ve seen, I don’t believe Brexit will be the “holy-grail” that the Leave campaigners are now claiming they’ve handed us, if only it could be.  Sadly, however, I have seen only evidence that the people’s vote has not been seen for anything else than a mis-guided decision and almost without exception, the remain campaigners are responding by saying “well you got us into this mess, now deal with it”.  Hardly the in-it-together approach I was hoping for.  Even our new Prime Minister has appointed people to roles which seem to be saying “get in there and sort this mess out – if you can” rather than appointing talented politicians who might negotiate a deal for our nation that we can be proud of.

We voted to leave; and yes, I do include myself in that, because above being a “remain voter” I am a British citizen.  I want my country to succeed.  I watch the Olympics with pride and wave my Union Jack flag and wear my Team GB T-shirt because I am in love with my country and hope to always be.  I want the very, very best people in charge of our exit from the EU and  I want new, inventive and creative people in charge of our negotiations with our nearest neighbours to ensure they still want to work, visit and play with the UK.

The people of my nation have spoken and I have to accept and embrace what they have asked for in a way that sits with my values.  There have been times I have struggled with this, and I suppose that is part of the reason it has taken a while to write this post.  I came across so many angry, hateful posts filled with words that I cannot embrace; racism and patriotism should not be seen as the same thing.  I am British because the people who brought me up chose to live here, no other reason.  As an adopted daughter, whose birth mother came from Egypt and birth father from Denmark, who had adopted parents with families that had been refugees from Poland and Russia, fleeing from oppression because of their religion, I believe I am a typically British woman. I am proud to be British, to be a melting pot of humanity, a mix of cultures and faiths that have produced me.  I’d confuse most racists, who would never see me as anything but a white, middle class woman.  Racism is just a load of fear, tied up in ignorance and nasty language in my opinion.  I am one of the lucky ones; unless I tell you my history, I go under the radar of the haters. Only when we accept there is a huge problem with racism in the UK can we begin to beat the fear behind it.

The racists will always be here, and their fears will not be tackled by any vote or distancing of our nation.  They should not be the voice we focus on.  Spreading their message just gives it air-time it does not deserve.  It was a shame for the people I know who voted to leave the EU, that racists hijacked their arguments and that our media was so fast to tar them all with the same brush.  Time to move on.

I choose to focus my positivity and belief in the future we can choose to create if we continue to be involved, empowered and engaged, if we continue to take part in our political futures and if we turn up in the kind of numbers we did this time round, for the rest of our lives.  I see it as a duty to encourage the future generations to vote whenever they get the chance and to ensure they do their research before they do.  Don’t depend of the words of the media for that insight that will help you make your political choices; listen to conversations over dinner tables, go to debates, visit museums and read books.  Above all, express your voice and right to make change in a country we will all be responsible for shaping, only if and when we admit we all “do” politics. It’s in everything we do and every decision we make for our country.

 

Letting go of letting-go!

A few years ago, I had a series of heart attacks.  From out of nowhere they stopped me in my tracks and made me reconsider everything about my life.  You could say they were a major crossroads; I’ve spent a great deal of time since focussed on “letting go” of the feelings I was left with, that I’d been deprived of the future I’d been planning, a brief example of what lay ahead enjoyed, the perfect business collaborations and friendships formed, all to be knocked back, all to be no longer available in my new life.  I think it was only yesterday that it hit me, I’d been so busy trying to let go, I had forgotten to look forward, to plan a new way, to explore what I have now that will shape a new path.

When life changes mean we have to make new choices, we have to allow ourselves a period of time to learn to adjust; that time required for acceptance to replace anger and frustration, time that heals initial pain and confusion and stops us asking “why did this happen to me” and replaces it with “what can I do no that this has happened?” and finally “I’m ready to see a future, how ever different it looks to the one I imagined.” When I was 26, I had a car accident that left me in a wheelchair for almost 12 years and one of my key learnings from this experience was that we have to mourn things we loose, not just people. I lost the use of my legs at 26, I had to mourn all the things I had lost from my independence to my joy of mountain climbing to making love with my husband.  I had suffered a loss, a bereavement, the death of my life the way it had always been.

The last few years have been my time to adjust, to come to terms with my latest loss, the belief that my heart was strong and would work, without me thinking about it, for many years to come.  Once you’ve lived through the heart attacks, the surgery, the physical recovery, the news of heart-failure, the difficulty breathing and total inability to do much of anything without help from others, you start to accept.  Acceptance that you are a different person, physically, and that means mentally too.  Acceptance that life is not going to look how you imagined, or planned. Acceptance that every day is rather special, precious, too important to waste on worries and concerns.

Now, I’ve reached the point of planning for a future; that feels amazing.  Seriously, when you’ve spent a few years not knowing if you’re going to make it, you see every single day as a bonus (even the ones where you feel negative and scared and less than great) because it’s been such an enormous effort, on the part of so many, to make it here.  Planning can take on a whole new meaning now, not just something I’m told to prepare for my business to thrive, but instead, a plan for my life, to live every day as though it might be the last chance I get to enjoy feeling this good.  I’m reminded of a song by Tim McGraw called “My next thirty years” and the lines speak to me of making every moment count.

My focus now is changing, from letting-go to letting-in; I’ve pondered enough times to last me a long, long life, what might have been if I hadn’t had the heart-attacks.  It is time to let in the new, embrace the opportunities starting to come my way with my new focus, my new goals in place.  It can so often be the case that we’re not open to new opportunities because we’re so focussed on the past, the ones we think we missed or messed up.  Not for me, that time in my life is through; I know I have limits, that my heart is depending on me to look after it and make sure I stick to those limits and behave.  And it’s also telling me in a loud, strong, clear voice “I trust you. Go get ’em girl. It’s time!”

And it is time. Time to move forward.  Time to let go of the letting-go and time to get on with the next chapter of this remarkable life.

Dinah x

 

You can have it all ladies….

I am happy with my lot. I know in my life I can have it all; motherhood, success, a happy marriage (27 years and counting), exotic holidays, a wonderful home, time with great friends, fabulous car, a wardrobe full of clothes I love, immaculate house hair and nails….. Sounds like a dream doesn’t it?

Many women ask me “how can I have it all?” and I have the same answer for every one of them…..

You can have it all – just not all at the same time.

My wonderful list is not all about now. I have had times where about half are happening for me together; I’ve had times where I have chosen to squeeze too many in – and lost sight of the really important ones. Why does “having it all” have to mean right now. Like spoiled children stamping our feet, are we simply throwing a tantrum? Is our perception of other women so warped that we believe we are failing if we aren’t juggling a million balls at once? Do we really believe there are women out there doing this single-handed and effortlessly? Get real!

The truth is they are all making choices; not all of them ideal. Compromise and patience may not feel comfortable alongside ambition and determination, but without them you are setting yourself up for failure on so many levels. We can choose to beat ourselves up for failing to vacuum, we can choose to berate ourselves as appalling mothers for missing swimming club or we can choose to acknowledge what we achieve each day and celebrate it.

So where do you start? A reality check would be a good beginning. When you talk about “having it all” what does that really mean to you? I’m confident that “beating myself up regularly” isn’t on there, so what is? No box thinking here – what does it really look and feel like?

The second step is more challenging; ask yourself who are you doing this for? Do you want others to speak about you as the woman who “has it all” ? Are you still attempting to make your father proud of his little girl? What exactly are you hoping to achieve? Being honest about this can be hugely liberating. My own experience showed me this clearly in my mid 30’s when I finally stopped trying to impress others and made my achievements simply for myself. I got so much more satisfaction and a huge sense of achievement and I saved all that energy and time!

The third and biggest step of all is to find juggling partners. Put people around you with the right skills and juggling becomes entertaining. Asking for help and trusting others are big obstacles for many of us. Asking for help can feel like failure – if you want it to. However, asking another to bring their skills to the party, to be a part of your team, is a compliment to them. If they value you they will be chuffed that you asked; they will understand it is a big deal for you. Do something totally non-selfish today and ask someone to be part of your juggling team – you’re inviting them on tour.

Over a life-time we really can have it all. We can appreciate every part of it more if we stop and take a good look in at our own lives. Those women you believe have it right are juggling too, they just realised they didn’t have to do it alone. They shared the load – and the balls!

Dinah x

I originally had this blog posted on virgin.com as one of their  VIBs (Very Important Bloggers)

 

Choosing to accept

Ok, so here’s the thing…..

Of course I’m grateful. Grateful for the new lease of life I’ve been given; for the amazing care at the hospital; the wonderful messages from friends; the visitors who’ve come to cheer me up; the constant, un-ending support from John.

So why am I feeling so down? What is really keeping me awake tonight, the night before I finally get to go home after 33 nights in hospital?

I looked in the full length mirror they have in the shower room here yesterday. I was horrified by what I saw. A body covered in bruises, some so big and dark that they look fake, others tiny and already going green at the edges.

My Body covered in scars, with a new one standing out in the middle of it’s chest; clean incision, well closed (glue not stitches!), neat yet long scar.

I notice the surgeon has lifted my left breast – around four inches, maybe five, as he has closed my rib cage and sealed it with his careful stitching and gluing.

I only notice because my right breast now hangs lower, the nipple pointing straight ahead while the left seems to point slightly to the right. Can you have a lazy nipple, like a lazy eye?

And then I look at my leg. My poor left leg, dominated by a bruise across the whole thigh, that wraps itself around from front to back – or perhaps back to front, I’m not sure.

And on the inside of this bruised, swollen thigh, nine small incisions. Proof that they worked hard to harvest enough veins for the by-pass surgery.

Thanks to the swelling, each incision looks angry & ready to burst open, causing the whole leg to look strangely shaped and to rub against my right leg with each step.

“The swelling will go down soon” they tell me. “Keep it elevated and walk a little each day and it will soon be back to normal” (what is normal anyway?)

So when, at 4am the nurse asks me “can’t you sleep Dinah” and I try to explain and she offers me the advice that “you need to be strong Dinah” I really do want to scream!!

I need to be strong!? Have I not been strong enough for a lifetime yet?

Perhaps what she really means is “I don’t know what to say.” Because what is there to say?

John tells me I look gorgeous; I know he means that. Love sees things differently. Love is blind. Love is amazing. I joked with him tonight “it’s a good job you love me already babe, because I wouldn’t have a hope of you taking me home otherwise”

And so, I’ve had a sleepless night, worrying about going home instead of being excited. Worrying about how I will cope with this new body; I had only learnt to love my old one in the last few years and now, well, okay so here’s the thing….

Written the night before I came home from my heart surgery in 2013. I now felt ready to share this here.

Dinah x

Alan Rickman – an agent of change

 

Alan Rickman was one of those actors who I always believed; no matter whom he was creating or representing in his portrayals, I always felt he nailed it and brought the character to life.

“Actors are agents of change,” he said. “A film, a piece of theatre, a piece of music, or a book can make a difference. It can change the world.”

I love this quote and it has certainly been true for me; many actors have influenced me politically, emotionally, even spiritually and had a lasting impact on my choices in life.

Hearing  he had passed away from Cancer today, a sense of sadness hits me that had barely healed a scab since the news that Bowie had died. “Not another one!” I shout at the Guardian online news report; “What the f••• is going on!”

I know partly that what’s going on is I’m getting older (does a little dance of celebration, as being ‘in my late 40s’ has never been on the plan due to my health) and therefore my ‘heroes’ are starting to reach the age where it is inevitable we will hear they have died.

I wonder if it’s also that since my own diagnosis, knowing I’m living with a ‘terminal’ condition, I feel the deaths with a different perspective.  I am not afraid of death, of my own dying. I am, however, fearful for those I leave behind; I worry about how they’ll cope in certain situations without me, who will comfort them in times of crisis or need and whether they’ll remember the recipe for my chocolate brownies. Hearing about the passing of Lemmy, Bowie and Alan, my first thoughts were for their families.

I’m so pleased to have been born during a time where we can continue to enjoy the legacy each of these amazing men leave behind (and of course many more); being able to play their music, listen to their words or watch their work, is a real blessing.  It makes me grateful for things like this blog, where my family will be able to look back and remember what mattered to me, and for places like Facebook where I’ve shared moments that made us giggle or cringe.

Thinking of Alan’s words, believing we can all be ‘agents of change’ I wonder what I’d most like to have had an impact on in my lifetime, what I’d like to look back on and say ‘I helped to change that’?  Will it be something ‘big’, like being involved in a campaign, or something ‘small’, like giving someone confidence to make a change for the better in their lives?

As an Agent For Change, what would you love to leave for others to remember you for?

In that last breath

 

What if, in that last breath I do not express how I love you
How you have changed my path, become my destiny
Forged with me a new way of being, of belief that I could do anything
What if, in that last breath, you do not know.

What if, in that last breath I do not express my pride in you
How you have been brave enough to forge your own path, your own destiny
Never letting others hold you back, question your dreams, tell you you can’t
What if, in that last breath you do not hear my pride.

What if, in that last breath I fail to share my joy of life with you
How much I have loved, how many moments have been filled with delight
Determined to make the most of every precious sensation, feeling and moment
What if, in that last breath you do not hear my laughter?

What if, in that last breath you feel nothing but the wonder of our time together,
How much of it was fun, new, exciting and full of laughter and love
Always embracing the moment, enjoying each other for who we were, each day
What if, in that last breath you know, without question, i will love you always

Dinah 20 November 2015

A bad case of wind!

As I was sitting in my new office, writing blogs, I became aware that autumn had brought a bad case of wind with it!  My new office, you see, is an old caravan, parked between our garage and our woodland, so when the wind arrived, I found my writing room shaking from side to side.

Wales certainly knows how to do weather; whether it’s wind or rain you’re after, this autumn is already producing plenty and as we’ve found as we settle into our new home, every aspect of the British weather seems to be on steroids here!

We’re learning how to work, outside, in the pouring rain; apparently, complaining about soggy bottoms simply makes it more obvious we’re really ‘Townies’, so we’re learning to reply ‘Tidy’ when asked what we think of the weather, which is always greeted with a chuckle and a nod.

The main upside to all this amazing weather? Our surroundings.  We have trees showing every colour from green to gold, hedgerows filled with birds loudly complaining about the weather and celebrating moments of calm.

We’re loving the autumn here, and if a bad case of wind is a consequence, well, I can live with that!

Dinah x

Perhaps it’s my age…

perhaps it’s my age, liberating me from unhelpful embarassment and restraint; perhaps it’s my illness and the concept of living every day as if it might be my last; perhaps it’s just that it was the right time for me to free myself and express opinions without fear of offending or starting a real discussion. Whatever the trigger or catalyst, I find myself in unfamiliar, and actually rather wonderful territory. I’m expressing my opinion and enjoying it!

i’m not sure if it’s a British thing or a female thing, or perhaps it was a cultural one, but I’ve spent the majority of my life keeping my opinions largely to myself; the exceptions to this have been the times when I’ve chosen to get involved with like-minded groups where our purpose is to express these shared views.

At home, I was taught that I should stay quiet and allow adults to talk as they had more experience (read: “be quiet, you know nothing”).

At school, the message was to listen unless you had something exceptionally clever to add to the lesson (read: “you’re an average student, you have nothing to add”).

At Sunday School, I failed to pay attention as I was convinced from a very early age that there was going to be no “god” in my life, and thus was taught Only one thing, that hate travels through generations and we have to choose to be the place where that ends.

I have always hated political correctness and the idea that I’ll be offending someone no matter what my opinion, and that therefore I should say nothing. And as I have always feared, this silence is dangerous and can spread faster than any cancer. Whole States sit in silence so as not to offen the religious rights of another, and allow wars and genocides to occur whilst they sit in silence.

well, not me. Not any more. Perhaps it’s my age…..