Confidentiality.

Hi everyone,

Today I’d like to discuss the word “Confidentiality”…

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There’s been a lot going on lately. I’ve been uber stressed trying to get myself organised for an event which took place at the weekend, but also trying to post my views on the Festival of the Brain event, which was held a couple of weeks ago.

I’ve got a friend in hospital, my neighbour is a pain in the backside as usual, and as things were going well, it was only a matter of time before the world come crashing down on me again.

Last week I opened my mouth about this blog and it’s opened up a whole can of worms about “confidentiality”.

I believe that throughout the time of me sharing my thoughts with you, I have remained as confidential as I possibly could, without naming names or places. Mostly to do with my therapy group. You see, I would hate to read what others had written about me, if they have written about me, and mostly if they were writing about my life and sharing things that I did  or said in the group. However, I don’t expect anyone to do that, and I would hope people would trust me enough to not share their information too. But it appears not. No matter how much I try and drum it into the therapists heads, that I write about my feelings and my thoughts, it’s still breaking the agreement.

So, what did I do? I left.

If I can write about my experiences of therapy when I have left the therapeutic community, then I’ll just leave, because it appears that sharing my experience is currently breaking the rules and I am unable to continue writing this blog.

I find it frustrating how I read so many other peoples blogs, who are still in therapy, even in hospital and yet there doesn’t seem to be any repercussions.

I tried my hardest to keep this as safe and as confidential as I could, that at one point I didn’t even want you to know my name, and then a few weeks ago when I was looking forward to the the Festival of the Brain, I thought I’d like to start making it more personal, and asked for permission to use initials of people, and hey – I haven’t even got round to mentioning my wife name yet! That’s how confidential it is!

Apparently, the reason why I am unable to write about my own experience in the TC and my thoughts and feelings after such a session are because, there aren’t many TC’s in the area.

I’ve not said anything about the TC, and I said it’s a bit late now to change the word to “therapy”, or rather not discuss my experiences at all… Because the damage has been done. I’ve basically broken confidentially for mentioning the words “Therapeutic Community”.

Now, I currently have 74 blog posts, and I really don’t want to go through them all, but if I take you back to my second one, that was the first time I mentioned I’d left the community and joined leavers group. The third post discusses boundaries, and how I felt leaving the main group, and even mentioned “service users”, who could be anyone, as much as the next times when I mention “members”, I mention connection with a therapist, but don’t say who, and jeez, you must have to really dig into my life to know who all these people I have ever so briefly mentioned are. As far as I can see, if you don’t know me, I have been as confidential as can possibly be!

There was also a post called “Art Therapy”, where I said I’d made a new page and shared all my work from art therapy… Are they now telling me that MY WORK I am unable to display?

So, what can I write in this blog if I cannot write about the experiences of living with mental health?  Focus on the chronic pain side of things? Are they wanting me to remove all my previous posts?

Let’s just say that right now, my head is a wreck. I am at a loss of words – other that the angry venting I am currently sharing.

They have destroyed a part of me, and I don’t know where to go from here with my blog. And I am sorry for letting you all down.

Erica

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NLO Guest Post – Don’t Let Your Fibromyalgia Define You

Hey everyone,

I was delighted to receive a request on Twitter about writing a guest post here, and of course I’d more than happy to share stories and spread the word about life with chronic pain and mental illness.

I’d like to thank @NLOFibromyalgia for this post. And I hope that you too find it particularly helpful!

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Sarah Borien lives in South London, UK, with her partner and cats. She has had fibromyalgia since 2009 and is passionate about finding and sharing new coping strategies. By day she works in corporate responsibility and the rest of the time she writes for her blog, A Life Less Physical and for NewLifeOutlook|Fibromyalgia.

Don’t Let Your Fibromyalgia Define You 

For many fibromyalgia sufferers, the road to diagnosis is long and complicated. We spend months — sometimes years — struggling with our pain, feeling scared and alone, whilst trying to muster up the energy to convince other people that our pain is real. By the time we’re diagnosed, we’re relieved to have a label for our pain — and that label becomes our protection.

The question is, how do we accept that label and work within its boundaries without letting it define us?

Understand the Label 

First of all, it’s important to find out what that label means. Fibromyalgia is a lot of things to a lot of people, so it’s worth doing your research and gathering the facts.

Let’s not throw the term around without being able to answer the questions and defend the challenges because, sadly, the label we’ve been given is open to criticism.

A good way of checking your knowledge is to test yourself. Ask a close friend what they would like to know about your pain, and answer the questions as factually as you can. Being able to separate the fact from the emotion will help you to understand what this label means.

Understand Your Pain 

It is one thing to understand your condition, but quite another to understand how it relates to you as an individual. It can be so easy to learn the facts or read the stories and think that all fibromyalgia sufferers will experience all symptoms all of the time.

But your body is unique; it will respond to different treatments, different diets and different lifestyle changes in a whole host of different ways. Learning to understand fibromyalgia exhaustion and pain is a long process, but I think it’s the most important step in managing my condition. All the textbooks in the world won’t explain how my body feels after I climb a flight of stairs, so listening to my body gives me the understanding I need.

Test Yourself 

It’s very easy to use your condition as a reason not to do something, especially if you’ve suffered from fibromyalgia for many years. The label becomes the shield we use to stop ourselves being hurt any further, but you are not fibromyalgia — you are so much more.

Last month I went “glamping” for the weekend. My partner adores being in the middle of nowhere, so I put my pain to one side and booked us a trip to the countryside for his birthday.

When the man who owned the tin hut we were staying in suggested a “short” eight-mile walk, I laughed. No way. And yet, somehow, after a hearty British fry-up we set off on the country trail and I managed the whole eight miles.

I suffered for it, but it was absolutely wonderful. Sometimes, just sometimes, it’s important to see what you’re capable of.

Boundaries Aren’t Restrictions 

As with most things related to fibromyalgia, balance is the most important thing. I find doing something that requires a bit of strength and a bit of effort is a great way to keep on top of things.

Going for a short walk, going to work, or making the bed is a way of testing myself and understanding my pain — it re-establishes the boundaries I have to work in.

Recently, after a fairly long period without a flare-up, I thought my fibromyalgia was getting better. What a fool I am!

Pain — although still there — seemed to have been manageable for some time and so I went into town for a bit of shopping. I lasted less than an hour before the pain was so fierce that I could no longer walk.

It was a sharp, horrible reminder that fibromyalgia has the ability to shock us, even when we think we’ve got it sussed.

Although I felt sad and sore from the experience, it reminded me of my boundaries. One hour has always been my time limit, so I know I have to work within that. It doesn’t mean I can’t leave the house — it just means I need to keep an eye on that clock.

Labels are everywhere and people are making judgements about us all the time. In a world where we’re trying to break down barriers and challenge people’s stereotypes, don’t make things harder for yourself. The label is here to help us, not define us.

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If you have found this guest post useful please check out New Life Outlook.

Don’t forget you can follow me on Twitter at @ghostwithinme and hit the “follow” button on here and subscribe to my blog!

Love Erica xx

Normal: Festival of the Brain – Part Three

Hey everyone,

I apologise for the delay in this post. After the last one, I needed a bit of a break from the screen and to allow my fingers and wrists a break from typing. There’s also been a few things going on which have prevented me in being able to write this… Writers block and emotional pain!!

So here I am again, sharing my experience of Normal: Festival of the Brain, and this time  discussing the final day of the festival – Day Three (Sunday 29th May).

Like Part One and Part Two, I’m just going to mention that this blog post may be potentially triggering. Mentions depression, addiction.

The reason why I’m writing about the event in a couple of posts is because of the way that writing it all down is making me feel. Just keeping myself safe! (And hopefully you guys too!)*

This was the day I was most anxious about. Not because it was the last day of the festival, but because of one of the events it held.

If I just take you back in time, before the event even started… To a time when the brochure was posted through my door…

My wife and I love receiving post, unless it’s in a brown envelope or a bill… (I mean who doesn’t enjoy receiving mail through their door everyday?!)

The postman delivered the brochure, and I was quick to rip the packaging open and see what new theatre events they had on of interest to me. (Anyone who knows me, knows I’m most at home in an auditorium!) There were events which started to jump out at me, and it wasn’t until I got to the middle section, I realised there was an entire event holding all these shows which I’d shown interest in. I continued to look through the events and decided that highlighting the ones I’d *need* to go to would be best! It wasn’t until I saw a name I recognised. Squealed a little bit, and then urm-ed and ahh-ed about whether or not I should attend.

So, which event was this? One which would take me back a year. The event was being held by one of the therapists at the therapeutic community, my link therapist, and the therapist who, yes *the feelings get confused and I’m-slightly-embarrased-now*, ah (I may have to re-direct you all to a past post, or maybe not!) ANYWAY, needless to say, the event got highlighted, and I thought I should give it a go, as I loved Dramatherapy when I was at the TC and it would be interesting to see if it  would show me how “far I’ve come or not!”

I was in Folkestone the same day the brochure was posted, so I was able to book the event there and then. My wife and I went down to the box office, and the staff kindly processed my order, and on every ticket, I’m double-triple-checking that my wife doesn’t want to join me, and I would in fact be attending the event alone…
I had to ask how many people had booked for the Dramatherapy event, and when I was told I was the first to book, I thought I best let my therapy group know, and demand they too purchase a ticket. Fortunately (and eventually), several of them agreed and booked their place on the day. *Relief!*

So, back to the present day, or rather this particular Sunday…

A friend of mine was supposed to be joining me for the ride to the theatre, but she’d had a bad night and needed to pull out. I pulled up outside the theatre and saw another one of my friends (S) walking up to the entrance. I text her to say I’d just parked up and that I’d meet her where she was, but I think I got to her before she’d even seen the text!

We headed inside together, a little early, and made our way upstair to the bar…  S needs her Coca Cola, so she pretty much demanded a coke from the bar waitress. “I need coke!”, “Sorry we don’t do that sort of thing at this establishment!” was the response. It was hilarious and a kick start to what would be a hopefully fun-filled exhausting day.

Whilst we were waiting, our friends from Saturdays event turned up. We’d be attending most of the days events together again!

WORKSHOP: Who Am I? Dramatherapy Workshop

I head down to the theatre with S, V and B, and we surprise the therapist with our attendance. I asked how she’d managed to bag the theatre space and not the meeting room, perhaps a nicer environment for some dramatherapy?

We started the session by introducing ourselves and if we’d done drama therapy before. It was nice to see that there was a mix of people who said yes and no. I’ve become friendly with a couple (the woman who helped me run into the newspaper on the Saturday night and her husband), and the husband was there, so even seeing another familiar face was nice.

We then got to pass a ball around and finish the following sentences: “I want”, and “I need”… It was interesting to see the majority of us, me included – wanting and needing more time! I really did because of preparing/hosting a stall and needing everything completed at our local Pride! (Fortunately now, a week and a half later it’s all complete!!)

After we’d worked on introducing ourselves and telling each other something we’d want and need, we got to choose an item from a variety of objects which were spread about on a blanket.

I picked a bottle which said “Drink Me” on it, as I was drawn to the tag, an obsession with Alice in Wonderland (most particularly at the moment with the release of Alice Through The Looking Glass, and wanting to see it because I’m a huge Tim Burton fan), plus the constant repeat of P!NK’s song “Just Like Fire” which promotes the movie.

Of course, we had the option to explain what drew us to the object, so I explained the above!

Our final task was to pick out objects which we could use to represent a timeline of our lives. It was fairly challenging and interesting to see how different we all were with our set-ups and objects we chose to represent certain parts of our lives.

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I chose a couple of postcards: one with fields on and the other with women in different colour dresses, a clapperboard, pinecone, wooden bowl, a broken artists mannequin, and a karimba aka thumb piano.

A brief description of these objects were to represent the playfulness as a child and running in the woods/fields, climbing the hay bales, as well as where I’m at now, with my musical and creative personality. The wooden bowl represented a circle, and how I always get caught in a loop, so the objects, had I’d thought more about it, would’ve been set out in a circle. I am so drawn into the fantasies of “the perfect family”, and when that doesn’t happen, I get caught up, find myself, and then get caught in it again. Always seeking that perfection.

It was a really good session and we helped clear up before heading back to the café. There were a couple of workshops I was interested in attending but they were sold out. I wasn’t too upset about this as I knew I’d already booked a lot for the weekend, and had already been overloading myself with information.

B had booked a ticket for a workshop “Mindful Writing”, which was one of the events I was  interested in, and offered it to me or S. So, I decided to opt out and draft up notes for the blog, thinking I am working hard on learning about mindfulness elsewhere, and pushed S into doing the event as she had decided to stay for the day.

We all spent the next 1 1/2 hours socialising, and at some point, the therapist also joined us. It was really nice because we were all treated like “normal” human beings, and socialising like friends would.

TALK: Addiction – Why? What? And Ways Out

This talk was held in the café, opposite the alcohol.It was a bizarre setting, and perhaps not the best for this sort of talk. Although, this helped address the issues people can have when faced with addiction. I find this topic interesting as I have younger brothers with these issues, one drug-related, the other alcohol. These issues tormented our family life for many years through their teens, and occasionally still get raised as ongoing battles.

It was an informal conversation with guest speakers from Public Health England, Turning Point, Meditation Trust, Angelus Foundation and the Maudsley. As guests, we were asked to be mindful and compassionate as well as be aware of confidentiality.

Due to this fact, the notes I’ve taken were very brief, and for this reason I feel it is best not to comment on the subject. However, I would love to take the opportunity to state that recovery from addiction is possible. If you can find something meaningful to work with and build structure with it, then you can latch onto it and find a positive route away from the addiction.

I’d like to use one of the guest speakers, Malcolm Allen, as an example who had been to art school, and found himself caught in the trap, and has now gone onto become an amazing artist. These are just a few pieces of his work which were installed around the room.

After the talk, we had time for some lunch and to digest everything we’d just heard. It was a lot to take in. It really did make me think of my brothers and how I wished they could be there to watch. If only we were all talking!!

THEATRE: People’s Stories 

I thought this would be an important part of the festival to attend. Listening to others experiences and realising that you’re not alone is such a major part in helping yourself. Of course, the stories weren’t easy to listen to. In fact they were challenging. They were well thought out, and the portrayal of each story was incredible. Each story had so much creative detail, they literally painted a picture in your mind and it was as if you were there experiencing a similar issue. Of course, it also hits the nerves of “OMG, I completely get where they’re coming from”.

I guess that talking about your own experience can in a way be therapeutic. After all, years of counselling and therapy and I can discuss most things with ease.I can detach myself from the feelings, (to a point), and often find myself working things out or discussing more each time I tell the story. There’s still only one story I can’t talk about which I’m trying to work on with my care coordinator. But I think it’s going to take a while before I can talk about it over and over, mostly due to the humiliation it makes me feel.

By sharing stories, it helps us all realise it’s okay to talk about mental health and it gives others permission to talk about it too. Even if they haven’t experienced it.

The next show was again not for a little while so we got to socialise some more. It was really nice discussing everything we’d seen, and how we were all feeling without it feeling like a therapy session.

THEATRE: Caroline Horton: All of Me

This was a brilliant “scratch” performance. It’d been performed at the Pulse Festival in Ipswich earlier on in the month, and although it was only a short performance, you could really see the thought and work process which had gone into producing it. It was downright bizarre and that’s what I really liked. It was hilarious and entertaining, but she gripped the audience with her eyes, her voice, her movement. The props use were small and basic, but had such a big part in each story she told. It worked really well as the pieces were fragmented and it seemed very manic but also very low. I cannot describe this piece any more, other than it was extremely inspiring!

THEATRE: Demi Nandhra: Life is No Laughing Matter

I didn’t write any notes at the end of this show, and that’s because my emotions got the better of me by the end of the night.

I’m trying to think about how this show got to me. Originally I wasn’t going to see the show, and I left it to “chance”, and asked S if she wanted to go, and if so, I would stay.
I don’t know why I didn’t book the tickets as soon as I’d read “…a unicorn hunt and lots of love”. A UNICORN HUNT?!

As S said that she was interest, I said “Okay, let’s book it”, and when we were watching the show, I couldn’t believe I almost missed it. I was so drawn into the story, and how Demi brought depression to “life”, and at moments of utter chaos and hilarity had me in tears of laughter… At which point, the tears caught me.

I was fine one minute, laughing and crying at the sight of how difficult it actually can be to train a dog to do something (I tried with my rabbit and had little success too!), to suddenly holding in the tears at realising the pain I associate with when it comes to depression. It’s like there is no escape, no matter how hard you try. (There is an escape, it’s finding it!)

When the show finished, my heart sank, and I turned to S, and said I needed to cry, but had no idea why. She’s telling me to let it out. (Not a good thing for me, but seemed to be a positive thing for everyone else!) I’m saying “I don’t know why I’m crying”, and it’s not until I get dragged off to see the onsite counsellor that I get to work out these feelings. He said it was okay to cry, and that every tear is a diamond. If that’s the case, I’d be a multi-billionaire with the amount I’ve cried, but even still, it’s a nice thought. Each tear is precious. A positive feeling despite the sadness (and sometimes joy) which come with it.

I don’t really want to go into what I worked out just yet, so will discuss the rest of the evening…

At 9.30pm they had a “Closing thanks” to celebrate the festival and to say thank you to a local lady, Jackie Fairlie, a mental health activist, and devoted supporter of Normal?, who passed away earlier this year. I could really sense the pride and compassion everyone had for the event and this lady, even though I’d never met her.

Although the rest of the night was emotional and lovely, worthwhile and inspiring, unfortunately due to recent events in the past couple of weeks, I feel it is best not to divulge into these details. I apologise for this, and I do wish I’d have the courage to discuss more with you, but I fear for my own sanity and worry about the impact of others. (More will be revealed when I find words to discuss what’s been going on!)

I’d like to thank you all for reading my blog about the Quarterhouse event, and hope you have had a useful insight into the festival and will consider taking part in the event or coming to see the festival next year!

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To keep updated, please follow my blog and don’t forget to check out my twitter where I share retweets as well as post my own thoughts and feelings in the shorter character allowance!

Tweet me at: @ghostwithinme

To contact Normal: Festival of the Brain, or for more information/join the mailing list please check out: Folkestone QuarterhouseFolkestone Fringe@BrainFestUK

Also, click on the thumbnails for more information of the talks, theatre shows, workshops and events which took place this year!

Thank you for reading!

love Erica x

Normal: Festival of the Brain – Part Two

Hey everyone,

I’m back again to discuss Day Two (Saturday 28th May) of Normal: Festival of the Brain which was held in Folkestone at The Quarterhouse theatre.

Like Part One, I’m just going to mention that this blog post may be potentially triggering. I don’t think there’s anything in here, but I just want to warn you just incase… Particularly for the bit about: The Ship of Fools. (Please don’t read if you feel unsafe, thank you)

The reason why I’m writing about the event in a couple of posts is because of the way that writing it all down is making me feel. Just keeping myself safe! (And hopefully you guys too!)*

So, Day Two…

Today I would be visiting Folkestone alone. I didn’t know if anyone I knew was going to the festival so leaving the house was a challenging one. “I have all these tickets! I can go! I can do this!” I had to keep telling myself. It felt weird leaving my Wife at home, I’m still baffled as to why she didn’t want to join me. Still, she could see the progress I’d made, even just by booking the tickets for one! Now it was just a matter of getting there. I’m on my way thinking about how the day could be, if there’s going to be anyone I know and how I will manage if there isn’t anyone I know. After all, it’s not just for an evening, but practically an entire day!

I arrive with about 10 minutes spare. I’ve filled up my water bottle and made sure I’ve this time brought a notebook with me. My iPad is in my bag so I can make notes too.

I feel as though I’m tiptoeing around, trying to find where I need to go. I’m lost and have to ask a member of staff. This wasn’t what I’d imagined. I had to ask where the “meeting room” was as there was no sign in the lift, only “1st floor: cafe, 2nd floor: staff only and 3rd floor: restricted access only” (Either that, or something similar, I didn’t write it down!)  So either way, I was lost!

The member of staff was really friendly and made me feel comfortable for saying I was lost and had no idea where I was going, as well as being trapped in a small lift with her as she directed me to where I needed to go. In the lift, I explained I didn’t know where I was going and how unclear it was, and we laughed at the sign in the lift which had no mention of the “meeting room”.

Next year, I think a little sticker needs to be placed for the event to let us know, so we don’t find ourselves tiptoeing around worried we’ll end up somewhere we shouldn’t be! It wasn’t until we go to the 3rd floor that arrows appeared to direct us to the room. The member of staff was issued with a thanks from another team member who’d been preparing to direct people, and I too said my thanks, and quietly made my way into the room.

WORKSHOP: Music & Emotion

I sat on the only different colour chair in the room, about two seats away from the front but with enough distance to see what was going on around me. We would be sat around tables and it felt a bit like a school class. To be honest, it was quite exciting as I have absolutely no idea what was going to happen. The man was sorting out the paperwork and laptop on his desk, and I placed my iPad and bottled water on the desk. I soon realised I’d left my notebook in the car and set up my iPad to “Notes”, so I could type away.

The room began to fill up a couple of minutes before the session was due to start and it was then when I noticed a couple of familiar faces!
One of whom was the lady who’d been on her own the night before sitting behind me for Byron Vincent’s show. We’d discussed an arts and social network myself and a therapist are hoping to get started and she said she would be interested and handed me her card so I can contact her when we’re a bit more developed with the idea. (I’ll have to let you know about that another time!)
I was excited and relieved to see my friend V and she gave me a hug and said hello. She took her seat next to B, the other familiar face. I know V and B from the therapeutic community. I said hello to B, and I’m anxiously thinking “what does she think of me?” and “oh gawd…”, all because we clashed and had our fair share of arguments in the therapeutic setting. Still, we’re in the “real world” now, and I’m on my own and I know we can do this. “Lets put the hard work into practise!” I say to myself, and then the lesson begins…

We went around the room saying our names. Arike is first to speak, an experienced counsellor and artist is the one leading the session. A couple of people in and I say my name, and we go round the table until we get to the end. I’m already starting to feel awkward, I have my iPad out and everyone else has notebooks, or grabbed blank pieces of paper which have started going round the table. I grab a couple myself and decide it’s more polite to take notes with pen and paper, like everyone else than it would be rude to type it up.

We’re given several types of music to listen to. As each orchestral piece was almost 30 minutes long, we listened to the introduction for about 2-3 minutes each, and noted down how the music made us feel. If we wanted to we could read out what we’d written. There wasn’t a time when I did, but I am going to share here (I only noted down a few of the musician/composers, I’m afraid!):

  1. Terry Oldfield: Spirit of the Rainforest – Reminded me of being alone and wandering feeling confused and out of place, no sense of belong. Trying to find peace and ease.
  2. Duke Ellington: In a Sentimental Mood – Starting with a piano, I notice how the other instruments all gently join in. It’s a calm and relaxing melody, creating a bluesy atmosphere, and I’m imagining smokey rooms and an evening of entertainment.
  3. Gabbro Faren – It was a little difficult to listen to this piece as there were children screaming and playing outside. It may have added to how it made me feel. It reminded me of feeling sadness, sorrow and joy. I pictured people coming together and celebrating a life.
  4. Bartók: String quartets – This piece made me feel anxious and nervous. It made me feel of uncertainty, unsure. Feelings of creeping around an abandoned building, trying to be brave by peeking behind closed doors, and moving through the darkness, and embracing the empty spaces.
  5. This piece of music made me picture a couple on a balcony enjoying a glass of sangria, as they watch the sunset over the sea, and the walkers are in the distance walking hand in hand on the sand. It felt peaceful and relaxing.
  6. This piece made me want to dance. It made me feel as though I could grow and be alive.
  7. A fast and energetic set of strings, try to get people up to dance the tango. The music was also paced out, which I could imagine people deciding whether or not to get up and dance.
  8. Jan Garbarek: 12 moons – The piano made me feel sadness and sorrow and when the saxophone makes an entrance it becomes the poignant part of the struggle and disbelief. The drums sounded like footsteps, which adds to the eeriness of the piece.
  9. Astor Piazzolla: Tango Remix – This was the last piece we listened to. And probably the happiest or cheekiest of them all. The plucking of the strings made the piece feel cheeky, sneaky and suspicious. A couple of us pictured an Inspector searching for clues!

At the end, someone asked if it was a conscious decision to choose all instrumental pieces of music. Arike said that he didn’t want to have music with words because words can define, or his word “prescribe” how we are feeling, whereas music doesn’t tell you what the feeling/emotion should be. If words were to be an option then a foreign language would have been used so they weren’t understood and we wouldn’t be able to tell how it should make us feel.

It was a really good session and it really brought back memories of sitting in the classroom studying for my AS levels! For some reason, that brought sadness to my mind and I was able to distract myself from those thoughts by joining V and B on the next event, which I hadn’t initially booked.

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I headed downstairs to the box office and asked if there were any remaining tickets for the “Food and Mood” talk. Fortunately, there was ONE LEFT!

TALK: Food and Mood 

B and V saved me a space and I was so grateful for letting me sit with them. I’d be spending more time with them and would begin to see how different communicating outside of therapy would be.

Now, one thing I’ve noticed during my time so far at The Quarterhouse is, I’m not very good with “big words” used in mindfulness, psychology and mental health. Especially when it comes to the chemicals in the brain.

I’ve tried to note down what tried to go in my brain at part of the Food and Mood event, and here’s what I think I’ve learned.

Thanks to Dr Legumes who prepared all the food which we were all lucky enough to try out, and for Helen Sharp from the Wellcome Trust, who explained the sensory system and food as well as the nutritious approach to eating…


As you can see by the photos above, they look so healthy and nutritious, that once upon a time they would have been foods I’d have avoided. (There’s one missing as I “downed” the cup of fennel tea before remembering to take a photo! Whoops! – It was good by the way!)

This was the audience lunch sorted today…

We started with a ginger shot made of lemon, ginger and ginseng – which would help keep us alert (so really, I shouldn’t have forgotten to take that last photo!), followed by passionfruit and lemon gel WITH a pansy on top (can’t say I’ve ever eaten an actual flower before… At least, not one I can remember!), which was made with natural sugars and although it reminded me of frog spawn, actually tasted pretty nice!

There was a discussion whilst we were indulged with the above foods, so I’m not entirely sure what these next notes are about (I’m easily distracted!):

The thinking layer is linked to the emotional layer, and it’s about keeping both “happy”. The chemicals such as dopamine, serotonin, adrenaline etc all need to be “fed” to keep the body healthy and happy. We were told that the nervous system is developed in the womb, so it is crucial to what the mother eats, for the best start of a babies life. This is why pregnant women have to take folic acid, and all the vitamins and minerals to boost a better start for the child as well as aiding to her own health.

It’s been proven that 200mg of selenium a week alleviates depression, which you can easily get by eating lots of nuts and seeds.

That’s when we tried the most delicious taster… It was considered an “earthy dish”, but I really liked it. It was made with sage, sesame seeds, soya mince, kale, shiitake mushrooms and pickled walnuts in a little pastry dish.

We then were told that we need to have a good blood flow to the brain (I am sure anyone could have told us that), but this can be done by consuming sources of magnesium, such as chickpeas, and the lovely omega 3s and 6s which can be consumed on a 1:1 ratio, again, more seeds!

Our next taster was walnut and hemp seed smoothie. Oh, my! Now, I’ve been slowly giving up dairy (I no longer have it in my tea – If I can help it, and opt for soya milk instead), and having tried all different types of alternatives I was worried about giving this a go. I was surprised to find my glass empty as I sipped away surprisingly quickly realising that actually, it was very nice!

By taking 900mg of Omega 3 for 3 weeks will increase memory and learning.  I’ve just come across this website which give you all the long words I was on about not being able to remember: Omega 3

Helen Sharp said “Can we eat ourselves happy?” and the straight answer is “No.”

It’s probably a given that if you eat an unhealthy diet you are more likely to be depressed, than if you ate a healthy diet, such as a Mediterranean diet.

The fewer foods in your diet mean the more likely it is you will suffer with depression, yet the more foods in your diet helps with having a “better mood”. I find this interesting because I know far more people who have a healthy, mixed diet who have depression and/or anxiety. I guess this is all on average though.

Next, probiotics!

There’s a biological link to the gut and brain. The gut bacteria produces chemicals which influence the brain, and converts carbs into fatty acids such as butyrate, which enter the brain and determines which nerves cells live or die. At least, that’s what I understood anyway!

Probiotics and Prebiotics reduce cortisol which affects memory. So it’s good to make sure you you intake your pros and pres!

We then tried another tasty treat, which meant instead of getting probiotics from dairy, it was from pickling. Shallots, carrots, beetroot, tofu all on a, what I think is, rye bread.

More notes:

When we are depressed, you made find yourself reaching for the chocolate. This is because back in stone age times, we relied on a fat reserve when food is scarce. So now when stressed we reach for high calorie foods. (Though I know many of us also end up with the opposite effect!)

Low serotonin = Anger and depression,

If you eat a lot of carbs you may find yourself getting quite fatigued. However you could introduce SMART CARBS to your diet and they will help you with fighting that tired feeling…

We got to try a delicious curry made with pearl barley, sweet potato, butternut squash, turmeric and other spices and coconut and spring onion. (As I’v started making my own curries instead of buying readymade sauces, this is one for the books!)

We ended on trying a vegan brownie, and I’m so proud I tried this as the first sound of the word “beetroot”, and I turn my nose up at it… I gave it a go and I was surprised to find it was perhaps the best brownie I have ever tasted. Maybe that’s because I knew it was “guilt free” as it didn’t have any processed sugar and it was all natural ingredients: avocado, blueberry, coconut, beetroot, pecan. All I can say is – YUM!

And then to wash it all down we finished with a Fennel Tea, which we were told helps with digestion.

The end was summarised by saying that alcohol is a depressant, as is caffeine but could be a separate talk on its own.

Mood is influenced by many things and when stressed try not to opt at eating junk food, instead take some time out and if you’re still feeling stressed try healthy foods to help you with your energy and eventually it will make you feel better.

…..

V, B and myself were going to be attending another two events together, so we spent the time between events socialising, and we looked at an installation called “Ship of Fools”, all I can say from the short clips we saw, it was quite humorous!


WORKSHOP: Singing for Wellbeing 

We made our way back up to the “meeting room” for the next event, which was already filling up quickly. We took three seats in the corner of the room. It was set out differently to the Music as Therapy workshop, and had the tables collapsed in a corner. We sat with Arike who’d presented the earlier workshop.

I LOVE singing! I sing a lot. But not as much as I used to. This was a great workshop! And we learnt some of the lyrics on this page:

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It really made me feel like I “belonged”, I love singing and it made me want to join a choir I’d left a few years ago when things started going horribly wrong in my life. (I mean, things had always been going wrong, but 2011 was a very, very terrible year for me!)

After being brave and asking about putting a harmony to one of the songs –

I wanna sing it, I wanna swing it with you,
I wanna sing it to a world so blue,
So let’s get singing, we’ll soon be shining,
The world in harmony.

(I could hear it in my head) and asking B to work with me on it, and of course I swear we failed at it, but somehow it worked, I decided that it was time for me to get back to singing “properly”, I’m clearly “out of practise”, so I text my friend who’s still a part of the choir and asked when the next rehearsals were. Go me! Now its just a matter of turning up, and after this weekend, I’m sure I can do that?! Funnily enough, after speaking to Sadie Hurley who ran the workshop, I found out she too attends the choir I was a part of, so I’ll be seeing her again, and hopefully she can teach me a thing or two!

…..

Once the session ended, V disappeared on her phone so me and B were left together. We’d been getting on quite well, and it was nice to see how different we both were considering we’d once clashed in group. We watched a series of films which were running throughout the afternoon, as part of Film as Therapy. It wasn’t a big space, nor an event you needed to book for. So we perched on the benches, and watched for 20 minutes. Each film showed different stories relating to mental illness. It reminded me of my short experimental film I made when I was at school for my AS level. I’d like to say I have come a long way, and that then makes me realise how troubled my life has actually been. I still find myself easily drawn into “darker” things, so I have to be careful not to trigger myself. I use my art to express myself, and it’s much easier, for some reason to do this when I’m feeling down, than when I’m in a good place. Then again, writing this now – I feel okay, just a little spaced out.

…..

THEATRE: Brainsong

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This was a hilarious approach to expressing/discussing mental illness. Of course it did have its serious notes (Please excuse the pun), and addressed a variety of difficult illnesses, particularly OCD and Tourettes. Written by Anna Braithwaite, she’d composed a delightful musical sketch for each illness, with words and music based on interviews.

We could sit anywhere in the auditorium, so I followed behind V and B, and tucked into a row several rows up. We were on the end of the isle, not for a quick escape, but more so because the room was already filled with a lot of people.

Of course, it was dark when we arrived and although we’d been handed the brochure, there wasn’t time to read before the show started. Had I’d read the brochure beforehand, I may not have been brave enough to ask a question…

Listening to the music reminded me of a composition I was part of in year 9 called “Songlines and Longlines”, written by Barry Russell and Tony Harris, and those of us in year 9 for Canterbury Festival… This was back on 12 October 2001! (I have the CD which I have dug out for a listen!)

I was also reminded of a show I’d recently been to see. Tourettes Hero: Backstage at Biscuit Land. I’d met Jess Thom at the end of her show and told her I was so inspired and I wished I had her confidence. She told me I could do it. So… One day… I’m still dreaming several months later!

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It was the tic “Biscuit”, which made me have Jess in my mind. Jess says “biscuit” a lot. I cannot remember how many times a day (which is so frustrating for me), but it is a LOT.

During the Q&A at the end of the show, people seemed to be asking questions with ease. It wasn’t the first time I had questions rattling around in my brain. I’m usually too scared to ask as I stutter and forget what it is I want to ask! I thought I’d give it a go, and as soon as my hand went up, my heart started to thud against my chest. The microphone was placed in my hand, and I could feel myself beginning to have an anxiety attack, the feelings of your heart pounding so much, that your mind feels like it’s going to explode, that you can’t breathe properly, but you have to keep yourself looking calm in the moment so those surrounding  you can’t see the panic, and BAM! It was my turn to talk. I couldn’t hand the microphone back now or back down, I’d look like an idiot for saying I couldn’t do it. I’m sure they wouldn’t have minded but I needed to talk now or “forever hold my peace”. “Hi”, (oh gawd, she’s still talking). I’ve interrupted! I wait a little longer and then I get my chance to ask again. Of course, when the words start to flow and I can hear myself through the speakers, I speak with ease and confidence, my heart slows down and I feel relieved that I’ve managed to ask a question without stuttering. “I was just wondering that with one of the tics you chose, was you inspired by Tourettes Hero?”, “Biscuit”, she says and yes. (Remember that I’ve not read the programme yet either!) Anna Braithwaite says that she’d interviewed Jess about 6 years ago and had also had permission to use some of the tics which Jess uploads to her website. Ah-ha! I felt so relieved I’d managed to get an answer to the question I’d been almost-literally-dying to ask, and my friend V kindly said “Well done” as I breathed a sigh of relief!

…..

V and B weren’t going to be watching the next theatre show, so I had just under 45 minutes on my own. It felt like the night before where I was hovering around wondering what to do with myself. I’d started to feel more at ease, but then I ended up with an erratic-crazy-woman saying “I saw you yesterday, are you having a good time?”, “Are you excited to meet the guru?” Err, yes… Yes I am??

Little did I know that this was the beginning of what would be a bizarre, chaotic, crazy and entertaining, full-of-energy show!

THEATRE: Karla Shacklock: The Happiness

When I wrote my notes about this show, I simply wrote:

Lots of newspaper!
Creative and chaotic way of expressing Happiness!

When I saw the piles of newspaper, I had an incling as to what was going to happen… More so when you see a large broom also as a prop. Ah-ha! I felt all “giddy” inside and frustrated I didn’t have anyone I knew with me to share the experience with. It wasn’t until the end of the show where lots of newspaper was thrown about, that they offered the audience to participate in rolling around and throw the newspaper about. As I was sat in the front row in the middle, I asked the lady sitting next to me “Please will you do it with me?”, she double checked I wanted to, and took hold of my hand and we went in together and rolled about, being the first to experience the amazing feeling of what rolling in newspaper felt like! It truly was, pure happiness and I drove home with a massive smile on my face and felt a bit like an idiot in doing so, but in those moments I DIDN’T CARE!

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THIS WAS ONE OF THE BEST MOMENTS OF MY ENTIRE LIFE!!!
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To keep updated, please follow my blog and don’t forget to check out my twitter where I share retweets as well as post my own thoughts and feelings in the shorter character allowance!

Tweet me at: @ghostwithinme

To contact Normal: Festival of the Brain, or for more information/join the mailing list please check out: Folkestone QuarterhouseFolkestone Fringe@BrainFestUK

Also, click on the thumbnails for more information of the talks, theatre shows, workshops and events which took place this year!

Thank you for reading!

love Erica x

Normal? Festival of the Brain – Part One

Hey everyone,

As I mentioned in my last post, I was off to the local Festival of the Brain which was held in Folkestone at The Quarterhouse theatre.

*Edit: I’m going to mention that the next couple of blog posts may be potentially triggering. Tags include; self harm, suicide, dementia, Alzheimer’s, psychosis, bpd, bipolar, depression.

The reason why I’m writing about the event in a couple of posts is because of the way that writing it all down is making me feel. Just keeping myself safe! (And hopefully you guys too!)*

Although the event started on 25th May with an evening production and the 26th May with the launch event, I didn’t attend until the 27th May. The first couple of days were focusing on dementia, and I guess I found that a little difficult to manage with the thoughts of my granddad living with Alzheimer’s and dementia. Our relationship shattered when I was studying for my GCSEs, and my family ended up in one big row which divided us up for what would be until the present day. The struggle now is, as my grandparents got older, and sicker, how can I forgive when I cannot forget? I have been trying my best to see beyond and although there is slight forgiveness (or rather a “let’s just be polite to one another”), I missed out a lot of my youth without the people who should have been a positive influence on my life due to their own actions. I’m trying to come to terms with the fact that my Grandad who barely sees me, will probably never recognise me ever again, or not understand that he has grandchildren, and I dread to think how my Dad and his sister and even my Nan will feel once he forgets who they are too. It’s a disease I have never understood and struggled with. Perhaps the talks I missed may have helped shed some light on the illness for me, but at the time, I felt they may have made me realise what I was also missing out on, and that is having a relationship with my grandfather and grandmother.

So, back to the 27th!

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TALK: What Do You See?
I attended a talk by local artist Shane Record and psychotherapist Danuta Lipinska, with my brother. Firstly, I am surprised (and over the moon) that my brother joined me, as I really thought he wouldn’t be bothered and let me down, as I’d made sure I got the extra ticket for him. Why? Because in the programme it stated:

…Explores what exactly we see when we look at a painting and how we each have a unique perception of what we are looking at.

My brother wants to become an Art Therapist. I say, great! He loves art, and he is very much into his psychology, philosophy and ethics, as well of course art! In fact, he is very dependant on his art to explore his emotional state of mind, whether it’s through surreal acrylic paintings, or what appears to be poetry written in a state of psychosis.

I figured that the talk would be interesting, he wants to be the Art Therapist, I’ve done Art Therapy and still continue to use art as my main medium of exploring oneself, so I had this gut feeling that I was doing the right thing….

We took our seats on the back row of the gallery seating arrangement, in the corner, and observed the paintings (and prices!) around us. I eagerly said to my brother “This is what you could do!” Hoping he would sense my enthusiasm and encouragement. I asked him to make sure he took notes, so he grabs his notebook and starts doodling away.
As the talk starts, I see him noting down the elements of the periodic table. I’m not too sure what this has to do with anything Shane and Danuta are talking about, but I leave him be. The talk was frustratingly aimed at exploring art with dementia patients, despite not mentioning this in the brochure. I sit there feeling awkward but trying to take in all the information I can. It wasn’t until they mentioned something about sense of self, where I become interested and start noticing a similar pattern with BPD. There was talk too about seeing a distortion of reality.

Sense of self: Something I struggle with. And although I may have been through a programme which helped me vaguely find my identity, I still feel utterly terrified about this person I seem to have become. Most particularly over the past couple of months. Sense of self: one’s perception of oneself. Who am I? I feel as though I will never be the person I think I should be? But who is that? I find myself going around and around in my mind, all these thoughts and feelings. The memories of staring into the mirror, staring into glazed eyes and searching deeper and deeper into the soul to find emptiness. To not even recognise who I am. I just entered a world of unknown and it become a way of torturing myself.

The talk only lasted an hour. I was relieved it had come to an end and my brother and I looked at each other, I could see he too was feeling the same. I’d noticed throughout that his notes had become related to the talk. I’d asked him for a summary of what had happened (of which I’m still waiting for!) as I feel as though I was completely lost that I couldn’t remember a single thing about what the talk was. Yet again, I picture myself staring into the abyss.

…..

TALK: How I Learnt To Walk On Sunshine
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I’d booked in for the next talk back at The Quarterhouse, but my brother hadn’t
got a ticket for the rest of the evening. It was sold out, so I gave him the bus fare home and he kindly asked if I was going to be okay… “Yes, I’ll be fine… I have to be!”

It was my first show on my own, not knowing anyone around me. “I can do this!” I keep telling myself, and I head upstairs to the café, purchase a pint of orange juice and lemonade (I’ve made it that far!) and quietly wiggle my way through the seating and take centre place in the middle row. What I didn’t realise was that there wouldn’t be anyone sitting directly in front of me, so I ended up catching the eyes of Rachel Kelly quite often!

Rachel Kelly shared her story with the audience. She’d suffered two episodes of severe depression and been in hospital after suffering from severe insomnia, restless and overworking thoughts.

The talk was aimed at sharing strategies on how to cope with depression, and sharing these strategies meant an input from audience participation! (My fav!) On one occasion, we had to talk to someone we hadn’t come along with (easy for me, as I was on my own!) and act as a listener whilst the stranger spoke of at least three gratitudes. I found it easier to listen than to share as I went first and was on the spot. I said to the lady who too was on her own, that I was grateful to myself for allowing myself the willpower to be sitting at this event alone, and that I was grateful to my mind for remaining in a positive place which meant I wasn’t focusing on the negatives of “I can’t do this” or “I’ve got to leave the room”, I could actually stay amongst these people. I secondly said that I was grateful for my brother for joining me with the art talk, it meant a lot to me for him to turn up! And my third gratitude was for my other brother who’d recently announced his book which I’ve illustrated for has finally gone to print and will be available in July! If it wasn’t for him believing in me, I wouldn’t have my artwork being published! Of course, typing this down it sounds like I could have said it all with ease, but being on the spot, I stuttered and found it difficult to think of how to say these things clearly. My brother does a daily gratitude under the youtube account: The Graticast  so I am familiar with finding something grateful in every day, I just sometimes realise how difficult that can be if you’re in a darker or more difficult place.

Another one of Rachel Kelly’s strategies was to be mindful, and to breathe. My permanent reminder – of my tattoo “breathe”, still struggles to teach me… I must remember to breathe. A simple breathing exercise was given to us, one of which I remember to slow down your breathing by half is to simply breathe through one nostril!

I find mindfulness extremely interesting. Especially, when I can find myself feeling and breathing in that moment. But I struggle so much to do it, and I can understand why many people also find it difficult to achieve. (In a few weeks I’m off to do some Mindfulness day retreats, and I’m hoping I’ll be able to take a lot away from them instead if it all going in one ear and out the other!)

…..

Between the talk and the next piece I was about to see, I had an hour and a half alone. I’d taken my camera with me, but I didn’t use it. Instead I took the brave decision to go and surprise a friend who lives locally. We’ve been having our difficulties lately and trying to work through them, and I noticed that I was so anxious that all I did was talk not even providing space for answering any of my questions.

THEATRE: Byron Vincent: Live Before You DieIMG_3214
When I made my way back to The Quarterhouse, I felt weird. There were lots of people huddled in their groups, all eating cookies! It wasn’t until I was offered a cookie, I felt as though I belonged? Is that an odd thing to say or feel? I was still alone, and even when we entered the auditorium, I sat alone, as did the woman sitting behind me. We kindly exchanged laughter and joked that sitting in the front on your own is the greatest way to be noticed by the actors and easier to be picked on if ever that were to be the case. Of course, Byron kindly said he would never put anyone on the spot, and as I couldn’t tell if he was joining or not, I kindly begged him not to!

Byron Vincent and his friend were on stage as we’d all entered the room. They announced that due to Byron having a difficult episode earlier on in the year, which resulted in him being in hospital (Byron has bipolar disorder), it meant the show was going to be what they called a “scratch” performance, never been done before, not sure if it would work sort of show… It may have been a “scratch” performance, but it left me feeling raw and full of emotion. My main emotion was worry. Although, the thoughts about self-harm and suicide float around my mind, an everyday constant battle, it was a friend of mine who this show mainly reminded me of, and that made me realise how much this person means to me. It’s hard when you have a friend who has similar struggles to you, when they’ve ended up in hospital due to their own suicidal tendencies.  The show was a little triggering, but I remained calm and present in the room. I could feel the tears welling up, and the urges to run when we were shown a short clip of Byron explaining a suicide attempt. It was powerful and gripping. I couldn’t believe how brave he was to discuss this with his friend, let alone share it with a theatre full of strangers. My feelings about self harm and suicide are embarrassment and shame, that I struggle to talk about it. I struggle discussing the fact that it’s there always in the back of my mind and that I may even be the happiest person on the room for a moment, and that anything can send me spiralling into the thoughts of harming myself. It’s embarrassing to me. I feel ashamed and although I am slowly becoming more open about it, it’s still something I wished I’d allowed myself to be honest with from the beginning instead of hiding it all, at least then I may have got the help I needed sooner. But hey ho, I’m still here and I’m proud to have come this far!

IMG_3218Byron ended his show on something I think so many of us wanted to do throughout, and that was to just give him a hug… Once one member of the audience got up, there was a queue of people waiting patiently in line to give their hug and whisper things like “Well done” into his ear, despite there being a paper bag between their mouth and his ear. It was a show which I’d felt pleased I’d stayed for and even had the courage to sit through. I was most inspired by the fact that Byron challenged his fear of heights by jumping off a 300ft crane, and also terrified that he got lost in Vegas, but relieved he was okay despite not knowing how he ended up where he had done… As for me, getting lost and separated from my wife in Disneyland Paris was terrifying enough for me!

I’m leaving this post here today as I’m looking at the word count and thinking I don’t want to overload your brains or feelings, and I need to rest from all this typing as I’m now aching like mad (The joys of this “Fibro” thing!)

I’ll be back tomorrow with Saturday and possibly Sunday… Otherwise there’ll be a part one, two and three to look out for!

To keep updated, please follow my blog and don’t forget to check out my twitter where I share retweets as well as post my own thoughts and feelings in the shorter character allowance!

Tweet me at: @ghostwithinme

To contact Normal: Festival of the Brain, or for more information/join the mailing list please check out: Folkestone QuarterhouseFolkestone Fringe, @BrainFestUK

Also, click on the thumbnails for more information of the talks, theatre shows, workshops and events which took place this year!

 

Thank you for reading!

love Erica x