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.

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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.”

The Incredible Horrific Mood Cycle

“Dear Tutors: You’ve probably noticed by now that I don’t make it into college all the time, and I wanted to explain a few things to you…”

This is how an email to my tutors began a week ago. I didn’t really know what to say, other than that I really am, honestly, trying my best. It occurred to me that it is hard for people to understand what it is like to go through the many, many, cycles of mental illness. Someone can seem like they are falling apart or they can be jumping around with joy, but in both situations they can be just as ill. Looking through my mood calendar (cheers occupational therapy) I have pieced together the last four weeks. I have no real agenda for this post but I wanted to show what it is like to live day to day with this kind of illness and how it can morph and change.

Week One- A&E and for God’s sake leave me be…

I was doing okay as sometimes I do, bumbling through. When I found myself in A&E again. Circumstances quite similar to the time before and the time before that took me there- spending a whopping £60 in taxis for the merry outing. I was in an uncontrollable panic for no apparent reason and like before one of the less helpful voice’s ‘solution’ was to get me to whack my head as hard and as often as I could against the wall. Not a good idea. It turns out that disassociation and panic attacks cause very similar symptoms to head trauma. Throw in the fact that I couldn’t explain what I felt because I wasn’t in my body and… 111 booked me in to A&E. The doctor took one look at me- trying to do breathing exercises and stop my muscles cramping- and told me it was hyperventilation and to… breathe more. I was glad to get home.

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The next day I had a delight instore- a continuing healthcare assessment. For the lucky who aren’t acquainted with this process, it is an elaborate game of ping pong between social care and health care trying to prove that your needs are in the other one’s domain. If your needs are health based, as my social worker believes mine are, social care argue for the NHS to take on the role of funding and organising your support. More pieces of paper and more number scoring systems for things that really shouldn’t be described on a scale of 1 – 10. As the process makes no difference to me either way and I was very tired from the night before I asked not to go ahead with the assessment. Having only just finished my ‘Education, Health and Care Plan‘ (another delight) I didn’t fancy yet another team rifling through my notes and my needs. So for once I saw an opportunity to protect my notes from the beady eyes of funding panels and took it. The continuing healthcare nurse left a little later once my dry answers turned to drought.

Later was my psychology assessment. Part two of four in what is likely the most boring and confusing saga the world has ever seen. Snot dribbling down my face and occassionally mentally disappearing in front of two (yes two) psychologists I babbled. My world was ending. I had people in my head telling me what to do and how I should not trust the people not in my head. I was dreaming things and then not knowing if they had actually happened or not. Anyone asking me ‘what’s wrong’ would get the most sarcastic of replies because it is everything and nothing all at once. The psychologists asked for my support workers to keep a closer eye on me and, yes honestly, some support will come right after this assessment. Honestly.

Week Two – Jacqueline Wilson With More Drugs

Week Two involved me going to see a potential future care placement. It was an adult fostering arrangement which is what I wanted to happen about 18 months ago when I first found myself in need of somewhere to live. I got the phone call from my social worker to say that the family were interested in me and that my care plans were to be sent over.

“Ha” I thought. I’ve seen my care plans and they are not too distant from one of the weaker Jacqueline Wilson novels but with more antipsychotics… (she hasn’t covered them yet, right?). There was no way they would want me in their house after reading my care plans. wouldn’t want to live with me if I read those things.

But for some reason they read my care plans and gave the green light. After sitting in their living room for an hour I felt like it would be a viable option for me. But going upstairs to see my potential new room there was a problem. The room was as wide as my arm span and it would be a struggle to fit myself and Noodle, let alone furniture other than a single bed inside. After trying to think outside of the literal box for several days I had to turn down the placement on the logistical fact that I just could not fit myself and my furry assistant inside.

Feeling pretty crappy and unable to go to college because I wasn’t utterly sure who I was, one of my support workers took me to some fields in the dark. I like dog walking in big open spaces as there isn’t much to fall over and as I was beginning to run out of oxygen in my bedroom, the fresh air and beating heart was much appreciated. We started singing along to music in the dark and for an hour or so I thought the depression spell was lifting.

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It wasn’t though, and I found myself tearing my room apart to find and disinfect away the ‘bugs’ that were in there and on me the next day. No, I would not take my medication. Why would I? It would make me tired and then nothing would ever be clean. I’d spent the day mostly silent (something that happens often in down periods) and once the cleaning commenced I didn’t want anyone to speak to me or touch me. Eventually, as I scrubbed at the soles of my shoes with disinfectant to get ‘the smell’ off them the team leader on shift cornered me with my weighted blanket and despite my protesting that I’d infect it, draped it over me. In the ideal world I would have taken my tablets, realised this was OCD I was dealing with and manned up and got into bed. In reality I took a shower with a member of staff perched on the toilet seat facing the other way to make sure I was okay. When I did take my meds after the shower I fell asleep quickly, exhausted from the events.

Week Three – Beginning to Float… Maybe.

Coming into week three my life is slowly petering back in to normality. I’m standing up for myself and am able to leave my bed for longer periods of time without panicking. It felt like this down period had been around forever. I still had dangerous urges and my body was a mess. But I was getting there.

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One of the places I was going out to was a hearing voices support group. Held in the back room of a church in a town that nobody really wants to go to, we sat in an awkward circle. Cue all the clichés of group therapy. We said our names and said how the week had been. A gentleman turned to me after my emotional muttering about lack of support and he said: “It has taken fifteen years for me to get the right help”. This made me feel sick. I wouldn’t be able to wait that long and no one should have to.

The next psychology assessment I attended in my pyjamas after a sleepless night of thinking about surviving fifteen years on this mood-coaster. Or even the next week. The confusion from the psychology session before was still thick and the probing questions swished away my thin vail of ‘all is fine’. I wasn’t fine, I was lost.

I managed to stay through the whole of my exercise class that week- something that in previous weeks I had been forced to bail out on due to my heart not slowing down enough to stay vertical. I was pretty proud of myself for this and imagined each song as a ‘level up’.  At the end of the class I played the Mario level complete tune in my head.

Week Four – When It Gets A Bit Fast

Week four was when things started to turn around. Not only am I feeling less depressed but I find myself laughing and dancing and singing. Not sleeping because I have the creative drive”. The family my social worker and I went to see would like me to know they want to swap rooms around so that I would potentially have more space. I think this is the best thing ever. Something in my feet asks if in my now majestical mind would see even a wheelie bin in Skegness as a luxury home. But there is no way of knowing until this mood dampens a bit. I seem really happy and I am, but my thoughts are coming at 100 miles an hour. I go to the shops and buy lots of things I don’t need with money I shouldn’t spend. I waste a lot of time too and no I don’t need to eat because I am superhuman. I get angry at little things or when my words don’t explain the enormity of my feelings. I get annoyed when people don’t understand the encryption code my mouth seems to put on my thoughts. I spend five hours bleaching and dying my hair so that it is bright blue. Everything is fun and I can’t stop talking but when I panic I really panic.

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And it is in that flurry that I write this blog post… This is my way of both filling in the blanks from when I last posted and also I wanted to share how some illnesses send you round and round in a cycle.

All GIFS: Giphy