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.