September Buddy Box Unboxing!

Buddy Box Image

Well I had a lovely surprise earlier this week when a mysterious package appeared on my doorstep – it turned out to be a Buddy Box from The Blurt Foundation sent by my dear friend Amy-Louise (she also has an awesome mental health blog you should check out). I’ve been having a pretty rough time of things lately and the day it arrived was especially bad but getting this actually did a lot to turn my day around.

I’ve been a massive fan of The Blurt Foundation for a long time, they are a great organisation dedicated to breaking down the stigma around mental health issues and I definitely found a kindred spirit in their CEO Jayne Hardy who is a fierce and dedicated campaigner. They recently started to do these Buddy Boxes which I think are a great way to show friends that you care for them. They’re designed to promote self care and I couldn’t wait to get my hands on one.

So here’s a quick unboxing blog to show you what I got and hopefully encourage some of you to get involved too!

The box itself

Buddy Box Image

The box itself is gorgeous (although the postman managed to bash mine a bit unforunately). I’ve noticed a lot of these box subscriptions lately (Nerd Block etc) and the boxes can be a bit bulky but this is shoebox sized and definitely something I’ll keep after using the contents.

Unboxing

Open Buddy Box

Inside everything is beautifully wrapped and like I mentioned the box is the perfect size so the contents didn’t get knocked and it didn’t seem disappointedly empty like some sub boxes I’ve seen.

The important bit – the contents!

September Buddy Box Contents

Sorry if this picture is a bit small but essentially here’s what came inside the September Buddy Box:

  1. Postcards – The first thing you can see when you open the box is a couple of very sweet postcards from Blurt themselves which I thought was a really nice touch
  2. A notebook – I don’t know if it’s an anxious person thing but I’ve noticed a LOT of us have a bit of a stationary obsession so this is perfect – as much as I’m glued to my phone and technology in general I don’t think I’ll ever be able to give up paper diaries and notebooks and always have one on me. This one is definitely going to be going in my bag.
  3. A pen – Not just that but a very cool pen which I’m definitely going to double up as a bookmark. Also as it’s flat I think it may actually be easier for me to use when winter and my Raynaud’s really kick in.
  4. Soap mmmmm not just any boring soap but gorgeous smelly stuff from Gone Crabbing who are a family run organisation which is nice as I try my best to buy as much as I can from independent companies.
  5. Socks! I don’t know how they knew but my sock collection is fast depleting so these were very welcome – also they are probably the softest pair I own and very warm which is great for people like me who are secretly cold blooded lizards and therefore ALWAYS cold.

    Buddy Box Socks

  6. My favourite bit: craft stuffm  as some of you know I am massively into crafting, having found it a very therapeutic and rewarding activity. Cross stitching obscenities got me through 18 months of a job from hell and I also find that it’s a great distraction for me when I’m feeling anxious (and likely to pick my skin or hair) or feel strong self harm urges. This little craft kit is gorgeous and when I actually have the energy will be a little cactus to match the notebook.

So there you have it! Having received a box I will definitely be paying it forward 🙂

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I’m trying to come to terms with Chronic Illness

We are lucky to live in a world where most conditions are treatable, and as many slogans go “beatable”. For many of us our experiences of illnesses have been followed by effective treatment leading to remission. If I have a cold or flu I know there are tablets I can take that will make it go away. If I break a bone I know a cast will help knit the bones back together and leave me, hopefully, with full function in that limb again. This is a model that certainly in the UK the NHS and ministers understand.

What then if your condition has a murkier prognosis? What if there is no cure or a high chance of repeated relapse? It’s not only then a struggle often for the treatment and management needed but also a huge philosophical concept to bend one’s head around. It’s also, I’ve found, a difficult one for friends and family because they can’t “fix” it and that hurts.

Many of you will be aware of the “spoonie movement” which was originally created for those with chronic physical health conditions, hence when I was always restrained in my use of the word and felt uncomfortable labelling myself as part of that community.

However my mind is changing on that front.

I have been ill for 20 of my 26 years on this planet, I have approximately 7 conditions and have had more treatment than most and yet here I am, still chronically ill.

My issues are around my mental health, although some conditions are now in remission I still struggle with Major Depressive Disorder, Anorexia Nervosa, Generalised Anxiety Disorder and Obsessive Compulsive Disorder.

Right now it’s Anorexia and Anxiety that are majorly kicking my ass (to use non medical parlance), I am currently in my third full round of treatment and admittedly it is much more intensive than I have experienced elsewhere (thanks postcode lottery) but so far it’s barely scratching the surface. I have been ill so long I don’t have a “before” to remember and strive for. In fact research suggests that if an Eating Disorder is present for seven years your prognosis is not good – so with 13 years under my belt I’m not feeling hopeful.

I spoke to an Eating Disorder consultant recently who reintroduced me to the term “SEED” or Severe and Enduring Eating Disorder. One of her patients was offended by this – “I don’t want to be a seed, I want to be a flower”. I think this is very powerful and says a lot about our chronic patients – we often feel like a burden and hopeless – something I myself experienced when my CAMHS team aged 17 told me they had “run out of options”. As chronic patients we are fully aware we are difficult and complex but please don’t throw up your hands and give up on us. And please, we’ve been living these conditions for a very long time so take us seriously.

This is also why I’m seeing a strong backlash in the mental health community against the “recovery” movement and also the government’s seeming need to define “recovery” as “in work”. Recovery is fabulous and we should strive for the best for our patients but let’s not give false hope. Some of us, may never recover. We may take medication for the rest of our lives. We may have to surf the waves of our illnesses ad nauseum for decades.

12 sessions won’t fix us.

Living with a chronic illness is bloody difficult to say the least, I would offer a day in my shoes but you would know you could take those shoes off at the end of the day. I can’t. There is no real comparison.

There are points we cope well, we say “f*** you” to our bodies and fight for what WE want, even though this often ends up in a body backlash (case in point I slept 19 hours after a 2 day trip to Manchester recently”). There are points when either through medication or the boom/bust cycle many of us experience we can function like “normal” human beings. And we rarely “look sick”. When you see us and tell us how “well” we look it’s probably the first time in awhile we’ve been able to leave the house. For more on this check out the brilliant But You Don’t Look Sick.

However there are points, and I’m sorry to say I’m here now, when we get desperate, when something snaps.

I feel lost and hopeless right now. I have had 10 years on and off of almost every therapy NICE approves, I’m 31 weeks into an experimental non NICE approved group therapy, I stopped counting when I tried the 20th medication, I’ve tried everything over the counter and even tried Acupuncture. I’ve tried to sign up to experimental treatment studies including TMS, I’ve taken meds that I shouldn’t due to contraindications or legal issues because anything is better than how this feels. Which of course leads to risky behaviours.

Some doctors are sympathetic (thankfully my current one is) and if you find a good GP cling on for dear life. A conversation with a previous GP went like this:

Me: Well if you won’t prescribe me benzos, I’ve tried every other med under the sun that I can, what am I meant to do to deal with my crippling anxiety while also working full time, commuting and trying desperately to keep a roof over my head?

GP: Just cope.

Chronic illnesses are sneaky too. I thought I had come to terms with what I had done to myself some time ago – more around my scars. Now though, age 26 I am beginning to experience more of the physical side effects and it’s currently having a very detrimental effect on my work and relationships with friends and family because I am not strong or well enough to do basic tasks that were once a piece of cake.

Currently I am struggling massively with fatigue, constant aches and pains and raging anxiety which means headaches, uncontrollable shaking, brain fog and many more very physical symptoms – bolstering my argument that this mental/physical health divide is bogus.

Having a chronic condition means redefining your “normal” and managing your expectations. Maybe once upon a time running 10k was an option, maybe today you should applaud yourself for just getting out of bed. It’s tough. I know, I have tried but when you have low self esteem it can be hard to see boiling a kettle as an achievement.

I don’t know much admittedly but I would recommend above all:

  1. Find a sympathetic GP and work with them to build an understanding health team around you
  2. Talk to your friends, don’t withdraw or cover up what’s happening – from my experience you will be surprised how many understand and will support you. Some won’t, some may withdraw, that will hurt but ultimately show you who your true friends are.
  3. Find your “tribe”. I’ve been running support communities, mostly around mental health for the last 13 years and they have not only changed but saved my life. Find people who understand and won’t judge and lean on them when you need them.

Breaking Convention: My first Psychedelics conference

bc15-banner-brown

This weekend I attended something quite unlike my usual conferences, as many of you will know I am something of a veteran of the conference scene – in particular health (especially mental health), social care, youth work and technology. As much as I love being part of this scene I do often find that:

1) I have a fairly good understanding of a lot of the sessions, workshops and talks already

2) When I present at these conferences I often find myself facing a room full of faces I already know, who have heard me give the talk or something similar before – preaching to the converted.

So I decided to shake things up a bit and attend a very different conference: Breaking Convention 2015.

Breaking Convention is a multidisciplinary conference on psychedelic consciousness, featuring more than 130 presenters from around the world and attended by around 800 delegates from an equally dizzying array of countries.

Look at all these happy faces!

Look at all these happy faces!

I actually first found out about BC through a school friend, Dave King, who is one of the co-founders of the organisation. I have been following some of his incredible, groundbreaking work over the last few years but this was the first year I could 1) manage and 2) afford to attend the actual event – and I’m so glad I did!

Other than the Breaking Convention talks I really didn’t know what to expect and I was a bit anxious as it was one of the few times in my life I’ve been to a conference where I’ve only known one other person. Thankfully my suspicion that it would be a wonderfully open and welcoming conference was confirmed on day 1 and by day 3 I had made several friends from across the world and had some incredible, meaningful conversations on a huge range of topics: from mental health to human rights and so much more.

Days 1 and 2

On the first few days I mainly went to talks about clinical applications and research into Psychedelics as this is something I know a bit about but wanted to know more – especially some of the more cutting edge international work that is being done in countries with far less restrictive laws than the UK. I will make a list underneath of all the talks I attended that I thought were particularly interesting or had the most profound effect on me.

You will also be able to Breaking Convention videos when they are uploaded over the coming weeks.

I also may have found a new look for myself – this is what happens when you play “I can fit more through my tunnel than thou” with strangers at strange conferences..

Flower Power

Flower Power

The final day

As day three was the last one I decided I would not only try and attend as many sessions as possible but also to go to sessions which I knew nothing about so I ended up learning about some completely new ideas and research.

The show stealing presentation was of course given by Professor David Nutt who is something of a personal hero of mine. His talk was titled “Throwing the baby out with the bathwater: How irrational drug laws are hampering medical research” and left us with a sobering picture not just of how hard it is currently in the UK to conduct research in this field but also just how dangerous and stupid the New Psychoactive Substances Bill is. You can Professor Nutt twitter for more updates on his work and campaigning and I also recommend his book Drugs Without The Hot Air.

Obviously this was a major highlight of the weekend for me:

David Nutt tweet

What did I learn about?

Over the three days of the conference I didn’t manage to attend as many talks and workshops as I had hoped due to anxiety and fatigue but I still managed to attend all the talks listed below, videos of all talks will be available on the Breaking Convention videos soon.

– Synesthesia and Psychedelics
– Concepts of Psychedelic drugs as therapeutic agents
– The discovery of the Endocannabinoid system and it’s importancy for treatment with Cannabis
– Ketamine for Depression: A pill for all pains?
– An fMRI investigation into the acute effects of MDMA administration in chronic, treatment resistant PTSD
– A mixed method investigation of Ayahuasca ceremonies as a candidate therapy for Bipolar Disorder and Cyclothymia
– Your Human Rights to use Psychedelics
– Dealing with powerful, difficult, emotionally intense experiences in the context of Psycholytic Therapy
– Psychonauts going Psychonuts
– Criminals and Researchers: Perspectives on the necessity of underground research
– Psychedelic Therapy: Notes from the underground
– The real secret of magic: Burroughs, McKenna, and the syntactical nature of reality
– On “Object manipulators”, Psychedelic festivals and the contemporary youth sociopolitical participation
– Entheogens and the emerging Internet of Everything
– Sacred medicine for a secular culture: How to make spiritual experience accessible
– The Psychedelic Shadow

I also had a chance to try out the Discovery Dome. This was an odd, inflatable igloo of sorts which inside was filled with pillows and blankets and projected incredible visualisations and played beautiful music. I had a chance to try out the dome on both the second and third days and saw different “shows” and had a very different reaction to each.

There was also a wealth of beautiful art littering the conference, many workshops and a lot of afterparties and music that I sadly missed in order to pace myself but I have heard were wonderful.

Closing ceremony 

Breaking Convention Blessing

Because I paced myself I did manage to stay until the end of the last day and attend the closing ceremony which was unlike anything I have ever experienced as we were lucky enough to gather to meet Mara’akame Paritemai, a renowned and well respected medicine man and healer who closed the conference with a blessing.

Conclusions

I consider myself so lucky to have had the chance to attend Breaking Convention 2015, I met so many incredible people doing groundbreaking work, I felt so welcomed and comfortable and I learnt a lot along the way.

The venue itself, the University of Greenwich was gorgeous and we were very lucky with the weather for the majority of the weekend:

No filter, it genuinely is this beautiful!

No filter, it genuinely is this beautiful!

I would definitely recommend the conference to anyone that has an interest in Psychedelics, Mental Health, Wellbeing, Drug Reform or just a general curiosity in any of the above.

The only things I’d like to see next year is a bigger presence on social media – although we had 800 attendees we need many more people to join the Scientific Drug Research cause. Also as much as it is an academic conference and that should remain the focus I would love to hear from more of the study participants – the actual users of Psychedelics who can talk about their own experiences.

I also found that parts of the conference brought up a lot of emotions for me, mostly anger at our ridiculous government and it’s continued wilful ignorance and dismissal of scientific evidence and my own sadness that I have used Mental Health services for 12 years, tried over 20 psychiatric medications most with awful side effects and yet something that could really help me would make me a criminal.

But that’s for another post..

Talking about mental health on the Chrissy B show

Image

So some of you may know that late last year i appeared on the Chrissy B Show to talk about mental health in a special program titled “A mental health issue doesn’t mean i’m crazy”. The show was broadcast in January and is now available on YouTube for everyone to watch.

I first met Chrissy at a great event held at Westminster University called “Living or Surviving”. Chrissy spoke about her experiences of struggling with Depression at University and how she now tries to help other people with her inspirational television program. We were joined by speakers including Paul Canonville who talked very movingly about his own experiences of mental illness in sport and Professor Damien Ridge who is a psychotherapist.

You can watch me talk about mental health, the WellHappy app and working for both YoungMinds and the NHS below. I’m not on for the whole thing but it’s worth watching the whole episode:

 

Our first focus group

On Friday i ran the first focus group with young people for our Wellbeing app for young Londoners. Although we didn’t have as many people as we expected the day was still a great success and we were inundated with suggestions and ideas.

We split the group into three sections to cover three of the biggest areas we identified previously: the look and feel of the app & website, the content it needs to have and how to launch it so that it reaches as many young people as possible.

We had some really innovative ideas for all areas and are currently feeding back young people’s responses to our designers and developers: we want to make sure that young people are not just given an opportunity to express their ideas but that those ideas are taken seriously, taken on board and made into reality.

The focus group was a great pilot and we will be running more over the next few months both on and offline so if you would like to find out more or even get involved please don’t hesitate to contact me at Katherine.Cormack@london.nhs.uk

APPG on Children’s Health at the House of Lords

On the 22nd of October i had a very exclusive ticket to the House of Lords to speak and give evidence at an All Party Parliamentary Group for Children. This was apparently the second meeting of the group although the first for me and the question asked of us was “are children and young people getting the opportunities they want” in terms of good health and was looking at access to healthcare.

We heard from:

Baroness Massey who was kind enough to chair the event.

Dr. Chris Hanvey, the chief executive of the Royal College of Paediatrics and Child Health.

Caroline Noakes, MP and chair of the All Party Parliamentary Group on Body Image who told us about her work and area of interests which include self esteem, body image and mental health. It was great to hear from an MP so involved in raising awareness of these issues which affect so many young people.

Professor Helen Cross, the Prince of Wales chair of Childhood Epilepsy and three young people from the charity Young Epilepsy. I was so impressed by the young people who spoke about their experiences of other peoples ignorance and the discrimination and lack of understanding they had faced in receiving help for their conditions.

Young people and staff from West London Mental Health Trust’s Wells Unit who spoke openly and honestly about their experiences of both the justice and mental health systems and what they think would help young people stay mentally healthy, especially vulnerable young people who had become caught up in gangs.

We also heard from a representative at ChildLine who talked us through some really eye opening statistics. I was amazed to hear that since it was founded in 1986 ChildLine has counselled over 2.9 million children.

They spoke about the 69% increase in calls about self harm and 39% increase about suicide and told us that depression and mental health concerns feature in the top 5 concerns for 16 and 17 year olds calling them.

I was the last young person to speak at the APPG, this felt like a really big responsibility, especially after hearing from the other young people at the event but i wanted to make sure that i got across how young people who use mental health services often feel.

I also pointed out that, as i was the last person to speak, it showed that there continue to be wide ranging and very damaging problems within children and young people’s healthcare regardless of whether this is mental or physical health. I pointed out that this was an issue rampant across services and young people frequently felt dismissed, ignored and patronised by services and professionals.

I also spoke about the work i had done in the past and my experiences of services which is what led me to get involved in YoungMinds in the first place. I spoke about the work i do now with YoungMinds and NHS London and the app that we are developing specifically for young people in London and the State of Mind manifesto.

The group wrapped up the meeting with a quick Q&A session, we would have loved to have speak longer but we had to finish at 6:30. I must admit to being exhausted by the end of the day but it was definitely an incredibly worthwhile experience and i am glad that i was able to speak at such a high level about mental health and young people. I just hope that what i said can in some way help to make a difference, if only in opening people’s eyes to some of the experiences of young people.

HIV Sport at the House of Lords

On Monday 8th of October i had my first of three visits this month to the House of Lords. I must admit that this visit was not related to mental health but a highly interesting and enjoyable experience nonetheless.  In fact in many ways more so because i learnt so much about something i admit to not knowing much about.

I was visiting with Devika, winner of the Sex Factor 2012 competition and MBARC, who i am working with for the sexual health section of our wellbeing app. They were kind enough to invite me for the launch of HIV Sport’s launch of their film series “Fact or Fiction”.

Badges of Hope

HIV Sport is a fantastic charity that, as the name suggests, uses sport to raise awareness of HIV. It works on an international level and has touched the lives of so many people across the world.

We heard from some truly incredible people and saw the award for the winner of the Fact or Fiction competition given to Brian Mjiyakho and Danny Lurie from Johannesburg, South Africa.

Brian Mjiyakho

You can watch some of the films here.

After this we were given a guided tour of the House of Lords and even got to watch the Lords sitting from the member’s gallery!

Afterwards we convened for a meeting and Devika and I were able to share the work that we are doing developing our wellbeing app for young people in London. We talked about our aims for the project and what had brought us together for this project. It was wonderful to not only be able to share ideas with delegates from across the world but also hear so much praise and interest in our work.

Overall the day was a fascinating and truly humbling experience, seeing people from across the world come together to do such incredible work.