Wednesday, 23 December 2015

May You Be Blessed

I feel I need to perfect my drizzling technique on these Coconut Almond Macaroons that I  made tonight. Recipe thanks to David and Stephen Flynn - very lovely Irish twin brothers - from The Happy Pear - the name of their book and their restaurant in Greystones, Ireland. Their story is really inspiring and the recipes are all plant based, healthy and delicious.  I did add an egg white to their recipe as the first time I made them they wouldn't hold together.  As we don't give presents in our family anymore - except to the youngest generation -  these are little foodie Christmas gifts for the grown ups.

Still so much to do on the iron the white linen table cloth - a wedding present from Robin's brother - and find the red ribbon to criss cross the table - in memory of my grandmother's wedding bouquet and their first Christmas in China. I like carrying on these traditions  even though we'll only be three or maybe four for Christmas lunch here and we'll be having salmon not turkey.....and lots of roast vegetables....the best bit.....and my sister's Christmas pudding...even better.

It feels like a marathon still to run to get to that table...and I know lots of things will fall by the wayside...but none of it matters.....we are still together.....still Christmas at a time.

Signing off now till 2016. Wishing you all well....may you be blessed with love and open hearts and the remembrance that whatever arises,


Tuesday, 22 December 2015

Short and Inconclusive

Lyme Regis on Sunday,

the waves crashing 

over the Cobb wall.

So we didn't venture far along 

the top of the wall....

remembering the last time we were here 

Robin tripped on the steps leading up to the wall and fell on his bad hand, hurting his fingers.

So instead of walking to the very end like we usually do he bought an ice cream cone, which he had great difficultly lifting to his mouth, letting it dangle at an alarming angle, dripping from his hand. We wandered back along the beach, heading into the wind.

The letter we've been waiting for arrived this afternoon along with more Christmas cards. The letter from the neurologist with the MRI results. It's short and inconclusive. He says the scan shows " relatively rapid temporal frontal and hippocampal atrophy.....and nerve conduction studies show a motor axonal demyelinating pattern......which doesn't point us in the direction of MNT specifically....."

I translate that as it's getting worse but he doesn't know what it is.

 I ring the GP and she advises me to push for an early appointment in January.

So  no diagnosis then ....we are still in the dark....still waiting.

Tonight I burn the butter for the scrambled eggs. Then I burn the toast and throw it away.  I forget about the Christmas cake in the oven while I watch the semi-finals of Professional Masterchef and it burns on the top so I expect it'll be dry.

I've never felt less Christmassy and more behind in all my preparations..... 

Monday, 21 December 2015

Solstice Supper

Pistachio Meringues - a take home gift from a friend this afternoon - part of the sumptuous Christmas tea she gave us after Robin's healing session with her....reminding him that he doesn't need his arms and hands to be the gift of love that he is to all of us.

 Tonight at a gorgeous Solstice celebration at a friend's beautiful home I felt so deeply touched by her words about how we don't ever really know the effect we have on each it's not just the big things we are all doing in our lives that ripple out into the world but it's often the little things too. The small thoughtful kindnesses that touch our hearts.....that get passed on ....that keep us connected.

I heard a man being interviewed on the radio today -  I think he had a post office in a small village that had been very badly damaged by the floods in Cumbria and he said he had offers of help from more than 50 people - to do the horrible jobs of clearing up.

When I got home tonight I carried with me all the hugs and love and acknowledgement I'd received all evening. And then I opened more lovely emails and cards -  kind, encouraging words and a message on the answer phone  - an offer of a special jug cup which might help Robin with his drinking. 

I feel so blessed tonight. Letting it all in makes my heart bigger and wider and kinder. And theirs too. 

Friday, 18 December 2015

A Fug Of Christmas Cooking

Finally run out of steam - beyond the realms of tired.  Most of the day in the kitchen - my favourite place - doing what I love - anything with food. This morning making Christmas presents -  experimenting with raw chocolate tiffin cake studded with gogi berries and hazelnuts, coconut almond macaroons and roasted almond and cashew nut butters. 

But everything takes a long time and I forget to drizzle the macaroons with chocolate, I dither about whether to re-make the cranberry and walnut brownies I baked the other day as I'm  not happy with them. It's because I'm distracted by my new iPhone going wrong - I'm not receiving texts from some numbers. 

So when Robin comes back from his outing with a dear friend, complaining of pain in his right leg and goes for a lie down, I drive into town and visit Carphone Wharehouse for technical advice. The young man deletes all my messages, fiddles with it and says it's fixed. But it isn't.  I want to scream with frustration.

Later when Robin wakes up, and after late salad lunch, it's too late to go to Killerton House to see the Christmas decorations. As it's getting dark we drive out to Tescos in another town to make an outing of it and stop at Quickes Farm shop for a cup of tea - where I have the best cheese scone ever - properly warmed up in the oven not the microwave, crisp cheesy crust on the outside and tender cheesy crumb inside. Maybe the secret is also that they use their own cheese and butter churned on the farm.

I spend too much at the supermarket, I've got too many lists, I can't remember if I bought walnuts and butter last time so I get more just in case.  Robin says he really enjoys it - wandering round the unfamiliar  aisles  looking for honey and Thai curry paste. The bags are too heavy for him to carry 
now -  he can't lift them into the boot.

At home he sleeps some more -  on and on into the evening  and I fret about my phone and decorate the chocolate brownie trees - getting slower and slower and more haphazard with the gold stars and the silver balls.

 We have egg on toast/ jam on toast for supper on trays in the sitting room as the kitchen table is covered with my recipe files and lots of lovely Christmas cards - everyone remembering us - reminding me I haven't written our Christmas email....not sure what to say or how to say it. I'd rather bury myself in a fug of Christmas cooking than think about our life....already so different from this time last year... and dreading what's coming next year.

Thursday, 17 December 2015


The thank-you cake( Chocolate Almond and Orange) I made  for Robin to take to The Mede today. It's  the wonderful place where he spends the day in the company of a group of older people, mostly men, all with varying degrees of dementia. He also has his own one to one support person - a lovely woman who goes out with him, or does other things with him when he can't manage/ understand/gets bored with whatever activities  the group is doing.

She says he's a pleasure to be with. And no-one seems to mind when he kisses everyone goodbye - even the men - often on the tops of their  heads. In fact they seem to like it - it always makes them smile.

When everything else is taken away there is just love revealed.  Robin's gift, out of all the horribleness of his disease, is the way he's being of service to me, caring for me - showing me to myself - not the way I would have wanted -  but all the same I'm learning more and more about this giving and receiving thing. 

Robin says he wants me to be maybe the greatest gift I can give him is my own happiness. Which would mean loving and letting go at the same time. A whole new practice.

Wednesday, 16 December 2015

Another World

Just got back from lovely Thai crab noodle supper with dear friends in their  beautiful elegant house ....huge sparkling Christmas tree in the sitting room.....and then a trip to the Radway cinema and  a live streamed performance of the Royal Ballet's Nutcracker Suite......such vibrant energy, talent and beauty.....such a treat to escape, however briefly, into another world.... a million miles away from mine. 

Tuesday, 15 December 2015

Swallowing And Keeping It Simple

Exmouth on Sunday.

This morning my sister helps me make some order out of the chaos of my mile high in-trays.  One of the files we create is Do It In 2016. The things that don't have to be done before Christmas. I put a note in there to myself - Don't worry about Robin's diagnosis. It's out of my hands anyway.

One of the things that goes on the Do Before Christmas list is  buy new house phones.  Both handsets die in the middle of a crucial conversation to our financial advisor about what we are going to live on next year. Thank goodness for the iPhone and the non-hands free phone in the study.

This afternoon the Speech and Language Therapist comes to assess Robin's swallowing. She looks inside his mouth, puts her fingers against his throat while he eats a biscuit, drinks out of a glass. She suggests he doesn't drink with a straw which he's started to do as it's hard for him to lift a cup to his lips without it spilling. She advises half filled cups and taking small sips.

She says there is some irregularity or imbalance with his swallowing.  And to keep a coughing-while-eating diary because if small amounts of food get in the lungs it can cause chest infection. 

I say I've noticed a change in his speech, not finishing words, slurring a bit. She says he sounds normal to her but she'll let the neurologist know her findings. Which could bring us closer to a diagnosis.

This evening I write my first Christmas card. I'm not sending many -  just to the aunties who don't have emails. It all feels unreal  - Christmas spiralling out of control around me - my usual preparations gone haywire.

 For the first time ever I haven't made a Christmas cake. Not the rich dark one, solid with fruits and nuts, wrapped in foil and fed with brandy every week. I will make a lighter version though  - on Christmas eve -  as I won't be hanging the cards or decorating the mantlepieces with ivy and yew. Keeping it simple this year.

Monday, 14 December 2015

A Boulder Lodged...

Sunday afternoon, driving the high road between Sidmouth and Exmouth, I pull over on the side of the road, get out of the car with my camera to take photos of the sun streaking through a gap in the clouds like an angel's fan.

 Behind me in the car Classic FM is playing on the radio. I can hear Robin singing 'Poo Bum Willy' to the tune of a Christmas carol  - Deck The Halls with Boughs of Holly. He recognises the tune but the words mean nothing to him.

It isn't his singing that's distracting me though. It's a boulder lodged in my solar plexus. Been there for 2 days and 2 nights. Ever since I read about Motor Neurone Disease. How nearly all Robin's recent symptoms match the description. Even without the results of the MRI scan it's glaring at me in the face now.

But I keep turning my head, paralysed by what it could mean.  A different life on the horizon hurtling towards us. I wish it could be ushered in with the trust of angel wings instead of the fear of breathing apparatus and hand rails in the house.

Friday, 11 December 2015

All Is Well

Sunrise, minute by minute, on our last morning in Portugal before we caught the plane home. It was a heart stopping moment when the round pink ball suddenly rose up from the sea  - a radiant greeting,

  Hello, here I am, all is well again today.

Thursday, 10 December 2015

IPhone And Growing Me

Portugal sunset.

No crying today.  No time. Lovely Christmas coffee with three dear friends. And a huge slab of Chocolate Banana Curd Cake.  In the market I fill my basket with a round crown prince squash,  leeks, beetroot, curly kale and eggs.

 Then I buy an iPhone which takes 2 hours. Wonderful helpful service from young woman in  Carphone Wharehouse. I'm offered a box of Roses chocolates to dip into while she explains contracts and deals. Very excited to join the world of Smart. But all thumbs on the tiny keyboard at the moment ....will need a stylus.

Arrive home, traffic frazzled, just in time for dear OT friend to visit with Nork. He also looks around the bathroom and shower - suggests hand rails, a bath lift, a shower seat. For a time maybe not too far in the future.

No time for lunch. Drive through more heavy traffic, drizzling rain and fading light to pick up Robin from The Mede. He says his day at the museum wasn't too bad.

I make a plate of prawn salad supper for him and boil an egg and purple sprouting broccoli and the last of the roasted cherry tomatoes for me.

Before I leave for my Deeksha meditation group I catch up with emails and a loving, encouraging  message left on the answer phone. I feel so supported, so welcomed, so blessed by all these big kind hearts in my life.....reaching out, loving me, growing me.

Wednesday, 9 December 2015

More Than Enough Happiness

I wake with puffy eyes - crying in the night.
 And puffy ankles - too much toast and butter.

More silent crying while I do yoga poses on soft folded up Indian throw, listening  to Matt Kahn's "I love you" mantras.

The tears come all by themselves while lovely family constellation councellor gently leads me in a guided visualisation. At the end of it my Angel and I take my terrified little girl in golden arms and soothe her till she feels safe, unburdened and trusting..... and ready to go out to play.

 Before I leave I receive sweet gifts  -  tiny mince pies, hand crafted chocolates, bonbons.....and big warm hugs from an unexpected chance meeting of two friends.

At home I fill the cavities of pitted Mejoul dates with spoonfuls of almond butter, lay a knobbly roasted walnut on top and swirl them in melted dark chocolate, leave them in the fridge. Ready to pack into little Christmas boxes for presents.

 A  friend, who is an OT, rings and offers to come round tomorrow with a Nork,  which is a cross between a knife and fork to help Robin cut up his food. I'm doing it for him now. He suggests I get the  NHS Re-ablement team to come and assess Robin. Fortunately I asked our GP to do that last week.  Nothing so far.
I also ring Social Care and leave a message about re-assessing Robin's needs.  No reply so far.

It feels like a new minefield I'm entering now - searching for help for a wobbly body not just a wobbly mind.

I repair my mascara streaked face and head off for lovely tea and sympathy with two friends.

Driving home in the dusk I have this thought about happiness. I was happy in Portugal under wide blue skies, beach combing to the sound of the waves, in the company of my sisters, no responsibilities, care-free, soul nourished. 

But I have this other, not on holiday, life. If my happiness depends on perfect blue sky circumstances how can I ever be happy under bleak grey English skies caring for my wobbly husband?

On some deep but theoretical level, I know that it's possible to be free inside a prison of my own making. But maybe reaching for happiness despite rubbish circumstances is a goal too high for me at the moment.

Maybe for now, just biting into a homemade chocolate,  feeling the soft comfort of a hug, getting my husband to have a shower,  touched by the caring voice of a friend on the phone, is enough.

 More than enough happiness for one day -  whatever the colour of the sky.