An open letter to my family & friends

To my Dearest friends and family, acquaintances, blog followers and web-friends,

This is an open letter to you all. If you only read one thing on this blog let it be this. Lately I have really struggled watching people I love suffer from; back pain, neck pain, fibromyalgia, sciatica, RSI, tennis elbow, joint pain, headaches, migraines, gastrointestinal and urogenital conditions, repetitive coughs, eczema, allergies, tinnitus, dizziness, repeated infections and more physical issues. Some of these conditions are mild, but many are recurring and life-interrupting for you.

I have listened as you have told me that these things are;

  • “because I have bad posture”
  • “because I am getting older”
  • “because I should really have surgery on it soon!”
  • because I must not bend/lift/run/walk like that or it’ll get worse”
  • “because I have been told my leg/hip/back/arm/foot is out of alignment”
  • “because an MRI scan showed I have slipped/prolapsed discs / degenerative disc disease”
  • “Because I didn’t wash the pillows/dry my hair properly/went swimming”
  • “Because it runs in the family so I obviously have it too…”

Most of the time I just bite my lip, listen and nod and try to hope that somehow you’ll find a way to heal. Commonly I have noticed that nearly everyone believes two things about their condition; firstly that it has a physical cause and secondly that you can only manage it and never be cured. Many friends and family tell me how they simply ‘can’t lift’ anymore, or ‘sit-like-that’ or they will get worse. Every time I hear that, I remember how I used to think that myself. Thinking ‘I am broken, I will never…’ but the thing is, now I do ALL of that and more! And I’m not lucky. I am simply informed and courageous enough to act on my information. I am writing this to you because it is my greatest hope that someone out there might listen and take courage and believe in a complete cure too.

When you ask;

  • How’s your slipped discs?
  • Have you tried this therapy/ this piece of machinery to help you?

I know you ask with love, even though I’ve tried to explain a million times now; that just because an MRI I had two years ago showed three slipped discs does not mean they were the root cause of my pain. I have infact put that diagnosis out of my mind entirely, it’s misleading and unhelpful.

The truth is actually that the root cause of my ‘back pain’ is the same root cause as your: fibro, sciatica, RSI, tennis elbow, joint pain, headaches, migraines, gastrointestinal and urogenital conditions, repetitive coughs, eczema, allergies, tinnitus, dizziness and repeated ear / eye / throat and chest infections! It really is. This might seem like a mad and somewhat arrogant claim and certainly one many do not accept. However, a growing, number of leading scientists do now agree. The truth is that all these conditions are merely symptoms of one main factor; stress. Now it is crucial to point out that this does NOT mean that it is ‘all in your mind’ infact I now believe that many more conditions are stress-induced than have a physical cause.

 So if it’s not ‘all in my mind’ how can an emotion cause a physical symptom?

Very easily. Infact it happens to us all, all the time. Common emotions causing physical symptoms, are;

  • Embarrassment; blood may rush to your cheeks causing blushing.
  • Sexual Feelings; the brain diverts blood to genitals causing an obvious physical response with an erection.
  • Fear; your mouth may go dry, heart rate increases, your hair stands on end, you may hyperventilate.

The most important thing to note here is that all of these physical changes happen as a result of an emotion and cannot be caused by conscious intent. In other words they are very REAL and rooted in the unconscious. It is not fluffy hippy-trippy-stuff, it is not ‘an-approach’, it is not ‘a belief’, this is real hard-science fact, that western medicine is gradually beginning to accept.

Another fact I learnt recently is that 90% of people with back pain stop seeking treatment within 3 months even though some form of the pain persists. Those people will develop some form of disability thinking they can no longer do certain activities. Of that group 20% will develop depression. Most horrendously, a review of a dozen studies from 2006 showed that chronic pain doubled the risk of suicide; with one in five thinking about it and one in ten attempting it. Grim stats indeed.

So dear ones, my message to you is this; you can, all of you heal from these things if you only have the courage to look at your feelings. Next time you find yourself saying “I can’t; lift / sit / run / dance / bend / swim like that…” stop, think. If you accepted that it is your emotions that are to blame and not your (you think) broken-bodies then, I promise you would be able too. It is hard and scary, you can’t do it alone. There is help and I’m still learning myself. But everything worth doing is scary and what could be more worth it than your health?

Much Love to all, I hope something here speaks to you. Please see below some links to some sciency-folks and their books who can give you the proper geek breakdown on all of this! Enjoy! Lucy xxx

 

Georgie Oldfield MCSP

Dr Sarno

David Hamilton PhD

PR Croft British Medical Journal (PMID: 9563990) 1998 1356-9

Chronic Pain Policy Connect

C Alba-Delgado Biological Psychiatry (PMID: 22854119)

Harvard Mental Health Letter 2004

Psychological Medicine (PMID: 16420727)

wisdom

 

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The darkness of Chronic Pain: You are not alone

Sometimes the world is dark. Sometimes, I hurt and silver linings are hard to see. Sometimes I just want to write it out. Get it out. Tell the truth and share the pain. If only to shout into the ether, to other’s; ‘You are not alone! We all have pain! You are not alone!”

credit: desmotivaciones.es

credit: desmotivaciones.es

It weighs me down this cold grey ache,

Slips on the edge of agony,

And creeps down the streets,

flowing like stage-fog around swirling crowds.

Silently it pours down the beach,

My safe-haven, my go to place,

Its fingers call me and I try to run,

But the pebbles crumble and stop me,

Untroubled, the grey flows on.

It’s round my ankles now,

But I smile and nod,

Say I’m fine,

So the grey swirls higher…

Shut my eyes. Shut down.

Not here. Not now.

It stalks through the day

so much to do, so much to do

Lonely, unwanted and frightened

Selfish and ashamed

It smiles and creeps nearer.

In desperation I reach out,

put pen to paper.

My back aches, joints burn.

Nearly two years on,

My left side is still different to my right,

Tears have scared paths down my cheeks,

Pins and needles; my familiar companions

A hundred or more hours of learning, and still;

My back aches.

My back aches.

My back aches.

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Oh happy day!

I am beyond tired. I haven’t stayed in one place for more than five nights in the past month and in the past 24 hours I’ve been to three cities crossed a dozen counties and (been) driven over 500 miles with about five hours sleep….YAWN! A pretty epic journey when I think back to this time last year when I couldn’t walk!

I wanted to write a note today to mark it as this is the day that I have completed the 100 Happy Days Challenge which I have been working on via the wonders of instagram. It was a fantastic experience and I feel pretty-damn-awesome that I have managed to find the happiness in one hundred consecutive days in my life. That is a truly fantastic thing to say you have done. With that in mind here’s a list of the top five things I got out of this project;

  1. I learnt that even on the grimmest day; Days when I felt so ill I could barely roll over, days I had seizures, days that I heard loved ones were dying. THERE WAS STILL BEAUTY. There was still a cup-of-tea, a new green shoot, tiny things which when focused on where happy-making-things. Things I was grateful for.
  2. I learnt the Happiness is a verb. To be Happy. Happying. We forget that. Finding happiness is work. Once we learn to be on the look out for it. We see it all around.
  3. I learnt to Look. Look More. At the start of the project it was hard to remember to take pictures. Harder still to find something, but by the end there where SO many things I wanted to include. We just need to train ourselves. the HAPPIEST things are often the smallest things. Life is so busy we rush through it not noticing the way a sunbeam falls across our path is radiant.
  4. I learnt that I have control over some of the many labels put on me; Disabled, Epileptic, Patient….. and Happy. It is within my power to be labelled as a happy person! What a joyous thing!
  5. Finally I learnt, that when you see happy making things in your life, it is very difficult to understand when others talk of changing their lives ‘to-live-the-dream’ (whatever that might be usually less work, more play) as I realise now. I’m already living my dream. This is the best it could be. It is what there is and I have so much I am happy about in it I cannot begin to express that.

If you haven’t done it, I’d really recommend it, there’s nothing to loose and everything to gain! I’m a bit sad now it’s ended, it’s so positive to do my daily-happy-hunt that I’m going to keep doing it. Now I’ve done 100 days who’s to say I can’t do 500!

100happys

photo credit: Olivier Follmi

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Triggers

Epilepsy is scary. It’s terrifying. That is a fact. Most people I’ve met seem to comprehend that. It is taken as red. Seizures are scary. Of course. Claro que si. Definitely. Understandable…..

It would be a massive understatement to say that people do not realise how difficult it is for me to talk about epilepsy. How the words seizure, fit, convulsion, screech through my brain with a violence more shocking than anything in X-rated films. How much of an effort no I dont mind talking about it, it’s OK what do you want to know? really is. I always mind. I mind SO much it hurts, but what I would mind even more is seeing pain on a persons face if they ever knew this. So I cope. I force a smile and I answer questions and each time a piece of my heart falls into an abyss and I can’t follow.

epilepsy awareness

I learnt something new recently. That for me and I suspect for others with epilepsy too my epilepsy triggers are just as scary as seizures… Even though I’m on meds which ‘work’ and unlikely to go into a grand-mal I am afraid. Everyone is different. My epilepsy is usually, but not always triggered by; STRESS, particularly lack of sleep and low blood sugar. When I run into a trigger I now see that my initial response is fear, cold dread, rapidly followed by panic and this gets turned into anger and then round I go.

Via EpilepsyFoundationFL

Via EpilepsyFoundationFL

In the very early hours of this morning I hit a trigger. I was woken by music suddenly blasting through the flat. My head spun. Sleep, sleep, sleep. I need to sleep, I must sleep, or else….or else… I thought it was a car. I rolled over trying to ignore it, it continued. The base rattled the window glass and vibrated the bed. By now I was wide awake and furious, it was 3am…..prime seizure-alert-time, prime-panic-time… I got out of bed and realised it was our neighbour. Rubbing sleep away, barefoot, heart pounding in my ears I crossed the garden to his front-door. It was so loud the door was rattling. I knocked on the door. After what seemed an eternity, he opened it apologised and turned it down. I felt sick and cold. Holding back the tears I stumbled back to bed, muddy feet on the  clean sheets. Sleep found me at last.

epi

I woke up in the dawn light. Something was wrong. I hurt. In a new way, what now TMS I thought? I looked at my hand. It is swollen and bruised across the knuckles and along the palm….I had knocked on the neighbours door so hard in the night that I have hurt myself, at the time I felt nothing, but now………I am shocked and appalled. Terrified that I did this to myself, took it out on his door, because he woke me up?! WTF WTF WTF

fear

If there is a rabbit hole and Alice is in it then I have surely joined her and have totally lost my mind…… I can’t cry I am numbed by this. A trigger. Just a trigger not even a seizure has injured me…………….WTF?

The wine in the fridge is calling to me. A duvet and darkness are what I want. Instead I choose these:

choose

I choose a zumba class and a hot shower. I choose to know that I am not alone. That others know how this feels. I know you are there and that helps. I choose to know I AM FINE and OK. I am loved and I DO LOVE. I am not bad.

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