Tuesday, May 29, 2012

Keep Calm

"Keep Calm and Carry On" has come along way since 1939 when the Ministry of Information launched posters as a way of boosting moral after the outbreak of the war.  The original Keep Calm poster, the last of three, was never released and seen by the public; it remained unseen until nearly 60 years after the end of the war.  The first poster was discovered at a bookshop in Alnwick - Barter Books- which, if you have never been, should definitely be on your "to visit" list - and has now reached iconic status worldwide.  However, and I will be so bold to admit, I think that it has been bastardised too widely and too often, but on this occasion I will put aside my prejudices and share my "Keep Calm" poster, only to then be rather pedantic...

SMA is the disease that my daughter has.  SMA is a neuromuscular disease that kills more children than any other genetic disease.  1 in 4o of us unknowingly carry the gene; this gene is passed from parents to their children, but SMA can only affect a child if both parents carry a defective gene.  Call me pedantic but we can not "cure" our genes, they are who we are, they determine the colour of our eyes and hair, whether we can roll our tongue or not, whether or not we will be a carrier of SMA or be affected by the disease.  We can, hopefully - one day - however, treat SMA, especially as Scottish research shows that that it is possible to reverse the muscle damage seen in SMA.  So we can look towards gene therapy and medication, and may well be able to improve life expectancy and partially relief the symptoms of SMA, but we cannot cure SMA. 

A treatment for SMA may become a reality, this might not be within Eilidh's lifetime,  but I am hopeful for others affected by this neuromuscular condition.  On Thursday I am attending  a Research Evening with the Muscular Dystrophy Campaign and hope to find out more about the advances in research which will hopefully change lives of children and adults in the future.

Monday, May 28, 2012

Today! The Mental Health Carnival

"After all this has passed I still will remain. 

After I've cried my last, 

There'll be beauty from pain."


(But thank you to beautyfrompainblog for the inspiration 

and sorry for "borrowing it..)

Do you know that 1 in 4 of us will experience mental illness in any given year: that's 25% of the UK population, so why, oh why! does such a stigma exist?  Carol from Dance without Sleeping is trying to spread awareness of mental illness, encouraging us to speak openly about our experiences, sharing our stories with those who are oblivious to the plight of those living with mental illness.  As I said previously in my call for posts "Mental illness is common, we are not alone, but we need to speak out, not just for ourselves but for those who will follow in our footsteps.  We need to remind ourselves – and others, too - that hope and help exists."  Today's Carnival is part of a bigger Mental Health Carnival hosted monthly by other bloggers to help spread awareness, I hope that this round up of great posts helps. 

Susan is a wearer of many hats and a mighty fine writer ; in writing her post "My Journey So Far" about post-natal depression, she took a huge step forward in sharing something so raw and personal but she knew that it was with the purpose of spreading awareness, hoping that she might be able to help someone else in a similar position.  In reading her post, I was struck by her honesty:  "I knew something was wrong but it took me a while to admit it" - as I see it, admitting that there is a problem isn't that easy; you need to know that there is a problem in the first place, you need an element of insight which is more often than not lacking in those with mental health problems.  Susan was fortunate to realise that something was wrong, "I felt like the world was bearing down on me. I didn’t feel like I was bonding with my baby. I felt I wasn’t me" and she asked for help which is very brave indeed.  Susan moved forward, happier days were forecast and acceptance part of her healing "I’m just me and this is who I am. I have a past, a present and a future."  

Claire is a mummy of three and her eldest has Aspergers hence the title of her blog A Boy with Aspergers.  Claire has also another mighty fine writer and an absolute inspiration.  She is a woman after my own heart, writing openly and honestly about life with a child with special needs, choosing her attitude to her "normal".  In her post "I don't feel like me anymore"  she demonstrates insight - "I’ve been one before and I don’t want to go there again.  But the signs are all there, not answering the telephone when it rings, lying on the floor when the door bell rings, crying over jeremy kyle when I’m normally peeing my pants laughing at that show." and she knows herself - she knows that medication isn't the answer this time, but instead a bit of "me time" - "I’ll stay at the hotel du vin, relax in a roll top bath, eat chocolate till I’m sick and watch soppy movies in a large king size bed!".  Sometimes it's the simplest of pleasures that can lift our mood; what lifts your mood?

Julie-Ann aka supermummy submitted a post "Where does it hurt?" on her experience of living with a mum with depression.  It's a very open post, from the perspective of a teenager caught up in her own world, exploring the regret that she feels now at not understanding her mum's mental illness.  "I couldn't understand what she was frightened of, what rendered her unable to face not the world, but her friends and family who loved her dearly. I couldn't understand what she was unable to cope with."   I don't know if we can ever really understand what someone with a mental illness is going through or feeling, but we can be there to support them and love them.    I think that the take home message from her post is this "Back then I vowed never to allow such a ravaging illness to take over my life. There goes my naivety all over again. I may not have a choice. There is no blueprint for who is susceptible".  "There is no blueprint for who is susceptible"; 1 in 4 of us will be affected this year - it could be you...

A new blog to me - and I'm glad to have been introduced to the fine fellow Scottish blogger Amanda - is  the beautyfrompainblog.  Her honest blog is written with the hope of being able to help: "I realised a while back that I could focus on making good things come out of what I had been through. That it will perhaps make it all worthwhile then. That it all perhaps happened for a reason, and that reason was so that others can benefit from them. I can make that the reason."  From the deepest of depression and suicide attempts she chooses to spread awareness and this last week she has done so with the purpose of  celebrating those 1 in 4  of us who suffer from mental illness - "To all those who live with mental health problems, I want to make you aware of how pretty damn awesome you are!"  And she is so right, we often undervalue ourselves: often with poor esteem and confidence, we don't realise that we are enough, just as we are we deserve to be praised.  Please go and read this blog, join her on the rollercoaster of living with depression, aiming for more ticks and good days and enjoy one of my favourite songs ever...  

Do you think that it's ok not to be ok?  Do you think that it's ok to admit defeat?  Definitely!  It's just about learning that that is the case; that asking for help is a sign of strength rather than weakness...  Since starting blogging, I 've had the pleasure of "meeting" some rather awesome women; these inspirational ladies have been there through some highs and lows of life, offering support and, at times, a life line.  Katie is one of these women and a lady I hope to meet one day.  She writes with great strength and has quite a poetic flare, sharing her story of life with a gene team superhero and a ginger cat - I cannot recommend this blog to you enough - please do go and have a read!  In her post "What is Brave?" she explores bravery in the context of living with a child with special needs - I am sure that people will often say that she is brave, but I get the feeling that that's not quite how she feels in reality.  "Is brave simply accepting your hand and plodding on, putting one foot in front of the other smiling and nodding in the right places knowing that by just keeping going helps keep your monsters locked in your chest?".  It's ok not to be ok...

And now to another Claire - this one is an OT with an interest in Mental Health and Social Media and how the two can interact leading to an improvement in wellness and health.  A line in her profile grabbed my attention, "I believe that we all hold the potential for Recovery- let's grow together.", reiterating to me that we can help ourselves and others by destigmatising mental illness. In Claire's post  she asks what a "recovery hub" - a place or resource to go to for support and help - might look like and there are some great replies.  Have you ever thought about what might have helped you towards recovery?  What resources were available to you?  How would you change the "service" received by those living with mental illness?

The stigma of mental illness is discussed here by Mark Brown the editor of One in Four Magazine"I think that probably the strongest way to dispel stigma is to be a person with mental health difficulties just getting on with being a person doing stuff. I think that when you are what you find is that the world isn’t divided into stigmatising people and non-stigmatising people or stigmatising institutions and non-stigmatising institutions. What you see is certain stigmatising ideas that need to be countered, certain prejudiced institutions or discriminatory ideas that can be changed and certain situations, people or things that carry a prejudiced message or discriminatory message or a prejudiced or discriminatory understanding."  So, in summary, just be you, be open, share your story and end the stigma...

And to finish today, it's back to the lovely, red-lipstick wearing Carol from Dance Without Sleeping;  she took one of my prompts and posted on the song that got her through her dark time: "I use music to help me through the tough times, I like having something to escape into and find that music helps sooth my soul. I often find it hard to explain how I am feeling, especially while I am inside the darkness."  Words, whether in the form of lyrics or poems or quotes have the power to let us know that we are not alone; that someone, somewhere has felt the same and survived; that there is hope; that there is inspiration to be had; that we can survive and just be.  I love her choice of song, what would yours be?

And if you are still here, my story can be found here.  

And now, the Carnival is over and in true Olympic Torch relay manner, I pass the torch onto Mrs Teepot who is holding the next Carnival on 25th June.

Guest Post - Where does it hurt?

Here is a heartfelt post submitted by supermummy for May's Mental Heath Carnival to be hosted today here at Touch & Tickle...

"Depression. Manic Depression. Bi-Polar Disorder. Anxiety. Paranoia. Not words that colour your average teenagers vocabulary (though as naive as I am, I do suspect the teenage sufferer stats are higher than I'd imagine.) But as a teenager, concerned only with new clothes, underage clubbing and snogging the face off my boyfriend at the bus stop, it’s fair to say I had little time for my mother’s ill health. And for that, I feel regret.

The glaring absence of a large plaster cast that screamed 'Look, I'm broken and hurt' didn't help with the understanding that my mum was suffering from a horrible and extremely debilitating illness which had taken over her whole life. It was her life.

It wasn't uncommon at all for my mum to be in bed all day. Hidden away from the world, the fug of the horrible darkness she now describes enveloping her and smothering her whilst the world carried on as normal on the other side of the door.

My coping strategy was to make like an ostrich and bury my head firmly in the sand. If I didn't think about it, or dwell on it, then it wasn't really happening. Depression wasn't ruling her life - our lives. For the most part, this strategy worked, mum didn't have any outward emotion other than indifference and on occasion what seemed to me to be extreme sadness, and she certainly didn't pick me up for not caring. At other times, an intense madness, a rage would bubble up inside me and spill over into a tirade of fury which led to me screaming and questioning her as she cowered in the corner looking like a lost little girl. I couldn't understand what she had to be sad about when the world around us, that we were untouched by, was cruel and horrid. Famine, war, poverty, death, abuse, violence. I couldn't understand what she was frightened of, what rendered her unable to face not the world, but her friends and family who loved her dearly. I couldn't understand what she was unable to cope with.

What I did know for sure was I hated this wretched illness and what it did to her, to us as a family. It shaped how I feel now as an adult with my own children. I now know and fully understand that mental ill health is every bit as challenging than physical ill health, and I know the impact it can have on families. My mum lost friends, people who struggled to understand that she wasn't choosing to suffer from this damning illness, despite it overtaking everything good in her life. Perhaps they felt they'd simply tried too often to get their friend back, the one with the spark, the wicked sense of humour and the most caring, giving and gentle side. Perhaps, like me, they didn't know how to support, how to be with her and how to feel themselves. I was moved recently by a friend who wrote about their own experiences with mental ill health but it brought to the surface all those emotions I tried so hard to bury deeply 15 years ago.

Back then I vowed never to allow such a ravaging illness to take over my life. There goes my naivety all over again. I may not have a choice. There is no blueprint for who is susceptible. But today I surround myself with positivity and I choose a thankful and grateful attitude every single day. I’ve said before, our family motto is 'we can do anything we try.' Simply because it's the polar opposite of 'I can't.'

After a seriously long spell of illness which didn't dissipate as previous episodes had, some extremely dark and bleak moments within that time which thankfully had positive outcomes, and a risky and unpleasant treatment, we now have Mum back. My Dad has been there with her every step of the way, through those bleakest and darkest of times. Rightly or wrongly I've put my Dad up on a pedestal for that. It’s bold to say, but I don't think my husband would stand by me as he did her. To see the pair of them now, enjoying the things in life that previously were simply too frightening to embark upon is wonderful, and I'm talking little things here, meals out, walks along the pier on holidays.

She is adored by her grandchildren, she has fun with them, and they know nothing of the lost days with them when they were tiny and even the miracle and wonder of their arrival couldn't break through the barrier of despair.

A little part of me is still a tiny bit scratched. But a bigger part of me is joyful; glad that for the last two years at least, the darkness and emptiness has lifted."

Wednesday, May 23, 2012

Dear Mr VW

wednesday 15th may:
a rant

Dear Mr VW 

I hear this morning that there is a trade surplus of cars in the UK at the moment, that the UK is a great place to be for car manufacturers; Vince has underlined that the UK "is a good business environment for the motor industry"…  If this is true, and I do believe that it is,  perhaps you should consider moving your production plants here? 

Why?  So that you can make a difference to the life of my family. 

It all started with an act of God - an earthquake and a terrifying tsunami. People lost their lives, their families and their worldly possessions in the devastation that hit Japan. Only in the months that followed did the world realise that Japan is the largest source of electronics and white goods… and gearboxes. The manufacturing and distribution of key components to the rest of the world was to be severely affected the extent of the problem only gradually unfolding and the effects are still being felt. I never expected the effects to reach our family, all be it in a minor way in comparison to those directly affected, but it has...

Our own personal tsunami of heartbreak hit just under 2 years ago – ten months before the natural disaster in Japan - when my then 16 month old daughter was diagnosed with a neuromuscular condition called spinal muscular atrophy which affects all of the muscles of the body; despite being bright and independent and very, very funny, my daughter cannot walk and uses a powerchair. Her powerchair has allowed her such a level of independence. But her powerchair needs to be transported to places near and far, to museums and parks, to the houses of family and friends and to do this safely and easily we decided to use Eilidh’s DLA “getting around” money, through Motability, to purchase a WAV (wheelchair accessible vehicle). After much deliberation and cogitation and many a test drive (with lots of questions asked) we decided that a VW Caravelle was the right vehicle for us and so we ordered a black – soon to be pimped A-team style! – Caravelle before Christmas of 2011. On placing our order we knew that it would be some wait expecting up to 6 months at the longest but we were prepared to do so because we strongly believed that this was the right vehicle for our family. We understood that there was a delay on gearboxes, but a production date in April with a delivery in June seemed to be ok. 

This week our Caravelle still doesn’t have a production date. Demand has exceeded production – even in these times of austerity – and employees of your company cannot tell us when our WAV will be produced, that even with a production date it could still take 16 weeks, and that is before it takes to the road to travel to the UK, before it is adapted for Snappy and before it is brought to Glasgow. This delay might not mean much to you but it means so much to us. Snappy stays home sometimes, not able to travel with us on adventures. Our bodies struggle as we manoeuvre Snappy into the car, as we try to lift Eilidh in and out of her car seat. Snappy sits unrestrained in our boot, all 120kg of her: definitely life affirming for Eilidh but deadly in a crash. Eilidh sits poorly supported in her current car seat; it’s been recommended that we change her car seat only when our WAV arrives so that we buy the best seat for Eilidh. 

So, Mr VW, I know that Japan was devastated by a natural disaster of huge magnitude; I know that demand has exceed production; I know You have a Beetle problem in Mexico with delays in production at the plant because of a “large number of orders”, causing delays in supplying UK customers; but what I know that is real to me, is that our family is losing out because of our WAV is delayed.  Perhaps if you produced your cars in the UK, we would have our Caravelle now and we would be off exploring this beautiful world with my family, but perhaps it wouldn't make a difference at all...



Sunday, May 20, 2012

May I Introduce...

May I introduce to you...

drum roll please...

miss flopsy doodle-dandy and  miss bella bear !

who are infamous to say the least, 
each with their own twin, 
and very much loved and cuddled members of our family...

More than 1 in 3 of us still sleeps with a soft toy as we cuddle down to sleep at night.  I'm not ashamed to admit that I sleep with these adorable and beautiful duo and have done now for two years.  Flopsy doodle-dandy came into our bed two years ago tonight; I brought her in with the hope the I would find comfort, security and a sense of peace. Flopsy, I hoped, was to be my saviour as I reached new depths of despair.  Now, just like my children who sleep  with their own original Flopsy and Bella too, I seek the softness of their bodies as I find my peaceful slumber, as I turn in bed I reach for them - I find some peace with them close by.

Two years ago today we found out that our future was about to change; we didn't know the details, we didn't have a diagnosis, but all was not as we hoped for Eilidh.  We were to have a week without answers, a week of darkness and despair, and all we had to hold on to was each other and flopsy doodle-dandy and bella bear too.

Friday, May 18, 2012

May's Mental Health Carnival

1 in 4 of us will experience some form of mental illness within the course of a year.      If we are lucky and don’t experience it personally, we will know friends and family who do.  For those who experience mental illness, it is somewhat demystified but not entirely so – it’s difficult to truly understand what it feels like to be so low that you cannot find enjoyment in your day to day, what it feels like to experience anxiety that imprisons us in our own house, what it feels like to compulsively and repeatedly wash our hands, what it feels like to want to binge and binge on chocolate only to, shortly after, rid ourselves of the calories consumed.  We cannot truly understand unless we have lived through it and we cannot move on without a relative degree of insight and support

Mental illness is a common problem and it warrants no stigma, but the stigma does exist.  Slowly but surely mental illness is being demystified by people coming out and talking about their experiences.  If the public cannot put themselves in the shoes of someone with mental illness then we have to help them try the shoes on so to speak and share our experiences. We need to speak out and tell people how we are feeling (and it can be so very difficult to put it into words…), we need to share our story – yes, even the darkest of moments!  If people don’t know how we are feeling then they can’t help us - pure and simple.  Our family and friends, and the public as a whole, aren’t mind-readers; we need to let them in.  We need to get the support that we need and ask for help – because we are so very worthy and deserving of it (even though we may not be in a place to think that way).  And that is why the Mental Health Carnivals are so important – Carol from Dance without Sleeping launched these for us to share experiences and to spread awareness of mental illness.  Mental illness is common, we are not alone, but we need to speak out, not just for ourselves but for those who will follow in our footsteps.  We need to remind ourselves – and others, too - that hope and help exists.

I thought that I would include some suggestions for those who are struggling with ideas on what to write or want to approach your writing about mental illness from a different angle:

What would you tell your 18yr old self about mental illness?
What advice would you give to a friend newly diagnosed with a mental illness?
Do you have a mantra/quote/song that got you through a dark time?
Do you have a favourite self help book?  Why would you recommend it?
Do you have a simple activity that consistently helps your mental health?
Is there one person who helped you more than anyone else? What did they do that helped?
Insight is a wonderful thing: when did you gain insight into your mental illness?

So if you would like to contribute to this month’s carnival please do get in touch with a link to your post or, if you wish to post anonymously, the original post you would like included.  My email address is sheonad@hotmail.com . The closing date is Friday 24th May.  I really do hope that you can link in; I’m really looking forward to reading your contributions and to hosting the carnival and helping to spread awareness of mental illness.

Wednesday, May 16, 2012

The Current Season

my blog - my therapy, my indulgence -  may well have been quiet but I have embraced and enjoyed the time away, hoping that my writing mojo will return but not forcing myself upon it; wishing for clarity to think amidst the noise of family life; enjoying the written word of others instead and celebrating the peace i find within their stories.

when i started this blog i started to feel free; i need to remember that sense of freedom and embrace it, returning to write with the knowledge that this is my story written in my own time, with no deadlines or expectations - this is my current season and i intend to enjoy it.

brunch with darling

what does it feel like to be me?
when i started this blog, 
i started to feel

Tuesday, May 15, 2012


I can't find anything anywhere!

Our house is a mess,

A pig sty!

I'm needing saved;

I'm drowning in clutter!

And you wonder why I'm not blogging?



Post 500! 

A post to be celebrated... 

I have "deliberated, cogitated and digested" over what to write for this monumental (?) post and then, in a blinding flash, this came to me - it couldn't be any more appropriate, could it?

"But I would walk 500 miles

And I would walk 500 more
Just to be the (wo)man who walked 1000 miles
To fall down at your door"

And I would; I would walk 1000 miles over and over again to be living my day-to-day with my family and life with Touch & Tickle.  So here's to a grateful life and the next 500 posts...


Wednesday, May 02, 2012

Nature Heals

“Everybody needs beauty as well as bread, places to play in and pray in where nature may heal and cheer and give strength to the body and soul.” 
John Muir

We were all in need of an escape on Sunday. Fresh air, a nip to the breeze and nature in it's finest.  We danced and frolicked and chased and laughed.  And in the quiet moments I drew delight in all that surrounded me, from the smallest bud to the most colourful tree, returning home refreshed and ready to tackle the day.  I so often forget the power of fresh air and open spaces; I forget that I am a country girl at heart - nature nurtures my soul.

Tuesday, May 01, 2012

one little post

bridgett edwards

"just one little post"
i tell myself.
i sit down
in a room
full of clutter,
amidst the chaos
of our build,
my fingers
the keys.
I tell myself
over and over
"just start typing;
words will come,
a story will follow"
but words fail me.
i feel a little lost
within my blog:
surrounded by
but somewhat
to it too.
I have lost
my voice:
my blog,