Category: Mental Health and Me

Appointment Disappointment in Rising Water

My transfer between children and adult services has been somewhat… Rough.

Adult service’s attitude seems completely different to CAMHS. Where CAMHS tell you to build trust and seek help AMHS want you to fight it out alone.

The first and second meetings I had with adult services felt like boxing matches which I was losing. The CCO I had been assigned seemed to hold the “just get on with it” approach. She seemed to be making assumptions based on my diagnosies and it felt like I was being repeatedly beaten around the head. She disapproved with the crisis plan I had formed over my year as a CAMHS inpatient (that worked) and told my carers not to follow it. This was so harmful and took work on my part to convince carers that what she was suggesting wasn’t in my best interest. My words were twisted and when I asked for the meeting to end I was told that it wasn’t up to me and so she continued. My carers were told to treat my symptoms like bad behaviour to show me that my actions have consequences. In essence to treat me like a naughty child. For the next month I felt like I couldn’t trust anybody.

If you still have destructive behaviours then you are deemed too high risk to have psychological therapy. In fact you need to be at least six months harm free for any therapy at all. It’s a weird in-between world where I am too well to be in hospital but too sick to be in therapy. The interim? Work with the CCO who I have no trust in.

My third meeting was much more positive as it was with just the psychiatrist and another CPN. They suggested my previous encounters with my CCO may be due to her ‘not having full information’ – AKA not reading my notes. It’s a good job she isn’t a surgeon if she sees patients without fully reading notes! She ‘may have jumped in at the deep end’ without knowing how (their word) ‘complex’ my case is. This would explain her approach, but the intial meetings have still destroyed my trust in her and the service as a whole. The meeting with the psychiatrist and other CCO went well but one of the outcomes is that I have to have ‘peer mentoring’ (where another worker observes a session) with my CCO before I can change worker.

That news made me edgy to say the least and I lost a lot of sleep and sanity waiting for the appointment. I’ve been struggling a bit lately and I find it frustrating that rather than changing worker and beginning therapeutic work right away I have to jump through this hoop. I suppose they have to make sure patients give workers a fair chance, but I can’t see me getting much out of sessions with her. The nature of BPD is that trust is hard to find and very fragile: once it’s gone it’s gone. My trust for most things these days is in the vacuum cleaner because it was making the floor dusty.

The day of the meeting came, yesterday, and my carers got a phone call to cancel. I’ve been having mini-crisises all week but the build up had been excruciating and for it to be cancelled at the last minute with no idea when it would be rescheduled… A fuse blew.

I just need to start getting help. My carers are slowly gaining understanding and I just  have to try to trust them to look after me rather than bottling it up and going to pieces alone for fear of them not being able to cope with me. I desperately need positive experiences with AMHS because at the moment I’m like a bottle factory with a flood.

“I’m SO OCD LOL!” 

It’s almost funny that people don’t see you shrink when they make you feel an inch tall. That’s what I become when people say they are ‘so OCD’ for realigning their wardrobe or straightening a wonky picture. People don’t get hospitalised for straightening pictures.

OCD is classed as one of the top ten most debilitating illnesses by the World Health Organisation. OCD can have you twitching and tapping and checking until you have no life left. In severe cases it can convince you that you need to do dangerous things to stop bad things from happening. The irony.

“No you don’t understand, I do have to order my books.” Some will say when I pick them up on using the phrase. If not alphabetising your books will cause persistent anxiety that something terrible will happen and deep distress- see a doctor. But most people do not feel this way. Would you say “I’m so cancer with this hair cut”? Of course not.

OCD is a connection between a situation and a possible frightening scenario happening. Sufferers find by doing a compulsion to try to change the situation the anxiety that something bad will happen is relieved. Sometimes it tells you that something completely illogical will happen if you don’t perform the compulsion. It doesn’t make sense. “If you don’t tap the window your friend will die”. What makes OCD an anxiety disorder and not psychosis is that the sufferer knows it is illogical. But the anxiety is such that they have to do it anyway. The frustration of wasting days of your life doing compulsions to stop bad things happening that will never occur anyway is immense. The only relief from the anxiety is doing what OCD demands.

So before you say you’re “So OCD” think about it. Every time you say that line it belittles the girl trapped in the kitchen checking the cooker ‘just one more time’. It makes fun of the guy in the bathroom scrubbing through skin. For them it is not just a quirk of personality to boast about at the pub, it’s pathological pain. What you feel when you are a ‘bit OCD’ is normal. Anxiety derives from fear which is there to keep us safe. When you check the straighteners are turned off it is to stop a real threat. It becomes OCD when this thought cannot be released- it goes around again and again. Our minds are loop recordings of unlikelihood.

This OCD Awareness Week sufferers are stepping out of the shadows. We don’t want money- just change. Please correct your friends. OCD is a real disorder which makes the brain function differently. Would you say “I’m so…” for any illnesses outside of the brain?

A Day in the Life

Today I am getting involved in the ‘A Day In The Life’ project focussing on people with mental health problems. There have been four dates this year where people with a mental health problem are encouraged to write 700 words about their day. They are then submitted to the site and shared. I will be posting my entry here and also submitting it into the A Day in The Life database. This is the last day organised for the project. So my day on the 26th of August 2015 went a bit like this:

At 7:30am my sleep-in carer wakes me up and runs through plans for the day with me. She gives me my medication and we have a chat about unicorns, watch telly and discuss the night before. Oh and do a quick room tidy.

I’m in the bathroom getting washed and ready between 9 o’clock and 10 o’clock. I try to fight the urge to do things three times but end up surrendering.

Between eleven and twelve I investigate the possibility of me joining a group going to the cinema to see Inside Out. Due to the minibus door being prone to open mid-drive it can’t be filled to capacity, so I will see it on Friday instead.

At twelve I have a cheese toasty- I didn’t want anything but I know I should really eat something. After that I played the ukulele and sang very loudly.

At one o’clock I had my 1:1 support and we went into town. I got my toe nails shelacked a groovy green colour and then we had a smoothie at a café. The sun even came out!

At three we got back and I was pretty tired so I had a cup of tea and a nap. I read through my post and made lists of things I have to say to different people and things I need to organise. This always helps me.

At five I’m feeling quite anxious so I talk to my support worker and paint my fingernails. I don’t know why I am quite so nail varnish crazy at the moment but after I felt a bit better and ate dinner.

At six the anxiety is back and stronger. I dissociate and end up in a field. Not sure how. The scenery was beautiful but it took a while for me to be found. I had a little cry and a cuddle with Noodle and my support worker when they caught up with me.

At eight I had my night medication and watched Horizon on BBC2 because it was about OCD. It made me feel like I wasn’t alone and I loved tweeting along with my fellow mental health tweeters!

At 10pm I got into bed listening to the wise words of Caitlin Moran. I fell asleep really quickly because I was absolutely exhausted!

And that was my day! It wasn’t too out of the ordinary but obviously I was iller than I might have hoped. Everyday I aim to be better than the day before.

Check out the project here: dayinthelifemh.org.uk

my smoothie

This post was edited on the 27th and posted as a backdate.

Plans, Progress, Poetry

This is one of those practical posts where I talk about blog and life stuff. Sorry.

So after a lot of thinking I decided to start my Gold Arts Award- it is a level three qualification based on developing arts practice. It is coursework based and involves making up a portfolio of work. I have loads of time on my hands and I’m in constant need of distraction so I thought it would be great. I’m really enjoying it so far. I’ve chosen to focus on poetry and storytelling as my art forms and I’m very excited about all the project work. I have two awesome mentors and a long road ahead involving many bits of paper and eventually running some poetry workshops of my own. Eek!

This brings me on to the next topic: I have decided to post my poetry and fiction onto a new blog. This means that Upside Down Chronicles can be devoted completely to writing about disability and mental health. This is something I have been considering for a while and now that it has been done I feel a lot freer with ideas and like I have more direction in my writing.

It is also looking like discharge is at last approaching and my time of being ‘Of No Fixed Abode’ is coming to an end! Hoorah! Only a few more things to slot into place. The nightmare might be ending soon.

So expect to hear a bit more from me and if you could follow my new blog Poetry Boots that would be fantastic.

 

Artistically Pained Bus Stop Pose (I was anxious)

 

A Break from Your Routine.

Quote: sometimes a break from your routine is the very thing you need.

This week I am away at Summer Theatre School. I am hoping that the break from routine will help me not to feel quite so rubbish for a while. The heat is incredible- it is almost like being abroad. I’m going to take my blog ‘annual leave’ and won’t post until the first week in August now. By then I will hopefully have lots of stories to tell, maybe even enough to fill in all the gaps from my time away!

Monday Mantra: Take some time out now and again,

Written at 5:24am: A Dream About Existence.

I had a dream where I didn’t exist.
I wasn’t dead or lost or anything.
I’d just never existed at all.
And in the dream I was thinking about how I was aware of the fact I didn’t exist….
So in order to think that, something of me must have dwelled in existence’s realm…
Right?

And in this dream I was looking at the world.
And I realised I only have ever seen it as myself.
I only ever recognise the things I’ve seen before.
I only get goosebumps around things I have developed fear for.
I try to be empathetic.
I really do.
But I am always, and always will be, an outsider to you and your world.
Rockets fly between our galaxies when we talk.
When you tie strands of words together to form your life tapestry.
You’ll show it to me piece by piece over a coffee or in the cereal aisle at Tesco.
And over time I can get to know that tapestry inside out.
Your story.
We share our frayed edges and our patched up seams over ‘just one more’ custard cream.
We’ll flash our silk and silver linings on the internet and at church coffee mornings.
But I can’t truly feel your fear, frustration or elation.
No matter how many tears in the cloth I have helped you stitch up in the small hours.
But no matter how much I try to be impartial.
One of life’s peace marshals.
…Opinion non-existent…
I will always exist.
My opinions are my own,
Points that are influential to my existence are in the end down to my own interpretation.
I am in my own world.
But I can’t help it.
For if my existence had truly retired.
I wouldn’t have views on the fact it had expired.
And I guess that is the best silver lining of all.

20140721-132134-48094052.jpg

Partying and The Like

Whether it is a ‘leavers ball’ or ‘prom’ parties are the talk of every school when it comes to summer. My college is no different! Everyone dressing up, dancing and drinking- is there a better way to spend one of the last nights of term?!

I dressed up with everyone else and found myself, possibly for the first time in my life, feeling comfortable in a party scenario. My girlfriend Z made the trip down to come with me and everyone looked lovely. The prom was in the Arts College across the road which (ironically) is being leased to them by my college. So we reclaimed the territory for the night.

There was lots of cheesy music and I danced with people I love, new and old. Seeing lecturers all dressed up and slightly tipsy was hilarious and I danced until I had to abandon my heels… Then carried on dancing.

The night ended with myself and Z driving good friend, M, home in her electric wheelchair as she seemed to have suddenly become intoxicated at the wheel. The event really showed the togetherness of our college and how tight-knit our community really is. All the leavers will be sorely missed. I’m sure they will all do well in their blindingly bright futures… (Ha!)

20140706-171449-62089854.jpg

<a href="https://upsidedownchronicles.files.wordpress.com/

Shed Some Light

a oman in UV light covered in shining glitter

“She was elusive. She was today. She was tomorrow. She was the faintest scent of a cactus flower, the flitting shadow of an elf owl. We did not know what to make of her. In our minds we tried to pin her to a cork board like a butterfly, but the pin merely went through and away she flew.”

“When a stargirl cries, she sheds not tears but light.”

‘Stargirl’ by Jerri Spinelli is by far the most inspirational book I have read this academic year. It is particularly close to my heart as I read it in one go on my very first taxi journey to college. It is filled with such wonderful and inspirational passages and I am so glad I picked it up. As soon as I saw this picture on tumblr I instantly linked it to Stargirl, prompting this post. After finishing the book I have found myself constantly longing to become the free spirited heroine from its pages. If you haven’t read it, it doesn’t matter what demographic you are in, you must. It is a modern masterpiece.

Monday Mantra: Shed Some Light

“Storms Make Trees Take Deeper Roots”

20140615-123817-45497621.jpg

 

Through bad times you find out what really matters and who is really there for you. These people will help you to be strong and stay strong once the storm has passed. The roots will stick with you for life, and so you are just that bit extra prepared for when the next storm comes. Your roots are getting stronger day by day. Things are tough. I hope my roots grow deeper.

Music: Breakaway – Kelly Clarkson

To My Dad On Father’s Day

Dear Dad,

Thank you for being so unashamedly you. Thank you for passing me the bricks to build myself back up when I’m down. Thank you for holding my hand, lying beside me and wiping my tears. Thank you for the arguments that end in laughs and the postman pat parodies. Thank you for waiting outside many a course, party and event. Thank you for the acceptance, the acknowledgement and the encouragement. Thank you for admitting when you have been wrong and for treating me like an adult. Thank you for your Dad worries, though I would rather you didn’t have them. Thank you for guiding me, for fighting for me and being there through thick and thin. Thank you for being my warrior, although sometimes we acknowledge you didn’t make the best move. Thank you for the hugs, for the advice and for the unmistakable love between us. Thank you for hiding pictures of saints under my bed and praying I get better, I’m sorry it didn’t work out. Thank you for my first pair of heels, my first bike and my first prom dress. Thank you for teaching me the power of the written word and how to respect it.

But most of all thank you for being my flying instructor, and for helping me to spread my wings.

Love,

Littlest Daughter

my Dad and three year old I drinking out of the same glass with two straws. Dad is a grey haired man with glasses who is smilingly comically

Music: Paul Simon Father and Daughter