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.
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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..

The problem with IAPT

I’ve just been referred to IAPT when i really shouldn’t have been, i will explain..

A bit of background: most of you know that i have struggled with various mental health issues for the majority of my life. I’ve also used mental health services on and off for the past decade to try and move towards that elusive “recovery” we hear so much about. I’m also a very well-informed service user with 5 years of  experience working with organisations like YoungMinds-basically i know what i’m talking about when it comes to mental health and in particular what is best for me.

I recently went back to my GP in a very distressed state. My anxiety recently has been through the roof and it’s had a crippling knock on effect on my mood and several other conditions which in turn has lead to a sharp deterioration in both my mental and physical health. Basically i was not in a good way-another bad downspike in what for me is a severe and enduring problem.

This one GP in particular is one i try to avoid as we have had several clashes over my treatment in the past. After refusing to prescribe me more medication she offered to refer me back for CBT (which i have had previously & has been relatively effective). I agreed but pointed out it would probably be at least a year until i was seen and that i would need to continue medication in the meantime (which she was not happy about). She told me that several of her patients had only waited a month or two.

This struck me as odd-i look back and want to kick myself; i should have known why.

She was not referring me back to the adult CMHT who have seen me before and know me. She was referring me to IAPT.

I have since been back to the surgery to see a different clinician who confirmed exactly what i already knew: i should never have been referred to IAPT and my local IAPT service won’t take me-i am too severe a case with far more than mild-moderate Depression/Anxiety.

It’s very frustrating to continually have to educate clinicians myself about things they should know about-mental health and services in particular. I often have to explain mental health conditions to GPs (who do not need to have any training on mental health to qualify by the way) or tell them about third sector services in the area that they could refer people to.

I am exhausted from having to constantly and almost aggressively self advocate in order to get any treatment at all.

Oh the irony..

For me this is actually almost painfully ironic.

You see while i was a VIK at YoungMinds i was part of several consultations on IAPT before it was up and running and i even facilitated group workshops for other young people on the subject. I liked the idea in principle, after all it would offer therapy to so many people who usually wouldn’t be considered “ill enough” or would have ended up of the bottom of the average 18 month waiting list of adult mental health services. It would also bring in a self referral element often lacking from statutory mental health services and the waiting lists they suggested were much better too.

But i did argue one point very strongly:

My concern was that the implementation of IAPT might lead to cuts in other psychological therapies on offer and that we ran the risk of IAPT becoming the be-all and end-all. This is because IAPT is quicker and also therefore cheaper than more traditional talking therapies making it more attractive to commissioners and cash-strapped trusts.

I said repeatedly that there must be safeguards put in place and that clinicians and patients needed to be fully aware that IAPT is not appropriate for everyone, especially not those with more severe issues. Especially as IAPT often offers just 6-12 CBT sessions which are not appropriate for every condition and often not enough (i’ve had about 30 sessions over the years so far and i’m still painfully ill).

Sadly it seems my fears have been realised.

From January-March 2012/2013 259,016 people were referred to IAPT but only 154,722 entered treatment which suggests to me that i am not alone in being wrongly referred to the service. (Source: Health & Social Care Information Centre IAPT data set).

I have also spoken to a large number of people, especially in the 18-25 age range who have been referred to IAPT when they should not have been.

I would be very interested to hear of anyone else’s experiences of being wrongly referred and will be voicing my concerns on this matter to the NHS and YoungMinds.

What is IAPT?

IAPT stands for “Improving Access to Psychological Therapies” and is an NHS program to extend access to talking therapies for over 18s in England (there is also CYPIAPT for children and young people). It is usually offered to people with mild-moderate Depression, Anxiety or Stress.