On The Level: March 2024

ONLINE EDITION / MARCH 2024

F ORE WORD

Hello!

World Bipolar Day is 30th March – the date was chosen as that was Vincent Van Gogh’s birthday, and the famous artist has been posthumously diagnosed as probably having had bipolar.

It’s an interesting choice, given how long we know it can take to receive a diagnosis of bipolar. In Scotland, currently, the average is 9.8 years after first presenting with symptoms to a GP or primary care provider.

We thought we’d use the date to shine a spotlight on the diagnosis process. For the past month, we’ve been inviting you to share your diagnosis stories with us on our website. We’ve been overwhelmed by the response. We’re sharing some of them in this issue On The Level starting on page 7 and will continue to host them on our website. These stories constitute an important body of evidence that we will be able to draw on. By the time next World Bipolar Day rolls around, we Image: Vecteezy.com

hope to be a lot further forward in our goal to help primary care staff across Scotland feel more informed and confident in being able to recognise the symptoms of bipolar, and help them to better understand the barriers that can contribute to people experiencing a delay in diagnosis and the impact this can have on someone’s life.

This issue we’re also delighted to introduce a new regular feature, handing two pages over to the bipolar research team at the University of Edinburgh every issue for updates on their research and information about ongoing and new studies you can take part in. We also have an amazing gallery of images generated by AI from prompts given by people with bipolar taking part in the University’s Helios BD study.

So here’s to World Bipolar Day, and here’s to all of you, coming together to shatter stigma and change minds. Let’s do this together.

Kirstin Innes Bipolar Scotland Communications and Engagement Manager

Keyboard Whisperer:

My Diagnosis Story

Our regular columnist David Carr on psychosis

For World Bipolar Day, we invited you to share your journeys to bipolar diagnosis

11

17

Spotlight on…

Cover feature

Self Management Training

What happens when people living with bipolar describe their experiences to an AI art generator?

Edited by: Jamie Stewart and Kirstin Innes Please note that the views and opinions expressed in On the Level are not necessarily those of Bipolar Scotland.

CONTENTS

7

5

21

Submissions: If you would like to submit a piece of writing, a photo or an idea to be considered for future issues of On the Level please get in touch with Kirstin Innes: kirstini@bipolarscotland.org.uk We would also love your feedback about On the Level, Send us an email or reach out to us on social media. You can find us on Instagram at: @bipolar_scotland and Facebook at /BipolarScotland1 ©Bipolar Scotland 2024 Scottish Charity No. SC021705 Company No. 163305 T: 0141 560 2050 E: info@bipolarscotland.org.uk bipolarscotland.org.uk

Research Corner A new regular feature containing updates from the University of Edinburgh’s bipolar research specialists.

BIPOLAR SCOTLAND 02

Noticeboard

The Future Is Peer

Richard Blass and Shona MacColl-Mooney from Bipolar Scotland’s Peer Support team attended the Scottish Recovery Network’s peer support conference The Future Is Peer in February. Here’s Richard’s account of the conference: “The Future is Peer was a Scottish Recovery Network conference and celebration of Peer Support, involving many organisations from dog walkers to men’s sheds. It started off with a recital from a choir and they involved the rest of the audience in singing, which was really uplifting. We as contributors had to describe Bipolar Scotland: who we are, what we do, why it works, and what we have learned through our work. It went very well. We met lots of different peer workers throughout the day and it was a very positive experience. After the lunch there was a drumming session involving everybody (approx 150-200 participants) which was a really great experience – everyone making music at the same time.

I found the whole day really valuable: I met so many positiveminded people from organisations across Scotland. I’d never realised how many organisations involve peer work. It was a real eye opener and very interesting to learn about so many different approaches to helping people from a mental health perspective – that peer support can encompass everything from dog walking and a chat, to men’s sheds, to the work we do as/ with people specifically living with bipolar disorder. We met with staff from the mental health charity Penumbra; they have six peer workers who work in GP practices. It was great talking to one of those peer workers and hearing her perspective on what she does.”

Find more about the Scottish Recovery Network’s new Peer Support Hub here: scottishrecovery.net/peer-support

Fancy some culture?

People living with bipolar in Scotland are eligible for 50% off tickets at all Edinburgh International Festival events with their Access Pass scheme - you can find out more information at the link here: www.eif.co.uk/access

Has a disrupted body clock impacted your mental health?

Or has your mental health impacted your body clock? What questions would you like answered concerning mental health and the body clock? The Circadian Mental Health Network and the James Lind Alliance would like to invite you to take part in a short survey to help shape the future direction of their research. You can find the survey at:

www.circadianmentalhealth.org/haveyoursay

Free counselling in Glasgow Access Counselling have received funding to work with people in Glasgow until 2025 and Bipolar Scotland are delighted to have been asked to be one of their referral partners. That means that our members and people who access our services will be able to access this support for free. All of their therapists and counsellors are professionally registered with bodies like the BACP. If you live in Glasgow, you can self-refer simply by emailing charlotte@ accesscounselling.org.uk and mentioning that you were signposted by Bipolar Scotland (please note – this funding is only available for them to work with people in Glasgow). There is capacity to start working together within a few weeks - no long waiting lists. After enquiring, you will be invited to an initial meeting to explore your needs and ensure you are matched with the most appropriate counsellor. Friends and family of people with bipolar are also welcome to use this resource, as long as they live in Glasgow.

Find out more about Access Counselling at: accesscounselling.org.uk/

Could you do with some extra support just now? Bipolar Scotland’s Peer Support Team have spaces available in both our Beyond Diagnosis and Peers Together programmes. Usually peer support takes the form of a series of phone or video calls one with our trained peer support workers, all of whom live well with bipolar. There’s no cost for these sessions; we’re here to help you.

Beyond Diagnosis is up to six months support, designed to help people who have recently been diagnosed explore what the diagnosis may mean for them going forwards. Peers Together lasts for twelve sessions, and is for people at any point in their bipolar journey who could use someone else on their team.

Working together with another person who also lives with bipolar may help you to: • Explore problem solving and ways of coping together • Find new ways to think about your bipolar • Make sense of your past experences • Learn new things about yourself • Increase your confidence • Move towards your hopes and aspirations for the future To learn more about our peer support programmes, or to refer yourself for peer support, please email Maja on: majam@bipolarscotland.org.uk, or call us on 0141 560 2050.

BIPOLAR SCOTLAND 04

Image: Vecteezy.com

Talk to someone who gets it

THE KEYBOARD

Whisperer

by David Carr

It all adds up! - my journey into psychosis.

During one of my manic phases, I developed the belief that the hotel I had decamped to was run by Buddhists. It was a boutique hotel which cultivated an air of faux quirkiness. Beside the bed there was a card. On one side of the card there were the words ‘Stressed? Please turn over…’ and on the other was the word ‘Relax’ - and a drawing of a man in the lotus position.

This was enough for me. Clearly the hotel was run by Buddhists who were providing me with a safe retreat while I rode out the storm. I knew I was ill, even if I couldn’t quite admit it to myself. I constructed an elaborate backstory to fit my facts. The hotel chain was - obviously - owned by wealthy hippies who wanted to use their riches to spread the word about the way of zen, and I was the fortuitous recipient of their proselytisation. The card was - to me - profound. After I was ejected from the hotel for making a thorough nuisance of myself, I ran around Glasgow, showing it to anyone I encountered, including a minister of the church who I had sought out - I am not a believer - in what I now realise was a desperate attempt to seek help from somebody. Anybody.

I was psychotic. The word is misunderstood by the general public - ‘civilians’ as I call them. It is often given misleading connotations of frantic disorder, even violence. ‘There is a psychotic killer on the loose.’ More accurately it simply means a loss of reality.

This might involve seeing or hearing things that other people cannot see or hear or believing things that are not actually true.

Psychosis can occur in both depressive and manic mood states. In depressions,

delusions almost always reflect the person’s deeply depressed mood. For example, they may become convinced they’re to blame for something, or that they’ve committed a crime. My manic psychosis, on the other hand, gave me such fascinating ideas, which all made perfect sense - at the time.

My memory of that period is less hazy than I would like. With hindsight, I cringe. For all that I try to tell myself that my delusions were caused by illness, I find it difficult to understand how I could come to fabricate such comical ideas. I am often regarded by others as creative. Creativity is a matter of joining up the dots between stray thoughts. But seemingly I can be - well - over-creative.

It is hard to see where the line is drawn.

Then - up popped a new word ‘hypersalience’ - and it all started to add up.

‘Salience’ is a useful concept in neuroscience. The brain’s capacity to process information is limited. We are therefore evolved to focus on what is important - or - salient. An example of this is the so-called cocktail party phenomenon whereby we filter out background chatter but attend to salient information, such as our name being spoken.

But what - I think - was going on with me was hypersalience - the phenomenon of sensory stimuli leaping out at you, the jumping to conclusions based on little evidence, the seeing of patterns where there are none.

Hypersalience is a little-studied phenomenon. There is some literature on visual hypersalience whereby objects can attract the attention abnormally in almost a hallucinatory way. But the most interesting field of study is in the area of psychosis in people who live with schizophrenia. It is hypothesised - here comes the science bit - that a specific dysfunction in dopamine regulation is associated with exaggeration of the importance of information and inappropriately jumping to conclusions.

I latching on to hypersalience the same way that I latched on to a cartoon of a meditating man? It’s hard to tell. Original, creative thought involves bashing together ideas to make something new. I’m good at that. But sometimes - too good? My manias and psychoses have been preceded with intense periods of hypomanic creativity. Genuine creativity. But - when does it go too far?

I have a scientific background, and it has pained and embarrassed me to think that I could have come to such illogical conclusions about the world. Where was the evidence?

The idea that hypersalience might be a biological phenomenon has helped me process. I wasn’t aff ma heid. I just had faulty dopamine receptors.

Science works by the testing of hypotheses. Extraordinary claims require extraordinary evidence. What I have learned from my psychoses is that it is important to step back and evaluate. It can possibly be said that my skills in critical thinking have been enhanced by experiencing the opposite. But there is no time to do this in the racing, manic mind.

But - oh the irony - the truly interesting thing is that I don’t know whether I’m just making this up. It makes sense to me - but am

Perhaps the hotel owners were Buddhists.

It’s possible. Who knows? They probably weren’t. Further investigation is required.

“I have a scientific background, and it has pained and embarrassed me to think that I could have come to such illogical conclusions about the world. “

BIPOLAR SCOTLAND 06

MY DIAGNOSIS STORY This World Bipolar Day, Bipolar Scotland wanted to highlight what we feel is one of the biggest issues around the condition: the trouble with getting an accurate diagnosis.

Currently it takes someone living with bipolar in Scotland an average of 9.8 years to receive a diagnosis of bipolar after first presenting to a healthcare provider with symptoms. Over the last month we’ve invited people living with bipolar to share their stories of diagnosis with us through our website, to highlight the issues around it together. These stories are heartbreaking, raw, sometimes uplifting, sometimes challenging, and they all point to the need for urgent change in the system. (* means the participant has chosen to remain anonymous and this is not their real name)

MICHAEL’S STORY

“Doctors still said it was anxiety and depression, even though nothing worked.”

From the age of 14 I was treated by doctors for anxiety and depression, had years of alcoholism to dull the pain of my head. Been sober now for 22 years, and since being sober my mental health has gotten worse. However, doctors still said it was anxiety and depression, even though nothing worked. Now I’m aged 48, and I was diagnosed with bipolar 2 in October, so still navigating medication and learning each day what my diagnosis means. The NHS aren’t in a position to help give us what we need.

I was diagnosed and given medication and off I went. I’m learning day by day and struggling badly at times, however I do now have a Bipolar Scotland peer support worker who can guide me on this journey.

LYNSEY’S STORY

“I feel I had to educate myself in the illness.”

I suffered with depression and anxiety for many years and was constantly prescribed antidepressants. In 2013 I had a big breakdown and went to my GP, I explained about my mood changing so much and the antidepressants not working and I asked if she felt I could have bipolar. She then asked me a few questions (which I now know relate to number 10 on the bipolar mood scale), and when I said no she simply said well you don’t have bipolar. She prescribed different antidepressants and diazepam. I was never referred to any mental health professionals.

In 2017, after a suicide attempt, I was referred to the mental health team, I was given a CPN and psychiatrist. Again I was prescribed different antidepressants and anti-anxiety medications. I then had further breakdowns and two hospital admissions. In 2019 I was finally diagnosed with bipolar disorder.

Since then, I’ve found life very difficult, I’ve had numerous relapses and hospital admissions and have been on a variety of different mood stabilisers. My private life has been massively affected, as has my work life.

I had to resign from a career I had worked hard to get. I feel I had to educate myself in the illness and I only really see my psychiatrist when I’m at crisis point.

I am now currently working in the same field but not at my previous level or in a permanent position and I often have long periods of absence. I do have good stable periods where I feel like myself and live a good life but I’m always worrying about the next relapse.

I feel that I’m only now at the stage of fully understanding my triggers and warning signs after five years. I’ve never been given a psychologist and I am constantly told I need to learn to manage the condition myself. I have attended a bipolar support group which has helped greatly.

LAURA’S STORY

“I keep fighting and rebelling against the diagnosis” I was suffering from terrible depression in late 2009 after a spell of great health. Unknown to me that the great health I had experienced was in fact a manic episode. I saw a locum GP who was fantastic. She listened to me – she really took time to listen to me. She said I was depressed and I started on my first ever anti-depressant at the age of 24. I went on to decline in health both ways: my downs were deep and my ups were high. I then tried two other antidepressants but nothing was helping. In early 2010 I tried to kill myself.

My locum GP sent me to see a psychiatrist.

He deemed I was fine (cause I was! I was working full time and managing life). But by the summer I was not great. My locum GP went on maternity leave and I saw another GP who said she and the locum GP thought I had bipolar, so I was being referred back to the psychiatrist. I saw the psychiatrist late 2010 and at the age of 25 I had a diagnosis of Bipolar Affective Disorder (Bipolar) Type 1. I started on a mood stabiliser the next month.

Then followed more meds in respect of an anti-psychotic. Today I’m on the original mood stabiliser I was prescribed in 2010 but changed original anti-psychotic in 2016 to something else.

WENDY’S STORY

“Off I went with my antidepressants, until the hypomania and depressive episodes became too destructive.”

I knew in my mid-late teens something wasn’t quite right with my moods or behaviour. It was so confusing. Doctors told me I had depression, and off I went with my antidepressants, until my hypomania and depressive episodes became too destructive. Eventually diagnosed at age 30 with bi-polar 2; it took another eight years to try and find medications to allow me to try and live a ‘normal’ life. Nothing is normal for me having bipolar, but I get on with it.

Like we all try and do. It’s not easy and there are ups and downs but at 46 years old I’m about to graduate with my first degree, and proud of myself for that, no matter how I got here.

Life since my diagnosis has been very very challenging. I keep fighting and rebelling against the diagnosis. I’m slowly coming around to it. You could say I’m stubborn. I’ve lost friends, my work, fun in life but most of all I feel I have lost who I am, who I was and who I’ll never be again. I feel like the meds either zombify me or make no difference at all. I’m trying to be positive and live a good life but it’s challenging. I have come across discrimination when going for jobs, so I feel lost in the working world- will I ever work again? I’m trying to keep busy but it’s difficult when you have few friends (true friends). But life must go on :) There are always positives.... I joined a Bipolar Scotland group and I go along most of the time. I’ve met amazing people through this group.

I’ve joined mental health groups. Again met amazing people. I’ve volunteered for the last 12 years. I’ve had various roles. So I’ve not just sat and taken the pile of nonsense that the bipolar head tells me. I’m kinda proactive if you like :) Image: Vecteezy.com

BIPOLAR SCOTLAND 08

PARVATI*’S STORY

“I wasn’t warned about the possibility of mania being triggered by antidepressants…”

SANDIE’S STORY

“I was never officially told what the diagnosis was - I presumed it was bipolar when they put me on lithium” This my diagnosis as far as I can remember!

By 1982 I had been admitted twice to a psychiatric ward because of severe depression. This, initially, was put down to postnatal depression and eventually diagnosed as manic depression after another depressive episode. I was never officially told what the diagnosis was. I presumed it was bipolar when I read about lithium as a common treatment for the condition. I questioned this and it was confirmed, eventually, by a psychiatrist. I was on lithium for a number of years, but lithium was finally phased out when I was diagnosed with stage 3 chronic kidney disease.

I do not believe that I was ever “manic” creative, energetic, enthusiastic, ambitious - YES! Was the diagnosis just a handy label?

I’m not sure!

I’ve had a few hospital admissions as well as home visits by CPNs, up until 2006.

I was fortunate to have very supportive managers and colleagues at work in my Community Education. I did not feel I was at the receiving end of stigma or gossip. And for almost 18 years I have maintained good mental health, have 5 grandchildren, run an art gallery, sung, swum, exercised, painted and am now writing a one act play about mental health!

I was diagnosed with bipolar after I was admitted to hospital for a manic episode.

I had been experiencing periods of low moods so I was given antidepressants by my GP. Unfortunately whilst I was taking these medications, my moods started to become more elevated eventually progressing into a full-blown manic episode with psychosis.

I wasn’t warned about the possibility of mania being triggered by antidepressants so I wasn’t able to recognise the signs early on. Despite presenting to both the GP and A&E with manic symptoms, I was turned away twice because there weren’t enough beds at the hospital and I “wasn’t a danger to myself or others”. After a couple days, I was detained because I did not get better. I remember feeling really confused at the time about why none of the medications were working while I was in hospital. As soon as I was diagnosed with bipolar disorder two months in and prescribed mood stabilisers, it all made so much sense. I began to feel more in control again and relieved to find out that my symptoms could be explained.

It has been less than a year since I was diagnosed so it has been difficult adjusting to life with bipolar disorder. I am still working on acceptance and trying to move on from the shame of experiencing a manic episode.

Initially, I felt quite tired on my medications and took two months off to rest and get used to my new baseline of energy. I’m finally getting to the point where I am pushing myself outside of my comfort zone and beginning to build a consistent routine. I didn’t think I would be able to get to this point six months ago but I am starting to see that bipolar doesn’t have to be a limiting illness. Sometimes I still experience low moods and feel quite overwhelmed but I am lucky to have a lot of support from my university advisors and community mental health team. I have also met many people who have bipolar through support groups and it is reassuring to hear their stories and experiences. I am looking forward to getting psychological support to identify my triggers and behaviours leading into episodes but I have been on the referral list for months.

ANNA*’S STORY

“I struggle at times but have developed resilience over the years” When I was 27 I was working in a very stressful job as a secondary teacher. I had no resilience and felt intimidated by staff and pupils. I developed an anxiety disorder which further lead to episodes of depression. I gave up teaching and retrained as a nurse but still had depressive episodes every year or so. I also suffered from manic episodes where I couldn’t sleep and became quite agitated and irritable. I finally was given a diagnosis of bipolar 2 ten years ago and am stabilised on Lamotrigine and Quetiapine. I find swimming really beneficial and also mindfulness. My psychiatrist also feels there is an element of PTSD due to my traumatic experience as a teacher.

I struggle at times but have developed resilience over the years. On days when I feel unwell I head for the pool or get into the garden. Physical exercise really helps.

KIMBERLEY’S STORY

“The aftercare when you come out of hospital is shocking.”

I experienced depression throughout my twenties on several occasions. When I was 32 I experienced a manic episode which led to psychosis. I ended up spending three months in the hospital under a section as I was a danger to myself. I was diagnosed as bipolar whilst in the hospital. I’ve been stable for a year and a half and hopefully won’t go through any more manic episodes!

Mania with psychosis is awful and the fall out after the episode has taken this entire time to deal with and attempt to get back to the person I was.

I’ve been stable for a year and a half due to my antipsychotics and diazepam. Life has been difficult trying to process and accept the diagnosis. The aftercare when you come out of hospital is shocking. I had a CPN for a couple of months who would spend ten minutes with me checking I was still on my medication. Then I was discharged and left to deal with my situation myself. I still struggle with flashbacks and nightmares from my manic episode and the time I spent in hospital. I’m grateful I’m stable and hope to never experience anything like that again.

But I’m devastated that it means a lifetime on medication that makes you gain weight and who knows what the long term effects will be.

More stories on page 15!

Image: Vecteezy.com

BIPOLAR SCOTLAND 10

SPOTLIGHT ON:

PEER SUPPORT Hazel Muir is one of Bipolar Scotland’s dynamic duo of self-management trainers, creating and delivering our Self-Management and Friends & Family training across Scotland both in-person and online.

WHAT LED YOU TO BIPOLAR SCOTLAND? Before I joined Bipolar Scotland in March 2023, I’d been working for 8 years in a third sector organisation which supported people with long term health conditions. Self-management and peer support, both of which are very important to Bipolar Scotland’s support services, were also both key to that job.

When I think about it, mental health has been very much connected to almost all of the work I’ve done since my twenties.

When this role at Bipolar Scotland came up I knew immediately that it was the job for me – I was so impressed with the way the organisation values peer support and encourages self-management, and the fact that the office is based in Paisley struck me as a good omen – I’ve lived in the Borders for many years, but I’m originally from Paisley!

SO WHAT CAN PEOPLE EXPECT FROM A BIPOLAR SCOTLAND SELFMANAGEMENT TRAINING COURSE? Self management is about being informed, that’s the key thing. Getting to know yourself and your condition better.

We encourage people to consider: What are your triggers? What are some early warning signs? Who is your support/ where is your support coming from? We also look at coping strategies: what is going to help you better manage your condition in the future? There’s also a focus on lifestyle factors that might contribute to the way people experience their condition.

Self-compassion is also important.

Whether it’s because of upbringing or just cultural factors, we tend to find that people in Scotland are very good when others are in need, providing that support or shoulder to cry on, but not so good with themselves. People living with bipolar can often be quite hard on themselves. There’s often a wonderful level of self-awareness there, but we also need to encourage people to be kinder to themselves.

Most people living with bipolar do already self-manage to some degree; we offer ways of formalising that, understanding it, using that knowledge and the shared knowledge to help create and maintain resilience.

WHAT’S IT LIKE ATTENDING THE IN-PERSON WEEKEND COURSES? Our in-person courses, which we deliver in different locations across Scotland, give people a specific chance to really focus, intently, on themselves over a two day period, and find out more about themselves and learn from others.

The atmosphere is very informal - both Kerry [Hazel’s co-trainer Kerry Adam] and I are experienced trainers; we know how important it is to make sure people feel welcome and comfortable. We make sure everyone gets a chance to know one another, and there are plenty of opportunities throughout the two days for people to get their feelings across. It’s very important that everyone in the room has a voice.

Another thing the self-management courses can offer is that shared

experience. It’s an opportunity to be around other people who are going through similar things, to share and learn from them as well as from the trainers, and that’s invaluable.

TELL US ABOUT SMT LITE The Lite course was created during lockdown. It provides a very similar experience to the in-person courses, with most of the same content, but delivered online, in shorter sessions across a few weeks. It’s still very interactive and engaging; we use break-out rooms and have open discussions; we still get very much the same response. The benefit for some people who choose the online course is that they don’t have to go away into an environment that’s unfamiliar to them.

AND THE FRIENDS & FAMILY COURSE? Our Friends & Family course, which is also delivered online, has similar themes, but as it’s aimed at carers and loved ones of people living with bipolar, it’s more based around information and knowledge. We look at recognising early warning signs that loved ones living with bipolar may be displaying, as well as establishing ways in which they can best support their loved ones and get them the support they need. There’s also an element of making sure those people have got the support too, that they know about the resources available to them. The goal is that afterwards, friends and family will feel both better informed and more resilient.

HOW HAVE PEOPLE REACTED TO THE COURSES SO FAR? The feedback has been so positive, which motivates and inspires us to keep going, and we’re very reactive – after every session we review what’s happened and refresh the course to make sure we’re taking on board all the feedback.

Bipolar is cyclical, and that’s why it’s so important to get people to recognise that those cycles happen, and what they can expect to happen.

We work on encouraging people to realise that they are resilient, to look at what they did and how they coped at the various points within the cycle previously, and so help them build resilience for the future.

Bipolar Scotland’s Self-Management Training courses are available free to all of our members.

To book a place or for further information please email bipolarscotland.org.uk/self-management-training/ We are running the following courses this year: In-Person Weekend Course Two full days working with our trainers and other peers. All courses run from 10am-4pm and include lunch • Glasgow: 1 – 2 June • Glasgow: 24 – 25 August Online Courses (SMT Lite): • Tuesday 18 & 25 June, 2 & 9 July (1pm – 3pm) • Tuesday 17 & 24 September, 1 & 8 October (6:30pm – 8:30pm) Friends and Family Self Management Online Training All sessions run from 6:30pm - 8:30pm • Wednesday 1, 8, 15 and 22 May • Wednesday 6, 13, 20, 27 November

Image: Vecteezy.com BIPOLAR SCOTLAND 12

To discover and develop new treatments and cures for disease, we all need to support health research. Please help save lives and join SHARE, The Scottish Health Research Register & Biobank today.

SHARE is a database of volunteers (11+ years) who are interested in research helping medical research. Many have also given permission, for any leftover blood following routine clinical tests, to be used for anonymised genetic research.

Recent studies assisted by volunteers from SHARE include medical conditions like arthritis, asthma, Covid-19, epilepsy, cancer, dementia, heart failure, stroke, and mental health.

There are over 300,000 volunteers but to support projects appropriately, SHARE needs to have a wholly inclusive register of volunteers which mirrors the diversity of Scotland’s population.

Sometimes, people who want to take part in medical research don’t know how to get involved. By joining SHARE you can help in 2 ways:

1. You can agree to be contacted for research projects which you may be suitable for.

These studies can take different forms e.g. completing surveys, helping to write guidelines or testing new medical devices or medicines. There is no obligation to take part, you choose which projects you wish to be involved with.

2. You can agree for any leftover blood from routine clinical tests, to be stored and used in genetic research studies.

Please sign up to SHARE today! Help us reach 1,000,000 volunteers in Scotland.

For more information or to register, please scan the QR code or search https://www.registerforshare.org Visit our YouTube channel to find out how you can help.

SHARE is an NHS Research Scotland initiative, supported by the Universities in Scotland, all Health Boards, many Charities, and the Chief Scientist Office (CSO)

JAMIE’S DIARY friend years ago: “if you don’t like the world, create your own little world and make it great” We all understand these down periods happen, my worst trait is trying to figure out why I am a bit down, instead accepting it will eventually pass and it is part of my condition.

A missing spark...

As I spoke about briefly last time, I find my self missing that fire, that spark I once had.

I exist only on raw emotion, I react to others energy, and that can be exhausting, as I write this and take a breath, I know that pendulum will swing back, I know that spark with return and all will be OK in my world. I am very lucky in so many ways, turn the TV off, go for a walk and await summer, it will be a good one, Life is good! :)

I am inclined to think the state of the world has contributed to that, I believe this to be true, as an eternal optimist, my mind cannot comprehend what is happening around me.

A seemingly endless war, general worldwide upset and on top of that, everything is expensive, buses and trains going in and out of strike... all the things that ran like clockwork now take mental energy to figure out, maybe I had it good before? or maybe, just maybe things are unfair right now, for all of us.

Saying all of this, please understand that I am extra sensitive right now, I forgot some amazing advice I got from a wonderful

All the love, Jamie xxx

Image: Vecteezy.com

BIPOLAR SCOTLAND 14

WORLD BIPOLAR DAY:

YOUR DIAGNOSIS STORIES (CONTINUED) BRANDON’S STORY

“Schizophrenia, Emotionally Unstable Personality Disorder, and unipolar depression were all labels I was ascribed and medically treated for at some point.”

I was diagnosed with bipolar disorder at the age of 22, having experienced a history of multiple depressive episodes since late adolescence, which eventually became interspersed with periods of hypomania. The years preceding my diagnosis were turbulent and chaotic and were marked by alternating states of significant academic achievement and disruption, intense creative flow and stagnation, enhanced social confidence and social reclusion, and complete exaltation and suicidal despair. I was fortunate that, in between such times, I returned to some form of baseline, but I would typically have to deal with the emotional fallout of these episodes.

Strained relationships with friends and family, unachievable and unrealistic commitments, financial difficulties, and memory gaps and confusion were not uncommon. Prior to diagnosis, I met with numerous consultants, each of whom had their own approach to dealing with my difficulties, and their own diagnostic opinion. Schizophrenia, Emotionally Unstable Personality Disorder, and unipolar depression were all labels to which my issues were ascribed and medically treated at various points. Ultimately, my response to each line of treatment was far from ideal, and the episodes seemed to be growing in intensity regardless, so I lost hope that I could ever be ‘normal’ again. Fortunately, in late 2017, I was assigned

to a new consultant who, in advance of prescribing me an antidepressant, wanted to explore my mood states in finer detail, both the ‘downs’ and the ‘ups’, and posed to me several questions assessing my experience of each state. It was then, following this assessment, that I received the diagnosis of bipolar disorder, and my next steps were outlined.

Life has still presented its challenges post-diagnosis. Naturally, there was a cyclical phase of disputing and accepting the diagnosis, however, that has been addressed in the last few years through attending and connecting with people at support groups and the self-management training workshops run by Bipolar Scotland. Admittedly, I’m still not 100% there with regard to treatment, and I do sometimes still get sidelined by an episode.

So, my medication regimen occasionally needs adjusting. But medication is only part of the picture. The diagnosis, for me, acts as an incentive to review my life more holistically: minimising stress, maintaining sleep hygiene, exercising more, and eating healthily. Naturally, I do not view the condition of bipolar disorder with favourable lenses, however, I do view the diagnosis as a positive gateway to a healthier, happier life.

VICTOR’S STORY

“The GP said ‘the trouble with you, laddie, is that you’ve been watching too much television lately.’”

Sixty years ago, at the age of 27, I experienced depression for the first time.

I went to the local GP who prescribed a strong dose of amphetamines and said ‘in two weeks, you’ll feel fine.’ Having some theoretical knowledge of those pills, I said I’d like to see a psychiatrist. He said, ‘the trouble with you, laddie, is that you’ve been watching too much television lately’.

For the next 60 years I’ve experienced recurring depressions, highs, and periods

ADAM’S STORY

“Since my diagnosis, I just exist.”

When young I was a risk taker. Taking unnecessary risks like hard and soft drugs. I knew my brain was different because in late puberty I started hearing things and having racing thoughts - fast forward to what the doctors call a “Significant Life Event” (Caught my missus cheating!) and then in my job on a construction site as a security guard started hallucinating that the janitor, John, was planting explosives in the water coolers - because he worked for Al-Qaeda.

(Spoiler: He wasn’t). Since my diagnosis, I just exist.

when I knew I had recovered. The only time I felt normal was in India with Osho, and at his centres in Europe. Returning to the UK, the cycle started recurring again. Twentyfive years ago I had a dark depression which took me to the local GP medical centre in Pathhead. A receptionist sat me down and said a doctor will see me as soon as he could.

I was taken into his room where he must have realised what a state I was in because he said he would arrange an appointment for me. Six days later I was seen by a psychiatrist who said I was bipolar I have periodically suffered with the depression side of bipolar, and less frequently the highs too since the diagnosis twenty-five years ago. Depressions are still hard to live through.

KAYLEIGH’S STORY “Then 2020 came, and as a result of stress, I went into mania and psychosis.”

During my teenage years I would say I had low mood, but I just got on with things. In 2011 I was living in Egypt; I took an antimalaria tablet and experienced every side effect including psychosis. I was then well for ten years – I had my own business, my daughter, work – and then 2020 came, and as a result of stress I went into mania and psychosis quickly and was admitted to hospital for a month. I was back in hospital again in 2021 with elevated mood, and then back again in 2022 where I went from very low mood to psychosis very quickly. I got my diagnosis of bipolar at age 36.

My mood is very low, but I have not been in hospital for two years so that’s something to be thankful for. I’m hoping to speak to a doctor about medication to see if something can take to lift my mood a little.

We are sharing even more diagnosis stories on our website bipolarscotland.org.uk - please get in touch if you’d like to share yours. A huge thank you to everyone who contributed to this project - we’re so sorry we haven’t had room for all of your stories in the magazine.

Image: Vecteezy.com

BIPOLAR SCOTLAND 16

Boldness, Abandon, Orig Throughout history, bipolar artists and musicians have attempted to communicate their inner experience of life.

Scientists and clinicians such as Oliver Sacks and Kay Redfield Jamison have highlighted the unique insights that can be gained through increased engagement with lived experience and the potential for enhanced communication through creative activities.

From the perspective of many people living with bipolar disorder, there are common understandings but also large gaps existing between the direct experience of bipolar disorder, and how it is viewed by the patient, clinical and scientific communities. By utilizing creative modes of communication which are intuitive for people with bipolar disorder, I believe we can help to close the gap between patient and research priorities.

In a partnership between Bipolar Scotland and our research project Helios-BD at the

University of Edinburgh, led by Professor Daniel Smith, we are using emerging artificial intelligence technology to augment our lived experience contribution to the project. We have carried out several AI-art generation sessions exploring light perception in different mood states. During these sessions, we have tried to gain insight into colour perception and sensitivity to light during mania and depression, and to discover whether these change throughout the seasons. These insights then feed back into our scientific investigation in the project. Some of the pieces generated by the project can be found on these pages; to view the whole project please visit: www.heliosbd.com/gallery

Dr Iain Campbell, University of Edinburgh

ginality and Immediacy

“The fiery aspects of thought and feeling that initially compel the artistic voyage—boldness, abandon, originality, and immediacy—have their roots in a temperament that is uniquely suited to creativity, yet also uniquely vulnerable to the ravages of severe mental illness.”

- Professor Kay Redfield Jamison

RESEARCH CORNER Hello and welcome!

Jargon buster!

Welcome to Research Corner, a new section of On the Level. This section is coordinated by researchers from the Division of Psychiatry, University of Edinburgh.

‘Lived Experience’ is a phrase used more and more, especially in the research world. This phrase can mean different things to different people.

We hope this section will bring relevant research findings about bipolar to the people who matter most: those with lived experience of bipolar. You can expect to find summaries of recent research, updates from current studies and open calls for research involvement.

It usually means anyone who has some experience in their life of a condition or situation. So ‘lived experience of bipolar’ means someone with a diagnosis of bipolar.

It can also mean their family or close friends, as these people also have an experience of bipolar in their life.

Different researchers consider ‘lived experience’ in different ways. In the AMBIENTBD study, we use ‘lived experience’ to describe anyone with a bipolar diagnosis.

We want this section to be interactive and relevant to Bipolar Scotland members, and we are very open to suggestions. If there is something you would like to find out more about, or if you would like to write an article in collaboration with researchers, get in touch! You can contact Amber Roguski at amber.roguski@ed.ac.uk

Research update: AMBIENT-BD

By Dr Raahat Manrai Author bio: Dr Raahat Manrai is a postdoctoral researcher at the University of Edinburgh. Her research background is in talking to young people about trauma and including lived experience within research studies. She works on the Wellcome Trustfunded AMBIENT-BD project, working with people with bipolar to shape research process and design.

AMBIENT-BD is a project that will help us to understand how sleep and daily activities change between different mood episodes of bipolar. Our entire research team is committed to ensuring the AMBIENT-BD study design reflects the lived experience of people with bipolar. To help us reach this goal, we have a Lived Experience Advisory Panel (LEAP) made up of people with bipolar who we meet with every other month to discuss AMBIENT-BD matters.

Our LEAP members provided input on our initial grant application and would be involved throughout the different aspects of the project.

To continue our engagement and involvement work, we are conducting a co-production with people with bipolar s.

Co-production is a type of research design which focuses on involvement of community partners to tailor and co-design the scientific research process.

On the 29th of February, we conducted a small consultation session with our existing LEAP members to understand how we can attract and engage people to work with us in co-designing the research. The session was attended by our panel members from different parts of the world including United States, Malaysia and the United Kingdom.

We got extremely helpful feedback on the language and terminology that we use, our approach to getting in touch with different groups, our research materials and different ways to conduct our study with them. For example, the LEAP members said that our poster advertising for participants could be more colourful and inviting.

Based on that feedback, we are now formally inviting adults with a diagnosis of bipolar to be our ‘study co-producers’ and to help us shape and design our scientific research going forward. You will be required to take part in regular sessions (both online/inperson) to help us understand your priorities and test some devices that will monitor sleep and activity. You will also be awarded £25/hour as recognition for your time and participation. While you don’t require any

prior research as a part of co-production, your lived experience of bipolar is invaluable to us.

We are currently planning an online seminar in early April for people to get involved in the project and answer any questions you have (more details to follow soon). Check out the ‘Get Involved’ section below to get in touch with us about joining this project!

Get involved!

It is really important that research reflects the interests and experiences of people with bipolar. We want to ensure that people from all backgrounds and walks of life are able to take part in research, and have the opportunity to shape future research that is relevant to them.

The following studies are looking for participants: • HELIOS-BD Previous research suggests that people with bipolar might be more sensitive to light. This sensitivity could impact people’s body clock,sleep, and mood episodes.

Image: Vecteezy.com

HELIOS-BD is recruiting 120 people with bipolar and 60 people without bipolar to take part in an 18-month study.

Find out more: heliosbd.com/take-part The following groups want people with bipolar to share their opinions and help shape research: • AMBIENT-BD AMBIENT-BD is developing methods to collect long-term sleep data from people with bipolar s.

They are inviting people with bipolar to take part in group discussions which will help us shape our upcoming scientific research.

Find out more: ambientbd.com/take-part • Mental Health and the Body Clock Have your say in what research should be focusing on. Do you have any questions about mental health and your body clock that you want research to answer?

Until next time… Thank you for reading this first Spotlight on Research! We hope you found it interesting and we look forward to hearing from you with suggestions for future editions.

BIPOLAR SCOTLAND 22

FACE TO FACE & ONLINE GROUPS We run online and in-person peer support groups across Scotland - friendly, safe spaces for anyone living with or affected by bipolar.

Here’s a full list of all of our groups running during April and May. Why not talk to people who get it?

To access an online support group visit bipolarscotland.org.uk/support-groups, click on the relevant calendar entry to RSVP, and you’ll be emailed a link you can use to join the group at the appointed meeting time.

SCOTLAND-WIDE (all online) Bipolar Blether: for anyone living with or affected by bipolar in Scotland, Sunday 7th April & Sunday 5th May, 3-4pm 18-30: for anyone aged 1830 affected by bipolar in Scotland, Wednesdays 3rd & 17th April, 1st & 15th May, 7-8pm Friends and Family: for carers and loved ones, Monday 15th April & Monday 20th May, 7-8pm

REGIONAL AYRSHIRE & DUNDEE • Ayrshire and Dundee online group: Tuesday 2nd April, Tuesday 7th May, 7-8pm • Dundee in-person (Dundee Volunteer and Voluntary Action, 10 Constitution Rd, Dundee, DD1 1LL): Thursday 4th April, Thursday 2nd May, 7-8pm

Wednesday 24th April & Wednesday 22 May, 7-9pm.

• Glasgow West online: Sunday 14th April & Sunday 12th May, 7-8pm NORTH LANARKSHIRE • North Lanarkshire in-person (Coatbridge Community Centre, 9 Old Monkland Rd, Coatbridge ML5 5EA): Monday 8th April, Monday 13th May, 7-9pm

BORDERS • Borders online group: Wednesday 3rd & 17th April, Wednesday 1st & 15th May, 7-8pm

PAISLEY • Paisley in-person (Methodist Central Hall, 2 Gauze St, Paisley PA1 1EP), Monday 22nd April & Monday 27th May, 6-8pm

FIFE • Fife online group: Tuesday 23rd April and Tuesday 28th May, 7-8pm

• Paisley online, 6-7pm, Monday 8th April & Monday 13th May WEST LOTHIAN

FORTH VALLEY • Forth Valley online group: Tuesday 9th April and Tuesday 14th May, 7-8pm

• West Lothian in-person group (Bathgate Community Centre, Lindsay House, South Bridge Street, Bathgate, West Lothian EH48 1TS): Thursday 11th April & Thursday 9th May, 7-9pm

HIGHLANDS & ISLANDS • Highlands & Islands online group: Thursday 18th April and Thursday 16th May, 7-8pm • Highlands in-person (Cafe 1668, 86 Church St, Inverness IV1 1EP): Thursday 4th April & Thursday 2 May, 7-9pm GLASGOW • Glasgow City in-person (Premier Inn Glasgow City, 187 George St, Glasgow G1 1YU), Wednesday 10th April & Wednesday 8th May, 7-9pm.

• Glasgow City online: Sunday 28th April & Sunday 26th May, 7-8pm • Glasgow West in-person (Partick Trinity Church, 20 Lawrence St, Partick, Glasgow G11 5HG):

BIPOLAR SCOTLAND 14 24

OVER TO YOU:

a space for our members’ writing My Mask!

by Colette MacFayden

It is easy to smile and pretend you are fine To hide your emotions and feelings behind No one need know how you truly feel The mask that you wear helps you to conceal You laugh and you join in but inside you cry You are feeling so low you just want to die But nobody sees this as you cleverly hide Your thoughts and emotions deep inside The mask helps you pretend that all is okay It hides your true feelings and keeps them at bay It is easier to hide than admit what is real It is only at home that you start to reveal Forgive me if I am not being honest with you It is hard to admit when you are feeling so blue It is easier to put a smile on and act The truth is so dark it will have an impact I wear my mask daily and put on my smile I pretend all is going well and I am just fine Don’t judge me too harshly it is my way to survive To keep my feelings locked inside and keep me alive!

Some Hope

by Andy Wong Some prayers that I lifted Some dreams that I dreamed Some hopes that I held to were good things it seemed Some places I reached for Ambition walked tall Climbed up to the clouds and in youth had it all I looked and I watched As others flew high Their lives like kites out of reach in the sky Could this one day be me My life turned around Or forever condemned to stay on the ground?

Those hopes that once burned May be nothing but ash Those dreams that I journaled put out with the trash And those prayers that I sent up Long lost their aroma Scorched into smoke by the sun’s fierce corona My canonical prayers Were they far too simplistic?

My dreams in their sweetness so unrealistic?

And what of the future?

I like to keep hoping My reason for living, my wellspring for coping Prayers compost the earth from which actions see light And dreams prime the crosshairs of the sharpshooter’s sight Faith that is tested produces endurance And nothing is wasted in heaven’s jurisprudence

Image: Vecteezy.com

BIPOLAR SCOTLAND 26

Want to get in touch with us?

Bipolar Scotland is based at: Studio 40, Sir James Clark Building Abbey Mill Business Centre Seedhill Road Paisley, PA1 1TJ You can contact us by phone between 9.30am – 3:30 pm, Monday to Thursday, on: 0141 560 2050, or by email on info@bipolarscotland.org.uk.

We’re also on Instagram: (@bipolar_scotland), Facebook: (bipolarscotland1) and X/Twitter: (BipolarScotland).

Charity Number: SC021705 Company Number: 163306 bipolarscotland.org.uk