Author Archives: swannie95

About swannie95

It is not the bumps in the road which define us, it is the journey itself which makes us who we are.

Let’s Hear it for the Boy!

Lockdown has been tough for us all.  With it we have faced many personal challenges, which have pushed many of us out of our comfort zones.  Things we previously took for granted: family, friends, going to the shops…have been taken away from us and with it we have lost our freedom.  But what are the things that have kept us going?  Or more importantly, who?

Firstly, I’ve thought about this loss of freedom a great deal.  It made me think about prisoners and how their physical worlds can shrink, but with it they seem to experience new worlds – ones which open new doors and possibilities.  And when I say prisoners, I’m not just talking about people incarcerated in HMP, who are encouraged to learn new things and to broaden their horizons (because it helps with rehabilitation) I am referring to anyone who is confined in a space and has been stripped of their liberty.

Recently, I remembered a story about a POW in Burma, in WWII.  He secretly sketched his ‘love’ on scraps of wood and paper.  He said that he did it as he needed hope and to remember another life.  Thankfully, he survived and was able to bring them home to her.  This story of hope and love made me think about the link between doing something physical, as a reactive emotive response, to a situation.  There is lots of evidence of ways they managed to stay sane and alive in such POW camps.  Some created art work and carvings depicting their incarceration, whilst battling the relentless and inhumane treatment from their captors.  Although this might be an extreme example, you have to ask why they did it?  Where did they get the strength and determination to do something which would have only been able to be done under subterfuge?  Well, obviously it was to help them, and others, to survive.

The human mind needs occupying.  We are genetically programmed to gather knowledge.  The term ‘you learn something new every day’ has never been more evident during recent times.  Stories of people learning new things or taking up ‘old fashioned’ hobbies seem to have become the norm.  And although we have relied heavily on technology to communicate, we have also looked elsewhere to find an inner peace and calm.

However, something else we need when our freedom is taken from us is ‘togetherness’.  And this is my story….

On the surface, I’ve done the same as everyone else.  I’ve kept busy and achieved many things during lockdown (art, writing, my garden, etc) I’ve learnt new skills and found a peacefulness from just taking a breath and stepping away from the craziness that we call life.  But I am not going to go into all that.  Instead, I need to tell you about how looked after I am.  After all, being imprisoned means you need a certain camaraderie and understanding to survive.   

My world has shrunk more than others.  Living with sightloss has meant I’ve been really restricted over the past twelve weeks.  And this has meant two things: I have had to be innovative and patient, and I’ve had to rely on Him.

Him: my carer.  Obviously, he is my husband and I didn’t marry him so he could look after me.  In fact, bizarrely, when we first married, I was his carer.  He was recovering from stage four testicular cancer and was half-way through treatments.  Luckily, he got through it and we have led a good life ever since and he has been clear for fifteen years.  But unfortunately, since my eyes have recently begun to deteriorate, I’ve had to lean on him more and more.  I feel a massive pain in the neck for this and find myself (annoyingly for him) apologising constantly.

To say I’m high maintenance is an understatement.  Any of you who know me and been on the end of guiding, note taking, putting up with the ‘panic’ that can descend…can vouch for this!  But you should try living with me.  On an ordinary day he helps me in the mornings and evenings.  Stuff like cups of tea, ironing, driving me to where I need to be, and generally just bring amazing! However, during lockdown I feel I have started to lean on him more and more.  And that is quite scary.  After all, who wants to be a burden?  And when you’re as independent as me, it can make you feel frustrated and guilty too.

So what does he do?

One problem has been that I can’t social distance.  Not because I don’t want to, but I can’t! I could easily walk into someone and jeopardise either of our health.  I also can’t always read labels in shops.  Therefore, picking up things and reading them isn’t an option either.  Going out: it’s not worth the danger or the death stares!  So, as far as essential shopping has been, he’s done it all.

Also, he makes all my drinks and food.  Whilst I sit at the table working away, he’s there with food and drink 24/7.  Now this is something new: I don’t get this level of attention at work (I wonder how I’m going to cope).  And, I write lists of things I want doing and he does them!  (My house has never looked so good).

In amongst these tasks, he manages to also be in charge of entertainment.  He mixes his music on the decks.  He pulls me away from headache inducing screen time to watch a funny programme.  And he also makes me further headache inducing G and Ts.

This new period in our relationship has been both surprising and lovely.  This week, we’ve been together for twenty four years.  In all that time, we’ve never spent more than a two week holiday together (the thought of a holiday…) We even lived apart for a while whilst he worked away.  And for this period I loved it!  We got weekends together and the house was tidy all week (he’s messy – everyone has their issues).  And…I’m not going to lie, at the beginning I was thinking ‘this isn’t going to work’.  After all, he’s worked all his life and there he was caring for me and our girls.  He was so tightly coiled and wound that I thought we’d fall out if he didn’t learn to chill.  He did though, and quite quickly we established a routine that suited us all.  Twelve weeks later and it’s actually been quite nice.  I’ve been looked after like a Queen, loved and spoilt at times.  Who’d have thought it?

We never married to become each other’s carer.  That’s not why you marry.  However, you should marry your best friend.  Someone you could be locked up with and not kill, who cares about you no matter how high maintenance you are, and has got your back.  And whilst I’ve been creating and doing things to occupy a restless mind, he’s been my sidekick, DJ and barman.  And, as always on our journey, he’s shared my hopes for a better, healthy and brighter future than ever before.

This week I’d carers week.  I am dedicating this blog to Him: my https://m.youtube.com/watch?v=s7FGbhpr2pg

The Hare and the Tortoise

After ten weeks in lockdown, I’d expect that those of you who know me, might have expected me to blog more.  And that fact is, I would have if not every man and his dog were doing it – and have been doing it well.  It’s been lovely to see that people have been so creative and shared so much with us over the past few weeks.  Music, art, writings, lovely debates, live cooking…what weren’t people doing to alleviate cabin fever and help their mental health?  Busy lives switched off.  Brains have had time to rest and reset.  So I took a break from the weekly blog and decided to spend the time perusing my list.

My list was created by the psychologist who helped me at the beginning of the year.  My list was filled with things, which I wanted to do but felt disconnected from as the clock ticked and my sight has deteriorated.  The list was to take me in a new direction, and intended for me to build my confidence.  Which, would  require me to use the coping strategies I was being taught at the time.

So, The List:  It’s not been easy.  At times frustrating and not pretty.  However much I look forward and see there’s a long path to go, I can now look back and I can no longer see the beginning – it seems that I’m well away!

You might think that tackling a list of self-indulgent to dos, might make me selfish.  After all, using lockdown for self improvement, whilst the world is falling down all around me…shouldn’t I be doing more to help?  ‘Well, yes, probably I should!’ Shouts the self-deprecating voice in my head.  Whereas, the newer CBT me shouts louder ‘You’ve done more than you think!  Working, teaching, supporting friends and family’.  And then there’s a little tap on the shoulder, as I trip over the dishwasher (again), reminding me of my limitations and I have to concede that I do plenty.

Living with sight loss through lockdown has been particularly frustrating.  Also, as we ease out but are told to adhere to the two metre rule, it will become busier, and even worse for those of us who struggle with little or no vision.  However, you don’t need to know about my traumatic shopping trips, or having to explain to people that Him is my carer…my experiences are through a hazy lens.  I’m sure you’ve all had your fair share of bad experiences since March.  We’ve all been in this together.  But things are easing and with or without a disability, we are all going to struggle.  Therefore, if I’m to keep my anxiety in check, I’ve got to keep on that list and follow that journey.

But what is this list? You ask! Well, that’s the thing, it’s quite simple.

Firstly, it involves gardening – my garden will soon resemble Eden but I still have a massive ‘to do’ list (it’s all about the hare and the tortoise on this journey).  Spending hours in my little patch of England not only boosts my vitamin D (doctors orders) as I’ve not enough, but it also creates a calm within me.  From my garden you can hear the sea.  You can hear bird song.  You can just relax – no clock, no time frame, just nature growing at its own sweet pace around you.  So we’ll gloss over the fact that I’ve killed a courgette and that I’m struggling with the difference between weeds and flowers…but the serenity, beauty, fragrant air…

And being outside has ticked more things off the journey list.  Accessing art again.  A channel I’d shut off as I felt inadequate and untalented – in something I was once applauded for.  And I’m not sure what did it, but I began to paint, sketch, design.  And something I’d locked away for twenty odd years awakened and I’d forgotten how freeing it was to paint.  So what if it’s not perfect? Art is what you see.  No one dismissed Monet for the blurry lilies.  No one told Picasso his portraits were inaccurate.  (Well they might have done but no one remembers them).

Then there’s the book.  Ironically, it’s the writing I’ve struggled with the most.  I’ve had spurts of inspiration.  I’ve finished part one of my book.  Only, then I spiralled into a despair of worthlessness and inadequacy.  I think that because it’s the thing I feel I’m investing the most emotion in, I’m losing that confidence of my ideas and convictions.  Sometimes it’s the things we hold closest too us that hurt the most.  I’m not done yet though…

Even though there is more on the list, and as you are only having a coffee reading this, I won’t bore you to death about every item.  But, what I did want to highlight was that like my list, we’ve all come a long way over the past ten weeks.  We’ve probably learnt more about ourselves and others than ever before.  We have all been on this weird trippy journey and we all might have theories but no real understanding of what our futures will look like.  Just like I need to find the confidence to continue with my list, my journey, my book…we all need to learn how to live this new life and not go backwards.  Like the tortoise said to the hare ‘slow and steady wins the race’.

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

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.