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,
I don’t like Christmas, call me Scrooge or the grinch but i really don’t enjoy it. Christmas can be a really difficult time for so many people there’s a big emphasis on joy and happiness, being around family and friends but the happy family isn’t a reality for many, my family diminished over the years with elderly members moving into nursing homes and dying and now I have no contact with my immediate family though the family Christmases I did have often were rarely happy ones.
My mental health tends to deteriorate around this time of year the run up to Christmas really makes me stressed and anxious despite knowing rationally that the day itself will most likely be fine and that I’m actually going to spend it with two people (and two cats) that I’m choosing to be with. One of the struggles I have with Christmas is that most of the things I do to support myself aren’t an option, I’m off work for two weeks, there’s a big reduction in public transport so as a non driver I’m limited on how much I can get out, health services are reduced as are most other things like council services and housing association (not that my housings are any use when they are in) it feels like the world shuts down and the prospect of over a week with nothing to do doesn’t feel me with joy but anxiety.
I need routine and structure to stay relatively sane (emphasis on relatively) though this structure is mainly external as left to my own devises I tend to spend too much time in bed or watching YouTube but the idea of days with nothing to do and falling back into bad sleep patterns reminds me of when that was all my life consisted of endless days of nothing stretching out ahead of me with little point in knowing what day it was when they were all the same, where I’d stay up half the night and sleep half the day (this was mainly a way of reducing the amount of time I had to spend around my mother) although how ever much I need routine I’m not missing getting in at 8:30 to prepare for volunteer training.
Christmas is also shortly followed by new year and the thought of change and reflection, I’ve been reflecting a lot recently especially on relationships as I mentioned in my last post, I’m tired of missing people especially people who don’t miss me who made promises they didn’t mean I don’t want to miss them anymore. In January I’ll be once again going through medication changes in an attempt to finally get off antipsychotic medication something I’ve been wanting for a while.
Disability, chronic illness and mental health problems don’t go away for the holidays it just means different challenges and things that can affect pain or fatigue and trying to manage pacing while still enjoying the day.
To anyone struggling this Christmas, with isolation, pain or mental illness you’re not alone this dinosaur sends love and solidarity. If you need support during the Christmas period the Samaritans are always there and comedian Sarah Millican will once again be doing #joinin on twitter for the 7th year running, have as good a Christmas as you can a big Christmas RAWR from The Perks of Being a Dinosaur.
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.
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
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.
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.
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.
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.
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
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.
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.