Searching for Silver Linings

Today, I want to try and find a way to pull something positive out of my dealings with Doctors recently. It is quite a challenge, I think that the answer lies in first acknowledging exactly what the difficulties are.

It seems that the recurring issues I encounter, right across the classically trained western (NHS) medical spectrum, from Nurses to GPs to Consultants & Surgeons are often that they:

  1. Patronise me, assume I am ignorant of all medical terms or go the other way and speak in Latin
  2. Don’t listen to me or take my concerns seriously
  3. Make me feel like a time waster and try to rush me out the door
  4. Eye contact, reassurance and  simple KINDNESS are nearly always absent.
  5. Close their minds to the suggestion that other methods, treatments, Doctors might work better than them. If you are brave enough to openly discuss one with a Doctor a likely response I have discovered is basically a threat ‘well…do so at your own risk…’etc

The fact that these are such simple things to rectify makes my heart ache! I do appreciate that being a Doctor must be a tough job and some, like my Neurologist and Paramedics I’ve encountered are real-life heroes, but the reality is that most are not. I can see that showing the same level of compassion to someone with a runny nose and a child with terminal cancer is a challenge. But as Doctors, I believe they should be trained to do this. It should be a priority. A Doctor’s first and foremost responsibility is to DO NO HARM. By doing these things, the Doctors are failing to meet their first aim. By doing these things to me they cause great harm and ultimately make recovery slower.

DoNoHarm

My thoughts on this have arisen from many encounters but most recently an incident with a GP I went to see today. I went, concerned about the side affects of long-term NSAIDs use, to ask for advice on how to slowly stop taking them and to ask if a GP might know of any local Homeopaths or perhaps any GPs also practicing Homeopathy. I left about 5 minutes after I entered the room, my questions went un-answered, my mention of a homeopath was met with a smirk and ‘everyone I know is very skeptical about the point of those type of things‘ and an even more toxic-looking prescription thrust into my hands, (unexplained and un asked for) accompanied by another sick-note signing me off for 3 more months without any explanation whatsoever….

Some more of 'Doctors' wisdom...

Some more of ‘Doctors’ wisdom…

I am a well educated, intelligent (if I do say so myself!!) young woman, who is immensely lucky to have a stable, close and loving family supporting her. However, I am ill, I need more help and information than they alone can provide. I feel desperately for those in similar situation to me but without family like mine. Where can I/others turn if not to their Doctors?

This could be me!

This could be me!

With that in mind, I suppose that yet again my experiences are showing me that, as ever, the silver lining, the positivity, the hope is to been seen in the way being in this situation, encountering these medical road-blocks is highlighting my blessings. One of which is that through their behaviour Doctors are forcing me to educate myself further, to open medical text books for myself, to take control of my own life and my own health. Today I discovered The British Homeopathic Association and saw that you can even get NHS referrals to them!

By far my greatest blessing, highlighted to me today though, is my family, my husband and my friends. They are omnipresent in all my challenges, I can feel them with me in the Doctors waiting rooms and in those stuffy offices. Even if they can’t physically always be with me, I know they are there. Whatever happens, knowing they are here is empowering and freeing. As long as we stand together and keep choosing love then I believe any obstacle is removable. One Love.

joys

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Does Anyone know a Doctor?

Toy

credit: apluseducationaltoys

I can’t really remember a time when I didn’t go to see specialist Doctors. As a child they were trips I sort-of looked forward to in a not-really-understanding-whats-happening sort of way. I got to spend time alone with either my Mum or Dad (usually Mum), have their undivided attention (a rare treat) I got to go in Headteacher’s offices and in the ‘small’ rooms at school, where they had scratchy 80’s sofa seats,and level reading books. Sometimes we’d even go for a drive into the city of London, either to a big hospital building or some posh houses in Harley Street. All these places were united by the fact that they all had the same toy. Everywhere I went this toy was there. I still see it in Doctors today, it’s not a very exciting toy. I know it’s practical- mildly entertaining – no mess – but surely in the nearly 30yrs I’ve been visiting Doctors someone would’ve made a new toy for waiting rooms!

I’m not sure what the titles and exact qualifications of these people I saw were, I think alot of Educational Psychologists, Behavorial Therapists, ENT Consultants, Dyslexia tutors, GPs, Consultant Rheumatologists and more. I can’t really remember the names or faces of these people, it was too long ago, there were too many, I saw them too briefly. Perhaps an ENT man we called Dr.Potatoe – becuase he pulled wax that looked like potatoes out of ears?? Perhaps a tiny dyslexia tutor, who smelt of Lavendar soap Mrs Cowell?? I’m not sure. This was all long before I was diagnosed with Epilepsy. No-one knew what was wrong just that something was not-quite-right. I said one thing, would do another and often seemed vacant, in my own world entirely. In some areas, I was academically way ahead of my peers but then in others drastically behind. I had ‘selective hearing’ and I was furious most of the time. Frustrated with myself, my family with pretty much everything. I was aggressive and frigtheningly violent often. I was not an easy child and my family…well they are my long-suffering-patient-forgiving heros.

At age 15, I guess my body finally gave up it’s fight, unlocked part of it’s secret and I had my first Grand-Mal seizure on a train on my own in Devon at about 7am on my way to a friends birthday party. I dont remember anything, well maybe a paramedic and the green train seat, and Exeter Hospital sick bowls maybe. I’m not sure. Following that I guess alot of things in my childhood fell into place, I had always been epileptic having petit-mals – small absences- constantly for years. I don’t really remember much about the actual diagnosis. I remember a lot of different drugs which is probably why I don’t remember those first Doctors. I remember one white hospital hall, my mum giving me a sweet. She might as well have given me Acid for the effect that bit of sugar had on me! The hall turned inside out and swirlled around me. I can see it now, it catches in my throat. I don’t like to remember that. I wished for a while I hadn’t been diagnosed but now I’m pleased I was. My mum must’ve been so scared but she never showed it, it was like I had a cold. Always, just a cold and we’d sort it out soon.

When things had settled a bit. I went first to see a Paediatric Neurologist in London. I saw her at a hospital and I can’t remember which one or her name (I’ll ask mum). She was a lovely woman. I remember her office was bright yellow and full of toys and books. She had a medical 3D brain jigsaw which she showed to me and explained how epilepsy works. Mostly she was calm, she listened, she was interested and I felt that she cared. However she was a Paediatric specialist and I was getting a bit old to be under her care, I remember she kept seeing me a year longer than her other patients but then I had to find a new Neurologist.

This Machine

Credit: Outblush

Then it was Does Anyone know a Doctor? and my search started. I hadn’t realised till then how lucky I’d been with her, also what qualities in a Doctor mattered most to me and what had the greatest affect. I want this to be a positive page so I will not name and shame, nor will I remenise on the negative. I will say that I embarked on a tour of London’s Neurology circuit. My mum came along for the ride too. In retrospect I pity some of the unwitting Doctors we turned up in front of. A wounded caged lioness, protecting her cub ain’t got nothing on my Mum with her notepad in an NHS Doctor’s office I tell you! A sight to behold! My Mum, aka The Lioness with a Notebook and a pencil like this!

You see, as I discovered Epilepsy is bread&butter for most Neurologists, it is to Neurology what flu is to GPs. Run-of-the-mill B.O.R.I.N.G daily grind. Unless you have uncontrollable degenerative seizures, which I am blessed not to then really many Neurologists won’t give you the time of day.

What was I looking for? What makes one Doctor, who has studied the same any different from another? This is what:

  1.  Giving me Time
  2. Un-Patronising
  3. Listening
  4. Make me feel important and valued/having genuine interest in me
  5. Including my family
  6. Taking into account my environment.
  7. Someone who understood what Patch Adams meant when he said that: “The purpose of a doctor or any human in general should not be to simply delay the death of the patient, but to increase the person’s quality of life. ”

An apparently simple list, but amongst  many Neurology teams these things are precious-few and far between. It was at my lowest point, when I had left yet other Neurologists office in a flood of furious, frustrated tears after he’d made me feel like a time-waster that I finally found the Doctor who ticked all of these boxes. I am going to name him and celebrate him because I think that if anyone is ever in need of a Neurologist then he is without doubt your man.

His name is…wait for it: Prof. Michael Koutroumanidis originally from Athens hence the wonderful name!

Dr. K is quite simply the best Doctor  and most amazing person I’ve ever met, now infact a Professor (although extremly humble about this). He has helped with my health and wellbeing more than any other person ever. True Fact. He seems to be a very calm person,  softly spoken, not unlike some of my buddhist friends. He is warm and treats me like a friend. He has an increidble, mind blowing memory, – that or he reads every note he’s ever written on me before our meetings- he can recall pretty much, word for word everything I’ve ever tod him and repeats them to me often years after I said them! He listens to me, he looks into my face when he speaks, he asks about my family- he knows their names! He is honest with me and even though he probably has come to see me straight after seeing someone with uncontrollable degenerative seizures he makes me feel equally worthy of his time too.

The impact that these simple things have had on me, my ability to manage my epilepsy and my confidence is immeasurable. He showed me what a difference a Doctor can make. It is not an overstatement to say his support has changed my life and I think of him often. There is hardly a day that I am not grateful to have him as my Neurologist, to have had the family support I had to find him. He makes me have confidence in the future and gives me hope for our future understanding of Neurology.

Thank you Proffesor! You rock!

Feel the EEG Love!

Feel the EEG Love!

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Amber Healing

As well as plants there are several other remedies for pain and inflamation that your consultant won’t tell you about. I am sure there are many more but here are a few I’ve learn’t about and am keen to explore further.

Amber Healing

I had heard from wonderful Mamma friends of mine about them using amber necklaces to soothe their children’s teething, but I didn’t know too much about it and I didn’t know it might work for grown-ups too.

What is Baltic Amber?

Although it feels as hard as stone, Baltic amber is infact a fossilised resin produced by ancient pine trees, which grew in Northern Europe, around the Baltic sea 300 million years ago. Pieces of amber, naturally torn from the Baltic Sea floor, are carried ashore by waves and collected at ebb-tide. Harvesters, furnished with nets at the end of long poles, wade into shallow waters of the Baltic Sea and drag their nets through seaweeds which may contain masses of entangled amber. Some rake amber up from boats.

How does it heal?

As it is made from resin (similar to frankensince) Baltic amber has high concentrations of a unique substance known as succinic acid. This powerful antioxidant has been shown to stimulate neural system recovery, ease inflammation and bolster the immune system, it helps restore strength and energy to the entire body. Baltic amber is a natural analgesic and possesses anti-inflammatory properties, so is often used to ease joint pain. Baltic amber  is one of the most important natural sources of succinic acid in the world. Baltic amber warms against the skin, holding heat and slowly releasing succinic acid safely and naturally.

Ancient Amber:
Baltic amber was highly prized among the ancient Nordic peoples, as well as by the Celts, the Mediterranean peoples, Arabs, Egyptians and the Chinese. Amber gems were not only valued for their unique beauty but also for their healing and protective qualities. Amber was revered by these ancient peoples as a medicinal substance, and many healing elixirs have been made with it down through the ages. Amber is used to clear the chakras, to fill the body with vitality, alleviate stress, and is believed to help draw disease out of the body and encourage healing. It also acts as a natural antibiotic and has a long history of use in healing wounds. It is touted in Russia and other European countries for its youth preserving and cell rejuvenating properties. It is commonly used in anti-aging formulations and to aid recovery of cancer patients after undergoing standard medical therapies.
I am slightly sceptical about Ambers ability to help inflammation as it is a very hard, strong substance which has lain on the earth for millenia, been subject to immense, heat, pressure and cold, why should it’s proximity to my skin enable it to release this magical succinic acid? However, it is beautiful, I am always up for trying non-invasive things, I deserve a treat! and even if it’s only a placebo, I’m not a scientist- if it works who cares?! With that in mind I have just ordered myself a Medical Baltic Amber Bracelet quite expensive (£18 inc.postage) but a treat with healing potential is sometimes required and I am blessed to be able to afford an experiment. When it’s arrived and I’ve worn it for a bit I’ll write some more then.

 

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My Top Ten Strangers

Today, due to the ongoing slipped discs in my back I have mostly been doing this punctuated by an excruciating walk to the GP for prescriptions, (what a thrill):

In my mind however I am doing this:  Spot the difference!

Kite girls

credit: Miami Kites

I therefore decided that this would be a great day to celebrate my all time Top Ten Awesome People I have never met!

In no particular order of Awesomeness:

At number one His massive-off-the-scale-awesomeness: Nelson Mandela / Madiba. An incredible human being, beloved by a nation and by most of the world, I have no words to describe the impact learning about him had on me. I was lucky enough to work in South Africa for a while and will never forget the standing ovation and deafening applause I got from quoting him in a speech about girls education. This is that quote which I still meditate on daily.

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.” I recently learnt from an inspirational blogger (The Progressive Parent) that Mandela was infact quoting Marianne Williamson.

No. 2: Layne Beachley SEVEN times world surfing champion. In a male dominated and frequently outright sexist sport Layne is a surfer I’ve watched with awe. Unlike the Kelly Slaters of this world (unworthy of even a hyperlink in my oppinion!) women like Layne have to work twice as hard to be allowed to achieve the same success.

“There are so many people out there who will tell you that you can’t. What you’ve got to do is turn around and say,’I can. Watch me.”

No. 3: Ellen MacArtur The fastest person to circumnavigate the globe single-handed (in 2005)and she is a SHE! I  love sailing but I’m not very good at being alone and whilst the sea is magical to me I have huge respect for it’s power and I can’t begin to imagine the challenges she faced, alone out in the deep. Her book ‘Taking on the World‘ totally gripped me. I found in it, like with so many sea faring tales, a deeper more profound understanding of  how humanities own story is inexplicably intertwined with the oceans and wisdom gleaned from it is relevant even to a landlubber like me. Ellen’s words stay with me when I feel like my ailments are swirling around the tiny vessel that is my earthly body:

-“When I was out there I was never ever alone, there was always a team of people behind me, in mind if not in body”

-“Courage is not having the energy to go on, it’s going on when you do not have the energy…”
-“You don’t fear for your life in the middle of a storm, you can’t really afford to”

 No. 4: Patch Adams Reading this man’s autobigraphy puts a lump in my throat and an ache in my heart. To me he symbolises hope, compassion, love and common sense. In the course of my life I have so far seen a great many Doctors in many different hospitals around the UK for a variety of different afflictions, not least for my epilepsy. So many infact that I want to make this topic ‘My search for a Doctor’ a separate post entirely. All those Doctors, specialising in a myriad of medical disciplines, largely trained in the West, some ‘good’ and some less so, all, every single one of them have one unifying fact in common. This fact is that they see the human body as being made up of distinct sections and they all specialise in their own very specific sections. They do not study the other sections and do not consider the possibility that these sections interact. According to these doctors not only do these fleshy-biological-humanoid sections have no relationship to each other they also exist in isolation to their community and environment. To me, this attitude at the heart of so much western medicine seems fundamentally flawed and totally non-sensical.

Dr. Patch Adams is pioneering holistic medical care based on the belief that one cannot separate the health of the individual from the health of the family, the community, the world, and the health care system itself. His model is organized around these extremly simple principles which are totally lacking in any hospital I’ve ever been in:

  • Care is free.
  • Patients are treated as friends.
  • Ample time is given to the care interaction (e.g. initial interviews with patients are 3 hours long).
  • All complementary medicine is welcomed.
  • The health of the staff is as important as the health of the patients.
  • Care is infused with fun and play.

It is one of my most despearte and feverent hopes that this type of thinking will become a global standard in my lifetime.

“The purpose of a doctor or any human in general should not be to simply delay the death of the patient, but to increase the person’s quality of life. ”

 No. 5: Tenzin Gyatso, 14th Dalai Lama Probably features on alot of ‘Top Ten’s’ but I felt that I can’t really leave him out as our home is festooned with more of his quotes than any other. Although I am Christian by culture, many other faiths, particularly Buddhism speak strongly to me and the Dalai Lama’s personal story is also about as inspiring as stories come!

-Happiness is not something ready-made. It comes from your own actions.

-If you can, help others; if you cannot do that, at least do not harm them.

– If you want others to be happy, practice compassion. If you want to be happy, practice compassion.

– My religion is very simple. My religion is kindness.

– Remember that not getting what you want is sometimes a wonderful stroke of luck.

No. 6: Dan Eldon artist, activist, adventurer (1970-1993) My Mum gave me ‘The Journey is The Destination‘ when I was doing my GCSE Art. It totally BLEW MY MIND. MAAAAN! By that age I had already visited Kenya several times, fallen in love with the country, the people and of course, the elephants. I spent hours looking at his sketch books, drinking them in and researching the young man, only a few years older than me who had made them and then lost his life so suddenly and brutally. Dan Eldon taught me that creativity heals, that being creative does not have to be a scheduled thing. The idea that ‘Now it is the Art Lesson. We must do ‘Art’ and use our creativity’ is completly wrong. Creativity infuses daily life and I need not look further than my window for inspiration, great and powerful artistic opportunities are there for us all if we only reach out and take them. Dan Eldon’s books helped me to reach out and realise that ‘The Journey is The Destination‘, every journey, be it the journey of happiness or even health. The Journey itself is the true destination and therefore we should strive to embrace the wonderful array of journeys we find ourselves on now.

No. 7: Laird Hamilton A fellow Pisces, water lover and there our similarities come to an abrupt end! Surfer and big wave rider. ‘big’ seems like puny weakling of a word to describe the gigantic moving water mountains that Hamilton rides. One human being’s ability to survive, against the odds on some of the Goddesses wildest creations amazes and inspires me. Hamilton along with the likes of Gerry Lopez are the kind of surfers I can watch, in jaw-dropping-stunned-awe for hours on end. They illustrate why surfing is like no other sport, that there is a deeper more spirtiual side to it whether it be in Lopez statement, (on towing into Peahi/Jaws) “Okay, shit, I guess this is a good day to die!” or Hamilton trying to explain what surfing really is… “For those searching for something more than just the norm. We lay it all down, including what others call sanity, for just a few moments on waves larger than life. We do this because we know there is still something greater than all of us. Something that inspires us spiritually. We start going down hill, when we stop taking risks.” These men, these surfers, remind me to live in the moment, because afterall, the moment is all there really is.

No. 8: Betty Williams. An ordinary woman and co recipient of the Nobel Peace Prize. On my list after I saw her speaking on TV at a youth rally in Canada in 2009. She is here because of he ordinaryness, a mum, a receptionist interested in gardening and dressmaking and founder of  the World Centers of Compassion for Children International, in honour of His Holiness the Dalai Lama! She has travelled the globe recording the testimonies of children who have been subjected to horrors beyond belief and has dedicated her life to developing a new paradigm within global cultures and governments that embrace, nurture, and empower children with a compassionate world view.

Women are strong enough to help the men to understand. They are the givers of life and they must now protect life’.

No. 9: Dame Jane Goodall DBE, is a mother, grandmother, a British primatologist, ethologist, anthropologist, and UN Messenger of Peace. She carries an aura of Peace whenever I’ve heard her talk and a feminine strength and passion for the earth and its creatures that is almost tangible. I would love to meet her and hear some of her wisdom first hand.

‘People say to me so often, ‘Jane how can you be so peaceful when everywhere around you people want books signed, people are asking questions and yet you seem peaceful,’ and I always answer that it is the peace of the forest that I carry inside.’

and last but by no means least! No. 10: Richard Leakey politician, paleoanthropologist and conservationist. If photo’s speak a thousand words then this one does to me:

In 1989, Richard Leakey burnt a pyre of elephant tusks to confirm the Kenya Wildlife Service’s commitment to a ban on ivory. image credit: Andrew Holbrooke/Corbis

This act caught the attention of world media more than many had previously thought possible and Leakey made great progress protecting Elephants in Kenya. However, there is much still do. Leakey spearheaded a campaign and reform that benefitted, Elephants, Kenyans and the world.

‘Earlier 100,000 elephants lived in Kenya and we didn’t have any noteworthy problem with it. The problem that we have is not that there are now more elephants’.

So there it is my top ten awesomest strangers! Whilst I lie here I wonder what they are all doing right now? If they ever have grey horizontal days too? I suspect they do, but I also hope that like me they are kitesurfing in thier minds on those days too!

 

 

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