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Sunday, 19 June 2016

New Name, Same Waffling...

Thank you for the thousands of views, shares and comments over the last five years.
I truly am so incredibly grateful.
I've decided to rename my blog 'Ten Legs Four Wheels'.
Please take a look and see if it still tickles your fancy...
Ten Legs Four Wheels

Wednesday, 1 June 2016

The End

Today is a big day, it marks 4 months since my youngest child was born, it is the eve of my 33rd birthday and realising that I am about to turn 33 (I genuinely had to work out how old I was from my kids' ages! Mummy brain- frazzled!), it's reminded me that it has been a decade since my accident at 23 years old.
After much procrastination, it is also the day I decide to 'rebrand' my blog.

Why? Well, a mere paragraph into writing today and I have already been interrupted by my two year old for problem solving that in her opinion Nanny was apparently just not equipped to deal with, (after some super big changes in her life, my previously over confident little lady is going through the 'only Mummy will do' phase). I have also had to stop to breastfeed my teething baby four times, changed one nappy, diffused two tantrums, won one successful lunch negotiation with my daughter (who this week only wants to eat cereal!) and tended to my poorly dog's post op paw.
And this is with my mum here helping because my husband is away and I am bed bound this morning following a five week roller coaster since we moved from London to the Wiltshire countryside!
Did I mention, I'm still living out of boxes?!
Without my mum being here the blog wouldn't have got written today at all.

So I've come to accept that my life is officially bonkers, but it's these bonkers things that I find myself wanting to write about these days. The crazy tales of the baby puking on the dog whilst also discovering the controls to my wheelchair are real and what makes up my life, so they are naturally what I am inclined to write about.

So it is with that in mind that I am now going to be writing under the banner '10 Legs 2 Wheels' as this is the reality of my life.
More often than not, due to having to be away with work; my day-to-day life is myself, my two year
old, my four month old and my Golden Retriever,  living a chaotic but wonderful existence made possible by my trusty electric wheelchair 'The Beast'.
My primary school maths tells me that that's ten legs and two wheels in total and although my legs are not always relevant as they are usually plonked safely in The Beast, I also get up to hilarious and embarrassing escapades whilst my husband is in tow too, so let's think of legs nine and ten as covering us both!


I don't see this as saying goodbye to 'Discover Disability' as I think I will always be learning about my life with my disability and emotionally adjusting to the loss I still feel at not being able to dance or play on the playground with my children, but I think this 'rebranding' if you will, is necessary as being a mum (and an organic loving, plant eating, hippy of a mum at that!)- is so much of who I am nowadays that the original title can be a little misleading of what I am usually waffling on about.
So much of my correspondence in response to my blogging is in reference to my calamities as a mum, but I still receive a lot of mail in reference to my disability, I will therefore be writing about both- my life.

It's now five years since I started blogging about my slightly less bonkers life trying to accept my disability.

It was a cathartic process and one I realised may help me after working closely with an amazing psychologist, (I will refer to as 'Jenny') at my wonderful pain clinic in a London teaching hospital.

Apart from teaching me to find a way to channel all my new emotions, Jenny also taught me three important things that I have tried to share with my readers over the last five years as the realisation of the relevance of these lessons in my life has become apparent.

The first lesson was that I couldn't continue living in denial (something I was seeing at the time as determination) and try to still do everything I had done previously when I lived my life as an able -bodied twenty-something; dating my RAF pilot boyfriend (now husband of six years); flying around the world as a hostie for Virgin Atlantic and trying to keep my hand in as a dancer/choreographer.

Before Jenny's help I would still try to do too much and join in on nights out (aided by Garry pushing me in my then manual wheelchair over the hills and cobbles of the streets of Bath- did I mention he was amazing!) at whatever cost to my condition and on rare, better days I would try and attempt to foolishly not use the electric wheelchair that I now rely upon today.

Jenny taught me about 'boom and bust' and how by being in denial and stubbornly not accepting my wheelchair and mobility aids, I was leaving myself bed bound for days, weeks and sometimes even months, drugged up to my eye balls on morphine as a result.
I honestly was blind to this at the time.
Through her I started to accept my chair -'The Beast', which has enabled me to live my life again and most importantly given me the ability to have my two miracle babies.

The second thing Jenny taught me is that I am a perfectionist.
'What does this have to do with coping with chronic pain and disability?', I may hear you ask, and I think I may have exclaimed the same when she first raised this point; but actually it's been an important lesson to learn.

It's with hindsight and her expert perspective that I can now see this evident throughout my whole
life, and upon sharing this revelation with my friends and family I have been greeted with knowing smiles and replies of, "This is news to you?!"

Jenny taught me that becoming disabled hits those of a perfectionist nature even harder, not least because they beat themselves up for not being able to walk, work or even talk in the same way as they once took for granted; but also when it comes to learning to accept your disability and to embrace the skills you may still have, perfectionists who want to do things to the best possible standard and nothing else, can get incredibly despondent and depressed when realistically this just isn't possible in rehabilitation.

I was stuck in this phase for an incredibly long time.

The last major lesson I learnt is related to the perfectionism, in that I have come to realise that my confidence has been crippled as much or if not more than my body.

It amazes me that I once performed on stage to an audience. My confidence is now so shattered that I worry about taking my daughter to pre-school.

This anxiety and subsequent dip in confidence is due to many factors, not least the fear of my physical body failing me, that I may end up in spasm or crippling nerve pain at any given point. People looking at me as a result is a worry, but the safety and logistical aspect of this happening is my main concern.
I also find that after years of incredible doses of morphine and nerve drugs, my brain is mush and this was even before I added the very real phenomenon of 'baby brain' into the equation!

In addition to this, the things that I have trained in are now no longer realistically open to me.
As much as I'd still love to travel the world, the logistics of serving tea and coffee at 36,000ft from a wheelchair are a little problematic!
(Mr Branson, if you do fancy widening the aisles of your A340 enough to get my electric wheelchair through, I'd gladly give it a shot!)
Hell, if I can breastfeed a crying baby, whilst simultaneously soothing a tantruming toddler on the other knee, I'm sure doing a drinks service through turbulence would be a piece of cake!

Some days I am consumed with the realisation that I am not qualified to do anything anymore.
I'm a professionally trained dancer, musical theatre performer, dancer teacher and long haul cabin crew member.
As a fit and healthy 23 year old, that suited me down to the ground, as I've said previously, however, none of these qualifications are of any use now, and my lack of confidence in my own ability tells me that I need some relevant  qualifications to succeed in anything again.

Even writing this blog, I discard countless posts as I over analyse my grammar and become stuck in a metaphorical quicksand by the fact that I have no qualifications in writing.
Over the last six years I've bought a whole bookcase of writing and grammar books, but with limited capacity for concentration and physical typing since becoming disabled and living on masses of
drugs, the time it would take me to read just one of these books would take away from the time and mental and physical capacity I have available to write the blog at all, or do work for my charity.

The reality is that I am a mum and a disabled mum at that, so that is what I will be writing about from now on.

Any parent knows that the best laid plans never run smoothly with small people around.
Just when you've managed to get you and them ready to leave the house (a cliche, but my husband can actually vouch that this is on a par, if not at times more difficult than such a task!), one or both children or dog will have decided to pee, puke or poop on you and or themselves and their siblings just before you are due to be at work, school, Dr's or the incredibly rare occasion of a trip out for you and your partner.
This is made a little more tricky by the fact that the smallest of tasks like washing up, or putting away toys or cleaning dirty bottoms is a physical feet in itself and involves preparations of stools to be positioned, (excuse the unintentional pun!), or sticks, (that more often than not get stolen by toddlers!) and wheelchairs, to get me to said toys and small avalanches of washing mountains- so when this task has to be interrupted to save your smallest child from a gymnastics injury inflicted (with love) by your eldest child- "look mummy, I'm doing the splits on my brother!"- the tasks associated with just raising children take twice as long.

I sometimes look at my home after getting my two two-legged babies and one four-legged fed and to bed and count thirty or fourth half done tasks- from a princess floor puzzle abandoned due to a tantrum because her baby brother tried to undo her hard work; to the notes of a half completed phone call to the council to arrange council tax and further adaptations to my property that had to be left
until tomorrow after I could no longer hear the operator as my youngest baby was crying so loudly.

Ten years on from my initial life changing injury, Garry and I have learnt a lot of how to live with my disability, but I think we would both have to agree that these past six months have been our most challenging so far.
As life tends to do to us all, everything has come at once. The arrival of my son; the completion of our house purchase after a seven month saga from offer being accepted to exchange; my husband leaving the military after 18 years of service and the intense training in his new chosen
career and my daughter starting pre-school and having the usual wobbles of this milestone along with simply being a two year old!
This has all been whilst trying to deal with my disability and it's associated issues, adapting the new house with lifts etc., fitting in additional consultant appointments as my health continues to
throw up further complications and parenting the babies we were told we would almost certainly never have due to my disability.

With that in mind, we are obviously incredibly grateful and so lucky to be living through these difficult months altogether at all. But we also have to acknowledge for both of our mental health that they have been difficult.

At Christmas, (a time associated with relaxation and tranquillity at the best of times right?), my husband was in the midst of his exams, I was admitted to hospital with another suspected blood clot on my brain, our house purchase had fallen through for third time and my toddler was simply 'being two'! My son was then thankfully born and admitted to neonatal intensive care and the other issues continued to be present.
 It's little surprise to myself and our friends and family that the pressure on my husband as the healthy and fit bread winner to hold it all together for us all became very real.

The last few months have been tricky for us all, (including the extended family and wonderful friends who have been so generous in their help and support to our family), but we are pleased to say that we are finally in our new family home with lift installed.

Although they've been the toughest, these months have also been the most rewarding, as we are out of military housing and in our own home and most importantly, we are a very happy family of five- (don't forget the dog!).

I hope you've enjoyed my ramblings as Discover Disability. I've received so many lovely emails and comments over the years and made so many contacts from you wonderful people reading and sharing thousands of times, I really am so touched.

When I started writing down my raw thoughts and feelings post spinal surgery, I never thought even 10 of my friends would read this, let alone the thousands who have. Thank you all so much.

Some of the people who have written to me to thank me for my honest waffling, have ended up sharing their own stories with me and I have learnt so much from you all to apply to Get a Life! Foundation.

I hope that you will follow me over to 10 Legs 2 Wheels.

It's exactly the same me, telling the tales of my bonkers world, but if anything perhaps a little freer as I no longer try and fit into a template I had perhaps grown out of a little while ago.

I've so enjoyed your correspondence, so do please keep writing.

Love and thanks to you all,

Kaz

Monday, 18 January 2016

New Year- New Arrival...



Happy New Year!
I hope that you have all had a wonderful Christmas, or at least one blessed with peace if the other was sadly not possible for you.
I hope also that a week in, 2016 is proving to be a positive one for you so far.  

So far it is one where I've needed to employ a lot of patience- a virtue I have to confess I am not well acquainted with.

My newest little bundle I had expected to introduce you to by now, is still yet to make an appearance but I am however in hospital after being a little under the weather with what has turned out to be a bacterial infection in the left side of my head. 

Antibiotics have commenced and I am already feelings a lot more human.

I'm very comfortable and incredibly fortunate  to be in a fantastic hospital being looked after by truly amazing people and I am even lucky enough to be in a side room by myself, hopefully I'll be all fixed in no time and back here having this baby, unless he/she decides to make an appearance before I get discharged- due date is tomorrow after all!

The hardest thing I'm finding about this hospital stay is being apart from my little whirlwind.

I know that Florrie is being looked after by my wonderful mum with help from my wonderful friends, but it's still horrid being apart from her.

The hardest time came this morning when I called to hear her little voice chat to me about Peppa Pig and she went all funny and didn't want to talk.

Thankfully, due to the wonders of technology this all improved when she could see me through FaceTime.

Suddenly I was being shown a delightfully adorned outfit consisting of just a Muslin cloth that I had washed and prepared for the new baby's arrival, teamed with a fetching princess headdress and not a lot else!

'Yay' for technology bringing me closer to my baby!

'Yay' for technology in so many respects- it has kept me in touch with my mad bunch of friends who have kept me entertained with banter about my fully expanded belly and technology has detected my problem through the wonders of an MRI machine and has helped in so many aspects of my treatment so far, in not just this illness, but all of the many episodes that have preceded this one.

But what I am even more thankful for is the people administering this technology, be it the friends behind the messages or the people hooking up the machines and monitors to me.



... I was interrupted in writing this post by an unexpected visit from my consultant who decided that I would feel a lot better with this baby out and so decided to break my waters.

What followed was 36 hrs of the most intense experience and emotions I've ever felt.
It started with an amazing first 9 hours of labour with the most wonderful midwife. 
I employed my hypnobirthing and Daisy Birthing techniques I had studied, before the baby finally pushed right on my metal cage around my spine and my damaged nerves and I needed a little more assistance for my neurological pain.

Without going into detail, the last few minutes of my baby's delivery were a little dramatic and he was immediately whisked away to the neonatal intense care unit after being deprived of oxygen- cue the loneliest and most bizarre feeling I have ever felt following the most intense euphoria and relief at his arrival.

What followed was a mixture of desperation, loneliness and confusion, as I was left in a delivery room (which resembled a scene from a war film) alone and in shock that my baby was here but not with me.
Garry had been told to follow the Drs down to see where our son was going for his EEGs and treatment and I was left feeling so odd and probably a little in shock.

After what seemed like an age I finally got to hold my baby again in NICU, albeit with him hooked up to a million wires and this is where I was for the best part of a day, having not eaten or slept in over 24hrs and feeling for want of a better adjective- strange.

At 5.30 the next morning I received the most amazing delivery, my little boy was wheeled into my room and returned to my husband and I for the remainder of his treatment and hospital stay.

Over the next few days we finally got to hold and bond with our precious bundle before bringing him home a couple of nights ago.

We are now home and enjoying our incredibly blessed life as a family of five- although in all honestly, I'm not sure poor Barley dog is completely thrilled by the further expansion of our brood!

Florrie is the opposite though and is head over heals in love with her baby brother.

Having now had six days for the dust to settle since his arrival, we are now able to believe he is here and he is ours.

We have had incredible care during my week long hospital stay with amazing individuals looking after us all.

We are so very lucky to have our NHS and we should treasure it.

My most wonderful midwife (who sadly had to clock off before my son's arrival) told me she would look up my blog when she got home- 
So Ellie, this is for you...

You were not only professional and conscientious in delivering the medical side of my care last Thursday night (and let's face it, I'm a complicated case at the best of times!) but most importantly you cared and you showed that care.

You bonded with my husband and I over everything from my birthing playlist music, to my husband's inappropriate Family Guy quotes and this built up such an important report of trust and confidence in you.
We had the most intense relationship for those eventful 9hrs and you changed my experience of childbirth from one of fear and anticipation to an incredibly positive one. I would even go as far as to say as I enjoyed it and that is all thanks to you.

You are not paid enough, you are not valued enough and after you clock off and new parents go home naturally completely absorbed in their new precious bundles, you are no doubt rarely thanked enough, but please know that you are so very precious to and appreciated by our family.
You and your colleagues were the human element of our journey to having our baby boy and that journey started so very long ago.

It is ten years ago this year that I had my car accident that damaged my spine and changed the course of mine and my husband's lives. Since then- 
Nurses
Health care assistants
Anaesthetists 
Physios
Hydro therapists
Surgeons
Neurologists
Maternal medicine consultants
Midwives
Maternity care assistants
Chronic pain psychologists
My husband
My mum
My family 
My friends and countless others, have all got me to this point today where my life feels complete.

I have my family I was told on numerous occasions that due to my injuries and their associated issues, that I would almost certainly never have and that is thanks not simply to the wonderful technology and treatments that have been available to me through the NHS, but most importantly the people who have delivered those treatments with compassion, care and kindness.

Ellie, you and your colleagues were the last in this long list of individuals who helped change my life, but you were certainly one of the most special Ellie because you were so caring and compassionate and simply bloody wonderful!

I thank you and I thank all of the above for enabling me to take this wonderful photograph today- my two babies, my world.


Today I wake up as usual in intense pain, sleep deprived and a little frustrated at some of the physical things I am unable to do, but far outweighing all of these emotions, I am completely consumed by happiness and gratitude for these amazing gifts that have spent the morning snuggled in my bed with their wriggling toes and dribble faces. My babies.

We all have light and dark in our lives and sometimes when the dark gets a grip of us, it's hard to open the curtains to let the light shine through, then something happens to turn that around.
My little lights are shining brightly today,

I am so incredibly blessed.












Wednesday, 23 December 2015

Santa's Sleigh and Silly Legs


Twas the (day before) the night before Christmas and all through the house, not a creature was stirring not even a mouse.

As I sat down at my computer adorned in fairy lights and surrounded by Christmas cards to compose this post, this wonderful line of prose struck so true to me.

My little Florrie monkey is affectionately known as Mouse to my husband and I and the house is indeed   strangely free from the usual demands and dramas that only a toddler who thinks they are a teenager can deliver with such a unique charm.

Even the dog is out enjoying the park thanks to the wonderful help supplied by my parents and the only noise that can be heard is the occasional cough and splutter
from my man flu suffering husband studying in the next room.

I actually can not remember the last time that I experienced quiet quite like this. Hang on a minute, my daughter is 29 months old, so I'm going to go with 29 months and one week ago!

Becoming a mum has been without a doubt the best thing I have ever done in my life, but it has also been the hardest thing and in all honesty is becoming harder the brighter and more active that my little monkey becomes.

Being told for years that due to my accident and subsequent illness I would be unlikely to ever know the joys of motherhood, I'd daydream for hours from my rehabilitation bed about little cosy bundles of joy laying peacefully in my arms and what I would call such bundles and what they would look like.

Although I would also occasionally let such daydreams meander further down the pathway of time to picture family walks in the park and holidays and cosy afternoons watching Disney movies together with hot chocolate and marshmallows- I think it is only natural to fixate on the baby stage when you are being told that these things are unlikely to be possible.

Those of you who know me personally or indeed are familiar with my story through my ramblings on this page, will know that God did indeed answer my prayers with my gorgeous Florrie back in the summer of 2013 and to go one further has now even blessed us again with another baby which is actually due anytime now, so there may well be that rather lifelike new baby doll arriving for Florrie on Santas sleigh tomorrow night!

With my pregnancy with Florrie I was able to research the best prams/travel systems that would work well with my wheelchair (for me personally this was the Stokke Xplory due to it's lightweight and easy one handed steering if you are also becoming a disabled parent), as well as explore other clever solutions to get around the practical issues of raising a baby with restricted mobility, such as co-sleeping cots, slings and other clever gadgets etc.

I thought I had it sussed and despite my usual neurological pain and restricted mobility I'd go as far as to say that in the first few months to a year of Florrie's life, I look back and think that maybe I did indeed have it sussed.

I'd strap my gorgeous little bundle to me in her sling and drive off into the SW London sunset in my electric wheelchair and do shopping, take public transport and walk the dog. I even attended meetings for my charity like this.

Fast forward a little over two years later and Florrie is no longer a quiet, cute little bundle who I can sit on my knee on the wheelchair and get about my day with!

Florrie is a bright, extremely active toddler who has this crazy idea that she is a teenager at the age of not even two and a half! She has very strong opinions on most areas of life, not least that of what outfit she is going to wear for each hour of the day!

I'm sure this is ringing true to many mummy (or Daddy readers), but this morning I think I counted no less than five outfit changes before the clock had even struck 9am!

The girl is a whirlwind, a whirlwind I certainly would never have any other way, but a whirlwind none the less! In light of this, I have always made sure where possible that Florrie has plenty to do to wear off her energy and enthusiasm for life.
 Many of my friends would say maybe too much and joke that her social calendar is more hectic than theirs, (it certainly is mine I can assure you!), but despite the dancing, swimming and singing classes and groups, we are still yet to wear her out!

Although this is a running joke amongst my closest friends that as a former dancer and dance teacher myself, only I could have my two year old taking ballet, tap and musical theatre classes and have performed in her first show on stage at just 2 and 3 months- but the truth is firstly that she LOVES it, otherwise she certainly wouldn't be doing it- (she would make sure of that believe me!), but also there is a more serious truth behind all of this- that being that I have always had a fear and insecurity that Florrie would miss out on so much in life because of my disability and restricted mobility and health.

This fear has plagued me and at times consumed me and something I have spent many hours discussing with my pain and rehabilitation psychologist.

There are and have been so many times that with my husband away with work and my condition at it's most troublesome and annoying that I have had no choice but to make Florrie safe in my bed or bedroom and ride out the flare-ups.
This causes me a pain far greater than the physical neurological pain, so when I am able to take her to her classes and social groups I do and with relish as I never know just when we will get struck down again and have to suffer a Mr Tumble day in bed!

Don't know who he is? Think yourself lucky!

What's occurring to me as time passes and her little mind and body grows is that even when I have won against all the odds and got her out to these classes, Florrie is now becoming more and more aware of just how different her Mummy is to that of her friends'.

The most difficult and poignant moment so far came a fortnight ago, on our drive to her music class. We were chatting about her music teacher who she adores and what songs we would be likely to sing that morning.

Quite the chatterbox, Florrie went on to recite how the whole class would go. I smiled to myself as she talked until she came to the bit where they all walk around in a circle and do the dance.

"And you do that too Mummy?"

Choking back the frustration and sadness I went on to explain that- Mummy can't do that bit with you can she?
With a big sigh, my way too wise for her years little lady came back with, "Oh. No, mummy can't do those things as Mummy has silly legs".

Cue heart breaking into pieces into the footwell of my van.

Sure enough when we got to the class, I did the bits that I could sat down with Florrie and like I have done since she started music classes at 4 months old, I then had to pass her over to the teacher whilst they did the marching around and dancing bits.

Yes, all she has ever known is me in my wheelchair getting us about outside the house and mummy on her sticks or stuck in bed sometimes. She takes for granted 'Mummy has a lift' and points out wheelchairs 'like mummy's' (although obviously not as cool as!) with the blink of an eye, and we regularly have squeals of 'faster Mummy' as I take my 12kph wheelchair up to max walking the dog, (don't tell my husband!)- but as time passes and the start of pre-school approaches, I'm acutely aware that this road is getting a little trickier to negotiate.

But what is life without trickiness?

When do we ever truly appreciate what wonders we have until a few obstacles or difficulties remind us to appreciate our lot- and boy, do I have a lot!

I am about to become a mummy to two amazing monkeys I was told it would never be possible for me to have, (make that three- my eldest baby may be 9 years old, have four legs and constantly have an odour of wet dog at this time of year, but ever since the days he so lovingly dedicated to keeping vigil by my bed during my years of rehabilitation as a pup- Barley will also forever remain my baby!)- I am married to my best friend and am surrounded by the most incredible friends and family who have made this undertaking possible.

I know that when I commence my family Christmas traditions tomorrow evening, by sitting in church listening to children singing my favourite carols, I will be lost in that warm fuzzy feeling of having my family around me and that to me is worth every penny in the world and all of the trials and difficult days that have been scattered throughout the year.

After a year such as 2015 has been, I'm all too aware that so many people don't have this and to any of you reading this, my thoughts and prayers are with you all.

Life is certainly not easy for anyone and is sprinkled with more challenging times to remind us to appreciate the wonders.

So on this eve of Christmas Eve and the start of a new chapter for my family I'm taking this hour of quiet time to really focus on all that I have and to thank all of you wonderful friends and family and blog and charity supporters for all of the incredible support you have given me this year.

I wish every one of you a happy and healthy Christmas and New Year and if that is sadly unable to be the case for you, then I wish you peace in your hearts and a 2016 blessed with improved fortune for you.

Much love and best wishes to you all, and no doubt when I write next it will be to inform you of the arrival of another Reader!

Let the fun commence once more!



Monday, 10 August 2015

A Year on...

One year ago today I was laid in a hospital bed trying to digest the news that following my miscarriage they had discovered I had a blood clot on my brain.
I remember so clearly the consultant holding my hand really tightly and being shocked by her emotion in telling me 'I'm so sorry', as I sat there shocked and stunned that I wouldn't be going home as expected, but would instead commence treatment whilst the doctors from the hospital I was in consulted with the specialists from Charing Cross Hospital as to when to perform brain surgery.

My husband and I are not unfamiliar with hospital stays and difficult consultations with doctors after our last 9 years since my car accident, but this one floored us both, not least because we were already mourning the loss of our little baby I had just miscarried, but our cheeky monkey of a baby girl had just turned one a mere week before.
The morning of 9th August last year I wrote a desperate prayer as I laid there in my private room the nurses had so kindly put me in the night before to help my husband and I digest the news.
I remember that morning so vividly, not least because I have been rereading that prayer over this last week.
I remember the mixture of intense fear, shock and a strange gratitude I was feeling that God had put me in this position to make me reassess and value my life.
My accident had had a similar impact on me (once I had worked through the shock and despair and bereavement of losing the life I had once known),  but this was more immediate and intense.


The inevitable 'what ifs' played through my head as the medical staff described the severity of the situation.
After many difficult years following my accident and diagnosis, I had just had the most wonderful year of my life after The Lord had blessed me with my miracle daughter they had thought I'd never be able to have and the thought of not being around to see that gorgeous cheeky monkey of mine grow and develop into a little lady scared the monkeys out of me; but the scary news was also intensified my appreciation of her and all of the other wonderful gifts in my life like my wonderful parents, family, friends and my rock of a husband.
How incredibly lucky I was to have such sparkling gems in my life. After periods of depression and anxiety following my car accident and disability, I suddenly realised that I did indeed have it all.
I had the loving husband and incredibly strong marriage to my best friend, the gorgeous and cheeky little girl I had always dreamt of, who with her incredible thirst for life was already fast turning into a cheeky toddler aged just 12 months and the most incredible group of friends and family surrounding me, many of whom had already brought gifts and light hearted company to help us through our horrid weekend of limbo whilst the doctors assessed the situation.
Those sharing my strong faith joined together in prayer for me and I was literally enveloped in love and support from every direction.
It hit me that my life was complete and truly wonderful in every way and it had taken this news to realise this.
Like so many of us I had been caught up in worrying over the trivial and had not realised the true extent of the beauty surrounding me as I lived in my new mummy haze of sleep deprivation and bewilderment.
This news had woken me up and opened my eyes!
I recall noticing the beauty of the 6am sunshine gleaming against the wall of my hospital room that morning of 9th August and the warmth of the smile of the nurse who I'd become close with over the previous few days, who had been left as floored as I was by the news of my blood clot.
That day as I sat waiting for more news from the doctors, I wrote a message to all of my friends asking for their prayers or positive thoughts. My faith in God is incredibly strong, (even more so since this experience), but I believe whether you share my faith or not that positive thought is a wonderful thing.
Whatever you believe, my prayers were answered and after four days living in a frightening limbo I received the incredible news that the specialists at the brain hospital had reassessed my scans and decided that the 'blob' on my brain was not a blood clot, but a mass they would go on to argue over for the following year.
The main point however was that it was not life threatening as they had first thought.
I returned home to my family with a greater appreciation of my life and all that was in it.

As a result this last year has been one of the most intense and incredible of all of my 32 so far.

For weeks following this scare I was bedridden and was back and forth to the hospital seeing a number of specialists as the illness following my miscarriage had brought to the doctors attention a few others issues going on beneath the surface.
I continued to live with a small question mark above my head as they continued to do a number of scans and tests to determine quite what the 'blob' on my brain was, but finally almost a year following my discharge from hospital the final neurologist determined the blob to not be of any harm.
I would subsequently describe this year as 'very intense indeed'!
For months we lived in that strange limbo until come November the stress of the strain of the situation and it's affect on our priorities left my husband and I turning to the credit card to book our little family on a much needed holiday to see Mickey Mouse!
We savoured every second of that precious family time together as we have continued to do ever since, as we've continued to have tests into the cardiac issue they discovered that has prevented us putting this whole situation completely behind us.
Then in May came the news which added a few complications for the doctors investigating, but brought joy and relief to us as we discovered I was expecting another baby.
As the anniversary of losing our last baby and experiencing one of the biggest scares of our lives so far passes by, we are also fast approaching the half way point of this pregnancy.
There are many other huge changes going on in the lives of The Readers as my husband prepares to leave his service in the RAF and we prepare to leave military life and relocate to a more rural lifestyle and slower pace of life.


I have to admit that these have been an emotional couple of weeks, as we've also marked my miracle monkey Florrie's second birthday, but I now appreciate all of these challenges to have been positives in focusing us as individuals and as a family to savour and love our incredibly lucky and fulfilled lives.
We are all too familiar with the notion that It is so often the most dreadful things in our lives that send us on the path to the most wonderful things.
For me personally I thank God for this, you can obviously thank whoever you like- but I think the important point is to be thankful.
In my prayer book I scribbled so frantically in this day last year I found these words I wrote to my daughter-
"The world may seem so cruel and unfair sometimes, but I believe that if we didn't have any challenges or sad times, we really would be such selfish and ungrateful people".








Now the dust has settled I stand by this sentiment.
Without the drama and fear of a year ago I believe I would not be living my life with the intensity and appreciation that I am today.
For this I am thankful.
I am thankful to still be here living my life with my little family I thought I'd never have, surrounded by the family and friends I adore.
We all know that life's trivial niff naff and worries can easily consume us as we become overwhelmed by the pressures modern life puts upon us, but please learn from my experience that you really don't know what is around the corner, so try your best to savour those seconds.

I am far from perfect and miles away from how I would like to be living my life, in that I still spend too much time on Facebook, I still let little niggles get the better of me and I still like every parent I know find that period of time between dinner time and bedtime utterly exhausting and long for the time that we read 'Sleepy Farm' and 'Mr Sun' goes to bed and 'Mr Moon' comes out, (you readers who are also parents of young children will get my love and appreciation of the Gro clock and it's magical abilities of getting little ones to bed!)- but today I am remembering where I was a year ago and the support that surrounded me when I desperately asked my friends and family for their prayers.
Thank you so much.
They were answered.
I thank God for that and pledge to try my best to live by the lessons this experience has taught me.


Sunday, 17 May 2015

Agh, my toddler has dressed herself and the dog in my underwear & pjs! Where is the time to do it all...or simply just put my laundry pile away!

My hands may well be one of the few parts of me in reasonable working order, but it sure is wonderful to have an extra pair to help me out once in a while!
So in stark contrast to last month's absent Daddy at the RAF surf champs post, this month's Daddy has been super hands on in every aspect of home life, in particular running after my Baby Bolt!

I am extremely lucky to be married to an incredibly supportive and  hands on husband and daddy who relishes every minute he gets to spend with his little lady and thankfully circumstances these last few weeks have meant that he has been able to be at home a little more, which after countless weeks and months spent away from home since Florrie has been born, it has been such a novelty to have him here spending time with us.
I am loving every second, although I must admit it does take a little getting used to!

I am particularly grateful for this extra help right now as my coping tank was beginning to get pretty low.
Chronic pain really can wear you down, not just physically, but when you have relentless pain day and night, it can get the better of you emotionally over time too.

Lately I have found the pain that has been keeping me awake at night has been particularly hard to cope with, as my days have been getting more challenging as Florrie gets cheekier and faster by the day.

My chronic pain and limited mobility mean that some days I just have to lay down
until I can get the pain and spasms back under control. This often means that practical tasks have no choice but to wait in line as I can only physically do so much.
Washing backs up to be put away, but before it is able to be put away, it is often ambushed my a 21month old Tasmanian devil intent on undoing all of my hard work by dressing the dog and or herself in my underwear and pyjamas!, dishwashers are left unemptied and countless other tasks are left half done, as my good intentions are either interrupted by pain, a cheeky toddler or both!

These last few weeks have been a Godsend, as my husband's physical presence has meant that jobs have been done and even completed and we have had a chance to reset.

It's inevitable that things will slip back as his work load increases again, but for now I am enjoying that incredible satisfaction and novelty that comes with completing a task.
I am a natural worrier and my chronic pain psychologist only reminded me last week that I am a dreadful perfectionist and beat myself relentlessly for not ever achieving as much as I set out to do.
She tells me this is because I set out to do too much: maybe she's right, I don't know, maybe I am too
harsh on myself, I constantly feel like I'm failing, she, (pain psychologist) reminds me again it's because I have the same expectations on my life now as I did prior to my accident and it's subsequent affects on my body.
I suppose it would be nice to not feel like I'm constantly failing, sometimes that seems very appealing indeed, but to do that I would have to stop striving to be the best wife and mother I can be to my three crazy monkeys, or set up the charity I believe so much in and I know this is not the answer as these are the things that keep me going and these are the things that mean the most in the world to me.

Maybe I could listen and try and be a little easier on myself, but I think this is something we all do, even more so in our high pressured society where we are all expected to be perfect mums, wives, daughters, friends and colleagues, whilst also being successful in our careers and dedicating ourselves to charity work or fund raising in our 'spare' time.

What is the answer to this modern day dilemma?? I don't have the answers- if I did I'd be writing to millions and selling out stadiums, instead of writing my little blog. I do however know what I am learning through my own journey known as life- and these are very simply that it goes too quickly;
you just don't know what tomorrow will bring and finally and most importantly, that the most valuable things you just
can not buy- the time you cherish with family and hugs from those you love.

I had an unrealistically long 'to do list' of things to achieve whilst my husband was home from work- update the charity's website, catch up on my personal and charity correspondence, continue working in Get a life! Foundation's 'Get Started' campaign and finish our proposals for funding for our projects, all this whilst putting away in storage all of the clothes my monkey has grown out of (these 'small' people certainly grow quickly!), get to the post office to send the parcels I haven't managed to post that are stacking up on my kitchen counter, make the countless calls to the hospitals who provide my treatments that I have to make to manage my condition, read about toddler tantrums and how to cope with them and do all of the niff naff around the house that has been backing up whilst I have juggling the semi-single parent thang whilst my husband has been working away on and off for the last few years.
So I have news- I failed at about 90% of the tasks I set out to achieve.
As I looked around me at the half folded laundry, piled up half written correspondence and unread book on positive discipline of children- I did the most important thing I could have done that week, I sat down, I took fifteen minutes to take stock and I watched my husband charge around the garden with a giggling toddler and merrily barking pooch trailing in his wake.
I felt utter joy.
I felt complete and I felt so incredibly grateful to have what I thought I would never ever be blessed enough to have.
A family.
We may not live in a show home, my clothes may be constantly covered in dog drool, spaghetti bolognaise and crayons, and my goals of creating a charity to provide emotional support for families affected by life changing illnesses and injuries may be taking me just a little longer than I had originally hoped; but I am living an incredibly blessed life, one where those I love are on the whole healthy and happy, so for this I must take stock and say 'thank you God' for all that I have.
I may have to start listening to that psychologist of mine and accept that I may not be ticking off all of my to do list and reflecting back on perfection in all areas, but my intentions are good and my heart is more or less in the right place and I guess that is pretty important I suppose.
Double tick in the box there at least!
The reality is that I am likely to remain a perfectionist and continue wasting time that I could be using to be productive, by beating myself up about wasting time not being productive.
That time is gone.
All I can do is focus on the present.
And right now I choose to learn from the past and apply those lessons to my future.
I will strive to be a little easier on myself if you promise to do the same.
Life flies by too quickly and we should not waste minutes focusing on that which we simply can not change- our past.
Learn from yesterday and apply it's lessons learnt to today.
Wishing you all love and forgiveness to yourselves.
Stay strong and stay happy.




















Friday, 8 May 2015

Birthday Beast!

So last week marked The Beast's 4th birthday.
As we celebrate another year on this Earth of ours (as I also do this week- why do the years seem to fly by even faster once you pass 30!), it is only natural to reflect upon what you have or haven't done over the years that are passing by way too quickly!
The Beast has given me so much independence and so much more of a fulfilling life compared to that which I lead before I accepted it, that I honestly don't know how to begin writing my homage to my partner in crime!
As I have mentioned previously in my ramblings, he/she/it has quite literally given me my life back and enabled me to fulfil me dreams of being a mummy-  but that being said, I did fight having to use it for some time as I saw having to use it regularly as losing the fight against my condition.

Thankfully, with a little help from my chronic pain psychologist I came to realise that I didn't need to fight against it at all, but rather accept the reality that my condition was not going away, so finding a way to live with it was the only way to move forward with my life and not be confined to my bed by trying to walk too often and then paying the price with hideous pain and spasms that would leave me bed bound for weeks/months on end.

Although I had had wheelchairs prior to my beauteous Beast, this shiny new speed demon, came complete with off road capabilities, whilst at the same time was slender enough to manoeuvre around shops, bars and restaurants! The wondrous thing even came with snow chains!
It literally opened areas of my old life back up for me, where doors had previously been shut both  metaphorically and literally.
The Beast has been on planes, trains and automobiles, as well as car ferries, fishing boats and London
buses, as well as the few London tube routes which are accessible- (don't get my rage started on this one!)
It's been lifted up restaurant staircases, and down to basement bars and comedy clubs, (not an easy
feet at 100kg without me in it!).
It's been stuck on a beach in the Maldives, and on the Isle of Wight- (both equally as glamourous I may add!), visited The Houses of Parliament, met royalty, stars of Strictly Come Dancing and the London GB teams and even the legendary Mr Kevin McCloud!!     (I love him!)
 It has served as a taxi to drunken friends in need of a lift home on my lap following a night out and doubled as a buggy, a shopping trolley, (my current record for Sainsburys bags on the back still stands at 12!), changing table and high chair.

It has dodged toddlers and tiaras in Disneyworld, been stuck in mud at The Isle of Wight Festival, served as a table for crisps and bar snacks, run over countless toes in crowded bars, torn up the dance floor at many a military ball and wedding (taking out a few more of those toes in the process!) and been smashed into a palm tree by an airline pilot who was out of his tree!
It has enabled me to go to weddings, nights out and concerts I would have previously never been able to go to and enabled me to join my family on treks where previously I would have had to sit in the car.
Most importantly my Beast has enabled me to be a mummy to my Barley and my Florrie.
I wouldn't be able to do so many activities with either of them if it wasn't for the Beast.
It's true, the poor love has seen better days and is looking a little worse for wear nowadays, with side lights, (or disco lights as they are used for on the dance floor at parties!), currently only half working, (in that I ripped one clean off!) and I am still missing the right arm rest and side panel.
The knob to my joystick is missing, (no doubt posted down some drain by my toddler), as are my hubcaps and Garry has just finished replacing my two front tires.
It is more often than not caked in mud, Florrie sticky paw prints and has been known to be splashed with baby food, baby puke and many other bodily fluids you would rather I not mention.
It has been used to hang poo bags on on dog walks and many of you may already know that it is a regular occurrence for me to forget the presence of said poo bags (and their contents!) and then drive my chair into restaurants, supermarkets and even beauty salons! Classy!
My dearest Beast- I love you and I feel so grateful for your presence in my life!
I would not have been physically able to do even a small percentage of these things without you by my side (or under my bum!)
To think I used to see you as a negative, I now see you are just my facility to keep living life at 100mph, (or more accurately 12kmph in optimum conditions!)
I too become another year older tomorrow and although like you my Beast, I am physically a little worse for wear, emotionally I am healthier than I've been in a long time and that is largely thanks to you.
I'm not sure that I could say that I'm becoming wiser with age, but I certainly am becoming more appreciative of the really important things in my incredibly blessed life.
Cheers to The Beast and cheers to you all, my family, friends and incredibly lovely followers to so kindly take so much time to write to me.
Here's to another pretty bloody wonderful year on this Earth!