I got pills they’re multiplying – Time to Talk Day 2018

TTD
A purple banner saying you can talk about mental health anywhere even here

*mentions medications, doses and side effects and self harm

Let’s talk about medication; the world and his wife and their depressed friend seem to have an option on the subject, the internet is full of memes about going for a walk in a forest and you know the Daily Mail will have something to say on the matter but the reality isn’t just popping a pill and everything is better it’s much more boring, frustrating and often unpleasant. I’ve been on and off medication almost half my life and I’ve been on some form of medication consistently for around 10 years. I’ve tried almost all the common antidepressants – citalopram, venlafaxine (made me throw up so much), sertraline (no effect but made me sick when I took myself off it), citalopram again (worked well then stopped working), seroxat – the scary one from panorama (worked well then stopped working, made me very mental coming off it), duloxetine (still on this the most effective and long lasting though I’m now on the maximum dose) I’ve also been on and am still on an antipsychotic quetiapine.

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Enter a captioThe top picture shows a forest with the words this is an anti depressant. The bottom picture shows a green and yellow prozac tablet with the words this is shit.

I loved quetiapine it helped me sleep, it lowered my anxiety and evened out those wonderful BPD mood swings it was great until I decided maybe I didn’t need it anymore that I was tired of being tired, I wasn’t in love with it anymore but it didn’t want to let me go. When I first reduced my dose the withdrawal was horrendous I remember the nausea that made me late for college because moving made me want to throw up, I lay on my sofa and cried for a day before breaking 6 months self harm free and phoning my care coordinator begging for diazepam instead they gave me promethazine this took me to three types of medication.

After this I increased the dose twice and things were ok until I tried to leave quetiapine again and it let anxiety and depression came back in, at this point I was just starting my new job and was also suicidal from the medication withdrawal, this then led to an increase of my antidepressant duloxetine now up to the maximum dose, the anxiety was unbearable so propanolol a beta blocker was added; 3 little pink pills a day.

A referral back to the mental health service and a medication review with a psychiatrist i’d met through my work with commissioning groups and we decided to try lamotragine an anti epileptic but not until I’d had a blood test to check my liver and kidney function oh and watch out for a rash because this can suppress your white blood cells.

My view on medication is that I’m neither for or against it, for some it’s a life saver and others it’s poison that dulls the emotions and sedates people into compliance but I do think people need to be more aware of what they’re taking and how it could affect them. Medication and the side effects are one of the reasons people with enduring mental health problems die on average 20 years earlier than the general population many of the health initiatives around weight loss and stopping smoking aren’t helpful to people who’s mediation has ground their metabolism to a halt or has increased the effects of nicotine on the brain and that’s not even looking at the social side of eating or smoking amongst people with mental health problems.

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The top picture shows a forest with the words this is an anti depressant, the word antidepressant is crossed out and underneith it says an amazing way to spend a Saturday. The bottom picture shows a variety of medication with the words this is shit, the word shit is crossed out and underneith it says prescribed medication that literally saves lives  

Medication has and continues to help me in combination with the therapy I’ve had it helps me do my job which in turn benefits my mental health, had I known more about the side effects before I was put on an antipsychotic maybe I’d have decided not to go on it but even if I’d made the same choice at least I’d have had all the information needed to make an informed decision.

There’s still a lot of stigma around being on medication and those memes about taking a walk in a forest really don’t help, there’s no shame in being on medication so please take your meds.

Body and mind

Shark bag
A picture of a shark rucksack looking anxious wih the caption “my face when people ask what happened to my arms”

*For the purpose of this post i’ll be using the word disabled to mean people with a physical impairment, I do consider mental health problems to be a disability but for clarity i’ll refer to mental health seperatly.

So my brain whirred into action last night thanks to an Instagram post by the amazing feeding of the fox. There’s a type of self harm that’s rarely mentioned; self neglect comes up in the context of depression but even I’ve never seen a discussion around the connection between disability or chronic illness and self harm or disabled people deliberately not taking care physical needs as a way of self harming. There are times when I say yes when I should say no, times when I will push myself because I don’t deserve to rest, times when I don’t take painkillers because it’s an indirect way of inflicting pain on myself, going to places that aren’t accessible or doing things when I’m not well enough.

Any disabled person will also tell you there is a big divide in the treatment of physical and mental health problems the two rarely mix and the mental health services are not always good at recognising the impact that physical disability or chronic illness can have on mental health or that the things that could benefit you mentally aren’t always possible physically (like going for a walk or having a bath), being told I should do more exercise after I’ve explained that I have chronic pain and chronic fatigue can result in me feeling lazy and making myself do things that result in pain or injury and an increase in fatigue and related symptoms. This is where the lack of understanding or knowledge of the connections between mental health and physical impairments is such a problem because for me it can be an increase in symptoms but for others it can be much worse.

Then there’s the other side the health services who treat your body as if your mind isn’t a part of it, although I’ve always been disabled to some extent in the last couple of years my mobility has got worse and I’ve been using mobility aids and dealing with more pain and fatigue.

At the beginning of 2017 I tried to access psychological therapy for long term health problems. I wanted help accepting my chronic illness and dealing with no longer being able to do the things I used to and things people my age can do, I wanted some support in balancing my physical health and mental health. It took several months for them to tell me that they don’t offer support for chronic pain, between that they rejected me because I was under mental health services (I was in the process of being discharged and they were completely different services), they then said my self harm made me too much of a risk and they said they didn’t think I’d be able to manage classroom based psychoeducation (thanks for that).

Last time I checked neither my body or my brain can function without the other yet services treating each are still very separate and mental health services are often not accommodating for people with physical impairments and often aren’t accessible there’s also an assumption that if you’re disabled and have mental health problems then of course you’re depressed because you’re disabled because who wouldn’t be?

Ableism unfortunately is still well rooted within the medical profession and the even within the disability communities there is still too much separation of physical impairment and mental health issues.

New year same old Dino

new year
An illustration of a man with a purple background with the words I can’t believe it’s a year since I didn’t become a better person.

Today the perks of being a dinosaur turns one, my little blog is growing up fast *wipes a tear from my eye* it’s also the first blog post of the new year, I don’t really go in for the whole new year new me thing, sure 2018 will bring new experiences and changes just as every day, week, month does no matter where in the year it is and 2017 also brought some big changes with being discharged from all mental health services for the first time in about 8 years, important people no longer in my life, leaving behind toxic environments that were detrimental to my mental health and not staying because it was the only option of support and probably the biggest of all was having my training recognized as not just good but worthy of actual money and being paid for and getting a job closely followed a second one.

None of these things have been without challenges and people who know me well will know I’ve had times where I’ve felt overwhelmed by the changes, I’m now pulling back a bit and slowing things down I’m recognizing that is all new and that I don’t need to try so hard to prove myself. This blog was another new thing for 2017 and it’s still going and people read it which is still a surprise to me, I find writing helpful often during the writing process of creating a blog post it starts to unravel things in my brain a bit and the connections seem to form better even though people say I’m articulate I still find writing easier than speaking though talking and opening up is less of a struggle than it was, I certainly never thought at the beginning of 2017 that I’d not only get on well with someone I’ve only been working with for 6 months but also disclosing things about really difficult points in my life.

When I was writing training at work I wrote long notes almost scripts to go with the slides, when it came to delivering the training I didn’t use the notes as much as I’d anticipated and on some days not at all however writing those detailed notes really helped to get all the information together in my brain from whatever dark and dusty corner it was hiding in and blogging is like that for me. I’m quite a hands on person and enjoy the interaction with volunteers and service users I tend to write these posts on my phone then email it to myself and upload it from my laptop although my hands would prefer it if I used speech to text my brain finds the physical action of writing (or typing better).

So for 2018 I hope to write more, get better at and feel more confident in promoting the blog and sharing it, I want to work on turning myself into a brand and personal development and utilizing my social media better. So happy first birthday blog and thank you to those who’ve been reading since the start and those who’ve joined along the way I hope there are even more people reading this time next year.

Merry Christmas from Georgiesaurus

The Perks of Being a Dinosaur Christmas.jpg

Merry Christmas everyone however you’re spending today I hope you have a safe and enjoyable time, if you need support today or any other time please see the resources below, if you’re in crisis please go to a&e (even though it’s shit).

Thank you to everyone that’s supported me with blogging and supported the blog,

Look after yourselves.

Georgie x

Samaritans

Childline

Papyrus

CALM

Mind

Ghosts of attachment past

PP hug tight
A rabbit hugging a hedgehog with the words “one day, someone is going to hug you so tight, all your broken pieces will go right back together” by paper panda

I was reading Amy’s mystery illness which prompted me to write this. A favorite person when you have a mental health problem like BPD isn’t always a friend, don’t get me wrong my best friend is the person I talk to daily, see as often as possible, share everything with (yes everything) she’s even been dubbed my wife but in the context of BPD and attachment she’s not my favorite person.

I know I’ve talked about attachment before and it’s likely I’ll talk about it again, it’s something I struggle with, being self aware isn’t enough to break the pattern it’s one thing knowing I have a type and knowing I get attached to certain people (mainly older women often those in the care profession) it’s another thing knowing how to manage those feelings especially when relationships end.

In MBT they encourage you to check things out to test your perceptions with reality, the black and white thinking that comes with BPD and the certainty that the way you think and feel is accurate often isn’t but the problem is sometimes it isn’t possible to check things out and test the feelings which leaves you questioning reality. There are 4 people in particular that I’ve had these strong attachments with, all of them were professionals and all of them left (I want to say left me even though I know that’s not true).

Building new relationships is hard it feels like a betrayal to get attached to someone else it’s also a challenge when dynamics and boundaries change and figuring out new relationships with different people especially people who aren’t my “type” it’s both refreshing and confusing. Changes in my life can be hard to when they affect relationships when moving from a volunteer to staff it changes the relationships with people around me.

People leaving is always hard and loss is painful but the difficulty I find is being left with questions or wondering whether they even cared at all, I don’t want to play the BPD or mental health card but it’s hard when you struggle with attachment issues and you feel led on that someone promised you something and made you feel as though you mattered but didn’t actually as ad they said they would. As I don’t know who reads this blog I am being intentionally vague here but the attachment to a favourite person someone you’ve relied on and told some of the most personal things about you and your life is to me something far more intense than a friendship even with someone close who is trusted completely where there is no risk in disclosing personal information. The loss is still there the right feeling in my chest, wishing for contact now joined but anger and frustration, I don’t want to miss them but I do.

One of my former favourite people a mental health professional said things that left me feel completely invalided and life my issues were insignificant, had it been someone else it may have been unpleasant but due to the relationship we’d had I felt as if I was losing my mind, again questioning whether they’d ever cared, I was angry and hurt and resented others for the reaction they got from this person. Leaving the service they work in and no longer attending the place I saw her has helped to an extent.

This post has been a bit disjointed and I’m not quite sure how to end it, It’s still hard to talk about attachment and feels very cliched to be attached to these older women, the mother figures, I find it embarrassing though writing it is less uncomfortable than saying it verbally. I hope that the more I talk about it or write about it the easier it will become and the less shame I feel and that in reading my posts other might feel less ashamed by their struggles too, writing about uncomfortable topics is a way of challenging myself and being open and vulnerable it’s also something very relevant at the moment struggling with letting my guard down and opening up, it would be nice if in time it wasn’t so hard to talk about and my attachments become less intense.

Rocket Science

If you can’t here expecting a review of a lush  bathbomb then sorry to disappoint you this is a rant about mental health services, maybe try Lulu or Jen

IMG_5726
A blue rocket shaped bath bomb made by Lush cosmetics

I am not a frequent flyer, I don’t have air miles I haven’t been on a plane in years and the last time I went abroad was to Edinburgh by train. Despite this I and other in a similar are labelled frequent flyers or regular attenders (this is meant to be the better term) because we find ourselves in situations where our mental health has got to a point when we need support and intervention often requiring medical attention as a result of harming ourselves.

Self harm isn’t something people do for fun or because they enjoy being in a&e it’s because emotions become overwhelming (and this is a very simplified explanation of a complex issue) and as I’ve written before the treatment once you’re at a&e is often not pleasant or equal to the treatment of people going in for accidental injuries with long waits in loud and busy waiting areas and psych liaison who at most may give you a leaflet and discharge you at 4am with no way of getting home.

It’ll be no surprise that this latest rant is inspired by a crisis concordat meeting this morning, two hours of frustration at having to bite my tongue in frustration at the language used and throwaway comments about people with personality disorders and the triggering content in the suicide prevention information listing the age groups and sex of people who ended their life and details of methods chosen again separated by sex.

Sometimes I look at the people sitting around the same table as me and wonder how they can be so oblivious to the blatantly obvious, do they really not see the link between the high numbers of people in Richmond who come into contact with the street triage team and the above average number of people detained under section 136 of the mental health act and the complete lack of crisis services in the borough? Are they actually surprised that people who are distressed or in crisis don’t want to travel an hour or more to an area they may not know to get support? And may not have the means to do so? It really isn’t rocket science or a difficult connection to make, I don’t exactly consider myself the sharpest tool in the box yet I can see it so why can’t they?

Aside from Mind since I’ve been a part of the crisis concordat (around 2 years now) and the outcome based commissioning program (coming up for 8 months) only one person has actually asked me about my experiences of a&e and the treatment I receive it still seems like a radical idea to most of the people involved to actually listen to someone who’s been in the very situation they’re talking about. Despite feeling like i’m banging my head against a wall (thanks Steph) and frequently coming away wondering if being there serves any purpose I still keep going if only to play my own version of crisis bingo.

5 years time 

I’ve recently had a couple of meetings looking at my personal and professional development, it’s been refreshing to work with someone who’s never met me before who just sees me for what I am now not what I was 5 years ago, 3 years ago, 6 months ago, sometimes it’s helpful to see how far you’ve come but sometimes it can be hard to move away from that image of me from the past especially as I talk about my lived experiences of mental health problems and how I was in the past in my job.

I’ve never really considered myself to be ambitious partly because I’ve always assumed I’ll fail, something that has been repeatedly instilled in me over the years and left me feeling that ivt’s best not to set goals because if I have no goals I can’t fail. The bar is set so low that it’s almost on the ground there’s no where to fall nothing to achieve or succeed at, no one to see me fail which also means I don’t talk about any ambitions I do have and keep things to myself partly out of fear of failure but also the fear that people will think it’s ridiculous that I even consider having goals in life especially any that may be related to employment or education. 

Being in a position where people expect things of me is scary it’s not something I normally let happen and has at times increased the anxiety and the panic within me yet on the other hand I’ve been pushing for more responsibility feeling restless and wanting more, it’s not that I’m bored but for once I don’t want to settle and I want to move forward and do more, move to a bigger pond and try and find a place in it.

I never want to go back to the nothingness and the isolation but along with the push for more responsibility and more experience is the push to change people’s view of me I may have worked hard to get to the point I’m at now and while it’s still not where I want to be I want people to see me for what I am and what I do now without the comparison to how I used to be.

All Roads Lead to A&E

IMG_3951

“If you’re struggling you can go to a&e”

“If you really need support go to a&e”

“There’s always a&e if you’re in crisis”

Have you ever sat in a busy a&e waiting area? I have, 35 times between January 2015 and now. It’s not much fun, long waits, uncomfortable seats and lots of sick people. Now think about sitting in that environment when you’re in extreme emotional distress, maybe feeling suicidal or wanting to harm yourself, it’s not a very nice environment at the best of times let alone when you’re in crisis.

Someone at a mental health crisis planning meeting recently said that everyone under a mental health service should have a detailed crisis plan drawn up in collaboration with them, their mental health team and carers/ family/ partner where appropriate; this seems like a sensible suggest except there are no crisis services. Mental health isn’t 9 – 5 people are more likely to be in crisis outside those hours when there are less things to do or people to see and when they’re more likely to be alone.

As I’ve said before I’m a regular at a&e a “frequent flyer” or “frequent attender” but I’ve never been pre crisis or because I want to hurt myself it’s always been afterwards. I’m used to it now I know the drill busy Drs and nurses on 12 hour shifts earning far too little don’t have the time, energy and often experience to sit down and talk about what’s wrong they often see stitching my arms up as an inconvenience when there are people who aren’t there because of self inflicted injuries. Sometimes I see the psych liaison which is more waiting usually on the “observation ward” a holding pen in a&e where people are dumped to avoid breaching the 4 hour rule, because there’s no a&e in my borough the psych team aren’t from my area or the services that operate in it, I’ve been discharged by the psych team in the early hours of the morning with no way of getting home and told to wait in reception until the buses start running, when I told them I was suicidal I was given a leaflet (it went in the bin as soon as I left).

When I was under a mental health team they’d let them know but now a letter gets sent to my GP and that’s it, no follow up, no further support, no one pretends I won’t be back again, my self harm has been described as chronic and not a concern because it’s been going on so long despite having permanent damage to my arms and recently a cut that took over a year to heal. I don’t see a&e as a place of support it’s not the appropriate place for people with mental health problems yet all over the country it’s the only option for so many people, the police and ambulance service are as frustrated by it as I am, although the police have some powers to take people to the minimal crisis services that exist the ambulance service has no option but to take people in crisis to a&e whether they want to go or not.

It may sound defeatist to say I’d only go to a&e after I self harm because I don’t see the point in going beforehand but the experiences I’ve had in a&e don’t feel supportive and often leave me feeling worse. At the last mental health crisis service meeting I attended a paramedic spoke about her frustration at not being able to take someone in distress to a more appropriate place than a&e, despite there being two crisis cafes and a crisis and recovery house covered by the mental health trust my borough comes under (though not actually located in my borough) only the police can actually take someone there the paramedics only option is to take someone to a&e whether they want to go or not.

A&e should be the last option not the only option it should only be considered after all other options have been exhausted or if someone needs medical attention it shouldn’t be a place people in distress are routinely sent to.

BoPo or BoNo (body positivity and disability)

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A collage of 4 photos of me with Domo-Kun a large brown Japanese TV mascot

 

I am not body positive, I won’t go into too many details about the concept of body positivity itself because there are many people who can explain it far better than I can but the short explanation is that it stems from the feminist fat acceptance movement and aims to encourage people to feel better about their bodies it has also become a campaign for inclusion for those that aren’t always included in movements surrounding self love like fat people, Queer and trans or genderqueer people, people of colour*, disabled people.

I fall into more than one of these categories yet for various reasons I don’t feel a part of the movement. For as long as I’ve been self aware I’ve disliked myself, I don’t say this for sympathy or pity and I don’t want comments expressing that, I don’t doubt that a lot of this is due to upbringing and bullying at school and at home. Ableism and fatphobia were part of my childhood, I’ve been disabled since birth and dealing with unrelated chronic problems problems for several years and mental health problems since I was a teenager.

I’ve struggled with my weight for years and for most of my life I haven’t felt like I fit in anywhere, not able bodied but not visibly disabled or as impaired as disabled peers; even in school when trying to express this feeling to the head of special needs I was faced with ableism, I also never quite felt comfortable with my gender and sexuality. For several years I fought for a diagnosis and explanation for my chronic pain and finally last year I saw a rheumatologist and had an MRI scan and while getting answers was a relief it meant the fight for answers was over and I had to accept that this is my life now. People often say there’s a period of grieving when you become disabled and I didn’t think this would happen to me but it has, I’ve been really angry at my body and frustrated when there are things I can’t do that a few years ago I could, its hard accepting my wonky, bendy, tired body and facing my limitations, I know I’m not severely disabled and other people have it worse but that doesn’t help me.

It’s really hard for me to feel any love towards my body when it lets me down, holds me back, doesn’t work the way it should it causes me pain and fatigue, my joints go out more than I do and I often feel like I’m 92 not 32. Sometimes it feels like not being body positive or embracing and accepting my size and shape makes me a failed feminist; its actually refreshing to see people I look up to who that are plus size who openly share photos of their body both as a job and on their personal social media say they’re not body positive, its not that I want them to feel bad about themselves its more that I respect their honesty. There are also disabled people and people with chronic pain who are body positive though I know it’s a process and not something that just happens overnight.

In some ways inclusion is improving, especially with a growing number of plus size models and general visibility of fat people who don’t believe they should cover up or hide their body yet there are still flaws especially with disability. Scrolling through Instagram looking at the bodypostive, bodyposi and bopo hashtags shows lots of plus size people yet there’s a lack of (visibly) disabled people and many of the messages that come with body positivity have undertones of ableism such as the focus on health and healthy is the new skinny which are also problematic for people who eating disorders or people in recovery from an eating disorder, then there are the concern trolls who target plus size people and fat shame them by acting as though they care about the health of an overweight person (lots of disabled people are overweight because of health problems not the other way around). Big media campaigns like the Dove real beauty also fail at disability representation, are disabled bodies not beautiful? Disabled people are also subject to intrusive questions about their bodies from being asked why they use mobility aids to questions about their sex life and even accused of faking having a disability.

real-women-dove
Dove Real Beauty

The lack of visibility itself is ableist and sends out the message that only non disabled people should feel good about themselves and how they look, for something that is meant to be about inclusion it really needs to be inclusive and not just for one group of people because that’s not how diversity works. Feminism itself is often accused of being only accessible for non disabled white cis middle class women who have received a good education (I’ll be ranting about that soon) in an ever increasing digital age the body positive movement could be one way to change that by utilizing social media as a more accessible platform.

*Other groups of people also face exclusion especially people of colour but no one wants another white persons perceptive

Awesome people to check out:

Fullerfigurefullerbust

Annika Victoria

Body Posi Panda

Glitter and Lazers

The Feeding of the Fox

Coping admirably

The back of one of my pink smart crutches with a sticker saying coping admirably

*clears out the tumbleweed*

Long time no blog, I’ve had a few semi written posts on the go but most of them seemed to get stuck half way.

There are lots of changes going on around me and in general this year has been full of them, I’m not normally a fan of change and prefer to keep a tight grip on familiarity instead yet it seems to keep happening despite my complaints. I don’t like uncertainty yet I’m bored; as ever my brain is a contradiction, I often feel as though I’m stagnating seeing people move on around me people I was in the same position as a couple of years ago have bypassed me it’s no coincidence that as I write this young people across the U.K. will be getting exam results and finding out where their future path lies thinking about my own education and career tends to leave me teetering on the edge of an existential crisis.
I’ve develop a habit of doing all the things I feel like I need to make up for lost time and lost years to catch up with all those ahead of me. Since joining Mind there have been many staffing changes and several younger members of staff have joined, people younger than me which as well as the problems with attachments to people who have left has brought some resentment and shame at being a volunteer managed by people younger than me; there are volunteers older than me but most of them have had lives already and at 32 I’m only just at the start of any kind of career.
One thing I’ve been trying hard to do is be honest and open more, in some respects I guess I’ve had to as I no longer have one person I can go to and no mental health support has probably forced me to do this. One thing they don’t tell you in therapy is how long things take to have an effect I finished the main MBT treatment in 2013 and sometimes it feels like my brain is only starting to process it, I’ve said since it finished that the ways it helped me aren’t so obvious as the main issues I have such as self harm haven’t gone away but expressing my feelings and telling people how I feel about them is something that although still a work in progress is probably the biggest change and recently I’ve surprised myself with these changes by telling people that I feel I’m trying to make up for lost time and compensate for the years of not doing anything.
The downside to doing all the things is I’m currently lacking direction, life doesn’t come with a map it’s more like a badly programmed sat nav that has you going all the way across the country for a pint of milk instead of 5 minutes up the road and right now I feel like I’m sitting trying to find the right direction but I’m not sure exactly where I’m going and I’m not sure the address is right but I sort of know where it is just not exactly. What I know is I want to work in mental health in a way I can use my lives experience, I know I enjoy working directly with people (oh how 16 year old me would have laughed at that) I also enjoy delivering training but I don’t know whether I want to work with adults or young people or what sort of project or service I’d like to work on. Sometimes I think life was easier when I was catatonically depressed, if anyone knows how I can resign from adulting please let me know until then I’ll be building myself a pillow fort.

Coping admirably sticker from hand over your fairy cakes

 

A paper collage of an open mouth screaming

I know I’ve talked about cost before and I do understand the pressures placed on the NHS however this isn’t just about the actual finances but the attitudes towards money being spent on mental health care. Last year when the mental health trust that covers my area was considering putting in a crisis café I went to a consultation which was for service users, mental health professionals, third sector workers and generally anyone that might be interested or might consider bidding on to run the service.

Someone else attending the event worked out how much it would cost per person per night to attend a crisis café based on the figures from the model that the trust were basing it on and asked whether this was good value for money. This frustrated me for so many reasons one of them being why are we looking whether someone’s life is a cost effective use of funds and another was that the alternative to me is self harm and a&e.

It costs the NHS money to treat me – stitches and anaesthetic, dressings, bandages, Doctors and nurses time and psych liaison, if I get an ambulance to take me there because of blood loss or not feeling physically able to get there alone it costs the health service money and although I don’t know the exact figures (and I’m not sure I’d want to as it increases the guilt) but I’m sure it’s a lot more than the cost of attending a crisis café. I’ve seen people say that if you do it to yourself you shouldn’t expect the NHS to pay to fix it and while I can think of a few things I’d like to these people I also think once you start going down the route of denying people treatment if they’re responsible for the cause I think it’s a slippery slope towards finding blame for almost anything (didn’t notice your laces were undone sorry your fault, broke your leg skiing should have stayed at home).

Prevention is almost always better then cure and while I’m under no illusion that crisis cafés or any other crisis support would mean that no one went to a&e; I know it wouldn’t mean I never self harm but it would be an alternative. There’s a lot of talk at the moment especially with an election coming up about mental health and in particular the mental health of young people. I volunteer on a Youth wellbeing project and highly encourage mental health education and advice in schools but it doesn’t help the adults or children already experiencing mental health difficulties, it looks good on paper and even a liberal cynic like me can almost believe that’s not the only motive but it’s almost as if they want to write off those already in need of help and start again.
If we want people to thrive rather than just survive there needs to be more support, more money and more collaboration between the NHS and the third sector (actually collaboration not just expecting the third sector to pick up the pieces), the crisis concordat I’m part of has been cancelled twice in a row, it only meets every three months and the last one was in October there now won’t be another one until August. People with mental health problems deserve better and deserve more, too many people are left with nothing or sent home from a&e at 3 am with no way to get home, at this rate we cannot survive let alone thrive.

Surviving or thriving? (Another awareness week)

A mental health awareness week promotional image by the mental health foundation

Is there anyone who isn’t aware of mental health problems? Survive or thrive? Sink or swim?
Much like my life and my mental health the way I approach these awareness days/ weeks/ months are how I feel about can vary. This is partly down to whether I’m representing RB Mind or another mental health group or whether I’m just representing myself. Having started this blog at the beginning of the year having awareness events can be a prompt to write and I always try to be genuine, I want to present the reality – my reality of having a mind that is often not mentally healthy but the reality is it’s often not very interesting.

I often feel like contradiction and the idea of survive or thrive fits that nicely because I can be one or the other or both, although I want to be seen for the things I do at mind or with mental health awareness rather than the things I do to myself I also want to fight the illusion that I create. The term high functioning is thrown around a lot in various communities whether it be neurodiversity, learning disability or mental health it’s meant to be a compliment yet I’d happily drop the term into the nearest active volcano; I’m a (mostly) high functioning borderline I volunteer, I live alone, I’m in a relationship and while none of these are bad things they tend to be used to overlook the other side of things and the part the wants to sabotage all this because the more you do the less help you get.

Black and white thinking is something frequently mentioned with BPD but it’s not as simple as they make out my thinking can be very black and white in specific areas but in others I can see in technicolour. There’s a lot of mental push and pull especially when it comes to “recovery” I’m not a fan of the recovery model some days I want to move on from all this and thrive others I miss and crave the self destruction some days I go round in circles between the two and it’s times like this that being high functioning and self aware is actually painful because I can see what I’m doing to myself and others but there is no pull in the world strong enough to stop me from self destruction that can override the self hate and self sabotage.
I found myself arguing with someone the other day trying to break this myth that I’m high functioning and can manage without support that I’m ok that they only see one side of and it’s not the side that gets kicked out of a&e at 3am or that feels like the internal rage could burn up the entire world if it was fully released. So many things are subjective and thriving is one of them, as much as I welcome the idea of mental health awareness I’d like an awareness of the lack of services of the people who turn up to an appointment to find their care coordinator has left, of the people who feel that they’ve been chucked onto the mental health scrapheap because they’re not recovered and the high functioning people who are really just treading water and desperate to keep their head above water.

In search of validation 

Cardboard letters B P and D painted black with splatters of colour across them

I rarely feel pleased with myself for the things I’ve done, I get pleasure from the work I do and feel proud of the things that have been achieved but I don’t feel proud of myself. I’m not writing this because I want compliments or want people to tell me I’m great I struggle with praise and don’t know how to respond to it, criticism or negative comments are more familiar to me.

I mentioned in a previous post that I have a type, the same type of person I get attached to, there have been a few notable ones. There’s an obvious pattern it’s something I’m very aware of and even embarrassed by I’m 32 I shouldn’t be looking for a replacement mother, I know I’m not alone but it’s still hard to talk about, just writing this makes me feel ashamed.
I don’t have any contact with my family, I haven’t spoken to my mother in over two years and even when I did she wouldn’t be someone I’d go to if I wanted validation or praise so I look to other people to be proud of me even though I don’t feel it myself. I know everyone is different and I’m often told I’m hard on myself but I don’t see it, to me I’m so far behind my peers and where I should be by now. I have a tendency to separate my life into different boxes and present different sides of myself to different people, at work I want to be seen for being capable and functioning I’ve found it hard to show the parts that don’t function well as if I’m different people when I’m at home, capable by day self destructive by night.

Recently two of the people I looked to for praise or validation, the people I wanted to be proud of me and see me achieve things have gone from my life and aside from feeling that a large part of my support system has gone I don’t have those people I wanted to be proud of me and I’ve gone back to separating myself. I know the obvious answer would be to feel pride in myself and not look to others to feel validated but I’ve never felt good enough or that I’ve achieved anything and the behaviour patterns and attachment issues are hard to break and just move on from. 

End the stigma 

A large rabbit comforting a small rabbit with the words “life is tough, my dear but so are you” beneath it

There’s not a mental health charity or campaign that doesn’t talk about stigma around mental health issues but these campaigns as important as they are don’t address stigma within the mental health community or internalised stigma.

Mental health services are generally seen as the Cinderella service of the NHS and personality disorders services especially so, people with borderline personality disorder are often seen as attention seekers, over dramatic and untreatable (the name personality disorder doesn’t help), people often find if they say they have depression or post traumatic stress disorder or bipolar they receive better treatment especially in a&e.

Trauma is a complex issue and most people agree that there is a lot of overlap in mental health issues that come as a result of trauma, complex post traumatic stress disorder is generally less stigmatised especially within the medical world, some people challenge or avoid being diagnosed with BPD because of the stigma surrounding it and barriers it presents whether it’s an appropriate diagnosis or not. There is a general attitude that everything someone with BPD does is for attention that suicide isn’t serious and they don’t really want to end their life, some people even believe that personality disorder diagnosis especially BPD should be scrapped and replace with CPTSD.

I don’t claim to be the authority on all things mental health this blog slightly more coherent than the general stream of consciousness and thoughts rattling around my head and I really try to only focus on issues I have experience of as it’s not my place to talk about a diagnosis I don’t have but so many of the problems with people’s attitude to BPD in particular are around the behaviours that come with the condition or the unpredictable moods and changes some of which do cross over with other issues but I generally seen as BPD problems. If we removed the diagnosis people would still self harm, they’d still have problems with mood changes and relationships; if we transfer those issues to another label would we not just be transferring the stigma?

Of course I can understand why people wouldn’t want a stigmatising disgnosis but when people seem horrified at the suggestion that their diagnosis being BPD not bipolar or other people suggesting someone clearly has BPD based on their actions or behaviour it really doesn’t help those of us that are diagnosed with it and doesn’t help to change the attitudes to mental health problems when even within our own community there’s so much division and stigma.

Being diagnosed with BPD was about as surprising to me as someone telling me I had blue eyes it was very much a bears shit in woods and the pope is catholic situation. In the 8 or so years since I was told I had BPD I’ve had many different feelings about it from relief and validation to anger and hatred to shame but although I wouldn’t necessarily say I’m proud of it I am open about my diagnosis and don’t hide it. I do believe that there should be more clarity around the various overlapping mental health problems and issues that stem from abuse and trauma but if there are going to be changes then we need to find ways of removing the problems faced by people with BPD and other conditions with heavy stigma rather than carrying them over to another condition.

Image credit Louise Firchau – paper panda 

Cost and sustainability

rant1
A blackboard with “rant of the day” printed at the top and the letters NHS with pound signs drawn in white chalk

I had a list of things I wanted to blog about so instead I’m going to write about something completely different which came up few days ago.

I’ve been trying to get more into doing work outside of Mind which uses my lived experience of having mental health problems, last week I attended a workshop on Outcomes Based Commissioning (OBC). I’ve learnt that mental health meetings and groups loves acronyms, an alphabet soup of conditions, job roles, legislation and projects.

I’d like to tell you more about exactly what that is but honestly I’m not entirely sure myself. I can tell you that 8 organisations some statutory such as the NHS and some charity such as Mind and Spear are working together to change the delivery of mental health services in Richmond and somewhere in all this they’re looking for contribution and input from service users, carers and people with lived experience of mental distress.

One of aims from the mental health service is to ensure sustainability and deliver cost effective treatment, I have a couple of issues with this. 1) you cannot guarantee sustainability, you can do your best the make services sustainable but don’t make false promises especially to vulnerable people, 2) cost, now unless you’ve been living under a rock you’ll know that the NHS is chronically underfunded and overstretched; mental health has always been refereed to as the Cinderella service and when the going gets tough the tough gets cutting and mental health is often one of the first areas to feel these cuts.

So what’s the problem with pointing this out or looking to save money? well mental health already comes with a nice big serving of guilt for many people, guilt for putting pressure on loved ones, guilt for not working, guilt for being unreliable and it’s hard not to feel the need to justify the cost of treatment as I wrote in my last post I’ve been told by Drs in a&e to consider how long it took to treat me compared to the time it took me to cut myself, I’ve been questioned on why I called an ambulance despite feeling faint from blood loss. I didn’t choose to have mental health problems, my actions may be my choice but having these issues is something beyond my control partly due to my upbringing and home environment growing up.

Having the cost of treatment pointed out or hearing the providers talk about services being cost effective makes people feel guilty for something they can’t help and even puts people off seeking treatment whether that’s for self harm (I know people who will suture or glue themselves) or more long term treatment like psychotherapy or counselling.

The financial situation with the health service is complex but nobody should be made to feel guilty for needing healthcare or social care or feel they don’t deserve the help they need.

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