Four Results Days, Four Realisations.

I’ve had four A level result days.

2014 was the first. Having been incredibly ill all year I knew I had failed. Everyone told me I hadn’t, but I knew I had. I hadn’t been eating properly or sleeping for weeks and had fallen asleep for part of two of my exams. The day before the results, my psychiatrist told me down the phone that I was having a major depressive episode and needed an ambulance immediately.

2015 was the results day where I had no results. I had been in psychiatric units for the entire year and was reflecting on the year before’s experience. I wrote a blog about it ‘FACED BUG – Some Results Day Rationale’, and ultimately realised that no exam result was worth being suicidal for.

In 2016 I worked hard on my AS levels all year and, despite still acclimatising to the outside world, I did well in English. I also got a very unwelcome ‘U’ in French. Obviously, being me, I internalised it and declared to myself that I was stupid. It was a couple of weeks later when my paper was sent back that my tutor realised that the awarding body had managed to lose the majority of my A3, neon yellow, exam paper. Instead of noticing that things were amiss the board merrily awarded me their lowest mark, a U. After a complaint I got a C grade based on the one questions they did manage to keep hold of.

This year I was incredibly nervous. I didn’t know what was going to happen. This year was different in that I had been in touch with my dream university and had asked about applying for 2018. I had accesss problems in one of my exams, which as always I worried would affect my grade. I arrived at college clinging to my Dad and softly hyperventilating. We went to the desk and got the envelope. The exam officer, a complete star, appeared at my side. “I want to be here when you open this!” She said.

‘Oh boy’ I thought. ‘She’s making sure she’s here to pick up the pieces. It must be bad.’

She smiled and opened the envelope. I got an A* in English and a C in a very hard French paper. I’d even got an A in my French AS resit. I couldn’t believe it. It’s the first year that anyone from college has been there when my results were opened, it’s the first time people smiled and the first time my Dad cried with happiness. It’s the first time I’ve been in disbelief because the news is good and the first time the conversations about ‘next steps’ have been positive.

I guess what I’m trying to say is that once I decided that my mental health was worth more than exams I was actually able to do better academically for it. That first year I stayed up all night studying for weeks on end. I was ill but wouldn’t stop. It did me no favours at all. Okay, my friends from high school are well into their degrees by now, but I now realise that I do things in my own time and in my own way. I’ve got my own beat and my own drum and I definitely dance to it. Your mental health is so important. Years of being mentally unwell can’t be retaken and they are so much more regrettable than a disappointing brown paper envelope. Look after yourself and take your time, good things do come to those who wait.

My dad and I hugging just after opening the envelope

Jim Poyner Photography

 

I’m Twenty

Today I turn twenty. Most people will celebrate their 21st birthday as the major milestone, but I’m partying today. Well when I say ‘Partying’… I’m drinking tea and feeling grateful. Partying.

To put it bluntly: I’m here. My teenage years are over and I made it. I got through. I did it. 

This may sound over dramatic, but there were times where it really was a close call. I was so ill that I was trying to end my life. It’s hard to look back, but I am proud of myself now, really bloomin’ proud. Ten year old me wouldn’t have been able to dream up all the things I am doing at the moment. I hit rock bottom, yes, but the only way to go from there is up. I live in fear that the lowest of low will return one day and I won’t be so lucky, but hitting the bottom of the pit turned out to be a catalyst for change.

I feel such relief. Relief that I wasn’t allowed to just die. I am so grateful to those who brushed the dirt from my face, inspired me and believed my life would change. They dreamed of what my life could be like when I couldn’t dream it for myself. They encouraged me no matter how many times I screamed at them to give up. I can’t thank these people enough. You saved me. 

I don’t think anyone could call me mentally well, but it’s not terminal. My illnesses aren’t going to kill me anymore- I can think, do things and meet people.

The day I am editing this (may the 12th) is international nursing day. So from the bottom of my heart thank you to those nurses who gave friendliness along with professionalism. For the hours I’ve had them by my side and for the hours I’ve cried on their shoulders. I’ve met nurses who are unshakable: They can handle any combination of crises and chaos. They are rushed off their feet on busy wards but still pop in to check that you are okay. The best nurses I know give more than just medication, they give genuine love and care to patients.

Mental Health Communication Cards

A few months ago I did some work with Hannah Ensor of Stickman Communications to design some communication cards specifically to help people with mental health problems.

Hannah is amazing and one of my favourite people to throw ideas around with. She is very patient and willing to consider anything no matter how ‘Out There’ it may be. I was honoured to be consulted about these cards. 

The new cards in the Mental Health range include: 

  • “I think I need a hug”
  • “I don’t feel able to talk right now”
  • “I have depression…” (+description)
  • “I don’t feel safe right now”
  • “I have an anxiety disorder…” (+description)
  • “I have a condition which means I see the world differently…”
  • “I don’t feel able to talk right now”
  • “Please may I talk to you?”

Plus the poignant: “Cuppa Needed!”

These cards are incredibly handy and provide a quick way to indicate how you feel or what you need. I find that they are really useful if you want to discreetly make someone aware that you need some extra support. They are also great for explaining what would help on an ‘off’ day. I have a lot of cards from Stickman Communications split between two lanyards, one for home use and one for in public. Hannah has so many amazing cards in her shop that are helping people deal with a huge variety of different medical conditions.

I’m hoping that this could be the start of a great partnership between Stickman Communications and Upside Down Chronicles to get helpful products out there for people with mental health problems and other invisible illnesses.  

What would your ideal card say? 

369 Days

Two years ago I was in the back of an ambulance.
I waited in A&E for my turn.
I got out 369 days later.
That’s a bloody long turn.

In the first six months I learnt:
That they could physically restrain me,
They could drug me,
They could detain me,
But I would survive.

I could survive:
Violent patients,
Being forced to eat,
24/7 surveillance,
and my heart would still beat.


After the tyranny freedom was elected.
I was no longer an animal- held down and injected.
I found that words made me lighter,
Each time I said or read them I shone a little brighter.
My talents lay in living not dying
and every step forward is a person I’m defying.

Once it is broken the glass does not fear the floor.
Tell me I shan’t.
Tell me I can’t.
I’ve heard them all before.

A Creative Workshop for Young People Who Hear Voices or See Visions

If you read my last post you will know that recently I have been on a mission to find other people, particularly young people, who see visions and hear voices like I do. It was while googling for voice hearing and the arts that I came across Hearing the Voice. It just happened that in browsing the site I found that they have been running workshops in order to create an art exhibition called “Hearing Voices: suffering, inspiration, and the everyday” at Durham University. They are aiming to create two cases for the exhibition- one of young people’s experiences of voice hearing and vision seeing and another of what young people would like others to know about these experiences. All of this will be portrayed through the arts.

So to Leeds I went and (joyously dodging roadworks) I arrived at Artlink. The two co-ordinators were lovely ladies; Mary Robson (a creative facilitator) and Rai Waddington (who has experience of voice hearing and provides training on the subject). There were also two other young participants and, funnily enough, one had travelled all the way from my home city! The other two girls had also been to the workshop previous but were incredibly welcoming. The group started with a discussion on what hearing voices is like and the unhelpful things people have said to us as voice hearers in the past. The notes speak for themselves.

"Aren't they just imaginary friends that never went away?" Don't use the fact I hear voices to back up your beliefs. They've got sanity around them like a bubble, they don't get as hurt as we do. "Oh we all have a voice inside our heads!". "You'll never have children".

"You're mental" "Just ignore them" "Have you tried eating kale?" Voice hearers don't always do what the voice is telling them. When you are really hurt by people you just talk to the voices and do what they say. "It's like Butlins but bonkers". "Voices don't change who you are". You are just attention seeking.

What really stuck out to me during this discussion was how little people understand us. How we are constantly having to explain ourselves or even defend ourselves. Whether it is an underestimation of our ability, a snide comment or an off hand ‘suggestion’- people’s responses can really hurt. To talk to strangers who experience the same as me was amazing and hearing someone else say that they know what it is like for reality to not make sense at all sometimes was extremely validating. To meet complete strangers yet share such personal experiences is a very powerful thing.

I believe arts can change everything for people with mental health problems and I believe it fiercely. This belief grew when I saw the things people had produced when given the materials. Mary provided everything under the sun you could possibly need in a creative flurry- wooden boxes to decorate, tiny blank faced cloth dolls, sharpies and stencils. We were also given a brown scrapbook each. Later Mary said: “These aren’t just books, they are time and space to create and simply be”. How true that is. The fact that this lovely book had been gifted to me by these lovely people, who know and understand that I’m this misfit person that the arts can soothe, was amazing. So for the next two hours we all worked on our books, drawing and writing poetry about our experiences.

The workshop was amazing. I could have stayed there forever and I cried several times at the pure ‘wow’ of it all. There was chance to talk to the lovely Rai 1:1 and her story is living testament to the fact that people who hear voices can still fly high. I’m likely going to meet with Mary again to turn one of the ideas in my book into a physical piece of art. Everyone in the group is planning to go and see our work at the final exhibition at Durham in September. I’m so glad that I found this project, purely by chance, in time to take part. I am however intensely aware that these opportunities are few and far between and for every person who found the workshops there are many more who did not.

We need more places like this. Places where you can be with people who understand you and who share a common interest in creating. The work we did as a group had an impact on us all and I think the session was a real game changer for me. I feel stronger than ever before that having access to the arts can help people with mental health problems. I am certainly going to find a way to fight for this for everyone who needs it.

Moving Community Mental Health Team In Pursuit of Help

Moving across borders within the NHS is somewhat like going on a pilgrimage for treatment. Before you go you are promised that things are brighter on the other side: more resources, more funding and more staff. My voyage -from an area which didn’t have a pot to put pessimism in as far as mental health services are concerned- was tough. The new team didn’t pick my case up for over a month. The team I had moved from, clearly glad to see the back of me, didn’t send any notes over at all. They probably burnt them all in a bonfire to celebrate my departure. Frustratingly this means I haven’t received the findings from the psychological assessment which I waited six months to complete. Three hours of shaking and crying and no one seems to have bothered writing it up. Ho hum.

One thing I have discovered about moving is that community teams like to do their own thing. They trust their psychologists and their psychiatrists, so even if you come brandishing a 100 page assessment they will likely still want to conduct their own. I’m in a bigger team now, so thankfully the waiting times are shorter. I’ve also, for the first time since leaving CAMHS nearly a year ago, been granted a community psychiatric nurse- something that a staffing crisis caused short supply of in my original county.

So I have a community psychiatric nurse, or CPN. A CPN’s job is to work with you towards recovery or towards getting some form of therapy.  They know about medications and, hopefully, all the symptoms you experience. They are generally very useful people to have on your side.

When… Let’s call her *Sue… Turned up she had no knowledge of my background. No transfer notes and no discharge summaries- she didn’t even know that I had been out of children’s services and inpatient for six months. Nevertheless I was very glad to see her, with visits every fortnight and her specialism in mental health rather than social work she is the first mental health professional I’ve had regular appointments with since inpatient.

Being in a bigger NHS trust certainly has it’s benefits as there are more support groups and, though still not many, a lot more resources. Coming out of the first meeting with Sue I had a psychiatry and psychology referral- something which took an age to get in my old trust. Over the last few weeks I have been trying to get to know her as my CPN and tentatively hoping that the support won’t fall to pieces beneath me- a process I am too familiar with.

Obviously it is a drastic decision, one that is pretty hard to research, but if you are in a rural area and a smaller trust it might be worth looking into moving to a bigger area. You are playing with fire as if the area is too big and not split into separate teams the service might be swamped with high demand. It’s also worth remembering that you can ask for a referral to a suitable consultant anywhere in the country through your GP. If you live in or near a city I have found that they tend to have better resources with and without the involvement of NHS mental health services. Some have excellent services a like crisis cafes and support groups. Our NHS mental health resources are a postcode lottery, it needs to change.

img_0555

I AM BORDERLINE: A Short Film

Potential Trigger Warning:

 

“You are a person who feels the highest of highs and the lowest of lows”

This short film is absolutely beautiful. It represents perfectly experience of living with Borderline Personality Disorder.

As a condition it is talked about so little and is heavily stigmatized. This film stresses the complete turmoil the condition puts a person into rather than focusing on how it looks from the outside. I particularly like the positives that are mentioned: How ‘Borderlines’ are often resilient despite having endless experiences of pain and hurt. To live with this condition you become a survivor.

“You are resilient and you try again. You’ve suffered so deeply, so much of the time. You push on; searching for love, hope and compassion.”