Tag: OCD

If.

I am currently staying on a hospital ward, I’m by myself so my internet friends are the ones to keep me company most of the time…

If I had pneumonia I could curse my lungs in the comments of my latest status update.

If I had norovirus my friends would accept that it could get worse before it gets better.

If I had a broken leg most people would feel comfortable about asking how I am doing.

If I had cancer it would be despicable to say that it is my own fault that I am ill with the disease.

I have none of these illnesses. But I am in hospital with an illness which makes me the odd one out on the ward. And so begins the most difficult and agonising blog post I have ever had to write…

I have a chronic and acute condition. It is there all the time. It dabbles around inside me and latches onto anything and everything. It makes me do things I don’t want to do. It keeps me up at night. It makes me painfully bony and my skin coarse. It makes it hard for me to do anything, because it hurts so much sometimes.

What is it?

No nasties are attacking my nervous system and no cells are concocting chaos. It is a disorder which is invisible to the naked eye, but shows up like wild fire on a brain scan.

I have Obsessive Compulsive Disorder and Depression.

Why does no one ever mention that like a physical illness a mental illness can kill you if you don’t get the treatment you need? OCD has had several cracks at trying to win the tug of war for my life. But there is no way I will let it win.

So I am in hospital. I got rushed here in an ambulance. Not that dissimilar from a severe asthma sufferer my illness had stopped me breathing. On arrival I was assessed and told that I am too ill to return home. Just like the man in front of me in the queue who had just had a stroke. A normal heartbeat for someone my age is around 100bpm but mine spikes around 170 due to the anxiety which is coursing through my capillaries. My muscles ache from being forced to repeat the same actions again and again. My skin is full of potholes, where the wheels of the condition have dug in too deep for me to bare. My body is a puppet and my life feels like it has disappeared. Below all of the layers of this condition’s destructive attempt at self soothing is the girl who is left to write this post. Scared, Ill and battered.

I am in a paediatric ward at the moment; waiting to be transferred to an inpatient psychiatric unit especially for young people. I am lucky enough to be in receipt of an NHS funded place at a private hospital. I will stay there until I can move to a different unit closer to my own psychiatrist. I don’t know whether I will be able to blog while I am in there, and I don’t know how long exactly I will be there for. But when I come out of the other side I hope to feel a lot better!

If it is so hard, why am I telling you? Well I want to live in a world where people can go into hospital to regain mental health, just like they can physical health. I want people to see these conditions as a real threat to not just people’s happiness, but to their lives. Mental Illness is not something that just happens to the weak. It is by no means a choice. It is also not something that a positive mind alone can solve. My experience with mental illness is that it explodes, smoking in the most distant parts of your mind and rapidly growing outwards. But it can also lurk under a person’s skin for a lifetime. In my opinion, as far as bullies go, mental illness is the biggest coward of them all.

If you are judging me by making assumptions because you cannot see my condition just think: my eyes mean I don’t always notice when people are using walking sticks. But just because I can’t see the stick does it mean that the person can walk fine?

 

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I Am Exhaled: A Poem

I started letting things inhale me;
Books, films, documentaries and albums.
They restrained me from thinking for myself.
Entrenched me in the lives of others.
Whether they were humble,
Bewitched
Or powerful.
I was inhaled.

During this time it felt like my own respiration was at a stop.
I no longer took breath as myself.
I hid beneath duvets and learned the ins and outs of fictional character’s lives.
Until I knew them more than I knew myself.
Day turning to night, it kept me safe.

I was deprived.
I needed air.
My lungs like crumpled paper bags trying to inflate.
My feet pounding the fields and my heart ricochetting in its cage,
In an effort to self-resuscitate.
And then I could feel it,
Pounding in my ears and burning through my veins.

I’m running.
It’s behind.
I’m sprinting.
To the boundaries undefined.
I fall.
My lap is un-timed.

There it sits,
Over my senses like a mask.
Forcing the air into me.
Whether I want it or not.

The colours are bright and the smell embraces,
The petals kiss my hands and the herbs rub against my fingers like affectionate kittens.
I flop back on the grass and admire the nothing above me.
And how beautiful simple nothing can be.
And how lucky I am to have found it.

I can move.
I spin and walk and make my fingers dance on the surface of the pond.
I carefully stroke the baby apple tree and I can feel it respire between my index finger and thumb.

And then I had broken free.
And I was exhaled.

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Living With Me and My OCD

'Living with me and my OCD' banner

As it was Mental Health Awareness Week this month I felt that this topic should be represented in SSS. This Month’s cause is ‘Living With Me and My OCD’. It is a project which was put together by Claire Watkinson. It started in 2012 with the aim of raising awareness of the disorder through a film which would eventually be sent around the world. Claire herself is a sufferer of OCD and has interviewed 29 people, travelled 7,000 miles and has done countless phone and skype chats with other sufferers.

Having spoken to Claire I can feel the immense passion she has for this cause. She has a burning desire to spread awareness of this highly misunderstood condition and to help people diagnosed with it.

‘Living With Me and My OCD’ needs funding to have the final film assembled. This money will also help with distribution and production.

You can donate here.

Diagnosis- The End of Carrying the Blank Label

I have been thinking about our attitudes towards a certain topic quite a lot recently.

Diagnosis.

It is somewhat an anvil of a word isn’t it? It brings to mind dramatic scenes from soap operas and the clutching of Kleenex. We see diagnosis as bad news because it is the indicator that something is wrong. As a minor detour lets look at ‘wrong’:

wrong (rông, rŏng)

adj.

1. Not in conformity with fact or truth; incorrect or erroneous.

2.

a. Contrary to conscience, morality, or law; immoral or wicked.
b. Unfair; unjust.
3. Not required, intended, or wanted: took a wrong turn.
4. Not fitting or suitable; inappropriate or improper: said the wrong thing.
5. Not in accord with established usage, method, or procedure: the wrong way to shuck clams.
6. Not functioning properly; out of order.

7. Unacceptable or undesirable according to social convention.

People have clearly put a lot of thought into this word, and what it means. However I personally think wrong itself is wrong and that humanity established that there is no such thing as ‘simply wrong’ a long time ago. Even for things which 99.99% of the population are adamant about, the 0.01% still has an opinion. It is still right for the remaining few. Plus if anything was truly wrong wouldn’t it just fail to exist? There must be a grain of right in every wrong. When people go to the doctors we should ask if they are okay- not “What’s wrong?”.

Which brings me back to the topic of this post. When people go to the doctors because there is something amiss they go to find out what the problem is, and thus what they can do to sort it out. Of course some will receive a devastating diagnosis, medical verdicts I can’t even imagine having to receive. Ones with time labels, with words like ‘progressive’ and ‘palliative’ attached. For these people diagnosis is often not a good thing, it is a realisation of a horrible truth which some might well prefer not to know.

Hayley Cropper (Coronation Street) Recieveing Diagnosis

However imagine having an ailment which no one can attempt to fix, because they don’t know what it is for definite. Imagine ticking some boxes for one condition, some for another and falling into the canyon in between. You have a ‘hum’. Something which requires occasional mentioning for practicality’s sake, but yet has no name. Perhaps doctors don’t listen, family don’t understand. But you are not wrong. You are just experiencing something different to the people who you cross paths with on the way to the shops, sit next to in waiting rooms and work alongside at work/school. Being different isn’t a bad thing as long as you are comfortable and accepting of your difference. Plus there will be at least one person somewhere who is going through or has gone through the same physiological battles as you.

Lack of diagnosis is something which many people encounter. It is a day to day struggle to describe something which doesn’t have a name. Having nowhere to direct people to for more information and no support networks you can fully identify with. This is a problem across the board-  for those with mental health problems, long term illnesses and disabilities. It seems you can’t get help until you get a label.

We see labels as bad things, when in reality we all have them hanging off us day and night. Some are positive and some are negative. At summer school last year one of the most emotional experiences I had was when we all rotated around the room writing labels for each other and then sticking them onto the intended person. When it came to reading the stickers people had given us there were hardly any dry eyes in the room. Seeing good labels; positive affirmations and compliments makes you feel good. If you ever get a bad label (which in this example at a Christian summer camp was unlikely) at least you can see it. You can make efforts to change, rub out the pencil scrawls and replace it with something positive. But what about a blank label? What can you do with a blank label? It will always be there but no one knows what it is, you know how it feels to have it stuck to you but you can’t give it a name. No explanations just thoughts.

A rough self portrait drawing of me (a teenage girl with short hair) with a blank label tied around her wrist and foot.

I have never cried out of sadness when I have received a diagnosis. I have been lucky that none of them have been life changing, they only added some clarity to what I already knew. They came after a long time of searching, upset and confusion. Once the blank label had been written on I knew what the hum was. No more scary guesses, just answers. Especially in the case of mental health, where a condition can make you think or do things which you disagree with, it brings solace to know it is not your personality causing it. It is a disorder or illness. In the case of my OCD the original lack of medical intervention riled the guilt and self-doubt which is integral to the condition. I had been told I was ‘just a teenager’ too many times, and was digging myself into a rut. However after a referral from a different doctor and talking through my ‘quirks’ for an hour in a room of many chairs, I was given diagnoses. I cried with relief because someone believed me. Someone else saw this hum as a problem. The story is similar with my sight loss, years of searching lumbered with a blank label, concluded with a medic wielding a metaphorical sharpie- writing the name, and with it engraving hope for my future living with this condition. Diagnosis is day 0: from then on you know what ball game you are playing and how in the long term you can win the tournament.

To everyone holding a blank label:

Don’t give up. I don’t have the sharpie and the knowledge that you need, but I will certainly write ‘hope’ on the back of your hands. Don’t let the label choke you, wear it on a bracelet. Then hopefully one day you will find you are wearing it less and less.

my book of labels from summer school

The Day I Will Always Remember, Which Never Should Have Been.

Day Six:

After a leisurely breakfast we were ready and raring to go on our surprise jaunt to Munich. I had never been to Germany before, and though some would say that going to just the airport of a country doesn’t count as actually having been there, I would like to think that it does. The journey from Lyon to Munich was very pleasant with complimentary sandwiches and it was only an hour long flight. However it was slightly embarrassing when the plane was taxiing because over the tannoy the pilot apologised for the minor delay because there had been some “unexpected special guests who needed attention for safety reasons”. This gave me a hilarious mental image of radioactive blind people, though what they meant was that we were all shown the safety equipment 1:1 so that we could feel it. I think it was really great that the crew took the time to do this because it gave us that bit of extra reassurance just in case of an emergency.

On touching German soil I did two things: took a selfie with P to celebrate our first trip to Germany and realised that I was desperately in need of the toilet. On asking the assistance who was helping us to the connection flight if we could all go to the toilet C was told that we had only four minutes and that we could use the facilities on the plane. We then slowly went in what appeared to be a giant circle around the airport, up and down lifts and on and off minibuses. We had to be checked by German passport control where we were told off by a very stern lady who felt we were not taking the process seriously enough. This was because P and I had been smiling when she asked where we had flown from and where we were going to. She didn’t see the funny side of the fact that we had gone an hour in the wrong direction in order to get to our final destination. Eventually we got on the plane and by this point I was hopping and beginning to lose patience with friends who felt it was funny to make water sounds- I was very relieved to see that cubicle!

a selfie of myself and friend P pulling enthusiastic faces

The take off of the flight from Munich to Birmingham sadly coincided with one of my panic attacks. I have had panic attacks for many years now and they take me by surprise and cut off my hearing, tense my muscles, cause heart palpitations, nausea and make it hard for me to breathe. I have been diagnosed with panic disorder and OCD and I am in the long process of learning how to manage these conditions. In hindsight it is rather darkly funny to imagine myself panicking whilst rocketing down the runway, supported by teacher C trying to keep me upright from behind and friend J reassuring me. Had what happened next not taken place I wouldn’t be telling you about this attack at all because I don’t like to talk about it. But I don’t think I should be ashamed, especially when something so inspiring occurred because of it. As I was coming out of the attack a very kind airhostess from the Czech republic gave me a colouring book (I hope she doesn’t mind I couldn’t stay within the lines) and a bracelet with a duck on it which rattled. I was aware of the fact that these were clearly the same things they gave to small children who were afraid of flying, but it felt rude not to accept. As the airhostess moved away I saw the lady in the green beret for the first time.

She was a fairly small lady with dark hair and glasses. She looked to be about the same age as my grandmother and I was surprised when she came and handed me what felt like some A4 paper. She explained to French teacher C in German that it was something her friend had made. She then returned to her seat a few rows ahead. On further inspection it was spiral bound and contained some photos of abstract paintings and some sheet music to what appeared to be some German folk songs. I first quickly flicked through the pages and then enjoyed looking at the beautiful pictures in more detail- focusing on each colour separately and how they merged together. I was so focused on this that I barely noticed the lady had moved back towards my teacher and had handed her a book too. It was a German book on homeopathy and she was pointing out paragraphs describing treatments which she thought may help me. C has limited German but the lady tried hard to get her message across before returning to her seat. Towards the end of the two hour flight she came back over and gave my teacher a small tanned piece of paper. On one side was some very delicate german handwriting which she said was a poem for me. She then took another piece of paper and tried to write out an english translation. With her limited English she could only manage a rough translation of half the poem, but after I read it I was speechless. The full translation which I received later (courtesy of a family member) reads like this:

“I carry within myself
The force which makes me strong.
I want to fill myself with the warmth of this strength.
I want to push myself with the force of my will.
I want to feel peace pouring over me in all of my being.
When I can do this, I will find rest and strength through the force of my own striving.”

The two sheets of paper written by the lady

I was still speechless when the flight came to land and the lady moved towards me again. I didn’t know what to say so I just put my arms around her in a huge hug. She said: “I saw your pain and suffering and I could feel it. I was trying to think how I could help and this is all I felt I could do”. She then revealed that she wasn’t supposed to be on this flight either, she was due to fly from Munich to Birmingham the day before but had broken down crying in the toilets and was unable to travel. She said that she wasn’t sure why at the time, but now she knew. She handed me a small polar bear keyring and said she had bought it from the zoo in Munich whilst she had time to waste before her rescheduled flight. She had intentionally bought a toy penguin for her son who she was visiting in England but she had wanted to buy the polar bear keyring too, as she handed me the small white bear she said: “I think this is yours.”

By this point I had tears streaming down my face and I think C was welling up a bit too. Then the lady in the beret said: “You need to throw it in the bin. It is all in your head, and you can do this”. She is a retired kindergarten teacher from Germany who later went on to start a youth hostel and she currently works in a hospice. She said that it is the work she is doing now that really makes her understand people. I remembered how the day before an airport member of staff had said that our flight being cancelled was destiny, and I now agree. We parted ways when I left the plane with my group and she stayed waiting to be helped off so she could meet up with her son. I didn’t stop crying until at least several songs into our cheery French music CD on the minibus ride back to college.

We were two strangers who were not supposed to be on the Munich flight- we met by pure chance. The kindness of that lady, who’s name I think may have been Ann, has deeply affected me. Her insight, despite never having met me before, was amazing. I returned to college 24 hours later than expected, having touched ground in three countries, with a strange feeling. Having spoken to family about what happened I have decided to share this story though it is still very personal to me. Amongst the people I have told about my experience some say it must be spiritual or fate, whilst others just can’t believe it. But it happened, and her words I am sure will stay with me forever.

Thank you friend.

Music:

Lucy Spraggan – Mountains

View from plane window of patchwork fields in Germany

View from the plane window of the alps