‘Inflammation in the membrane. Inflammation in the brain!’* OCD


‘Brain Inflammation Discovered in Those With OCD.’

A study in Canada by the Centre for Addiction and Mental Health (CAMH) had demonstrated for the first time, that brain inflammation is 30 per cent higher in those of us with OCD than for those without. It is even higher if you complete an extreme number of compulsions.

The reason why this brain imaging study was significant for me was because it meant that OCD was a biological condition and not just a behavioural one; something vehemently denied by many psychologists and psychiatrists. If you have OCD this is important, because for some of us SSRIs and other treatments and medication have not worked in reducing our symptoms. Maybe this is because inflammation is partly to blame? How can symptoms be controlled if the brain is not working effectively? Treating OCD with anti-inflammatory drugs, created especially for this purpose, may hold the key to tackling OCD.

“Our research showed a strong relationship between brain inflammation and OCD, particularly in the parts of the brain known to function differently in OCD,” says Dr. Jeffrey Meyer, Head of the Neuroimaging Program in Mood & Anxiety in CAMH’s Campbell Family Mental Health Research Institute. “This finding represents one of the biggest breakthroughs in understanding the biology of OCD, and may lead to the development of new treatments.” **

Inflammation can be a positive function in the body. It tells us that our body has been damaged or is fighting off an infection; the infected areas will begin to swell as part of the natural healing process. However, surely in the brain, this is not such a good thing as it must also affect so many other cognitive functions and even cause depression, as CAMHS has proved in another imaging study. If the effects of the inflammation can be reduced, then there is hope that OCD can be minimised, because the brain will be able to concentrate on making new neural pathways rather than fighting off an infection. Thus, CBT would surely be more effective.

The study included 20 people with OCD and a comparison group of 20 people without the disorder… The researchers used a type of brain imaging called positron emission tomography (PET) that was adapted with special technology at CAMH to see inflammation in the brain. A chemical dye measured the activity of immune cells called microglia, which are active in inflammation, in six brain areas that play a role in OCD. In people with OCD, inflammation was 32 per cent higher on average in these regions. Inflammation was greater in some people with OCD as compared to others, which could reflect variability in the biology of the illness. **

The beauty of the study means that there is now a chance of simple blood-markers being made to measure the levels of inflammation, so that medication can be administered appropriately. The imaging study was also able to identify who had the highest levels of inflammation and this linked directly to those people who carried out the highest numbers of compulsions. Compulsions are what people with OCD do to relieve the anxiety that they are feeling. The PET scans showed that when people tried to stop doing their compulsions, their inflammation levels rose tangentially. Knowing this will mean that it’s possible to identify who will benefit the most from treatment with anti inflammatory medication. This inflammation may have begun after OCD started, or it may be the cause, but it’s there and must be hampering methods of treatment.

Dr Meyer concluded that:

“Medications developed to target brain inflammation in other disorders could be useful in treating OCD. Work needs to be done to uncover the specific factors that contribute to brain inflammation, but finding a way to reduce inflammation’s harmful effects and increase its helpful effects could enable us to develop a new treatment much more quickly.”

I hope that medical professionals in the U.K. take heed of this study, along that those we know and love. OCD is a complex condition that we can’t always control. However, I am now hopeful that, given the right conditions in my brain, CBT might actually work for me. I just pray the wait for targeted medication is not a long one. I can’t afford to lose any more friends.

*Title loosely based on Cypress Hill’s ‘Insane in the Brain.’

**Medical News Today, ‘OCD linked to inflammation in the brain.’ Tim Newman. 22nd June 2017.

CAMH: CAMH researchers discover brain inflammation in people with OCD http://www.camh.ca/en/hospital/about_camh/newsroom/news_releases_media_advisories_and_backgrounders/current_year/Pages/CAMH-researchers-discover-brain-inflammation-in-people-with-OCD.aspx#.WVJeEnByHc0.twitterin.

 

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A letter from my OCD brain to me.


Dear You,

I don’t want to judge you any more. I don’t want to constantly say negative things to you and make you feel worthless. To be honest, talking negatively to you all day long is exhausting and I’m beginning to believe my own rhetoric.

What I really want to do is to be able to celebrate every time you achieve something; no matter how small. I want to be able to jump up and down, squealing with excitement, because you did something that you are proud of; even if no one else notices. I would like to dwell on the serenity felt each time you see a beautiful sunset and to let you dance without disturbance, when you hear your favourite song. I must stop sabotaging all these beautiful moments for you, and learn to be silent and present instead.

Above all, what I don’t want to do anymore, is to give you a hard time. I’m not a bully, I honestly do have your best interests at heart. Always. However, when you really need me to be there for you, I often let you down.

I’m not your nemesis, even though I may come across like that most of the time. I don’t want to harm you. Conversely, I want to be able to encourage you to eat healthily, sleep deeply and love regularly. Instead, all I seem to be able to do is to make you feel sad and the sadness makes you cry. I just come across as heartless and callous and this has to stop. If I don’t stop hurting you, then you will have spent most of your life believing that you have failed. That is not how I want you to live your life anymore.

I’m telling all of this to you now, because one day soon it will be too late to tell you how much I really love you; how much I am proud of you. After all, you have survived many traumas, yet I still tell you that you are a failure and that you are unlovable. What right have I got to judge you so harshly?

What I should be saying is that I love you unconditionally. I should be telling you that your smile is enough for me. I need to explain to you that when I see you laughing, and you are always laughing, that my heart melts with pride. You are brave, loyal and kind, yet I make you doubt these truths about yourself every single day.

I need to give you a break and encourage you to love yourself. Hell, I need to love you too!

I’m gonna try to do right by you from now on beautiful.

Love from,

Your Brain xxx

Let’s not be anonymous at OCD Action’s 2015 Conference


OCD Anonymity
@stokpic

Do you really know who I am? 
Am I a logo on a blog or a tweet on a Twitter feed?

Do I sit starkly amongst the other anonymous accounts that you have collated over the years?

If, for example, you were attending the 2015 OCD Action Conference this weekend, would you be able to pick me out in a line-up?

I thought not, because I have chosen to remain anonymous.

Female writers over the centuries have done exactly the same thing. Two of my favourite novels were written by sisters who knew that if they were to reveal their true identities, no one would take them seriously because of their gender. 

Have you heard of Currer and Ellis Bell? Possibly not. But I am certain that you will know them by their real names: Charlotte and Emily Bronte. Writing under pen names they produced ‘Jane Eyre’ and ‘Wuthering Heights’, two of the greatest novels of all time.

Charlotte Bronte might not have been able to voice her opinions as a woman, but there was no holding back her character Jane Eyre:

“I am no bird; and no net ensnares me: I am a free human being with an independent will.”

I am not a bird either. I am wilful and independent, but I am trapped. My trap is called stigma. Unlike Jane, my net, the internet, has given me a voice. 

This month, PSHE programmes on Mental Health have been released to all schools in the UK. Wonderful people such as Pooky Knightsmith, have worked tirelessly to ensure that teaching about Mental Health is made a priority in Education. Yet this teacher still blogs anonymously. Why? OCD is misunderstood and its impact underestimated. I have felt the thorns of stigma first hand. 

So, in a brave move, I suggested recently to Olivia Bamber at OCD Action, that those of us who are blogging and tweeting anonymously, could write our usernames on our conference badges. We should wear our anonymity with pride! For if we can’t reveal our true selves at the conference, where on earth can we do it?

‘Parenting OCD. Down to Earth Advice from One Parent to Another.’ Claire Sanders.


A book review for inourhands.com

How do you ‘Parent OCD’? Surely that concept is counter – intuitive? Or so I thought until I read Claire Sanders poignant account of how she parented a son with severe Obsessive Compulsive Disorder (OCD).

OCD is like a toddler, attention seeking, prone to tantrums and frequently illogical:

“Don’t let OCD get too comfy, or… it’ll scream and scream for more, because you’ve shown it that you will give in.”

It is also dominant and controlling:

“In your child’s head lives a bully. It puts horrible thoughts in their heads, horrible images, and makes them do things they don’t really want to do.”

If your child has OCD, you really do need some ‘Down to Earth’ advice on how to cope. Claire’s book is more than practical, it is from the heart and from the perspective of a mother who has had to accept that her son’s, “OCD is stronger than her bond”, with him. We also learn that she would, “have to fight like a tiger to get him back.”

No one is given a parenting manual when we have a child, fortunately Claire has written a book that will guide you, not just through the warning signs of OCD and how to get a diagnosis, but also through the types of therapy and medication that are available. She will advise you on how to approach your child’s education and what to do to ensure that your family life is not compromised by the condition. In an unflinchingly honest way, she will also explain how it feels when the initial treatments don’t work, what OCD can twist and mutate into and how it can cause explosive panic attacks and outbursts; not just in the sufferer, but family members as well. Claire is always there to hold your hand and like any good friend, she tells you the absolute truth about, ‘Parenting OCD.’

What I also like about Claire’s book is her use of humour, often self deprecating, frequently mischievous and clearly a survival mechanism that has worked for her. For example when faced with feelings of trepidation about their visit to the OCD unit at the Maudsley hospital, she writes:

“Nerves and embarrassment had turned me into my headmistress.”

During that same visit she also noted that:

“The people at the Maudsley know Jedi mind tricks. It gets me through the day.”

Not just parents will benefit from the advice set out in ‘Parenting OCD’. If you are a teacher, health care professional or just an interested spectator, then you too will gain invaluable knowledge of this brutal condition from a first hand perspective. I wanted to review this book because I have OCD and the book has echoed my own thoughts:

“OCD rips your heart out, doesn’t it?”

Looking after a child with OCD is at its best difficult and at its worst destructive. It can affect your marriage, friendships and family life, but still Claire shows empathy and understanding for her son’s phlight:

“It never fails to amaze me that OCD sufferers are able to do as much as they do, given what they are putting up with. I couldn’t do it.”

To echo her own words at the end of the book: Claire you are strong, you keep laughing and you are doing a great job.

Read her book folks, it might just teach you a Jedi mind trick or two.

Reviewed by:

@caughtinaloop caught-in-an-ocd-loop.com

Jessica Kingsley Publishers

73 Collier Street

London

N1 9BE

ISBN 978-1-84905-478-2

OCD, Starbucks and Snow


2013-07-26 23.42.54

I have been encompassed by a feeling of icy cold darkness for a very long time. It has been ever present, dictating my actions and infiltrating my dreams, whispering of disasters and dissolving my hope of recovery. It is called OCD. But no more. That’s not to say that I did not feel fear, because I did, but it was not my master. It did not make me cry.

Instead when the plane took off:

  • I did not begin to check the news for images of air disasters.
  • I was not haunted by hundreds of terrifying images of burning bodies.
  • I did not see myself battling through debris in search of a familiar face.
  • Nor did I see myself, in my waking dreams, at their funeral.
  • I refused to complete any research at all so that I could not look for evidence of violent attacks and hospitalisations.
  • I dwelled instead on thoughts of super sized doughnuts, Starbucks and snow.
  • I sat with fear all week and survived.

Happiness, Favourite Things and OCD


There’s a real danger of misrepresenting myself in this blog, because I am trying to explain OCD to you.

You have been a loyal and patient reader, but I suspect that you might think that I am depressed and dysfunctional most of the time; it’s not true.

Yes living with OCD is challenging and it makes me cry- a lot, but on the days when I feel good, I am really very happy and I just wanted to reassure you of that fact.

So in this post I am going to tell you about my favourite things. They are in no particular order.

  • Zentangle- no not a new type of spiritual twister, it is a type of drawing that is relaxing and a little like doodling. Great for me as it is totally engrossing and I really concentrate when engaged in it.
  • Drawing owls! I am not very wise and increasingly impulsive, so this new obsession might rub off on me in an emotional intelligence sort of way.
  • Listening to new music. Love the Mahogany Sessions on YouTube.
  • Thomas Dybdahl- his guitar playing and beard in particular.
  • I am also not adverse to a moustache.
  • My husband’s coffee making ability and frothing of cold, not hot milk.
  • iPhones and all things tech.
  • The smell of my son’s neck.
  • Baking with my son, no matter what the outcome. I cannot bake or cook.
  • Rupert Penry- Jones and Jonathan Rhys Mayers. Yum.
  • Old houses.
  • Autumn and winter.
  • Jumpers.
  • Netflix television series – I have to watch every programme, in every new series that I watch, before moving on. That might be OCD!
  • Day dreaming.
  • Writing.
  • My friends.
  • Arty environments.
  • Chocolate brownies.
  • Buying/making presents for people. This one is sometimes problematic as I spend too much.
  • People who don’t give up on me.
  • The West of Ireland, specifically Mayo.
  • Playing the guitar and singing in a choir. (When I am well enough to actually go. Often too tired and fed up.)
  • Not thinking OCD thoughts. Ever.
  • When the people I bug forgive me for being an idiot.
  • My bed and sleep.
  • Especially my bed. Awake or asleep.

Butterflies: freedom from OCD


Butterflies represent freedom. In many cultures they are symbols of the soul. Their intricate patterns and graceful moves are mesmerising and draw you into a moment with nature, that is both profound and spiritual.

I have been thinking a lot about butterflies recently. It was when I began to make book art, using a butterfly as my muse, that I felt a need for my own rising sense of freedom.

All my life I have suffered from overwhelming and overpowering anxiety. It fuels my OCD and restricts my development and my transformation into a happier, more artistic being. I am frightened of so many things. This fear traps me inside a cocoon of my own making and I feel suffocated by its fibrous case. I try to escape on a daily basis, but only manage to claw through a few layers and I never actually see daylight; unlike the butterfly that eventually transforms itself and accepts its new state of being with wholehearted grace. I want to be free, to accept a new destiny, but I have lived for so long in the grip of anxiety that I don’t know how to really live anymore.

To be free of anxiety would be to be free like a butterfly.

Maybe this freedom will only occur when my soul is set free from my body. After all, it is no mere coincidence, that butterflies represent the soul in so many of our cultures. Maybe the first person to ever see a butterfly, also felt anxious like me.

Empathy, Coffee and OCD




Photo courtesy of Ed Gregory at: stokpic.com

When my Dad heard that I had OCD, he said very little at the time. I left his house wondering if telling him had been the right thing to do, or just a foolish act of conscience. I guess what I wanted him to know was that some of my bizarre behaviours were not just quirks, but the results of a debilitating condition.

I love my Dad, I really love him. He is funny at irreverent times and serious in comical moments. He has an answer for any question that I might ask and delivers a punchline with perfect rhythm and timing. He has a funny walk that he only shares with me and my sister and sings like a nightingale when the whiskey has loosened his vocal chords.

However, when I told him about OCD he did not have an answer for me or a solution. I felt a little lost.

Some days later, I accidentally read some notes that my Dad had left next to his i-pad. They were about OCD. The notes were detailed and were clearly well researched. There were columns on obsessions and compulsions, facts and statistics about incidence rates, help line numbers and website addresses. At the bottom of the page were two words written in bold. One of which was underlined and etched over several times for emphasis. That word was:

Empathy

My Dad knew me, but he still felt the need to write that word, because OCD was a condition that he did not understand or have all the answers to. However, not having the answer did not flaw him, he just reminded himself that to show empathy was a powerful, compassionate and necessary action.

The other word that he wrote in large letters on the crisp, white page was:

Coffee

However, after the mitral valve diagnosis, he might have to have a decaf tea instead!

For my Dad:

http://youtu.be/_PDlGUdDF8Y

Don’t go gently: OCD and ageing parents




Picture courtesy of Ed Gregory at: stokpic.com

My Dad collapsed 48 hours ago. After a series of diagnostic tests the doctors have concluded that he has mitral valve prolapse and an accompanying murmur. He informed me today that he would not be having it operated on and that I needed to accept his decision. My mum also told me that I needed to prepare logically for the fact that my Dad might die soon. Death might be a logical process, but preparing my emotions to respond logically is not.

My parents have been preparing for their deaths for at least 20 years, ever since my Dad was diagnosed with pancreatitis. Statistically he should have died within 7 years of this diagnosis, but he has lived for 20 years more than he was predicted and surprised all those medics who have looked after him. My Dad is the defender of life.

However, tonight I am not so sure that he can tough this one out. He might have fought off prostate cancer and got his diabetes under control, but the heart? I’m not so sure.

I wish that I had not been so unwell myself in the last 18 months, so that I could have spent more afternoons drinking coffee with my Dad in the village cafe. We always seem to talk best when we are there, when it is just the two of us and that has always been the case since I was young. By ourselves we discuss all sorts of topics and no subject is off limits, because we really understand each other. We are the same my Dad and I; compassionate, sensitive and kind.

So hearing my Dad tell me tonight that he would not have an operation that might prolong his life for another few years, came as quite a shock to me. I understand his decision, and respect his choice, but I want my Dad to live forever and now I know that he won’t.

I don’t want him to go gently, I want him to fight.

Do Not Go Gentle Into That Good Night

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieve it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Dylan Thomas

Stuck In A Moment You Can’t Get Out Of with OCD


Today I did something surprising, I told a neighbour that I have OCD, I told her why I am stuck in a moment that I can’t get out of.

http://youtu.be/Xqrn2q3WCS8

I wanted to explain why I wasn’t working.

Usually my default answer is that I am suffering from extreme tiredness, which is true, but it is not the whole truth. You could say that I didn’t want to hide any more, that I was tired of pretending that everything was fine and that I wanted a different moment.

My neighbour’s reaction to my disclosure was unbelievably positive; even asking if she could read my blog. She made me feel as though I had simply told her that I had twisted my ankle or had toothache. I was so grateful to her.

Until recently, I have kept this blog from anyone who knows me in person. I was happy to share my thoughts with thousands of people in the blogosphere, but people that I knew? Are you kidding? Then I had a change of heart. I sent the link to a few people that I really trusted, or who were at least writing themselves; it was a heart stopping moment.

Previously when I have tried to explain what OCD was like, I have made light of it or even suggested that it was simply perfectionism. My comments made OCD sound easy to live with, not impossible. It is no wonder that stereotypes abound, when even I could not explain what OCD was really like.

However, as honest as I have been in this blog, there is still an aspect of my OCD that I have promised not to discuss. That aspect of my condition has been hell on earth to live with and not just for me, but for those that I love as well. OCD can have a devastating and draining effect on friends and family members, who have to deal with the associated anxiety and panic attacks. I am ashamed of my behaviour when I panic. Terror is destructive and the fallout is often catastrophic; OCD is an unforgiving master.

So yes, I have been a little more honest about having OCD, but I can never give others back the time that they have lost to my condition. If you think that you may have OCD you must tell someone before you too are stuck in a moment that you can’t get out of. I don’t wish that on anyone.

Tidal Waves, Skateboarders and OCD Honeymoons 




Picture courtesy of Ed Gregory at: stokpic.com

You may remember this post about a small child:

‘Each week the little girl devoured a story about the lost city of Atlantis. In her mind’s eye she became a child who dwelled within the city’s limits. Dramatic images entwined themselves into her imagination. When she was there she felt safe. She felt at home.

However, the trouble with stories is that unless you cheat and read the final page, the end can come as quite a shock. The girl was not expecting an unhappy ending. She had previously read tales of wardrobes leading to snowy realms and children who believed that they could save a frozen world from evil. But in this tale of Atlantis it did not end well.

As the horrific image of the tidal wave thundered into view, something in the small child’s mind faltered and stuck and the fear of the wave stayed with her forever, even on her honeymoon. But that is another story of an older girl who no longer knew how to stop the tidal flow of fear.’ 

Well, when the girl grew up she fell in love.

OCD did not deprive her of love, if anything, she felt that emotion too much, but that’s another story.

The skater boy that she fell in love with and married had a dream to skate in San Francisco. San Francisco was a skateboarder’s Mecca. Blocks of pure marble lined the ocean sidewalks and plazas bustled with coffee drinkers viewing the nifty ollies and breathtaking 360s of the skater folk.

Unfortunately for the girl, there was an earthquake during their honeymoon. Too many images of Atlantis flooded her mind and from that moment on she waited for the tsunami to hit the city. She knew somewhere in her logical brain that this was not going to happen, but she wasn’t certain.

If you know anything about OCD, then you will realise by now that the need for certainty is necessary. The less something is certain, the more the OCD anxiety grows.

Each night the girl lay awake whilst her partner slumbered next to her. She was completely and utterly terrified. The water was coming. The water was coming. She could hear the water coming.

The glass windows would not hold back the force of the flow. They would be crushed by glass and the force of the waves. They were going to die. They were going to die next to each other and the water, the water would inflate their bodies and create monsters from their love.

If they died, who would tell her parents? What would they do without her? How would her sister cope when her parents died? How were her parents going to die? Would it be painful? Who would console her sister?

How could they save themselves?

Were they high up enough for the water to miss their window?

Maybe the building would crumble and the masonry would crush them instead?

The water, she could hear the water.

Her mind was flooded with fear.

That is how my OCD loop works. Uncertainty begets fear. Fear begets anxiety. Anxiety begets more fear. Breaking the OCD loop is essential to recovery.

http://youtu.be/Y-VwSUfPJco

Eaten by OCD


stokpic.com

Some people devour love, others life but,
OCD devours me.
I wear it on my body
Like a giant squawking albatross.
A permanent symbol of guilt,
acknowledging to the world
that I am a fraud;
laden with lies and deceit.
OCD chases me in my
dreams and hunts me down,
hurling me kicking and screaming to the floor.
It forces itself upon me and
enters my body without
permission. I do not put it there.
OCD is the perpetrator
and I am just the victim of
his desires and hatred.
I try to defend myself against
him, but he always overwhelms
and overpowers me.
He beats me down and
circles around me, until I
cry out ‘No more’ and
succumb to his will.
Defeated and belittled I fall
and OCD soars away;
leaving me to face the jeering crowds alone.
They do not believe that OCD
was here uninvited.
They think I have control.
But I am weak.
I wear him over me.
Heavy.
Ugly.
Dead.

A letter to OCD?


My thoughts swirl in my head
Like debris in a vortex.
The superfluous ideas become
Elusive and lost to the world.

I hear Toto bark and I search for him,
But the concepts that baffle me
Are dense and linger
Like a terrible cow in the
Middle of the air.

I just can’t find him anywhere.

Storm chasers say that it is immensely
Calm in the centre of a storm,
But my inward eye only
Witnesses a maelstrom
Of hyperactive verbs.

Somehow I have got lost
between the fantasy and
reality of my own life.
My rubied shoes
Glisten on my feet,
But I can’t remember how to use them.

From the swirling mist comes a whisper:
‘Three clicks for Kansas’.
I know that it is you
Guiding me home.

Toto is asleep on the floor, unaware
Of his momentous journey.

And me?
I smash my ruby slippers
Against the wall.
We could send letters?

Shelf life: OCD


Depression blurs the boundaries between fantasy and reality.
Life becomes a 1920s black and white silent movie;
The woman screams,
Yet no one hears.
You are referred.

CBT becomes the link back to your Technicolor world;
Munch’s scream finds enunciation.
The words flow gently at first, then steadily;
More like a monologue than a silent O.

Only every so often, the movie reel breaks
and you jumble up your thoughts again.

Then in a more lucid moment, you remember
That your lifeline,
Gave you a book for moments just like this.

Not convinced, you read the opening chapter with trepidation and
are sucked into a world of other people’s recoveries.
It makes you cry.
Not with sadness, but relief.

You finally realise that you are not alone;
There are others just like you.
The audience claps; a standing ovation.

Words are great healers
Whether spoken or read.
But the real power comes when both are used together.

Later when
your horror movie has ended,
You drive away, calm.

But on your bookshelf are the real plots,
The wise words that will always be there for you,
When the screen bubbles, breaks and bothers you;
as it inevitably will.

OCD: A life in my head


I live in my head. On a good day it is a place of fantastical imaginings, technicolour landscapes and positive affirmations. Conversely, when stuck in an OCD loop my synapses morph into a twisted tangle of sinister branches and charred tree stubs; I become lost in my own mind. The only way to avoid permanent loss of lucidity is to find calm through nature.

2013-05-25 14.55.10.jpg

An OCD mind is never quiet for very long, to still it you must be totally immersed in an activity or awed by something greater than you; I need to feel just how small I am in the greater scheme of things. When by the coast or in a wooded copse, it seems that the convoluted neural networks in my brain send out more positive transmissions; there is a definite sharpness in my thinking.

I need more moments in nature. More time to think about the immensity of life and not the the topics that cause me intense anxiety. Back in town, dementors are circling as I write. Intrusive thoughts are ruining my concentration and I can’t focus on what I wanted to convey to you any more.

Camera shots momentarily restore the fluidity of thought. Time to sleep.

IMG_0746.JPG

My first OCD scars.


 I have a lot of scars on my body.

The first scar I gained was as a result of an operation on my eye. My eyelid drooped and had to be reduced in size, I was scared and needed my parents to stay with me, but this was the 70s and they were not allowed to comfort me overnight in the hospital. I was left alone in an austere Victorian building; it was cold, gloomy and sterile. I can recall every minute detail of my hospitalisation: it was was terrifying. A nurse actually told me that if I did not stop crying, then she would personally ensure that a sharp needle was stuck into me. What a cruel thing to say to a four year old. It also created an intense fear of being alone. I had nightmares about that hospital for years afterwards and it makes me wonder if this incident, not the dead bird, was the origin of my OCD. After all, from that point on, I knew what fear looked like and my scar was a daily reminder of it.

Conversely, my favourite scar is a triangular, white scar on my arm. It has been there since I was a little girl in junior school. I got it one hot summer’s evening, maybe in 1977, when I was on my way back from a swimming lesson. On that particular evening, I was feeling rather giddy and ran helter skelter down a grassy slope, landing on a freshly laid floor of rancid tar. The bitter smelling substance lodged itself in my arm and I screamed like a banshee.

Being a nurse, my mum felt qualified to deal with the situation at hand and rushed me home to bathe my wounds. She carefully removed each grain of granular tar from my arm, with a pair of sterilised tweezers; I nearly fainted with the pain. However, regardless of its birth, I like my scar. It never tans in the sun and is a vivid reminder of its associated pain. I like that scar along with my chickenpox mark next to my nose.

The chicken pox crater next to my nose can still be felt with my finger. I can also remember the time that I had off from school because of this illness. My mum made a rag doll with me and it was a wonderful experience, as I had my mum all to myself and she really concentrated on what I had to say. You see my mum also has OCD and she too gets distracted in conversations, because she is thinking about her own intrusive thoughts. As a child, I thought that she was not interested in what I had to say, as she often glazed over; looking bored. But now I know that she was battling her own OCD demons, thinking about contamination and illness; trying to keep her own parents alive with sheer determination and Dettol.

Scars tell stories and there are more scars on my body to describe to you. But not now. Not tonight.

Charles Xavier and OCD


Charles Xavier, from the X Men, is a telepath. He can read minds and influence thoughts. He is considered to be a genius.

However, I had to stop blogging recently because I had a Charles Xavier moment.

It always struck me about Xavier’s talent that it also must be a curse. To be able to read minds is phenomenal, but what if those thoughts are damaged and full of despair? What would that sound like? How would one cope with that depth of feeling?

Then it happened to me and I could not cope.

A few days ago I began to read blogs about OCD and whilst they were beautifully written and at times extremely powerful, I felt as though I was connected to those thoughts and it overwhelmed me.

On Twitter and WordPress I have found hundreds of people with OCD who are trying to explain their mental health journeys. I felt humbled. So many people afflicted by a condition not of their making. So many people lost in thought and fear. So many lives on hold whilst they try to combat their OCD.

So now when I think about the OCD community, I see Charles Xavier and his computer Cerebro. If only there was an equivalent to identify this destructive condition before it mutates and wrecks so many lives.

Popcorn and OCD 


I was making popcorn this morning and it struck me just how similar that process was to OCD.

Prior to diagnosis, most of my strange OCD thoughts were encased in a small tight kernel; impenetrable and hard to reach by those around me. Deliberately so, as I thought my ruminating made me peculiar and strange.

Heat was applied, in the form of a cancer diagnosis, and the kernel was no longer as hard as it once was; fissures began to show. Those closest to me began to notice a change, a pre occupation, a fear that made me withdraw from them. In retrospect my OCD thoughts were once again dominating my thinking and I was lost in them, so lost that I was not even aware of my own child at times. The last time that this had happened was pre and post pregnancy; the very time when I should have been popping with excitement and joy.

As the fissures grew, other OCD worries abounded and my head was so overcrowded with fears that they began to swell and distort inside my skull. They eventually ruptured the outer layer of kernel and exploded in a violent tumult, that damaged those around me in my panic. OCD panic is loud, chaotic and out of control. To others it may seem like belligerence, but it is terror, pure unholy terror.

Here the similarities between OCD and popcorn end. OCD is acicular. It is damaging and it hurts. Its needle like points penetrate everything; including love, especially love. If I could wear my OCD like a tattoo it would look like a maelstrom.

Slaying the OCD Dragon. 


I have perfected the art of being able to read to my son, at the same time as ruminating. I can read chapters of fantasy books about fire breathing dragons preying on innocent villagers, yet not take in one solitary word of the story, because I am thinking too much. If these thoughts were pleasant or useful then this would be more acceptable, but my thoughts, when in OCD mode, are disturbing. I have actually cried and hid my tears, not an easy thing to do when the dragon has just been slain and the villagers are celebrating like the Ewoks in Star Wars.

Apparently, if you have OCD, distraction is everything. I would love to read more than I do, because it makes me so happy to be lost in a book, but all too often, when I begin begin to read, I begin to think. Frequently in fact, I continue to read and only notice several pages later, that I have been ruminating, yet again.

Whilst brooding, I may see vivid images of someone that I care about jumping from a bridge. A car driven by them could be engulfed by flames. For a split second, the images are so powerful, that I believe them to be real. But then I become aware of my surroundings, of the book in front of me , the itchy wool of my blanket and I realise that I do not know anything about what I have just read. Reluctantly, I have to re read the page; this can happen multiple times. Sometimes, feeling demoralised, I just close the novel and give up.

Recently, I was told by a psychologist that only death can stop intrusive thoughts. At the time I was upset by this statement because I felt that I could never combat my OCD. However, in retrospect, I realise that what he was explaining to me, was the fact that we cannot suppress our thoughts. In actuality, in order to defeat their hold over us, we need to give them no credence. If they are intrusive and disturbing, we must acknowledge them, but then continue with what we were doing before the thought took hold. Thus their power is drained. In my case, I have to believe that no one will die because I have not protected them.

Distraction maybe important with OCD, but so too is the ability to believe and I mean really believe, that we are not our thoughts. We are not our OCD.

I have found that by explaining this to you, I am beginning to understand it myself. Wish me luck, because I do not want OCD to hurt anyone else.

Tattoos and OCD


Recently I finished reading the novel ‘In the Skin of a Lion’, by Michael Ondaajte. His prose made me want to absorb the OCD fears that I hear in my head and wear them on my skin, for all to see.

Sometimes I feel that having OCD is like having a tattoo. Frequently the tattoo must be hidden from the world, because it offends the cultural norms of society.

However, you can choose to have a tattoo; to rebel. But I did not choose to have OCD. It chose me.


The descent of words

I hang on to your lines like I would a suspension wire.
Your pronouns and verbs
are the only things
preventing me from plummeting to the
ground.
My hands are scarred from holding on so tightly
rubbed raw with friction-
Or should I say fiction?
This story is just that.
A flimsy cling filmed existence,
Translucent. Serrated. Stretched.
I read us into the myriad of myths that absorb me.
‘Hey Patrick!’
‘Everyone has to scratch on walls somewhere.’
But My nails break on the bricks as I slide down them in free fall from the wire.
I pass your window during my descent but
You lock the latch and retreat behind the glass.
Not noticing or
choosing not to notice
my flailing arms.
The ground is approaching fast.
My words tumble and contort as they try to find their way back up to you.

http://www.bloomsbury.com/author/michael-ondaatje

Perfect child 


The little girl had to be perfect, because in the eyes of other people, her sister was not. Her sister was disabled and the little girl felt that she needed to excel in order to achieve for both of them.

Every task at school had to be
completed to the best of her ability. Every task needed to be completed for both siblings. All tasks were repeated to ensure that they were flawless.

Essays were written and rewritten. Pages were stripped from exercise books. Words could not simply be crossed out, they had to be re scribed. Creases and ink splodges were not just ignored, they were eradicated and a new piece of paper was utilised. The process was time consuming and stressful because all the projects set seemed to take twice as long to complete and sometimes in the re writing, the original idea was lost.

English essays were particularly troublesome. Re drafts could take days, never mind hours and deadlines were sometimes not met. Marks were good but they could always be better, but when the little girl was striving so much for perfection, her brain had no room left to create inspirational ideas. She was exhausted by the process of revisions, but they had to be done. She could not sleep until she was satisfied with what she had produced, and even then there was a always a nagging doubt in her mind that she had missed something out or made an error. Worse still her words might just have offended the reader and that could never be the case.

Sleep did not come easy either. In her mind her words whirled and tumbled, falling in a chaotic fashion that she could not control. Yet control calmed her fears. Control meant that she could cope with being the sibling of someone with a disability; someone who unintentionally attracted a lot of attention. Attention that the little girl despised because she wanted to be invisible.

OCD not PND. 


A life lost in thought.

Today I read the following damning article in ‘The Guardian’, about the inadequate mental health care for pregnant women and new mothers.

I cried bitter tears.

http://gu.com/p/42hny

I was misdiagnosed with Post Natal Depression (PND) in 2006 when I actually had OCD. The net result of this misdiagnosis was that I was given the wrong treatment; counselling instead of CBT.

Eight years have passed by and I have missed out on some of the happiest moments of my life as a mother, because I have been so preoccupied by my intrusive thoughts and compulsions.

Eight years have been lost by going to bed in the afternoon and early evening, so that I could stop thinking.

Eight years have been lost when I could have been understood by my family and friends.

I do not blame OCD for my loss. I do not blame myself. But I do blame the doctors that saw me in those early days and got my diagnosis wrong.They got it wrong because there was and still is so much confusion about OCD and its symptoms, even amongst healthcare professionals.

The media has misrepresented the condition as an amusing lifestyle choice, so that when I had a recent breakdown, no one thought that it might have been because of my OCD.

I even blame the Internet for providing me with such conflicting information.

However, tonight my anger is directed towards those, who in their ignorance, believe that OCD is not a disability. Let me correct them, it is named in the Disability Act. It is in the top 10 of the most debilitating conditions in the world. It affects 1 in 100 people. Which means that if you have not got OCD yourself, then you will probably have met someone who has.

OCD is debilitating. If it is not diagnosed immediately during or post pregnancy it causes devastation. Fact. It happened to me.

Dark. Click. Back to the wall. Repeat.


All children sneak downstairs at some point, to listen to what their parents are doing late at night and the little girl was no exception. She often sat on the stairs listening to her parents talk and she took comfort knowing that they were safe.

On this particular night, the wind was howling and the giant oak tree in the garden was shedding its leaves at rather an alarming rate. The little girl descended the stairs hoping to obtain some comfort from her parents, as storms frightened her. They were watching television in the front room.

Stealthily, she crept to the lounge door and peered into the flickering gloom. What she saw on the screen made her freeze with fright. A man, who was lying in bed asleep, was approached by an intruder and shot in the back. The little girl bolted from the doorway and ran upstairs as fast as her little legs would carry her. She shut the bedroom door, and significantly, made sure that it clicked firmly. Infact she did this several more times just to ensure that it really was shut and jumped back into bed. However, she felt unsure and got up again to check that the door was shut.

When she finally lay down, her instinct told her not to lie with her face to the wall like the man in the film, but with her back to the wall so that she could see the intruder as he approached. Still unsettled, she rose from the bed and she checked the door again for the reassuring click, then climbed beneath her duvet once more, but very slowly this time, placing her back once again next to the wall. Did the door click? She needed to check again. She wasn’t sure. She had to be sure.

The following night the little girl decided not to get ready for bed with the light on incase someone was watching the house. If an intruder, saw her, in the glowing light of her room, he would know it was time to come to her room and kill her. The door clicked. Back to the wall.

Dark.Click.Back to the wall.

Dark.Click.Back to the wall.

Dark. Click. Back to the wall.

Repeat.

The Lost City of Atlantis


Each week the little girl devoured a story about the lost city of Atlantis. In her mind’s eye she became a child who dwelled within the city’s limits. Dramatic images entwined themselves into her imagination. When she was there she felt safe. She felt at home.

However, the trouble with stories is that unless you cheat and read the final page, the end can come as quite a shock. The girl was not expecting an unhappy ending. She had previously read tales of wardrobes leading to snowy realms and children who believed that they could save a frozen world from evil. But in this tale of Atlantis it did not end well.

As the horrific image of the tidal wave thundered into view, something in the small child’s mind faltered and stuck and the fear of the wave stayed with her forever, even on her honeymoon. But that is another story of an older girl who no longer knew how to stop the tidal flow of fear.

OCD and pregnancy


Although I was not officially diagnosed with OCD until I was 45, I suspected that my brain was different to other people’s long before that, especially when I thought about pregnancy.

I regularly had intrusive thoughts about being pregnant. Imagine desperately wanting a child, but at the same time as trying to conceive you imagined pregnancy as though it was like carrying a parasite inside you. This fear of parasites was very real and intruded my thoughts regularly. All day long. I would imagine the parasite feeding off my blood supply; a vicious way to ruin my day.

But I was trying to conceive a child and this is what I was thinking about at the time. It was a really disturbing chapter of my life for me. But like the little girl who blamed herself for the tiny bird’s death and who thought that she could make a plane crash, I wasn’t about to tell anyone about what I was thinking. It sounded crazy right? I would dread lying in bed at night because these intrusive thoughts were at their worst in the twilight hours. I was so lonely and felt so isolated because of my thoughts, yet I could not reveal them to a living soul or the deep anxiety that they caused me, even to my husband. Especially to my husband.

I wanted a child more than anything else in the world. We tried for several years to get pregnant and my little boy’s conception was the happiest day of my life. I discovered he existed on Christmas Eve and it also snowed that same day. Perfect.

However, I now know that the thoughts that I had back then, were as a result of OCD. I can never get that time back. Never. OCD robs people of happiness. It is like one of the dementors in the Harry Potter novels by J.K.Rowling. Terrifyingly real for me.

Wikipedia says this about Rowling’s creations:

“In the books, dementors have a generally human shape, approximately 3 metres (10 feet) in height, covered in dark, hooded cloaks that reveal only their decayed-looking hands. Beneath the cloak, dementors are eyeless, and the only feature of note is the perpetually indrawn breath, by which they consume the emotions and good memories of human beings, forcing the victim to relive its worst memories alone. According to the author, dementors grow like fungi in dark, moist places, creating a dense, chilly fog. Although they are implied to be sentient, this is left ambiguous. The presence of a dementor makes the surrounding atmosphere grow cold and dark, and the effects are cumulative with the number of dementors present. The culmination of their power is the ‘Dementor’s Kiss’, wherein the dementor latches its mouth onto a victim’s lips and consumes its psyche, presumably to leave the victim in a vegetative state. Dementors are invisible to Muggles, but affect them otherwise identically.”

Imagine a dementor and you are in my head with OCD.