This is why!

This has taken me a long time to write about.  Mainly because I didn't want it.

This is what I have..... it's Pants. Pants. Pants.

The following information will - I hope, explain my abstinence from going out in the evenings and generally not being able to take part in any extra activities over the last few years.  It has taken me this long to admit the diagnosis, and my Consultant has been very patient with my blase acceptance. He has humoured me well, and has the tolerance of a Saint.  With my relapse a month ago, and again last week, resulting in my request for medication - I could almost 'hear' his smile down the phone and request to see me ASAP.

Before now, I have put my lack of physical ability down to my age....I know, I'm only 32 - shut up and humour me, but recently have been struck down with such ill health, that even I, cannot hide behind a well rehearsed smile.  I am not bed ridden, nor depressed, and I certainly do not require any sympathy cards either!

Its dastardly appearance has come about from the prolonged high cortisol levels required for me to function over the last 10 years, we have had a lot of stress.  I admit it.  There I've said it.  This has weakened my immune system to a point that my body simply cannot fight anything anymore.

Please, please use this as an example of looking after yourself  I never, ever expected this in a million years, but stress is a real issue, and when heightened for such a lengthy amount of time, does and will cause real physical symptoms.

Myalgic Encephalomyelitis - M.E. is a chronic degenerative neuro-immune disease described in medical literature as early as 1935.  A Child or Adult with M.E. has serious immune and cardiovascular abnormalities, with resulting serious central nervous system consequences due to brain injury.  The disease snatches the vital life out of patients on the level of diseases like MS, AIDS, Mitochondrial Diseases and Cancer.  The unrelenting pain, cognitive impairment and exhaustion of ME are often literally unspeakable.  Most times M.E. strikes relatively quickly.  Once active, productive Adults and Children are suddenly robbed of vitality, with disability, ranging from completely bedridden to somewhat functional.  Variable disability and lack of treatments result in lowered or poor quality of life.  M.E. usually progresses to premature death due to direct and indirect complications of the disease.

I need to practice what I preach. Fact. And there are no parades for Drama Queens, so stop being one!

That said, I don't think it's necessary for anyone to run a bloody marathon for me just yet....  You'll know when it's time.  I'll have your purple lycra and tutus ready at the starting point.

Hakuna Matata

Life is never 'easy'..... I look at others around me and wonder if their lives are as chaotic and fractious  as mine, I constantly question my 'mothering' skills, and hoping that I am doing the best I can.  Sometimes I get it wrong, but mostly I do okay - and so far I have pretty awesome, kind and good girls - of which I am truly proud of.

Daisy hasn't always had top priority, when you are caring for a chronically sick child you would understand my predicament that I find myself in on more than one occassion. After all, her life has knowingly, never been at risk.

This is known as 'making do'. She has had to 'make do' for the majority of her life.  She struggled academically at school from day one, and now it is time to give more to her.

My next choice I hope will be the right one, either way Daisy is in a win-win situation (when I of course will be spinning out of control like an yo-yo in the hands of a toddler....).  As of next week, Daisy will be unschooled. She will not be working to an accredited curriculum, but will be learning creatively and more importantly life skills: driving, first aid, good manners and ettiquette, cooking, home accounts, how to run the family business etc etc.  For those that know Daisy you will also know that this will include animal care, ballet and dance.

Her confidence has been sucked from her by school, leaving her fragile and fractious, the fear of ridicule from both pupils and parents completely justified.  She is not lazy. She is not slow. But she is dyslexic, severely dyscalculate, dyspraxic and has ADD, however, she most certainly is a very capable and eloquent young lady when her confidence is able to flourish.  And so we are taking our time in allowing Daisy to grow at her own creative pace.  Since deciding on this path of education, her new found enthusiasm has sparked like a damp firework....

"Mum! We can go to the Meuseum and see Hakuna Matata!"
 I paused for a brief moment trying to decifer her coding before it came.... "Ahhhhh, you mean Tutenkhamun?"
 "Yep, that's the one!"
I know we'll be ok, understanding her mixed up wording is half the battle.... Wish me luck....My sanity will need  it!

The Truth, The Whole Truth And Nothing But The Truth.

Before I let you read my next Blogs, I need you to read the following Medical Journal.

http://bmb.oxfordjournals.org/content/early/2014/12/22/bmb.ldu038.full?keytype=ref&ijkey=L0BbFUxbrIlQvXG

Sure, it's quite long, and probably, for some parts, I may lose your concentration. It will probably take 15 minutes of your life to read.... Longer if you want to understand it.  But one thing is for certain. Even if you know Meg, or anybody else that has TS, you will not have realised the complexity and seriousness of the Syndrome.

I NEED you to understand what each and every parent/sibling/caring relative goes through on a daily basis.  This isn't a 20 minute session. This is 24/7, 365 days a year. Both sides need to face reality in what is achievable when dealing with such complex issues.

This is a Cradle to Grave Condition.  This child isn't going to miraculously recover!  The last time I checked Sainsburys Deli Counter (other Super Market Deli Counters are available...) I am sure they didn't sell X Chromosomes by the quarter.......

Parents and families need to Not beat themselves up about it, and friends and extended family need to step up and support their wonderful families in caring for a child with such complex needs.  It won't last forever, but if you're living it 365 days a year for the first few years, until it settles, it is not unreasonable to accept some help x

Of course, I am ALWAYS available for questions, and support. Much love. Mamma Cubitt.

P.s. Unless you have been gifted with a TS Girl - seriously. You have no bloody idea. Accept it and please help those amazing families that do x x

Fear....

Fear, can evoke many reactions. The fear of failing to better yourself in a New Year, can, for some be too much to bear.

Spiders can make me violent towards myself, resulting in a punched nose and a blood-induced CSI bathroom scene.... twice.  I can turn 'feral' in a nano second when faced with eight legs - no matter how big or small. If I think it 'could' crawl into my mouth at ANY point, all self control goes out the window.  This is followed by blood curdling and animalistic screams, and once in the middle of a Corporate meeting - the removal of ALL my top-half clothes (just incase it's leapt onto my chest...) and my skirt..... my fear is completely phobic.  As a child I hated them, and as an adult I hate them. They frighten me, and leave me with tingling armpits and adrenaline running down the backs of my legs.

As a child, my younger brother could frighten me simply by singing the theme music from Jaws. One minute my legs would be dangling over the settee, the next they'd be whisked up into the safety of the cushions, if he started in the bath, I would have to empty the water out only to discover he'd left me a present at the bottom - not of the shark kind....

I can quite easily scare myself, In fact this is such a common occurrence  I almost want to slap myself every day.  Take this evening for instance. I needed to go to the shop. I get in the car and upon pulling away, just glance in the mirror. For a split second I visualise The Mad Axe Man sitting in the back - so much so, I gasp out loud, before realising it was just the head rests silhouette in the back.  At this point I have already lost control of my language skills, my heart rate has increased so much so it's ringing in my ears followed by the obligatory tingling arm pits.

Loud noises make me loose control of my bodily functions.  On at least four occasions I have publicly 'dropped' to the floor to save myself from a 'crashing  plane' and yet when faced with a serious Air Baloon crash, I was very calm.  Well, I say calm... After hitting the only concrete square patch in a Military Base and being refused landing permission (like we had a choice!), taking four large trees down with us, and adapting the 'brace' position, being shot at by armed guards was the very least of my worries....

Fear of being a rubbish mum changes my reaction though.  No tingling arm pits or hysteria to be felt or seen.  When faced with lifes challenges, inner strength and an internal natural boost of citrus nitrate that enables me to fire on all cylinders.  I don't know what drives that maternal engine, but it is a very calm, serious and determined inbuilt system.

I know when I get into bed tonight, out of the corner of my eye, I will see a shadow. It will belong to the wardrobe or just my imagination, but as I leap into my bedroom, jumping over Craig and diving under the covers, my breathing will be almost hyperventilation level, which will give Craig Carte Blanche on frightening me to death.

This is of course after I have beaten myself up when getting out of the bath thinking that the fibres and threads from sewing, which are now hanging all over my dressing gown are Infact real Huntsmen Spiders ready to leap onto my face at any moment.

Fear is a funny thing, or so my family think.....

And so I want us all to enter into this new year without fear of our failings, but with our heads held high, and the knowledge that each and everyone of us, will embrace another year being as marvellous and inspirational as we were last year.

The Magic Flannel

So, this blog is really a quick update from today's appointment at the hospital, where we met Megs most efficient and welcoming Congenital Heart Consultant.

We are as yet, still waiting to see the CSF Specialist Neurosurgeon at the Q.E., yes, I know, it has only been a year and probably 20 phone calls directly to his secretary to chase this (one of which was when she was in University Hospital with shunt issues, and no-one wanted to 'step on his toes!') I normally wouldn't mind, but seriously. How is it possible to step on someones toes if they haven't done anything in the first place?  Anyway, I have written a very polite, but persistent letter to the Neurosurgeon, and copied in P.A.L.S - I wonder how long it will take for a reply......

The Heart Consultant will also write to the Neuro Surgeon, (and also the Private Heart Consultant we paid for earlier in the year) with the promise of  'some' relief regarding her tachycardia, down to a new drug that has been seen to improve symptoms, and wishes to see her again in four weeks to check everything is in place to make Meg's life a bit more comfortable.

We cannot wish for miracles, and every little bit helps!

In the waiting room, we were, as usual, privy to some very colourful characters, and both Meg and I discussed both the humorous and tragic situations that walked past us.  From Purple Patsy, who was head-to-toe in every shade, pattern and fabric possible in purple, complete with carpet bag, to the 60 year old (at least) in a very short mini skirt, spotty high heeled shoes and mac (which was just skimming the 'hem' of her skirt), making the elderly gentleman I was sitting next to comment in good spirit -"...... no full length mirror in that house!"

We witnessed nurses, going about their shifts like busy bees, and a smattering of Hospital Management, usually in navy suits looking very important with killer heels and matching clip boards.

We had an obligatory hot chocolate, before she went to have her blood taken from the latest Buffy impersonator.

I usually reflect on the journey over to the hospital, but todays reflection came on the journey home.  When I think back to the first horrendous throws of hospital life with a poorly child, I don't quite know how I did it.  The stress and hysteria that escalates internally, can only be described as a blow torch igniting a nylon nightie, toxic and suffocating.  You cannot bear to open up to anybody for fear of losing control of your emotions, which have to be suppressed like a magic flannel. It's a bit like trying to put a super-king size duvet in a tiny beaded purse, your grief is the duvet, the purse your brain and sanity.  I realise only now, that as a mother I have DEFINATELY earned my title, and am very aware that although Meg will probably need my support for a while, I am no longer teetering on the edge of madness.  The fog has cleared, and the view albeit patchy in places, is clearer than it has been for years.  Things are fine. They aren't great, and they are absolutely not going to change but...

I am truly thankful to the support of my darling husband, Daisy, my gorgeous sister, my very best friends and extended Turner family, without whom I wouldn't be in the privileged and knowledgeable position that I found myself in today.  Today I am going to change my ways.....I will no longer be looking after everybody else.  It is a very practical and profound valuation that I am very EASY to ask, and one would like to think that if you really knew what a tight ship we have to dance on, you wouldn't.  Therefore, it is with a brave heart and definite strength - I announce that unfortunately for everybody else, my girls and Craig and I, are going to come first.

*sighs and sits back from the Macbook*

It's about bloody time we booked to see the Northern Lights, the sky's clear enough to appreciate them now.

Thank you.

Doris...

So… this Sunday was planned to start off with a lazy cup of tea in bed, a catch up on my iPad, a long bath, slipping into something completely comfortable and hideous before actually having time to sit and have a conversation with my husband over breakfast.  Then I was going to prepare the most beautiful shoulder of pork and vegetables for a late lunch, followed by an apple and blackberry crumble - lovingly made with time and gentle patience.

…."I'm sorry? Are you writing about somebody else? Some fictional character in your fuddled head?!"

What actually happened.  Drifting in and out of that beautiful moment when you realise it's Sunday, and that self-smugness that one can indulge and embrace when you don't have to get up…… We were shocked into the land of reality and our normality, with the quiet whimpering coming from Meg due to her headache being at a level 10.  Bearing in mind, that this is the girl who after five hours of having major brain surgery was sitting up, chatting and eating a chicken wrap like she'd just been to the hair-dressers.  After leaping out of the bed, and assessing her, it became very clear that this was no 'ordinary' headache - this was a M & S all-singing all-dancing headache.

So used to this routine, I jump into the shower, Craig rings the ambulance, Daisy get's Megs hospital bag packed ready.  By the time the ambulance arrives (7 minutes), we are ready.  Stabilising her takes about 10 minutes, and then it's straight over to the hospital.  Following the ambulance, I get some time to myself to reflect on the fact that I'm not even stressed.  Just numbed by efficient routine required to cope with sadly what has become an all to common occurrence.

There is no point in us all going over and so we perform 'relay', which means I will do half a day, and Craig will do the other.  Thus allowing us both to have some 'home' time with Daisy.  Seriously, if our version of 'relay' was in the Olympics, we would have an open-top bus reception through Rugby town to celebrate our Gold Medals!

Anyway, moving on…the upshot is after having a CT, x-ray, bloods taken, failed lumbar puncture resulting in them taking CSF fluid straight from the valve in her head (nice), it was noticed that it was not possible to depress the button on the valve - which would point to a blockage, and although the opening pressure was 8 (low), the CSF fluid was cloudy (also not good).  I can feel myself wanting to type "blah blah blah".  Not in a "I can't be bothered, blasé type of way, but in a "Do you really want to be bored with all the crappy information that means absolutely diddly-squat to you?" - in a word - no.  And so she has been admitted and we will see what tomorrow brings.  I will update you.

Throughout all of the journeys we have been lucky to embark upon, I try to find humour in at least one point of the day (otherwise I will kill myself….) and todays humour and grounding came from the most beautiful and fragile biddy in the bed next to Meg on the Observation Ward.  Her name was Doris - Dementia Doris 💖

I had barely sat on the chair next to Meg when the following conversation took place:
Doris     "Hello Dear!"
Me         "Hello."
Doris     "Where's Suzanne?"
At this point I am briefly confused as my Mothers name is Suzanne.
Me        "I'm afraid I don't know where she is."
Doris     "Oh dear! Well what time is your test?"
Me         "Errrrrmmmmm? I'm not sure"
Doris     "Well I hope you've practised! Suzanne was probably before you wasn't she?"
Me         "Probably?"
Doris     "How old are you?"
Me         "44?"  my voice questioning my own replies….
Doris      "44! You never are! You must be a parent then, what grade is she?"
Me.         "What test is it?"
Doris.      "Piano!"
Me.         "Doris! Are you a Piano Teacher?"
Doris.      "Ofcourse I am! Can you play?"
Me.          "Yes Doris!"
Doris.       "Can you read music?"
Me.            "Yes!"
Doris.         "Jolly good."
At this point she starts to do something amazing…. something I have never seen or known anybody else to do (other than me), she starts to tap out music on the over-bed table.

I have done this for as long as I can remember… It all started when I wanted to become a secretary when I was a young girl, I was so intent on fulfilling my career, I even had piano lessons, as this was the nearest I could get to pressing keys down with my fingers.  By the time I reached High School, we had the most phenomenal Typing Teacher, who taught Touch Typing to music, I had completed and passed both my RSA I and II by the time I was 15.  When I wasn't typing or playing the piano, I
was tapping out conversations with my fingers on my imaginary qwerty keyboard, or tapping various pieces of music on the side of the chair or whatever was around at the time.  This has carried on throughout my life, like a comforting tic.

Doris carried on playing her 'piano' until the ambulance crew came to take her back to her home.  I
couldn't take my eyes off  her beautiful melodic fingers.  I could hear the notes each finger made and momentarily was lost in the most wonderful and uplifting music.

I hadn't really thought about this particular skill I have before. It is something that I take for granted
and perhaps keep quiet about because I have had it since I was little, and it is just part of me.

Later that night, I told Craig about Doris, unable to contain my excitement about her imaginary piano
playing he raised his eyebrows.....

Me.      "How amazing is that! I have never met anybody else ever who does it!"
Craig.    "You also do it in your sleep."
Me.       "Do I?"
Craig.    "Yes, your fingers moving at speed on their own is quite erotic."
Me.        "Craig!"
Craig.    "I'm always moving your hand over...."
Me.        "STOP IT!"
Craig.     "It's all very good until you need to go onto the next line of what ever you're typing and          whack my b*!#*  off because you were taught on an old fashioned typewriter......."

He also should be grateful I don't slam the piano lid shut......

The Ark

My luck with animals, seems to be getting better or so I thought until this mornings early wake up call…..

Let's start with last weeks 'gift' shall we? Darling Mog decided to bring Toby Toad into the house on three separate occasions.

The first one was intercepted as she was skipping down the garden, checking him over, he had a punctured leg, and I put him back in the middle of the pond, on a lilly pad and walked away fingers crossed for his leg to heal, and that the little horror didn't try and get him again.

The second time - a few days later, was dropped at the pedal of my sewing machine….any closer and I would have finished him off by squashing him flat doing 60 mph on zig-zag!

The third time was the day after at 6.30 am, when she came skipping up the stairs, and promptly threw poor Toby as if she was tossing the Caber - splat on our bedroom floor.  The conversation went like this:

Craig, "Oh god, the cat's been sick."
Craig, "Oh no she hasn't, it's a bloody toad!"
Me, "Is it alive?"
Craig "Yes, I don't think I can deal with this so early in the morning!"
Me, " Just get a bloody jug and put it outside!"
Craig, "I didn't even want a bloody Cat!"
Me, " Oh shut up and just put it out, be grateful she didn't drop it on your face while you were asleep"
Craig, "Grumble….Mumble…Bloody Cat! No! Don't look at me like that, you are a bad cat!"
*stomps of down stairs with HUGE toad hanging out of my plastic jug*
*stomps back up the stairs and stops half way*
"Hello beautiful! You're so cute…"

Yeah, right, of course he didn't want a cat.

Anyway, today is Sunday, we thought we'd have a lazy morning, cooked breakfast, before going for a drive this afternoon to collect something.  Picture the scene.  I'm up and showered but in my comfy slouchy clothes, Craig's dozing in bed, and both girls are still asleep…..

I put the bacon on and before I had time to turn it over, Meg came down and said, "Errrm, Mum…what is Mog doing?" Thinking that Toby Toads time was up, and that I'd see the last knobbly leg disappearing down Mog's throat, in one bound - I was by her side…..Mog was miaowing and swishing her tail, sooooooo pleased with herself!  And there on the floor in the hall was the most perfectly formed Gold Crests' nest….complete with just hours old, four baby birds.  She hadn't taken any out of the nest, but it was only going to be a matter of seconds before she was going to tuck into her 'KFC Bargain Bucket', and so I quickly swiped up the nest and yelled for help.  Daisy was as usual, heartbroken, and Craig was as useful as the toad incident earlier……

Can you believe, we drove all the way over to NUNEATON to the Wildlife Sanctuary with this tiny birds nest, all of us fretting over the outcome of the mornings trauma.

As we pulled up along the front of the Sanctuary (which was actually somebody's house), I wasn't sure if I'd done the right thing….40 minute drive time, had meant that Daisy had adopted and named all the little darlings, and it was going to be a tough call on whether she's leave them there or not.

Luckily we were greeted by a fabulous man, and had only taken two steps into the back garden when we were greeted by 2 foxes, and a tiny deer, that was roaming freely (like a dog), infact the deer had been adopted and bought up by their late greyhound, who had mothered most of the wildlife bought in!  There were 8 barn owls, stoats, a raven, parrots (one of them had even been on TV…..Britains worst pet - for its bad language….)  Daisy thought this was absolutely hilarious.   A turkey, rabbits, guinea pigs, two HUGE owls, and a Peregrine Falcon, pigeons, love birds, 3 other foxes, 4 dogs and numerous smaller more vulnerable mammals that had been bought in.  It was AMAZING!  Daisy handed them over (phew) and we had a look round.We will definitely keep updating their status.

On the way back home, I thought it was an appropriate time to let him know I'd received a text the day before asking if I still wanted a tortoise, as somebody was giving one away.

"NO MORE ANIMALS!" was the response I got, "What's the use of a tortoise anyway?" he went on to say.  I calmly sat and smiled at him, "You can't cuddle them, or stroke them! They don't do anything!"

Still smiling and looking straight ahead at the road, I nodded in agreement.

"Oh for gods sake! " he exclaimed, and sighed a deep sigh  "It doesn't make a scrap of difference what I say anyway."

I leant over and patted his knee and said calmly "Well done darling….how long has it taken you to figure that one out."

"Oh, and by the way, the tortoises name is ASBO."