My Adventures in my Lockdown Journey

Upon that fatal speech seven weeks ago, we all freefalled into a perpetual state of battening down the hatches and preparing for an unseen war.  Our first thoughts were to food, cupboard essentials, and toiletries – things such as toilet rolls became rarer than gold and rubies.  And, as Him and I work full time, all such essentials were cleared from the shelves whilst  was brave ring away at the chalk face and he was moving furniture.  Therefore, paying £2.50 for a bag of artisan penne pasta, and £3.00 for a bag of ‘wild rice’ was apparently very expensive.  ‘You don’t do the food shopping and have no idea about how much things costs’ argued Him ‘And you shop in M and S and that should not be used as a guide’.  Anyway, I do know that we reached a point where it was even difficult to buy the basics for egg/beans/tomatoes on toast – no matter the cost.  A man nearly killed me with his death stare when I bought the last chicken in the butchers.

And then the panic was over.

All was quiet and all was still.  And that’s when a new lockdown world opened up.  Ingenious ways to communicate became the norm.  So whilst we all ate very expensive pasta dishes and ate our chicken dinners guiltily, Zoom workouts and WhatsApp parties became en vogue.  We all started to plan, dress and do our hair and make up to a ‘digitally ordained social life’.

Instead of having to be at a class, at work, or at a place for a certain time, I have found myself planning to be available for a ‘live lesson’, ‘live cook’ or a ‘live art club’, at the appointed time.  And when that’s not enough, my social life extends to Thursdays, just before eight, when we shout neighbourly pleasantries and concern from house to house, before clapping for carers at eight.

But I must admit, it all gets too much.  And I don’t want to be a mood breaker with all the awful news we keep hearing.  However, these last couple of weeks have been tough.  Also, the feeling of Groundhog Day grinding us down doesn’t help.  With this endless boredom and without (whatever is said on Sunday), an end in sight.  What do we do?

Some say it’s the perfect time to learn something new.  TikTok seems to be a popular way to pass the time – if you like a dance! Along with (judging by the empty shelves Him tells me about in the supermarket) baking.  It’s like the whole bloody world has gone banana bread mad!  Maybe you’re learning a new language?  A new skill?  And if you’re not, are you getting through the to do list like us?

Him, being furloughed, is certainly getting all the jobs done! All the ones I can find him!  Painting, gardening, cleaning (is it that day again, he asks?) seem to fill our days between my work and home schooling.

However, it’s important that explain my next thought.  As I’m in the position I am, with sight-loss and always on the look out for new experiences and making memories, it’s important to me that 2020 isn’t a write off.  This year needs to count and like all years in my precarious world, has to be a time for new adventures.  Not all safely…

Firstly, we are so lucky living next to the sea.  Secondly, RosieDog is even luckier as she gets to go out every day on the beach and run wild.  The fact that we are bored means we have begun to vary our walk.  All for a little of something different.  All good, although every walk is an adventure when you live with nutters like me…Then this week the R Dog and I nearly become stranded between home and the dunes.  A dead seal, an incoming tide and a wet dog later and we were free!

Then the biggie: Another new adventure is me having the actual time to write.  My life and job mean I have limited time to write.  My illness last year meant to didn’t have the energy.  However, with a renewed vim and vigour, I’m now able to knock out a few words quite quickly (why get they’re any good…) The upshot of this is that I’m very excited that I’m making progress on something I’ve longed to do for a number of years.  20,000 words in and I’m feeling good about it and myself.  Whether it’s shite, well that’s another story and one I’ll soon find out about!  But it’s all part of my journey.

Lockdown hasn’t been easy.  I’m not going to lie.  However, I’ve been determined to continue my upwards journey of better mental health.  And although some days (and nights) I’ve felt like it’s all going to fall apart.  And some days that the weight of the world is on my chest, new adventures and experiences have stopped me from veering too much from my path.

I hope you’re all staying safe and well.  Make room for your adventures: anything is possible xxxx

New Adventures on a Lockdown Journey

Upon that fatal speech seven weeks ago, we all freefalled into a perpetual state of battening down the hatches and preparing for an unseen war.  Our first thoughts were to food, cupboard essentials, and toiletries – things such as toilet rolls became rarer than gold and rubies.  And, as Him and I work full time, all such essentials were cleared from the shelves whilst  was brave ring away at the chalk face and he was moving furniture.  Therefore, paying £2.50 for a bag of artisan penne pasta, and £3.00 for a bag of ‘wild rice’ was apparently very expensive.  ‘You don’t do the food shopping and have no idea about how much things costs’ argued Him ‘And you shop in M and S and that should not be used as a guide’.  Anyway, I do know that we reached a point where it was even difficult to buy the basics for egg/beans/tomatoes on toast – no matter the cost.  A man nearly killed me with his death stare when I bought the last chicken in the butchers.

And then the panic was over.

All was quiet and all was still.  And that’s when a new lockdown world opened up.  Ingenious ways to communicate became the norm.  So whilst we all ate very expensive pasta dishes and ate our chicken dinners guiltily, Zoom workouts and WhatsApp parties became en vogue.  We all started to plan, dress and do our hair and make up to a ‘digitally ordained social life’.

Instead of having to be at a class, at work, or at a place for a certain time, I have found myself planning to be available for a ‘live lesson’, ‘live cook’ or a ‘live art club’, at the appointed time.  And when that’s not enough, my social life extends to Thursdays, just before eight, when we shout neighbourly pleasantries and concern from house to house, before clapping for carers at eight.

But I must admit, it all gets too much.  And I don’t want to be a mood breaker with all the awful news we keep hearing.  However, these last couple of weeks have been tough.  Also, the feeling of Groundhog Day grinding us down doesn’t help.  With this endless boredom and without (whatever is said on Sunday), an end in sight.  What do we do?

Some say it’s the perfect time to learn something new.  TikTok seems to be a popular way to pass the time – if you like a dance! Along with (judging by the empty shelves Him tells me about in the supermarket) baking.  It’s like the whole bloody world has gone banana bread mad!  Maybe you’re learning a new language?  A new skill?  And if you’re not, are you getting through the to do list like us?

Him, being furloughed, is certainly getting all the jobs done! All the ones I can find him!  Painting, gardening, cleaning (is it that day again, he asks?) seem to fill our days between my work and home schooling.

However, it’s important that explain my next thought.  As I’m in the position I am, with sight-loss and always on the look out for new experiences and making memories, it’s important to me that 2020 isn’t a write off.  This year needs to count and like all years in my precarious world, has to be a time for new adventures.  Not all safely…

Firstly, we are so lucky living next to the sea.  Secondly, RosieDog is even luckier as she gets to go out every day on the beach and run wild.  The fact that we are bored means we have begun to vary our walk.  All for a little of something different.  All good, although every walk is an adventure when you live with nutters like me…Then this week the R Dog and I nearly become stranded between home and the dunes.  A dead seal, an incoming tide and a wet dog later and we were free!

Then the biggie: Another new adventure is me having the actual time to write.  My life and job mean I have limited time to write.  My illness last year meant to didn’t have the energy.  However, with a renewed vim and vigour, I’m now able to knock out a few words quite quickly (why get they’re any good…) The upshot of this is that I’m very excited that I’m making progress on something I’ve longed to do for a number of years.  20,000 words in and I’m feeling good about it and myself.  Whether it’s shite, well that’s another story and one I’ll soon find out about!  But it’s all part of my journey.

Lockdown hasn’t been easy.  I’m not going to lie.  However, I’ve been determined to continue my upwards journey of better mental health.  And although some days (and nights) I’ve felt like it’s all going to fall apart.  And some days that the weight of the world is on my chest, new adventures and experiences have stopped me from veering too much from my path.

I hope you’re all staying safe and well.  Make room for your adventures: anything is possible xxxx

So How Ya Doing?

It’s what, three weeks in?  And that long holiday we all used to dream of; when work became tiring (all the time), when the world spun too fast (dizzy, I want to get off), and when you could ‘just do with some extra days at home’ to get stuff done – well it’s here!

So, how ya doing?

I suppose it depends on your situation.  However, I do imagine, whoever you are, your emotions will be spinning up and down like a yo-yo.  And that’s alright.  No judgement.  We are just not designed to live such compartmented lives.  Be it you prefer your own company, or that surrounded by others.  You still aren’t allowed to do what you want to do.

First world problems…or are you winning at lockdown?

Where do you stand at this current moment?

Three weeks in and I’m loving the fact I can exercise every day.  I’m loving the beach as my place to run/walk.  I can just keep going, relax into my run as I’ve not to be back for something or other…I’m doing at least three online classes with my wonderful fitness instructors.  And if we are praising people, deserve a massive cheer for these sessions designed to help ‘mind and body’ in these difficult times.  Such a boost.  And so lovely to roll onto the sofa after a relaxing Pilates class (with a celebratory glass of wine).

Have you been cleaning?  My house looks like a shiny new pin.  Cupboards have been cleansed, rooms blitzed and DIY projects renewed.   As for the garden, well…it’s looking Monty Don ready!  We’ve spent days on it.  What with all the glorious weather, it’s our outside room.  See, I’m winning at this!

To my family’s happiness, I’m cooking every day.  I’m learning new recipes via Instagram (I’m losing masses of time on this ‘socialising’).  There’s no ‘freezer surprise’ days and no awful takeaways.  To be honest, I love my food and hate ‘shite teas’, so having more time means I’m able to explore…(tonight I’ve made some special hallumi bites).  And those of you who know me, know I love to cook a big feast, but with these long days in front of us, I’ve been making more and more elaborate and healthy dishes to ‘eat ourselves healthy’ (Im wondering whether to start cooking LIVE myself?).  However, as the days pass, I’m missing cooking for my wider family and friends.  Such fun times…

And in amongst all this exercise, house activity (my friend says we are going to ‘have the most beautiful homes’ after this) and food, I’ve not mentioned the family time, online karaoke, quizzing and dancing which seems to occur at such a rate it’s like I’m at a really busy weekend at Butlins.  Who needs a holiday this year?  Such fun, such solidarity.

But here comes the other bit.  The feelings and emotions which plague every time we put on the news…

You see, I’m exercising to realease the anxiety.  To have to battle recovery through lockdown, feels like someone’s idea of a joke – not funny! Although, I know this is not about me, I am also aware that the darkness can close in at times like this.  Uncertainty, being afraid and a lack of structure…well where do we go?  So, running, stretching, weights, whatever my poison of the day, I just roll with it.  Taking the edge off…

And then it’s back into the fray.  Wherever you turn it’s three ‘Covid-19’, something, which twelve months ago could have been a brand of cough syrup or cigarettes.  If only.  Instead, we are in fear of something we can’t touch, see, or hear.

Such anxiety creates a dip in your ‘jolly red-coat’ mood.  Day 17:  There’s more bad news, and you’re on your third cry of the day (not self pity – fear, sadness, worry, anxiety – FFS).  Cognitive behaviour, done (worst case scenario/best case…), mediation, done, writing lists – well there’s one for you…

Lists, things to do, things to achieve:

Booked your summer holiday? – errr

Weekly shop online – not possible so I’m currently paying extra to shop or M & S as I’m allowed in, can see where I’m going, and not getting scowled at as I don’t quite see the distancing in the queue (it’s scary for me too, sorry).

DIY – for this you require items which I do not have.  Head scratching has resulted in lots of recycling and ingenious ideas which shall need readjusting as soon as normal service has been resumed.

Spring cleaning – welllll, I’m running low on Zoflora

Gardening – it takes a week from email to delivery to receive your items.  I’m in a queue…

I apologise here as I said ‘first world problems’ didn’t I?  Well, actually, they are, but, they are also problems of a partially sighted lady trying to win at self isolation.

So, this week when I had a running ‘accident’ where I required help from a little Asian man in a corona mask, wasn’t my finest hour.  Me waving ‘I’m fine’.  Him coming closer in his mask.  Me panicking as he was obviously afraid, trying to get off my flat face on the floor (bloody picnic bench).  Him miming about water.  Well, not my finest hour…Not to mention STILL being in the garden centre queue, running low on stuff I’m not prepared to queue for (as I can’t see and don’t want to freak people out),  and finding endless more activities to entertain the troops…it all rather exhausting and highly emotional.

I know ‘wow’. I’m such a spoilt bitch.  I’m not on the frontline.  I’m teaching from my dining table.  I’m not risking my life every day to keep the country ticking.  I’m here, in my cute house on the beach, with Him, two girls and RosieDog.  I get to exercise on the sand.  I can sit in my garden and hear the sea.  I can FaceTime…but it’s not life is it?  Yes, I miss my family so much.  I ache to see them and give them a cuddle.  My friends, well, where do I begin?  And my teaching – such worry about my students, for a multitude of reasons.

At times like this we learn and evaluate don’t we?  I do feel so incredibly lucky.  I have love, a safe home, a renewed love for my community (who, I am not exaggerating here, give the best clap for carers – who’d have thought we’d be championing the clap? that this country has ever heard!).  Counting my blessings, feeling blessed.  But that’s where the anxiety rests, we want to protect, stay safe, save lives.

Lockdown 2020: if you’re not one of the many who are keeping the country going.  If you’re doing your own bit, however little, however small, keep going…we will fight this together.  This said, with isolation comes cabin fever (a small price to pay).

It’s an uneasy time: So how you enjoying your long impromptu holiday?  I’d say ‘swings and roundabouts’

Blue Stitches

’ve puncture marks in my neck.  Now, I could work with the advice of our spinning guru and pretend they’re from something utterly mad – like his mother’s best friend who had a scar around her neck.  She told people it was from when her head had been chopped off, when in fact it was a less dramatic thyroid scar.  But to be honest, I’m not feeling it, so instead I’m hiding my blue stitches under a polo neck for the duration.  Stitches, which occurred due to being separated from two moles I had nurtured from a very young age.  I’ve never been good at parting with things which held sentimental value – oh do you remember that time I knocked the top off one and it bled like a demon?  However, the itch meant it was time to say goodbye…with my big girl pants on (and Him holding my hand) I had a local (four needles), scissors, and then some blue cotton.  Tadah! Yet more healing to add into the general state of the fact that I’m in a perpetual state of healing generally.  The blue cotton stitches  look unsightly and I’ve got them for a fortnight, but I should have a prettier neck.  The old adage goes – no pain, no gain!  And I certainly know a lot about that.  So I’m hiding my stitches like my bruised self, which I hid for so long.

Hiding.  Over the past few years I’ve become very good at hiding injuries, scars…by taking myself out from social interactions.  So much so that when I went to a party last weekend (yes me at a party), there was no panic attack, no scurrying away in a corner, and no longing for an invisibility cloak – it was shocking times indeed.  My good friend Karl needed me, so Instead I brazened it out, put on my dancing shoes and shimmied on the dancing floor for the first time in three and a half years.  My charitable spirit served me well and if I had to dance for the good of my friend’s happiness, so be it!  And awaking on Sunday morning, I thought ‘how did that happen?’ And ‘how did I manage to find myself again?’

It took my quite a while to work out how long it had been.  Firstly, my razor sharp memory of long ago has become muddled and foggy during recent times.  Worries about early dementia, losing my actual mind even more, and (although I’m holding back the years with the quantities of face creams I layer on throughout the day) becoming old before my time, have all secretly plagued me.  Had I come to the end of my mind’s actual growth?

It was a scary thought to face.

Before I realised I was becoming ill, in between black dog days and the fear creating havoc on the peripheries of my mind, I found it was taking me longer to do anything.  I’d write a list and become weary at the thought of it.  I’d struggle to do a piece of work which had been a mere breeze in the past.  I’d forget what I was doing and would redo tasks which I couldn’t remember doing in the first place.  During the bad times it could take me hours to cook a meal.

But even then, I didn’t know what was happening to me.

About two years ago, the memory problems, the black dog days, the fear, were getting worse.  I could be in the most beautiful place in the world, living my best life and they’d be this sickness in my stomach, threatening.  Or I’d feel numb – like someone had stripped me of all emotions.  It was like my soul was broken, stolen maybe.  I felt like I didn’t belong, didn’t deserve.  Don’t get me wrong, some days were worse than others and I’d manage.  I’d run, walk, cook, write, read, garden…all those things which made me happy.  I’d push the sickness, the thoughts, the images away…And it worked for a while.  I thought I was managing, I thought I was silently healing.  But as the days and weeks passed, the darkness moved in like a blood shadow, my coping strategies lost their impact and I’d be worrying about Monday morning on a Friday night.  Not one minute was loved, savoured or embraced.  My whole nervous system was strung across a tight-rope, and I thought, and this was the scary thing, ‘I’m going to die’.  Have you ever felt like you wanted saving but didn’t know what to say? I’d wander with this cloak of fear around me and prayed somebody would see my soul and know.  It screamed ‘please notice!’, I just wanted saving.

The thing is, the brain, the human mind, is a complex thing.  The brain can do one thing, whilst the body does another.  In the thick of it, when I was heading for crisis point, I’d be doing one thing whilst my brain would be saying ‘what the hell are you doing?’  I’d freeze.  To put it another way, I’d be like watching myself through a window and not having the voice to stop my actions.  And I know it’s hard to believe, but I had no voice.  That’s when I knew I was in trouble.  I was literally losing my mind and I was hurtling towards the ground from a very high cliff edge.  I’d never been so afraid.  It was fight, flight, or as I’d done: freeze.

January 2019 hit and…

Freeze was pressed to play.  At first I flew and hid.  However, the urge to survive kicked in and with that I began to fight my demons: the sight loss, the dark days, the whole shebang!

You all know the next part.

January 2020

One year later…After the free fall and finding out that I was worth rescuing, I was  diagnosed with PTSD.  To be honest, the diagnosis brought absolute relief; that what I’d been going through was actually normal.  Over the last few weeks I’ve learnt that it’s not just a mental health issue which affects the armed forces, but something which also affects people for many other reasons.  A lifetime of unresolved trauma and grief, whilst my eye sight faded. But as they say, knowledge is power and the more I learned about it, the more I felt able to grow.

Part of PTSD is that your brain runs out of cortisone, this I turn uses up all your serotonin.  It’s like fighting a battalion with just your bare knuckles and a bit of bravado to get you through.  It’s never going end well is it?  Imagine my relief when I realised that when  I’d become so poorly that it was actually a thing.  The extreme highs and lows (even when I was high I felt sick preparing to fall.  There was no escape).  A simple chemical imbalance – if only we’d know …And I realised that just because you couldn’t see the wounds, didn’t mean they didn’t exist.  I was depleted of all chemicals.  No one could see it as it’s not like a broken leg.  No one could hear it; like a bad cough.  However, it was there destroying me like a cancer hidden away inside.  The depression, anxiety, flashbacks (my goodness they’re a charm! – especially when you’re reminded of the time you fell down the stairs and never told anyone), fractured memory (large gaps of fog), paranoia (are they all talking about me? – I’ve since been taught that not they’re not’ and ‘if they are it says more about them than me!) and panic attacks (turns out that’s what was happening), were all there.  I experienced the lot.  And the dreams, well that’s for another time…

Luckily, due to all the help I’ve received, plus the little magic pill I take daily, I’m in the recovery stage which is called ‘post traumatic growth’.  It’s like rewiring an old house and giving it a new lease of life.  The science bit says I’ve got to rebuild my cortisol – bolster the resources.  The increased serotonin helps that and I’m not ashamed to take the tablets which boost the chemical reaction.  But that’s not a forever solution, what I need is a way to rebuild my brain.  Counselling has given me closure and acceptance – I didn’t enjoy talking over shite but it certainly helped.  However, I’m now learning how to overcome through training my brain: meditation, CBT, mindfulness…I’m to enjoy the moment.  Dancing at a party.  That’s how I got there.

But this is not the end of my story.  As my brain awakens, I’m told I can begin to achieve anything my heart desires.  I find this exciting as it’s like my journey is beginning.  I thought my life was over, and I thought my soul had died.  It turns out it was hibernating and was doing what it evolved to do – to survive and heal.  Maybe I’ve blue stitches woven into my healing soul – ones you can’t actually see (just because you can’t see them doesn’t mean they don’t exist).

If you can identify with any of this, I urge you to find a way through.  Talk to anyone who will listen, don’t be afraid and certainly don’t feel like you’re alone.  I often think that if I’d have found a way to communicate this sooner or realised that I was actually ill, I might not have had to have been peeled off the floor of despair.  Mental health isn’t visible until the sufferer hits rock bottom – even then it’s not so evident.  It’s not something to be ashamed of and you can’t just ‘pull yourself together’.  Guess what? you are normal.  And if you do see another struggling, do what I’ve always urged you to do ‘be kind’.  After all, I never thought it would happen to me…

2020: The Next Chapter…

31st December 2019/1st January 2020, end of the decade, or the beginning of a new one?  Are you someone who’s looking whistfully back to where you were ten years younger? Are the past ten years full of shame and regrets? (imagine if they were!).  Or, are you someone who’s excited for a new decade, feverishly making plans for all the things you want to achieve?  Maybe you’re the opposite and you’ve such a mountain to climb that the future seems daunting…

Whatever your perspective, I think it’s important to think positively and turn the negative around.  Now before you start and tell me to pipe down with all my ‘PMA shite’ I think it’s worth considering what I have to say.  Also, just because I’m going to ramble about it and try it, doesn’t mean I’ll be successful but it does mean I’d have made an effort.  And making an effort is something I’d very much like to be remembered for in my eulogy one day.  Mrs Ramblings? She made an effort.  She always rose to the challenge.  She was a trier.

And, as I have had ‘more to deal with than most’ (my psychologists words – I know! How Hollywood am I?  ‘My shrink says…’) I have to be kinder to myself.

The Back Story:

Before Christmas, I was given the opportunity to work with a psychologist on life skills.

I had no idea what to expect.

A lovely young lady rocked up.  Warm smile, highly intelligent and enthusiastic – I realised pretty soon that I’d got lucky (Someone was definitely looking down upon me).

Upon meeting her, she diagnosed the type of depression I’ve been experiencing.  She explained that the state of my mental health is almost definitely caused by a build up of past traumas, accompanied by living with a disability (which has been shadowed by discrimination).  Basically, a catalogue of problems, which have made me the person I am today.  Living in permanent ‘fighting survivor’ mode anc putting everyone first.  Everything I do, she said, has a purpose.  I look after everyone and she told me to ‘stop!’.  I’ve got to do mindless tasks like colouring in, and making patterns in my zen garden and then messing it up.  Hmmmmmm…

The BackBack Story:

For many years I felt worthless and empty.  Friends and family came first and I was desperate to protect others.  I would fight for anyone, but myself? I’d hide from confrontation; beating myself up instead.  Scared, filled with guilt and anxious at every text, email and phone call.

I stopped answering.  I’d hide my phone.  I’d hide myself.

You see, the way I was living was unsustainable.  No one can live like that.  It’s unhealthy.  But, it wasn’t until I couldn’t actually see out of my right eye anymore, that the walls closed in and I collapsed.  I thought the world would stop turning and that I was beyond help.  After all ‘you’re a strong person’ they always told me.  How can a strong person need help? I panicked.  No one would help, they wouldn’t know how, I’m not worth it…

You know the rest.

The Point:

So, how’s this all relevant to me? you might be thinking.  Well, this is the thing, LA (that’s what we are calling the psychologist) tells me I’ve got to share. Share her teachings and help others around me.  We also discussed my writing an the journey of my life.  This made me reflect on one of my life goals and the fact we are entering a new decade.  What do I want to achieve? Well, last decade I made a list and I did pretty good to be honest (apart from being mortgage free).  It took no thinking, I like writing.  I want to be successful at it.  Maybe I’ll not be so good and it won’t work out.  Then again, maybe it will.  Whatever the outcome, surely it’s always worth perusing your dreams?  I won’t hurt anyone, and I think I need to take more risks – stop worrying about it (more LA advice).

Going Forward:

The plan is simple, for the next few weeks I’ll be sharing two things: my learning, and the working process of a book I was inspired to write on Boxing Day.

So here we go:

LA got me to do this: https://www.16personalities.com/

I got the rarest personality (rare breed me!).  Try it, it’s very insightful and interesting.  It’s especially good to do whilst making resolutions.

Chapter One to come…

Living on the Edge (of the world…)

Living on the Edge

  1. An idiom for living an unpredictable life (can have positive and negative connotations depending on the person)
  2. Someone who lives on a rocky precipice
  3. Living on the outskirts of a community
  4. Being at the end of the world

Well, for the last fortyish years, I’ve done three out of four, although we have fspent various holidays in properties on the side of mountains.  I’ve lived on the edge of a villiage and I currently live a stone’s throw from the sea (turn right and you’re there, the edge of the world).  However, the most relevant definition is the ever-changing unpredictable life which we undoubtedly all lead.

It’s easy to live on the edge when you’re sixteen.  Living an unpredictable and free life can be exciting, and with a distinct lack of responsibilities, can also empower you to take chances.  I can remember turning sixteen and feeling that my whole life was laid out in front of me.  A blank canvas ready to paint a million colours upon, and in an unruly design.  A Jackson Pollock so to speak.  Therefore, the most exciting time ensued: freedom, college, parties, new places, new experiences…living on the edge with no real plan.  I was allowed.  Like I said you’ve no responsibilities.  However, it’s never that simple is it? Living on the edge can become uncomfortable.  You HAVE to plan sometimes, and you can’t just lead some hedonistic reality which selfishly revolves around you.  Also, if you’re like me and living with (a then undiagnosed) disability, you’re tardiness (due to living on the edge), you’re perceived to be flaky and very quickly people get the wrong impression of you.  Stuff happens, you become afraid and very quickly ‘living on the edge’takes on another, more sinister meaning.

As it happens, my youthful freedom lasted a very short time compared to the last twenty odd years of slog.  A lifetime of living precariously on a cliff-edge of frustration, fear and bad luck.  I’ve had to lead a structured OCD life through the fear of failing or not being. able to cope.  Being a young mum made me aim for perfection.  No chances were taken and a hermit life seemed the best way to cope.  My wits couldn’t take it any other way.  There’s too much ground to go over, and I’m not really into dragging up old issues and scenarios.  However, I will bring you to this time last year: November 2018.

Before I got ill, as in slightly mad and in the throws of a breakdown.  Where the dark days were drawing in on me, I had this feeling of living on a knife edge.  I felt I was walking the blade and that any minute I could slip, or be pushed and that my life would be over. (Paranoia was my best friend).   This meant my family’s too.  You see, part of the anxious years prior to this meant I was the one who drove and led the family. No one’s fault, just that awful C word which made me protect all the ones I loved and push forward with a bullet proof vest.  I felt I had no option.  I had to be infallible.  Only,that’s not possible is it?

Imagine walking a dangerous knife edge – like a tight-rope, with one partially working eye.  It’s not fun and it’s not clever.  Anxiety, palpitations and insomnia came into play WAY before the dark clouds gathered.  I had no idea what was coming, I’d always been the one to cope.  I’m the strong one.  Living on the edge? I was afraid and that’s not a place I enjoyed being.  I felt that the free-fall was going to kill me.  I thought my life was over.

The rest you know.  Let’s fast forward to November 2019.  I’m living on the edge again.  But, this time it’s euphoric and full of hope and happiness.  You see, I’ve taught myself to live a little.  At one time I was scared of my own shadow,birds and the wind,..now I walk miles with the RDog, on a wild and windy beach.  She chases the birds for me and we walk to, what feels like, the end of the world.  It makes me feel bold and brave, like I can do anything.  Once upon a time I couldn’t leave the house.  I now feel like I can do anything.  My sight loss, mental health and responsibilities don’t define me.  I’ve shed the heavy cloak which was threatening to drag my over the edge and now I’m a ballerina, avec tutu, pirouetting in that edge and having the time of my life!

Charity

October 2019.  How did that happen?

I could talk about lots of things.  How I ran around Newcastle and did ‘amazingly’ well with my guide for Retina Uk (and raised £1000).  How I’ve returned to work and find I love teaching again.  How the darker days are affecting my anxiety and it’s like the dusk is drawing in until March.  How I’m having to constantly remind myself to look after my mental health.  How I can’t lose what I’ve learnt about myself.  How I’m worth it for many and many are making my life richer by us holding each others’ hands – being each other’s cheerleaders.

This all said, I want to look back at perceptions. Unfortunately, for all the open minds out there, there are some closed ones too.  This can be through things like ignorance (which is fine if said person is open to learning new things – after all, we are all guilty of ignorance).  However, one laughable trait some share is the ‘snobbery chromosome’ (This is where I count myself lucky).  People who have this inherent self interested belief that they are better, and to some extent, are more entitled to breathe the air we all make.  This one is harder to change, and, as my good friend Karl will tell you…although that woman looked down her posh nose at me (and my carer) recently, what she didn’t know was: I am blind.  I was with my carer (who is highly intelligent).  And, I have a family, home, job and that I was getting drunk on my own hard earn money (at the end of term may I add).  None of these things define me.  What does define me is my spirit.

What she actually needs is my sympathy and understanding (not my annoyance).  After all, maybe we need to be charitable to others less understanding than ourselves?

As humans, we all bring something to the party when we come across a word.  After all, we are all different and our own cognitive thought process is generated through what we know…or think we know.  Each word has a prior knowledge, something we are inherently taught from a young age.  It can be built upon from from outside influences – our own context.  And fed by the who, where and why? Enabling the brain to interpret our understanding.

Example: The word ‘tits’.

If I were to ask the question ‘How are the tits today?’ to a range of people, I would undoubtedly be given various responses:

‘They are itchy and swollen’

‘They’re looking good’

‘You disgust me’

‘I’m just going twitching now so I’ll let you know in a bit’

Or, less articulate responses of a range of facial expressions, offended horror, and snorty pig noises in varying degrees, could also be provided.

And, if in a debate, this does not make ones opinion more intelligent than another’s.  After all, there’s no right or wrong answer for interpretation.  We all have our views on Brexit, Boris, immigration etc. But I’m not right and you’re wrong is not even an option.  Also, we all make mistakes.  We are only human!  My lovelies, It’s not black and white (unlike my inverted keypad).

Interpretation is invariably extended to the world of art.  For the record, I love art.  I used to paint and (apparently) was quite good.  I loved getting lost in the act of creating something visual but with hidden depths.  Baring one’s soul on the canvas, for the world to try and see, was always an interesting experience when people used to offer their insights and opinions (something fun or meaningless for the artist can often provoke a deep reaction from another – and vice versa).

One of the awful side effects of losing my sight has been that I struggle to interpret what I’m seeing.  This makes me feel thick and therefore, makes me paranoid about how people perceive me.  But people, for the benefit of my mental health and your cognitive interpretation, I need to explain something.  It might take me a little longer and I might need some visual clues but I’m not daft (well in some senses I am but that’s another kettle of fish entirely).

Art galleries, big houses and museums, have always been a firm favourite of ours.  (Mostly) free, warm and providing hours of thought provoking entertainment, we can regularly seen musing  around some ‘educationsl’ (as the children eye rollingly call it when being faced with a trip but secretly loving it) place on a wet afternoon.  However, of late, this has become more challenging.   I require a personal guide (Him when he can remember or be bothered) to read signs to me and reassures me that what I’m seeing is actually there and not a figment of my brain’s imagination of trying to make sense of something incomplete.  I also require said guide(s) to help me in the crowds, remind me of stairs and direct me through dark passageways.

How frustrating for a forty-young lady about town eh?

And all that without the perceptions of the Joe Public.  At a recent exhibition, I couldn’t even get near the images.  Yes, it was the artist’s life work but  did half of London have to turn out on the same day as me?  My genetics really did me no favours that day.  Firstly, at 5 ft 4, I could not see over heads.  Secondly, as the eyes wouldn’t work, I needed assisted aides.  People stared at me (I’m either drunk or rude, they think).  Bravely, I opted to grab the large print guide and read my way around.  This led to interesting responses such as: ignorance (people continued to ignore me and push me), disbelief (looked at me like I was mad because I was READING A LARGE PRINT GUIDE FOR BLIND PEOPLE) or, looked scared of me because I had some invisible disease.

So imagine my delight this half term, when we decided to take the Rosie Dog for a walk around the Yorkshire Sculpture Park! Four enormous Damien Hirst sculptures were there for all the world to see!  (Plus other magnificent installations too) No discrimination (wittingly or unwittingly – both which occur in my daily life) was to be found.  Their size meant to could really see them.  The signs were of epic proportions which meant I could read them.  They are situated in a country park, which meant there was no crowding.  Lots of different people of varying ages, shapes and sizes were taking it all in.  For the less able bodied there were footpaths.  Furry friends were allowed too.  And all for a few quid to park in the car park!  The best bit was though that I was really able to interpret and debate the art with my family.  We made an interesting panel: Him, Little E (11), our uncle who is a sixty-something Yorkshire butcher, and me…there were some hot discussions and some insightful and refreshing viewpoints.

One sculpture was called ‘Charity’.  Based upon the 1960’s collection tin for the Spastics (now Scope) Society, the bronze sculpture really makes you question what charity is.  Not only do you remember the word ‘spastics’ and all its negative connotations linked to disability and narrow mindedness, it also makes you think about where that charity goes and what does it mean?  The broken box and the crowbar suggestive of corrupt causes.  The state of the figure alluding to neglect.  The history of the piece showing how the world has apparently changed.      The nature of the subject promoting need of help, sympathy…The very title ‘charity’ suggesting multiple interpretations and opinions…

And this is the thing:  context.  A bronze made in 2003, looking at a charity from the sixties, and now studied in 2019 – 60 years.  However we read it, whatever we understand, we all have something to bring to the party.    But, to truly grow as people, to smudge the black into the white paper, we have to open up our senses to each other’s thoughts and feelings.  Consider the context.  That’s what charity means.  Being kind.

Sunbathing

Where’ve I been?  Some have asked these last couple of weeks.

Well…

Whilst recharging my batteries like a solar lamp, I’ve mostly been contemplating my next move in this thing called life.

It’s exciting isn’t it? Looking at new horizons, whilst laying horizontal with the sound of sea, cicadas and Swannie’s 2019 playlist on a loop…but having the time to actually think is something I should have cherished more, because when I got home, life hit.  Children made noise (even my furry one), Hotel Ramblings has been at full occupancy for the holidays, and  Karl needed Prosecco…but whilst I’ve been taking Rosie Dog for her daily, I’ve had some time to think about life, and well…

Now don’t misunderstand me, I’ve not come up with a life changing masterplan.  Unfortunately, there’s  no blueprint hidden in a safe in a discreet bank in Switzerland.  No, what I have discovered is that I’ve spent forty (ahem) years worrying about EVERYTHING, when in actual fact there was no need.  Bad stuff has happened.  We’ve survived. We are here.  So what’s the worst that can happen? (Bravado I know but…)

So in between the above shenanigans, revelations, and unpaid workload, this summer has been spent: sunbathing (yes I know the dangers but…).  Running miles upon miles along the coast – until tragedy (now I’ll come back to that in a minute).  Reading some fabulous and some not so, books.  Helping people drink alcoholic beverages, and (here’s for the disappointing bit) being, sadly, sucked into a non-writing void caused by a very busy home, noisy children, a needy RDog, etc. which all made me further evaluate that life is running away from me (do I really keep mentioning the drain of house life?)

So, what have I discovered and decided about this plan? You ask (get on with it woman!)

Well, let me tell you some stories…

Recently, Him’s life oracle (true story), told him to take that trip to Las Vegas that we’ve been asked to go on, as ‘life’s too short’.  (Cliche maybe, but as previously documented, the magic oracle has rarely been wrong.). She has also told us that the planned extension will go ahead and that Him’s Wife (me!) is aworrying and needn’t as ‘she’s good at what she does.  Therefore, hope springs eternal that our money tree (surely we all have them?) grows and that my confidence and ability do too.

You see, I need the latter to happen and sooner than you think.  On Sunday 8th September, my lovely running guide and I are doing the Great North Run for Retina UK.  No problem, you’d think, but an old injury has stopped play and I’ve not trained for a week (depression is beginning to shroud) This means I’m crapping (it’s not swearing as it’s named after Thomas Crapper the lavatory maker) myself that I’m going to bomb.  This will not only let my supporters down but also my public as we have front starting line passes (cos’ then no one gets in my way ‘no one puts baby in a corner’)  and we’ll be live on the telly (set your VHS recorders now on timer).  Upshot – I feel sick.

But, (don’t hold your breath but do sponsor as it’ll help) the good news is my leg is feeling better so tomorrow I am having a short test run.  I am super petrified it’s all going to go wrong.  So I’ve ordered enough rock tape to mummify Mo Farrah and I literally have it all crossed.

That’s the Immediate future, and my summer in a little nutshell (I also had some fabulous time in Greece with my family)

However, it’s back to work on Monday and I now require the strength of confidence to actually teach again. But rather than dwell on my immediate insecurities (see previous reevaluations whist doggie walking), I’m all about focussing on the wish list.

Aren’t we told we need a five year plan?

Drumroll please…

THE WISH LIST/FIVE YEAR PLAN

(don’t quote me EVER on this and remember it’s about aspirations not realism.  What’s the point in making a boring list?)

  • Extension (full plan,no compromise)
  • Happy and successful children (who can drive me around)
  • – Mortgage free (quickly)
  • Second home in Greece (plus jetty and boat)
  • Anti-ageing cure (non-negotiable)
  • Perfect work/life balance (can you imagine?)
  • Self replenishing/funded wardrobe (sponsored by the Parisian fashion houses)
  • Write that best seller (this must happen as I’ve four unfinished novels)
  • A cure for retinitis pigmentosa
  • Global warming to reverse
  • World peace

NB.  if The Oracle has any thing right, then I can tick a couple off.

Let’s discuss:

Obviously, you’d think the cure for RP would be my ultimate goal.  But is that what I’d really wish for over living a comfortable and happy life?

Back to the sun-bed revelations…I’m not being flippant and ungrateful, but the blindness thing I’ve decided I can now manage. This is the thing, the thing I’ve thought about the most…I don’t care like I did.  If the sight goes then I’ll manage.  You see, I’ll always have love and laughter, and blindness will not diminish my intelligence.  I am me.   My blindness, which, if truth be told, my mum noticed problems at the age of five.  I’ve been living with this all my life.  I just needed to get over it.

Why should it ever define me?

It won’t any longer.

This is what I know:

Well, people look, judge and stare.  They can do what they want but they’ll never have the magic beans I have.  That’s what I’ve learnt on my (always broken, it doesn’t matter which one I bloody pick) sun lounger: I’ll always have my friends and family; I’ll always have a brilliant life – it’s what I was born for; It’ll never be dull (see previous); I’ll forever have laughter and love because that’s what I surround myself with.

What do I need the most then?   Let’s get past the WISH LIST and in the words of the Lionel Richie himself ‘we’re gonna have a party’ and ‘Jambo Jambo’ (to experience this you need to attend Him’s bar where consumption of negroni and Peroni are essential).

Life is for the taking!  We need the good times…

But, for the other twenty three other hours of the day….

I fight back and grasp life .  It’s called bloody living and I enjoy my good and fulfilling life, unashamedly.

So, although it might be too late for me, help me raise money for others facing inherited sight loss.  All you need to do is bloomin’ well get your hand in your pocket and sponsor me for the Great North Run 2019:

https://www.justgiving.com/fundraising/madramblings

Please keep us RP sufferers and our amazing community alive and support us wholeheartedly.

See you Sunday!

Mrs S xxxx

Bus Ramblings of a Blind Butterfly

A couple of weeks ago I needed to write this down so I didn’t forget.  You see, over the past few months my life has changed, well my outlook, so much, that I can’t risk losing what I’ve learnt.  But best laid plans and all that…it’s as I sit here on a ‘notsospeedyshuttle’ with blue neon lights and bouzouki music assaulting my ears (think pimped up ambulance for holiday makers), that I feel that it’s all the more important to contemplate the positive and embrace the beauty of life.

And no, my sharings have nothing to do with hot Greek islands.

So what mice upon a dark January day I collapsed and fell out of life.  It had been building for a while.  They’d been a desolate numbness about me which grew into a kind of claustrophobia; choking me.  I felt that life was grey and I was being smothered by the fog.  I craved the outside.  And no, not the world exactly (I couldn’t be around noise and people. This is something I’ve just had to endure to get me onto the pimped hellios ride).  Instead I felt an overpowering urge to lose myself in nature.  It turned out that being on the beach with the RDog began to heal my tattered and anxious soul.

The world can be a unfriendly place.  It’s hostile environment creating sheer drops and impassable rocky climbs to make it feel like you’re often pissing in the wind.  The weather (temperature, colour of the sky, rain wind speed…), the actual day (Saturday afternoon to Sunday night I felt perpetually sick.  Monday’s I couldn’t raise a smile) and the time (it’s too early, it’s too late. I want my duvet wrapped round me like a sausage roll always) would send me into panic and despair at many a point.  All spiralling the excuses of why I shouldn’t do something as easy as enjoying my world.

That’s right, all the shitty crap that I was going through meant that I couldn’t raise a genuine smile or warmth within my heart.

Now don’t get me wrong, I am no cold hearted bitch, it was just that it felt dead inside for me.  The Fear being that if I felt happy or excited that some evil force would whip away my happiness with another hand.  For some reason I never felt I deserved happiness.

So where is happiness when you look for it?

I’ll tell you where – it’s everywhere.

Years ago I read The Color Purple.  Way before Whoopi immortalised Celie, I was struck with her ‘God is everywhere’ epiphany. The reasoning that he is in every flower, blade of grass, the sky etc. was the basis of her religious rhetoric, has stuck with me ever since.  And whilst I waited for my soul to regenerate and heal (it takes time, like growing a tree) I began to not only notice stuff around me but I felt it cocooning me in a gossamer of silk.  I became a chrysalis.  And like my premature Auntie B covered in cotton wool and lotion, seventy two years ago (my nana thought it was the scrumped apples and she didn’t know babies came from ‘there’), I grew stronger every day.

I marvelled at the beauty which surrounds us.  Obviously, I can’t see everything clearly (there’s five senses you know) but on a good day I notice the sheer brilliance of Mother Nature and how she created birds – the aerodynamics are miraculous wonders of evolution.  On many an inclement day I scan the empty horizon and see nothing but sea, sand and sky.  Miles and miles of an ever-changing landscape (daily) which reveals secrets of the sea and its precarious nature and force; showing us mere mortals how insignificant we are.

It’s like I’m Lady Macbeth’s alter ego.  Whereas she channels the devil, I have unwittingly absorbed something heavenly (I’ve purged the poison).

Claptrap you think?

Well, maybe I do sound a bit airy fairy.  And maybe you sense I’m going to start walking barefoot and extolling the virtues of free love (no, but I have bought some insense to charge different energies in my house).  But becoming a butterfly gives you wings (as does a Jagerbomb and then some).  It means I can not only see the world in all its technicolour but feel it too.  I’m learning to fill up my soul with happiness and close up the veins and arteries which absorb the poison of life’s negativity (drains we call them).

To say I’ve been tested over the past three weeks is an understatement.  Returning to work and a busy house has meant I’ve had to take deep breaths and remind myself what I’ve learnt (also the incense and some yoga has helped) And whilst packing all the bloody house and a kitchen sink, in readiness for our summer adventure, I’ve reflected upon my happiness.

We are tested.  It’s how we learn to roll with it…

The packing has been shite.

The day has been long (I’m still on pimp my ride).

The airport terrifying at times (including the airport being lit by emergency lighting with wires hanging from the ceiling).

Plus, having to find our ride in a dangerously busy (buses, buses moving everywhere!) and dark pick up point.

Do I care? No, I’m thinking about how lucky I am to be here.  And not just in the physical sense too.

I’m learning not to sweat it (fingers crossed for air con)

Warrior’s Stance

What makes a true warrior?  When you’re in the depths of training, there’s more than physical stamina which needs building, it’s the mental psyche that needs a push too.   Now I’m no solider serving for her Maj (patriotic salute), but I when my life became fight of flight, there was only one option.

It was 20 something degrees on Saturday morning and I was a woman on the edge of reason.  Yes, not only was I wearing big pants and a slick of lipgloss, but I was seriously sweating like Bridge Jones in the Bangkok jail, with no hope of escaping (I was very nearly in my bra too).

Quitting was not an option.  And this is why…

There have been many times I have felt like quitting in my existence.  Times where I have felt out of my depth and that I am struggling to tread water.  For example:  my first week of teaching.  I was literally thrown in at the deep end, off the coast of Ireland.  I felt like I couldn’t catch my breath in the deep black waters of the Atlantic Ocean; a shiver of sharks circling for my fresh meat.  Quitting was not an option, instead I focused, dug deep and powered on through.  A couple of weeks in and I began to hit my stroke and made the lengthy journey to America.  It takes time to cross the Atlantic.

It takes time to heal too.  To be successful is only possible when you look within yourself and face your fears.  Digging deep.  One defining moment for me was when the parcel delivery driver (all my shopping is online as shops have been a step too far…) asked me if I worked nights?  Being greeted by a bleary eyed sloth every day must have created a persona I neither lived or deserved.  I wasn’t even working.  My body had given up.  But, and this is the thing, a germ of survival wouldn’t let me give up.  It grew like a bacterial infection I neither desired or could fight.  I wanted to show her that I was normal.  Ultimately, it seems I was too weak to give in to my inner duvet hiding strength.

So where do we pull it from? I’m sure that there’s many of you who have been in similar situations: sink or swim as they say.  What makes you carry on and fight your way through?  Well mine was my family.  You see, you can’t quit when there’s people who rely on you can you?  Nearly twenty one years ago I gave birth to the Big E and from that day I knew there was no room for self pity and self destruction.  There’s a natural animal instinct which kicks in, and with time and rest, your head takes over the physical hurdles.  Being a mum means you have to be just that: a mum.  You might collapse behind closed doors but when they’re their, well, you function.

But that was then and this is now.

Going back into the workplace was always going to be tough.  My goodness, the very thought of the place used to make me feel sick and shake.  They say you should never look back to move forward.  However, sometimes it’s good to look back to see how far you’ve come.

Back to my Saturday run, quitting was never an option.  Tempting as it may have been to curl up and die next to a field (and no doubt be quickly covered in flies) my steely determination (I like being steely), has pulled me through.  Therefore, as temperatures soared, I more plodded, rather than powered on through.  Now don’t get me wrong, dehydration was getting to me.  When Him rang about the whereabouts of the Middle One (the morning after the prom and the all night field rave), I was preoccupied (she must have no battery left, she’ll be fine.  Now back to me) and begged for the rescue water team to come by in the ‘van’ with supplies.  And so, with the promise of a mobile water station and three kilometres to go, I used that inner steel and kept going…

Only, the knight in shining black van armour never materialised.  As I painfully reached the last kilometre, the temperature was pushing 24 and delirium set in.  What was I thinking?  But I knew I’d finally made it and as shoddy state as I was in, I was determined to finish.

Him arrived as I was turning onto our road.

‘Fifteen minutes’ I stated ‘what if I’d have collapsed and died?’

‘You didn’t’ he smiled and handed me the loveliest clearest, coldest litre of water I’ve ever set my ‘boob job/Botox money’ (mega money) eyes on.

‘Jump in and I’ll take you all of ten metres’.  My hero.

But I hadn’t quit.  I had ran my run and survived.  The fact I felt sick and like I had sunstroke didn’t matter – even having a wee wasn’t working.  I was alive and still, errrr, breathing.  All I needed was a massive ASDA shop to arrive (like I said delivery drivers are my new social circle).

Twenty minute later, after putting away the goods solo – only I wasn’t as the field raver was sleeping off field rave since 7am (what did I say about solely surviving for my family).

So…

After a long strong word with myself in the dark, I knew to survive, I had to toughen up and buy some kit.

My amazon basket was full (and remained so as my card was declined due to me using my lost card rather than my replacement.  Long story involving my middle one…).  In the mean time, before I found the correct card and awaited one of my new delivery friends (did you know that when they contact you they tell you their hobbies? Mine likes cooking and swimming)  I carried on through..,

And so I, literally, ran with it! I powered through Sunday and had an active rest Monday, with only a (I say only, my lovely instructor is a demon in Lycra disguise) barre class to strengthen and wonderfully relax to.

Quitting wasn’t an option either, when on Tuesday night, my complaining big mouth had got me into creating the playlist for spinning.  You see, when you create a very fast and eclectic list, you’re to be prepared to both a) suffer, and b) take the heat full on – Kylie’s locomotion? Both iconic and genius if you ask me! (And that’s what I get for slating his Cher on nineties week).

The mountain climb paid off tonight though (as did the Amazon order), as I ran my fastest 10K this season!

This week has been tough (and it’s only hump day).  Back to work and sweaty hot training schedule.  And don’t even mention the family…

Looking back, looking at that person who could no longer feel. Well.  That person has been left at the bottom of the mountain, or on that coast of the Emerald Isle, as my starting analogy took you to.  I’m fighting through the toughest terrain, or blackest, inhospitable depths of the mighty ocean.  But I’m surging and feeling good.

Maybe this warrior is winning her war.

I’m running the Great North Run on Sunday 8th September for Retina Uk.

If you would like to donate to this warrior, then sponsor me here:

https://www.justgiving.com/fundraising/madramblings