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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,


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- 
Health care assistants
Hydro therapists
Maternal medicine consultants
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.