#107days – Justice for LB

17 04 2014

Whilst this blog is usually reserved for posts about mental health, today I’m making an exception. Today is Day 29 of 107 Days of Action for LB. Who’s LB, I hear you ask?

Connor Sparrowhawk was a fit and healthy young man, who loved buses, London, Eddie Stobart and speaking his mind. Known as LB online, short for Laughing Boy, he also happened to have autism and epilepsy. On the 19 March 2013, he was admitted to Slade House Assessment and Treatment Unit (ATU) run by Southern Health NHS Foundation Trust.

Tragically, after #107days in the unit, he drowned in the bath on 4 July 2013. An entirely preventable death.

Twelve months later #107days seeks to inspire, collate and share positive actions being taken to support #JusticeforLB and all young dudes. We want to harness the energy, support and outrage that has emerged in response to LB’s death and ensure that lasting changes and improvements are made.

As those of you who know me in real life are aware, improving services for people with learning disabilities is something that I’m incredibly passionate about. For all the talk of a post-Winterbourne era, there are people all over the country who are being placed in in unacceptably risky situations, receiving substandard care and spending far too long in units that are far from their homes and those that they love.

Connor drowned in the bath. He was left alone when he should have been supervised and he died. An eighteen year old boy drowned in the very place that was supposed to be keeping him safe.

So today is my day of action… and here’s what I got up to.

Connor loved buses - so in order to spread some happiness and some awareness of #justiceforLB I pulled out my pencil case. After some licking, sticking and stamping, I had made the following -

New iPod Photos 377

32 cards – to spread over the public transport system of Nantes, the city where I live. I left them all over the place – on trains, trams and buses and at bus and tram stops…


TConnor 001

TConnor 003

TConnor 005

TConnor 004

It won’t change the world. But hopefully it made someone smile.

So today is my day, and I’m using it to spread the joy that Connor gave all those who knew him.

TConnor 007

Thank you Connor,

Bellsie





March Bloghop – Stronger than OCD

10 04 2014

So this month the lovely Laura from Symptomatically OCD and OCD-NI is running the blog hop and chose the OCD-NI slogan as her theme – #strongerthanOCD. Laura has graciously allowed me to take part, albeit a bit later than planned – thank you!

Sometimes I’m not stronger than OCD. Sometimes it worms its way in quietly and methodically, twisting its way around my thoughts until everything is turned on its head. Sometimes I can’t cope. Sometimes things get on top of me and things feel hopeless and lost. Sometimes the OCD is in control and I’m nothing but a slave to its parasitic presence.

Sometimes I’m not stronger than OCD.

But I’m lucky.

When I’m not stronger than OCD, I am surrounded by people who are. I am surrounded by people who will reply to my self-pitying texts in the middle of the night, who will listen to me without judging and make me laugh when I feel that I will never laugh again. I am surrounded by wonderful friends, a fantastic family and a huge network of people who understand OCD from within.

And together? Together we are stronger than OCD. And we always will be.

Obsessively compulsively yours,

Bellsie





“It’s our life, not OCD’s” – Laura’s OCD Video

5 04 2014

I am very aware of the fact that it’s been a long time since I posted on here – dissertations and final exams are currently taking up most of my time right now, but once they finish, I shall be back. That didn’t sound as threatening in my head.

Anyway… in the meantime, here’s a fantastic video from Laura of Symptomatically OCD and OCD-NI – it’s well worth watching.

Laura’s working tirelessly to increase awareness of OCD in Northern Ireland and is doing a fab job. She’s on Twitter as  so do go and follow her.

So, over to Laura -





February OCD Blog Hop

5 03 2014

This month, Ellen is hosting the blog hop and has asked us to write about our favourite quotes…

everything-is-different-change-picture-quote

I have three younger brothers (although I’m constantly being mistaken for the younger sister, despite there being up to an eleven year age gap!) and have had the delight of watching them grow up. They are all now strapping young men (enormously tall and far too strong to fight with these days), and yet I didn’t see it happen. I didn’t see those extra centimetres or their faces change shape with age (although not wisdom, it would seem). Day by day, nothing changed, and yet looking back, so much is different.

Which brings me to CBT. As you creep up your hierarchy of fears, it can seem as though little is changing. For me, there were no overnight lightening bolts of sudden success, just a long and hard slog towards recovery. The problem with the baby steps is that sometimes it’s hard to remember that you are still moving forwards, and to look back at how far you have come. So that’s why I like this quote – it reminds me to reflect on all that has changed, no matter how small it might seem day to day. That’s the thing about tiny steps – they add up to massive great distances.

Seuss-quotes-2

Every week I come across people with OCD who are being failed by society. Children who are out of school and yet still not able to access treatment, people who are losing their homes, families and jobs because of this totally unnecessary condition and those who are too scared to even ask for help because of the stigma and misunderstandings around mental illness. Worse than that, a huge amount needs to be done in mental health care, but I think that even more needs to be done in the area of learning disability. People with learning disabilities are dying and being put in dangerous situations in the very places that are supposed to keep them safe. So I’m going to be a pain. I’m going to be that annoying girl who never shuts up about it. Because if we don’t shout about this from the rooftops, if we don’t demand change and not cease until it is delivered, nobody else will. And this quote reminds me that it’s okay to be like that. It’s okay to say that things are not good enough and to fight for improvement.

And finally (but most importantly)…

tumblr_mdltz2Z4kv1qhxaymo1_500

All donations to Bellsie’s teabag fund very welcome – stocks are running perilously low!

Obsessively compulsively yours,

Bellsie





Of Chocolate Bears and Intrusive Thoughts

13 02 2014

Like any self-respecting French student, I have a two hour break for lunch each day. It’s just enough time for me to walk the 25 minutes home, stopping off to buy my demi-baguette on the way (unfortunately not wearing a beret or with a string of onions or garlic draped around my neck). Yesterday, as I was leaving the boulangerie I walked past the shelf full of pick and mix, including a huge box of chocolate bears. Suddenly, the thought struck me that I could steal one, and that nobody would know. I quickly brushed it away and went on with my day, but it made me think about the universality of intrusive thoughts, something that is sometimes hard for someone with OCD to understand and accept.

Chocolate and marshmallow bears - a French delicacy!

Chocolate and marshmallow bears – a French delicacy!

In 1978, Stanley Rachman and Padmal de Silva interviewed 8 patients with OCD and 124 non-clinical subjects (people who didn’t have OCD) about the presence of intrusive thoughts and impulses that were deemed to be unacceptable by the respondents, as well as how frequent they were and how easy to dismiss. The results were fascinating –  to quote directly from the paper…

To conclude Study I, obsessions (thoughts andior impulses) are a very common experience. There are no sex or age-related differences in occurrence, and most thoughts and impulses are easily dismissed. There are individual variations in the threshold of acceptability of obsessional thoughts or impulses.

- Rachman & de Silva (1978)

They then looked at the content of these intrusive thoughts and urges – can you guess which of the following lists were intrusive thoughts reported by the 8 people with OCD and which were reported by the 40 individuals in the non-clinical group?

Were these impulses and thoughts from people with or without OCD?

Intrusive thoughts and urges -

Impulse to jump out of window
Impulse to attack and harm someone, especially own son, with bat. knife or heavy object
Thought of ‘disgusting’ sexual acts with males (male subject)
Impulse to look at buttocks of boys and youths (male subject)
Thought whether he has been poisoned by chemicals
Thought that his eyes will be/are harmed

What about these ones – OCD or not OCD?

Impulsive thoughts and urges -

Thought that she, her husband and baby (due) would be greatly harmed because of exposure to asbestos, with conviction that there are tiny asbestos dust particles in the house
Thought whether any harm has come to his wife
Impulse to shout at and abuse someone
Impulse to harm, or be violent towards children, especially smaller ones
Impuse to crash car, when driving
Impulse to attack and violently punish some0ne-e.g. to throw a child out of bus

The answer is that the first list comes from people with OCD, and that the second list is entirely thoughts and urges reported by people from the non-clinical group. Don’t worry if you didn’t guess – Rachman and de Silva then presented the lists to a group of psychologists, and to quote from the paper -

It appears that the judges were not able to identify the clinical obsessions too well, but on the other hand they were moderately good at identifying non-clinical obsessions. From this we can conclude that clinical obsessions are not as readily discernible-even to experienced clinicians-as might be expected.

Rachman & de Silva (1978)

Back to the chocolate bears. I was able to brush this thought away, to see it as illogical and ego-dystonic (inconsistent with my beliefs and personality – in other words, I’d never steal. I’m far too much of a wimp) and therefore not concentrate on it, but this isn’t always the case. Had my OCD seized upon the thought, I could have interpreted it very differently, tangling myself into a web of doubt and worry over what it meant. How could I think such a thing? What does that mean? Does it make me a terrible person?

To take the classic CBT model of the vicious flower (Salkovskis, Forrester & Richards, 1998), the trigger (the thought that I could steal the chocolate) would be misinterpreted as “I am a terrible person, probably a thief or a criminal”, which would cause emotional reactions (guilt, distress etc.), safety behaviours (trying to push the thought away) and neutralising actions (asking for reassurance that I wasn’t a terrible person, trying to rack my brain to see if I had previously done something similar etc.). I would probably try to avoid going into shops where I could steal, and soon my life would be revolving around this thought.

And yet this didn’t happen. Instead, I went home, had a very nice ham sandwich and went on with my day.

It’s a funny old thing, OCD, isn’t it?

Obsessively compulsively yours,

Bellsie

 





Hope – The First OCD Blog Hop

9 02 2014

A month or so ago, I asked whether any bloggers would be happy to participate in an OCD Blog Hop. Following some fantastic responses, I’m very proud to present the first round-up post.

The topic that I chose is hope. Sometimes hope seems impossible when caught up in the smothering blackness of OCD, but it is incredibly important. There are handfuls of clichés that I could pull out here, but I shan’t – we all know that at the end of the day, if we lose sight of our dreams and plans, things can’t improve.

hope-painting

 

Our first post comes from Ellen who reminds us that hope can mean different things to different people, and that there is support available -

h•o•p•e – hold•on•pain•ends

We must all hold on because things will get better. It doesn’t matter if you just need to cry, scream, or just take a break because things can improve. There’s support out there that will enable us to do so. It’s hard in the moment to tell yourself this, but sometimes I think that it’s the key.

Next, Harri from Welcome to OCD Camp writes about the importance of refinding the belief in yourself, the knowledge that things can improve.

I have lost hope and worshipped despair, had self harm and low worth as my idols, prayed for suffering instead of recovery when I believed there was no way out. I have been to the very depths of my ocd, fought against that demon and then willingly surrendered my power to it.

To lose Hope is to lose faith, faith in yourself and your strength. To lose Hope is to lose yourself, and I almost did.
It took a long time to climb back up, to be honest I’m still climbing. I know I have a long way to go, and some days I slip (sometimes willingly, indulgently) back a little way. But I still climb, I use all my weapons to fight against it, and one of those weapons is Hope.

Hilda from Perfectly Imperfect hopes for a few things of things – that OCD will someday be curable -

Sometimes, we feel so overwhelmed by all these thoughts (and by all the rituals that we do) that we fear we would never be OCD-free. It took me a lot of time to accept that, I wanted my OCD to go away forever. Lapses and relapses may happen, but this doesn’t mean that you can’t live a fulfilling, productive life again. Learning how to manage your OCD is the key. Even if it might mean trying different treatments before finding the right one, you’ll get there, eventually. There is hope!
I hope that someday OCD will be curable but, until then, we have tools we can use to “turn down the volume” of intrusive thoughts and urges to do rituals.

But also that stigma towards OCD will one day reduce -

I hope that the stigma towards OCD (and mental conditions in general) will be destroyed.
I hope that more and more people understand what having OCD really feels like, how debilitating it can be, and stop saying something like “I’ve just cleaned the kitchen, OMG I’m soooo OCD!” or thinking that having OCD means being organized.
Laura from Symptomatically OCD is a woman after my own heart! I’ve written before about how having OCD has, conversely, turned me into an optimist, and Laura reminds us why this is so important. Laura is running the OCD NI campaign ‘Stronger than OCD’ – check out their fab site.
I’ve always been of the opinion, that if we know something, we must pass that onto others. That’s why I’m so passionate about telling others that there is hope, OCD can be beaten.  It sometimes seems a long way off but just because it’s in the distance, doesn’t mean that we’ll never get there.  This is your day to start your journey.
“A journey of a thousand miles, begins with a single step”.
When are you going to take your first step?  When are you going to tell OCD you’ve had enough and you’re ready for the FIGHT?  I urge you to take that first step.  We’ll all be here to hold your hand on your journey.  We’ll get there together.
The lovely My Mind Outlined shows that whilst hope is essential, it isn’t always enough -

But I also know that by itself, hope is not enough. In order for me to live a life that is not controlled by OCD I need to work hard. I need to complete the CBT and ERP exercises that will help me achieve this. That’s not always easy. It takes real effort and discipline. But having hope helps me to keep going and working towards my goal. I know that if I put in the hard work now, I can reap the rewards of a life that is not dictated by OCD. And that is very much worth it.

So rather than just using hope to think about an easier future, I try and find hope in everyday things. I find hope in every little step I make towards recovery, whether it is the fact that I have not turned around in the street to see what I might have stepped on, or not spent time examining a red stain or not washing my hands after touching a door knob. All these things give me the most hope and keep me moving towards my longer-term goal.

Similarly, Stephen from Compulsivflyer writes that hope isn’t just positive thinking – it’s much more than that -

I HOPE I CAN RECOVER FROM THIS HORRIBLE ILLNESS THAT’S RUINING MY LIFE – I HOPE WE ALL CAN!

It’s not going to come to us though.  We cannot simply ‘pray’ to get better; hope requires so much more than that.

It requires us giving all we can, learning all we can, being prepared to take the rough with the smooth, dealing with the inevitable knock backs, chasing the best treatments, acknowledging that the system isn’t perfect but that it’s what we currently have and that we have to work with it and try to improve it.

It requires us to accept that we may need to be selfish and think about ourselves first sometimes, even if this feels somewhat alien and uncomfortable.

Life is real.

It can be changed and improved by positive actions and thoughts … or you can live life on a wing and a prayer.

Rebecca from A Diary of OCD lists the different ways that she stays hopeful when OCD is making itself known – do make sure you read the rest of her list, it’s a fantastic post -

1. Whenever I get an intrusive thought that feels like a memory I remind myself that I have been here before more times than I can count and not a single intrusive thought I have had has turned out to be real, regardless of how vivid they feel at the time. It doesn’t make the current event feel any less real, but it takes the edge off the terror and keeps me from completely giving up faith.

2. If I get an intrusive thought that is of a new ‘theme’, these days, I know that even though it may be new to me, someone somewhere is going through the same thing. And someone, somewhere, has overcome it. I am thankful everyday for the community that I have found online – you all keep me believing that where there is a will there is a way.

Emily also shares how she has been able to hold on to hope and gives us some practical ideas – I love the idea of listing joys every day -

But do I think that hope can be cultivated? Absolutely. That’s not to say that if you’re having trouble finding it that you’re not trying hard enough, I don’t think it’s just about having a positive mindset but I think even in our darkest moments there will be the odd flicker flame of hope. It may die as quickly as it is lit but the flame can be fanned until it starts to grow. I started a challenge every day with my sisters to think about “Joys” for the day.

It was hard to begin with – my battered soul was adamant that there was no joy, nothing to gain any pleasure from but I persevered. As I did, I started to notice that even when I thought my day had been the worst yet I could still find one small thing that had pleased me in some way. The rules are simple, the joy doesn’t have to be huge it can be as basic as your favourite TV programme being on, a nice sunset or a kind word, it just has to be something that you notice yourself feeling in that moment a little brighter about. Once I started doing it, I noticed hope tagging along behind. I started to hope that there was maybe more to come, that there may be more joys and that perhaps things could be better yet.

HOPE

Thank you to every one of you who took part in this first Blog Hop – it’s a wonderful collection of inspiring stories and ideas. If anybody else wants to host the next one, please feel free!

If I have forgotten anybody, please know that it is an honest mistake and let me know so I can add you to the list!

Finally, thank you to you all – we have created a fantastic and supportive community and one that I hopes will only continue to grow and spread. Through our blogs, we continue to raise awareness of OCD – something that is truly invaluable.

Obsessively compulsively yours,

Bellsie





Time to Talk

28 01 2014

“It is more fun to talk with someone who doesn’t use long, difficult words but rather short, easy words like “What about lunch?” ― A.A. Milne, Winnie-the-Pooh

As those who know me in real life will attest, I’m not very good at telling people when I’m struggling. It’s a mixture of things really – shame at not coping better and of letting people down, my own indomitable stubborness to do everything alone and most of all, the difficulty in finding the right words.

On February 6th, it is Time to Talk Day – a chance for people from all over the country (and abroad – I’ll be doing it in France!) to sit down with a cup of tea and have a chat. As the Time to Change website says, you don’t have to be a professional to talk about mental health, and it isn’t as hard as it sometimes can seem.

As I’ve said before, sometimes it’s the smallest actions that mean the most – a text to see if you’re feeling any better, a silly email that makes you laugh when things are tough or a card in the post to let you know that someone is thinking of you. Why not use this as an opportunity to get the conversation started?

Obsessively compulsively yours,

Bellsie








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