FND

This is a hard one to write.

I have a problem with my breathing, having had scan after scan and test after test today I realised that it is more than likely a symptom of my FND.

This time last year I had never heard of FND, but now after my experience of loosing the use of my arm leg and speech for approx 10 days I have read quite a bit about it.

FND ( Functional Neurological Disorder) is still an unknown condition, sadly many GP’s do not have the knowledge or training to fully appreciate the disorder.

If I go to the Dr say with constant headaches, the Dr eventually sends me for an MRI, the MRI comes back normal, the Dr then concludes it is migraine. Does the Dr tell you that because all the tests were normal you are imagining it? The symptoms are in your head? One would hope not, but tragically many patients who have FND are still told that .

09F71DB0-E916-4538-8C53-F7AF03404FC5.jpegFND is slowly being more recognized, historically thought to be bought on by past trauma or recent trauma the symptoms are vast, worse case scenario, a sufferer looses the use of his arms legs or speech, tremors occur, tics, short temper , sleep disturbances, abnormal breathing, loss of muscle coordination, attacks of abnormal movement, loss of vision … the list goes on.

There are some illness’s that it’s accepted, probably even expected a patient will suffer from depression, for example a patient with multiple sclerosis may fear the future the uncertainty of not knowing how the illness will affect them as time goes by, but with FND there is a reluctance to talk about the depression or anxiety it can bring, along with the very real symptoms.

A person may be worried people will think it’s imagined, that they choose to be experiencing these symptoms that if they would just get over it they would be fine. The stigma of FND is akin to the stigma of mental health issues.

0D83F27C-F24E-4198-BABC-22DCFF3AF0E4.jpegFND is real. It is a neurological disorder that no one chooses to have .

It is not “in our heads”

It is not “ in our ability to get over it”

It affects people’s lives daily.

 

Knowing I have FND, has given me to some extent comfort, when my face twitches due to my breathing issues I know this is not “my fault”, putting a label on something can sometimes be a positive.

FND research and dr’s in general being given more specialized training is progressing, but there is a long way to go.

I am afraid of FND as it is so unknown, Every time I feel weakness in my arms and legs I ask myself is this FND and am I going to end up back in hospital unable to speak or move.

 

I would love your thoughts if you suffer from FND.

Lots of love

sara

3 weeks on..

So I’m sitting here  rather jealously watching my daughter and her friends splashing merrily in the paddling pool when the urge to write overcame me.

Today for the first time in about 15 years for 90% of the day I have managed to breath, and when I say breath what I mean is this .

My lungs are not filled with tar, nicotine or any of the 2000 chemicals every cigarette has, my breath has not been compromised by the cancer stick that I, only 3 weeks ago honestly believed I could not live without.

There have been many times I have given up, never for more than a week or 10 days  though before, the addiction inside me always won. I would tell myself that I would buy a packet (£10.70 a pack .. a pack a day … you do the maths ) only have one and then throw the packet away, looking back now I realise how  warped the thinking of an addict is, it was never one, because once those receptors in your brain are awakened they don’t go back to sleep, it is a repetitive cycle, the promising yourself that this would be the last one, the swearing to anyone who would listen that just one more , only one more . The ridiculous waste of money of buying a packet smoking one then depositing the rest of the packet in my neighbors letter box as I kid myself that I would never smoke again and he can have the rest.

Allan Carr’s teachings that you are not giving up at all, are so correct, giving up implies loosing something, having something of value taken away, while the word quitting can have positive connotations. When you quit smoking you only gain, as I am experiencing now, you gain breath, your skin becomes clearer, your mood is better and so much more.

The messages Smokers tell themselves, it helps relieve stress, it helps relax you etc are so false, it adds to our stress because as soon as we put one out we stress about when we can have the next one, so leaving that restaurant to light up in the freezing snow may feel like stress relief but only because we have been stressed about when we can smoke !

 

Sure I wake up in the morning and my first thought is still “ I need a smoke “ and there are times my family know to keep out my way because those smoking monsters and giving it one last go, rearing their ugly heads with the strength they have left trying to convince me just one more, but they eventually recede, they know they are loosing the battle.

Smoking addiction is known to be a harder addiction to get over then heroin, which I think is why so many of us believe we can do it, only to return to smoking after.

Having become rather ill a few weeks ago, which was NOT a result of smoking, my outlook on life has changed, this was not a conscious decision, I did not think to deeply about stopping smoking, but the reality of lying in my bed, unable to speak or move my leg seemed to have flicked a switch in my brain, giving me a terrifying glimpse of what can and probably would happen if I continued to smoke .

So my message to anyone out there thinking about quitting, don’t kid yourself that you will have just one more, don’t tell yourself that you will quit in a week or a month or sometime soon, we never know which cigarette will bring on that stroke , heart attack or even worse death.

Do it now.

All my love

sara

 

MY FATHER, MY TEACHER

It is coming up to 10 years since my father left us, after a long, difficult battle.

Approximately 7 years before his death he suffered a massive brain haemorrhage leading to him becoming paralysed on one side of his body, he speech was affected as was his brain, he struggled to walk and often would get frustrated after taking a few steps. Before his haemorrhage my father was a teacher, a public speaker and well-known in our community and beyond. He was head of Jewish Studies at the school I went to and was much-loved by his students.

After suffering the haemorrhage he became almost “child like” in some ways, he would easily cry, his concentration levels plummeted and he would become angry and frustrated easily. Yet even after his stroke his belief in God never failed, I remember him saying that everything God does he does with kindess, my father may have lost the use of his arms and partly of his legs, but to my father as a teacher, communication was everything and he thanked God for lettig him keep his speech.

My Mother is a strong power house, she dedicated all those years solely to my father, there were times he would direct his frustration at her, which is natural as she was the closest one to him.  She would be the one to pick up the pieces when his carer did not arrive in the morning to wash my father, or in the evening to ready him for bed, she could not just decide to go out, she carefully had to arranged her life around my fathers needs, which were immense.

Often Brain Haemorrhage is confused with a stroke but there are differences, A stroke happens when there is some disruption in the level of blood that goes to a person’s brain, causing the brain to be starved of oxygen and nutrients, as a result the cells in the brain die. Haemorrhage happens when an artery in the brain bursts causing internal bleeding as a result of this the brain cells cease to function.

Both though have similarities, they both happen very quickly with little warning,  sharp headache will come on abruptly, a sensation of numbness or tingling on only one side of the body will happen during a stroke, whilst a haemorrhage will have feelings on numbness in one or both of the arms and legs, both will have feelings of weakness in the arms or legs, memory loss, vision loss, confusion, feeling dizzy and nauseous and more.

High blood pressure, smoking, family history and age are all factors that could lead to both haemorrhage and stroke.

I have heard that after we lose someone dear to us, the persons voice is the first thing that starts to fade from our memory, thankfully my father’s voice is still clear to me.

My family life changed after my father’s illness, some of  my siblings living abroad returned to England. My Mothers home became a hub of carers, occupational therapists, and adapting of the bathrooms and bedroom to accommodate my fathers needs.

My father taught me, both in the physical sense and the emotional/spiritual sense, he taught me patience, he taught me how to care, he taught me love.  When I look back to my childhood, the family holidays we had are the memories that I treasure, he was a strong tall man, whom during the year worked so hard, our holidays were his escape, the place he could completely unwind, I remember so clearly his joy at pulling us kids along in the rubber dingy in the sea, every single holiday pronouncing that next year he would be buying a “real” boat. Yet even during those holidays we would inevitably meet people who would be delighted to meet him.

In Judaism, after a family member passes away we sit “shiva”, this is a mourning period of 7 days where people come to the house to pay their condolences, share stories, laugh and cry, it is an amazing process which can bring a lot of healing, during the week of Shiva, we learnt so much about my father, pupils whom he had taught many years ago came and shared with us stories of how my father changed their lives for the better, he had a knack at figuring just how to relate to his students, whom he fondly called “ladies”.

My family all knew how dedicated he was as a teacher, but we, in that week saw him through the eyes of those he had helped, I have in my home a folder with over 100 letters we received from friends and past pupils full of antidotes about him.

He was a man able to connect to anyone, no matter who they were and what age. He was a leader in our synagogue, so much so that on one of the Jewish holidays, the whole synagogue danced around his wheelchair as he was pushed all the way home.

I know, that when I tell people who my father was, they will light up as they talk about him. He was more than a man, more then a father, more than a teacher.

After his Haemorrhage I tried to spend time reading to him, though the experience was heart breaking each time, knowing I was reading to the man who was a giant I gained so much from it, and I will never forget the time we spent together.

If you are still lucky enough to have a father, treasure, respect and love him.

 

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