I know the meaning of existence…..

I know the meaning of existence

I know the meaning of existence, I’ve done it for a year.  Believe me, it has to be existence, because it isn’t  life, what I have done for the past year one cannot call living..

Years gone by

Two years ago, I lived in South Africa. I had my whole life ahead, a future to look forward to and lots of plans.  The man I’d lived with for 10 years (lets call him Mr Almost Right) As I was saying, Mr Right, myself and our five children were moving to the UK.

The Brady bunch

My daughter is 24 so after travelling the world for three years as first class cabin crew for a middle east airline.  She was coming to London.  She never really got on with Mr Right, her being a feminist and him a chauvinist, well they just couldn’t live happily under the same roof

Many years ago we went though a period of children moving in and moving out.  Instead of trying to make things work they ran away to their other parent.  My daughters father passed away when she was a baby so she was not as lucky as the others – and bless her, she tried her best to make things pleasant but she is very protective of me and every debate or little tiff would really upset her.

Mr Right and I always stuck together, we used to joke that it was the parents vs the children.  We had agreed fairly early on to put up a united front and not allow the children to play on our weaknesses – as children from divorced homes sometimes tend to do.  We stuck by each other and respected the choices our children made.  We knew they would come back, well lets say we hoped they would come back and they did.

Another wee little conflict area, apart from the alcoholic binges, was his parents – they really didn’t like me.  I was English, catholic and their son was in love with me.  No problem for most people…..most.

Deciding to leave SA

After going through robberies, a hit and run which wrote off my car and being hijacked at my gate at gunpoint by three black men, we decided it was time to leave our beautiful, beloved country.  We were going to leave South Africa.  We had planned for two years to move to another country.  It took us about 6 months to decide by a process of elimination, which country to go to.  The UK was not my preferred choice, I wanted to try Australia or New Zealand.

The deciding factor was Mr Right’s parents were living in Northern Ireland and they are getting old and his mother was not well at that time – so Northern Ireland it was.

Those left behind

Prior to leaving South Africa we went through a terribly difficult time with my ‘step son’ he was rebelling and really just trying to get his dad’s attention.  He really chose the worst time with the move and all involved looming.  Well this teenager went right off the tracks and I wont go into detail but he ended up expelled from school, living at a friend’s house and refused to leave South Africa.  We thought he might have had a mind change at the last-minute, but he didn’t – this was not good.

So in the few paragraphs above I have outlined 10 years of my life with a family as dysfunctional as most others, okay perhaps ours was a little bit more so than others.

The heart of the matter

I outlined all this very briefly and unemotionally – but trust me, the relationship I had with this man was anything but unemotional.  I have hated him more than I have hated anyone else in my life…. and I have loved him more than life itself.  Before I go further,  I want to change that last sentence to present tense.  That one little sentence which has held me captive for 10 years in South Africa, a year and a half in the UK, and probably forever more.

Our world fell apart

Moving to Northern Ireland in January last year was tinged with bad luck from the beginning.  Leaving my parents in South Africa broke my heart, they were my voices of reason.  So when all the stress involved in moving began to get too much we both (Mr Right and I) didn’t compromise and everything fell apart.

Leaving the Emerald Isle

In May last year my sons and I took the ferry, with 10 boxes of personal belongings most of the boxes were my sons instruments.  We moved in with a cousin I hadn’t seen since I was twelve-year-old.  Within a month I had arranged a house, furnished it and enrolled my sons into college to further their education.  I am thankful to the government for much of this even though I had to desperately fight tooth and nail every step of the way for anything and everything.  When I look back I think that a divine intervention created all the obstacles to keep my mind busy and avoid my dropping into a heartbroken depression – well, that and the fact that I really had to keep a brave front for the sake of my boys.  Their lives had also been torn apart.

Thank goodness for my sons

So I went through a melt down, it has left me broke, alone, scared, unmotivated, disinterested and sad. I have no job, no prospects, I have a health condition which has grown rapidly worse.  All of this and still I can proudly say that I manage to put a smile on my face every time my sons walk in the door. In a way my kids have saved my life, without them I think I would have fallen to pieces.

Living in Limbo

The love of my life still lives in Northern Ireland.  His son will be coming to live with him later this year.  We still chat on the phone, email and text messages.  Both of us find it hard to say goodbye.  We know our love is strong but we also know we cannot be together right now.  We have taken a celibacy vow until we meet again, we will have to reassess then what to do.  We trust one another emphatically and can therefore live apart yet together in heart.  I don’t know how long this will last but I am happy with this arrangement for now.

New beginnings

Now I have a little voice inside me, deep down inside, telling me to get my life back together again, to start to live again.  It’s telling me to look for work, find my true independence, make friends, focus out – focus out, stop focussing in.  Look at all the life and beauty (not that there’s much of that where I live) but Iam minutes from the sea, where there are some of the most beautiful and expansive beaches in the country.  Explore, learn, get excited, be interested, give myself to the world and take back my life.

So, my friends – I’ve been knocked down but I’ll get up again.

Today is the first day of the rest of my life, wish me luck!

Socially crippling disability

What is a socially crippling disabiity.

When explaining my condition in layman’s terms I use other better known conditions to describe the seriousness of this limiting and socially crippling disability.  There are a few I can think of off the top of my head:  Epilepsy, diabetes, Parkinson’s, Alzheimer’s, bipolar and the two horrid ones I am unlucky to have, Narcolepsy and Cataplexy.    These awful conditions affect a persons entire life and many have no known source or cure.

What is this disability

Well firstly let me tell you that I don’t refer to this as a disability except in formal reference. I call it a condition, it is fairly well controlled but I still have days where even medication doesn’t help

Narcolepsy – a sleeping condition

My description of Narcolepsy is the uncontrollable need to sleep. Then there is the bad side of it, whenever I am sitting comfortably, quietly, warm, in a dark place, watching movies, sitting in waiting rooms, in church, at prize giving, etc….
I just black out. I don’t even feel tired but suddenly I “wake up”. I feel like I have been sleeping for hours but normally I wake suddenly before anyone even notices.

NHS defines Narcolepsy as a long-term (chronic sleep) disorder that disrupts a normal sleeping pattern. Symptoms of narcolepsy can be mild or severe, and include:

•falling asleep suddenly, without warning (known as ‘sleep attacks’) •excessive daytime sleepiness (EDS) •temporary muscle weakness when responding to emotions such as laughter and anger (cataplexy)

Complex Cataplexy

This I only experience when I am extremely tired or emotionally distressed. My legs just sort of buckle under me, I walk but they don’t co-operate. My arms jump, jerks I cannot anticipate or control. Its awful. This is worse than Narcolepsy but doesn’t happen as regularly.

Together with both of these conditions there is the vivid dreams. Dreams that are wild, colourful, creative, imaginative and distinct but very disturbing.

Lancet studies report Cataleptic attacks are a sudden loss of muscle control. This may be just a slight feeling of weakness, such as sagging facial muscles. The head might drop forward or worse, buckling of the knees resulting in total collapse of the person.

In severe cases, the patient can become completed paralysed, lasting for a few seconds to several minutes. During this time, the patient may seem to be unconscious, but can be fully awake and temporarily unable to move. A very frightening situation to be in. These attacks can be brought on by emotions: anger, surprise, fear or even laughter.

How did I get this condition?

I don’t know. I know that I first realised something was wrong during my first pregnancy when I was knitting baby jackets, I would fall asleep while knitting. My sister always said ” you are the only person I know who can knit and sleep at the same time.”

NHS reports that Narcolepsy is a relatively rare condition. The exact number of people who are affected by narcolepsy is unknown because the condition often goes unreported or is not diagnosed correctly.

It is estimated that narcolepsy affects 1 in 2,000 people worldwide, which is the equivalent of 25,000 people in the UK. It is also estimated that around 80% of people with the condition are undiagnosed.

Narcolepsy affects men and women equally. The condition usually begins during adolescence (the teenage years), although it can sometimes start earlier. Cases of narcolepsy that have started later (during middle age) have also been reported.

Narcolepsy does not usually cause any long-term physical health problems, but it can affect a person’s personal and professional life significantly.

Diagnosis:

I visited a doctor who was concerned enough to send me to a neurologist  for an EEG.  This is back in the arc ages before Sleep clinics and sleep study was known of.   All sorts of wires attached to my head,  I was placed in a dark room while the machine I was hooked up to measured whatever it measures.
Straight after the procedure the specialist told me I have Narcolepsy and sent me home.  My doctor was very vague about the diagnosis and just gave me a prescription of medication advised by the specialist.

Treatment:

I was originally given a prescription for a very strong stimulant drug. My medical aid wouldnt pay for these as they were classed as dieting medication. I remember being on diet one time and taking amphetamines and feeling the same effect as the prescribed medication. I was able to buy this over the counter at more than 75% less that I paid for the other medication. So I started on a twenty year course of amphetamines – one a day did the trick, a half extra helped if I was really tired

Technical explanation:

Pathophysiological studies have shown that the disease is caused by the early loss of neurons in the hypothalamus that produce hypocretin, a wakefulness-associated neurotransmitter present in cerebrospinal fluid. The cause of neural loss could be autoimmune since most patients have the HLA DQB1*0602 allele that predisposes individuals to the disorder. Treatment is with stimulant drugs to suppress daytime sleepiness, antidepressants for cataplexy, and gamma hydroxybutyrate for both symptoms. Because narcolepsy is an under-recognised disease, it is important that general practitioners and other primary health-care workers identify abnormal daytime sleepiness early.

Lancet. 2007 Feb 10;369(9560):499-511.  Narcolepsy with cataplexy.  Dauvilliers Y, Arnulf I, Mignot E.  Source  Neurologie, CHU Montpellier Hôpital Gui-de-Chauliac and INSERM U888, Montpellier-France. ydauvilliers@yahoo.fr

How dangerous is Narcolepsy?

Narcolepsy is not dangerous in itself, but it is usually accompanied by Cataplexy. A cataleptic attack could happen at anytime in the home, at work or in leisure time or sport.

A sudden total collapse could be potentially life threatening, if operating or close to running machinery. Friends and work colleagues should be told exactly what to do if an attack does happen.
•Check the person is in safe position to recover away from other dangers, electrical appliances
•Make sure the person is as comfort as possible, checking there is no unnatural limb or body positions
•Allow the person to recover in their own time

Uncontrollable “Sleep Attacks” can also develop into dangerous situations e.g. operating machinery, driving a car or even cooking.

It is your legal obligation to inform the Driver and Vehicle Licensing Agency (DVLA) about this medical condition

The problems created by this disorder can be social and financial. Some people may find a collapsed person disturbing and panic. Getting suitable employment after being diagnosed with this condition would probably be hard to do, as you should always inform an employer for insurance purposes.

Please Note:this information is not medical advice.
Always seek the advice of your doctor if you have a health problem.