Managing

I don’t have an issue with taking the easier option, I’m not going to take the harder way of doing something if an easier option is available, why struggle to add something up if there’s a calculator available? Why carry a suitcase if it has wheels? Why use a tin opener if there’s a ring pull?

But when it comes to being disabled i tend to manage before going for the easier option or the option involving using aids or adaptions I’m more hesitant to do what’s easiest. Some of this is about other people’s perceptions or questions, when I first started using a mobility aid I was so anxious about what people would say because I was going from having an invisible disability to a visible one and suddenly people became aware of the accommodations I needed (not completely but more than they had) you can thank social anxiety for me not asking for accommodations before or even after I still prefer things like badges or lanyards to talk for me.

My partrner recently moved and the new flat has a bath with a shower attached but there are no handles or grab rails; at home my bath has handles and a grab rail and that’s a struggle. I put grippy duck stickers in the bath I told myself it was fine and I could manage but then I caved and got a shower seat of course I still questioned whether I needed it because I was managing without.

A white slatted shower stool in a white bathtub
The latest accessory

On Monday I used my shower stool and it really made things easier, I could spend longer in the shower, I used up less energy, was less anxious about falling over and I was able to wash my legs and feet without the risk of falling.

Managing isn’t everything, I can manage to walk unaided but it’s harder, causes more pain and fatigue and I’m more likely to fall over, I could manage at cons and outdoor events without using my crutches but it would be exhausting, my hips would hurt so much I wouldn’t be able to walk the next day and I wouldn’t be able to manage without a lot more help than I already get especially on wet or uneven ground (shout-out to my service Teffy).

Sometimes it’s not enough to just manage and if there is a way to make things easier don’t settle for managing.

Bee for bee 🐝

In my last post I talked and Juliette and what a caring, fun, creative, loving, colourful person she was, when she died I said I’d get a bee tattoo not a worker bee I wasn’t looking to copy her but a bumble bee to remind me of her and our friendship which started from matching underwear, a reminder of the memes and pictures of bees with fuzzy butts we used share. On Monday I got my tattoo of my own fuzzy butt bumble bee with a purple watercolour background to match Juliette’s hair. I know she’d approve of this

A bumble bee tattoo on my wrist with a purple watercolour style background

Photo (and tattoo) by Sandro at Sacred Gold tattoo and piercing

Who sits at a desk like this?

I like to make places and things “mine” make them reflect me and my personality, sometimes this surprises people like last year when a drunken colleague who got me as their secret Santa nicely summed me up saying “you’re pink and girly but not pick and girly” I love pink, my mobility aids are pink, I have quite a girly* bedroom but I’m mouthy and sweary and suggestions of laddette to lady have been made. I do know that all this gendering of colours and behaviours is to be fair a load of bollocks but lots of people do like to gender everything.

I think for me it’s important to make things and spaces reflect me is because I spent a lot of not time feeling like I lacked an identity which is one of the traits of BPD, I know it’s normal to go through phases and even identity crisis’ especially during adolescence and teenage but i was a human (dinosaur) chameleon I’d change the way I acted and even spoke around others it wasn’t deliberate I just soaked up other people’s personalities and mannerisms like an emotional sponge.

Of course I went through various embarrassing phases such as the emo phase (though I’m still an emo at heart) but it wasn’t just my tastes and appearance changing I didn’t feel I had a sense of self I felt like a hollow shell lacking an identity.

When I started my job six months ago I bought a pink desk organiser which has since been joined by pink in trays, a couple of toys and a coaster saying punch today in the face, I’ve also decorated it for Christmas and put up motivational postcards on the wall, for me it’s important that my work space reflects me especially as I spend so much time at work it really helps my wellbeing to feel it’s somewhere I belong physically as well as emotionally. Although I still experience the occasional existential crisis I feel more secure about who I am than I have in the past, part of this is having things I’m passionate about such as my job and writing, that’s not to say my job is my entire identity but mental health is obviously something I’m very passionate about so I’m Georgiesaurus I like pink, I swear a lot and often drink too much, I love House MD, my top artists on Spotify include Bruce Springsteen, First Aid Kit and George Ezra, I believe pineapple belongs on pizza, I hate Theresa May and I wear cat mittens.

“This is the only me you get”

To alcohol the cause of and solution to all of life’s problems

A young drunk dino.

drunk (2)
A picture of me drunk with my mouth open wearing a black and white striped top

I’m a mouthy drunk, not the messy head down the toilet drunk of my early 20’s or the numbing my body with vodka so I could take action to numb my mind drunk of my late 20’s, I’ve never had a problem with alcohol as such more a problem with the things I do when I’ve had alcohol.

I don’t drink much now, chronic illness and medication have seen to that and I’m really only a social drinker but I’m also anxious socially and alcohol is a great way to reduce the anxiety and my tongue. When I say I’m a mouthy drunk I don’t mean rude or aggressive (passive aggressive maybe) more that my tendency to over share increases as my inhibitions decrease adding this to a habit of using humour as a way of making light of difficult subjects it can be awkward at best and messy at worst.

But this isn’t really about alcohol, to quote thirteen being drunk doesn’t change who you are it just reveals it” I recently did a support plan at work about supporting my mental health including triggers, what I can do to support myself, how work can support me and what signs there might be that I’m struggling. One of the things I included here was changes to my relationships with colleagues, I feel I have some good relationships with some of the people I work with and we tend to have a laugh and joke about things including each other it’s banter but if I’m struggling or not in a great place mentally I can take that too far past it being funny or harmless.

The problem with banter is when mixed with anxiety and alcohol and a loosened tongue the less fun parts come out, I’m not incapable of being unpleasant or bitchy I’m certainly no saint but it’s not always just to be a dick it can and recently was in reaction to hurt, those annoying attachment issues rearing up again at unplanned social interactions with someone who was once a source of support who then let me down and lied to me more than once. I’ve struggled with change and boundaries but I’m not oblivious to them and I’m not naive I don’t need people to lie to me and give me false hope only to completely go against what they said, the worst part is although I’m angry part of me still misses them but I don’t want to not that I particularly want to be angry either but it would be easier to just be angry.

It would be better if I didn’t have to see people who let me down or at least have some control over the interactions but that’s not always possible and while the banter may have gone a bit far and the anger crept in aided by alcohol it didn’t messy and there were no close encounters with the toilet or trips to a&e.

It’s personal

I’m clearly no stranger to sharing my life both online and offline, if I was this blog wouldn’t exist and you wouldn’t be reading this now but offline I’m starting to get tired of sharing my story and talking to people about my history and mental health. I’ve spoken to so many people in different settings from pop up cafes to fundraisers, funding bids for work and over 1000 young people through volunteering on the youth service I now run and although logically I know it’s not true it does feel as though there must be a shortage of people who haven’t heard my story by now.

Today I’m running training with my new volunteers on writing their personal story and although no one is forcing me to I don’t feel like I can avoid telling it again it doesn’t seem fair to ask them to share theirs and me not share mine, I’ve been thinking about it for a couple of weeks and Im still not entirely sure why I’m so against telling it now I think it’s partly that I’m tired of hearing it and then the fear of being judged and the shame of not really having achieved much in my life. I really do enjoy my job and it’s not that I think it doesn’t count but I’m in my 30’s and just getting started in career where most of the people around me are younger than me and more qualified. I don’t feel like an inspiration or someone to look up to, hearing other people’s educational backgrounds and qualifications reminds me of what I don’t have and what I’m not clever enough to ever achieve, maybe this is internalised to an extent but I also know the reality of my experiences in education.

When you’re known for one thing or people see you a certain way it can be hard to break that view no matter how much you change or try to move on you’ll still be seen the same way, I’ve talked about my past so many times as a volunteer and although not in great detail there’s a high chance that I’ll be meeting people in my new role that have heard my story, I don’t hide having mental health problems and it’s not like I even could if I wanted to I’ve made sure of that it’s something I’ll never be able to fully hide but even though it’s my own fault I wish I had a choice.

Part of the problem?

Dinos back
A green backgroud with pink dinosaur cartoon carrying a black brefcase and pink walking stick. The words dinos back are at the top in black

Guess who’s back? Back again, dinos back, please like and share.

So it’s been a while, I’ve had to do lots of writing for work recently which hasn’t left me with much brain capacity to write for enjoyment, but I’m back and return with a rant.

This week is Mental Health Awareness Week and the theme is stress which is ironic as stress and work are the reasons I haven’t blogged recently. It often feels like a week can’t go by without there being some kind of awareness day/ week/ month so far this year we’ve had time to talk day, self injury awareness day, university mental health day, eating disorders awareness week and no doubt many others. This month is borderline personality disorder awareness month normally I’d write something about these or use them as a springboard to write about a related subject but this time I’m writing about other peoples way of promoting these awareness days.

I know that I often use these awareness days and campaigns to promote my blog and that’s not what I have an issue with but people using it to promote their illness or compete over who is the illest especially on social media. Mental health problems and chronic illness already have so much stigma attached and there are so many misconceptions around them, the biggest areas of stigma I’ve found are within the medical system from Drs and medical staff I’ve had several occasions where I’ve been poorly treated and discriminated against due to my mental health and especially self harm. So why when there is already stigma attached do people within the mental health and chronic illness “communities” claim to be “raising awareness” by glorifying their illness or posting things that just add to the misconceptions?

Posting pictures of your self harm as part of an awareness day isn’t going to reduce stigma, posting pictures of your face scratched up or countless pictures of your starved body is shocking and attention grabbing but ultimately adds to the idea that self harm is purely graphic and bloody, that personality disorders are all about self harm or that eating disorders are about being thin and fragile, mental illness is complex but it’s not pretty and we don’t need more images of fragile, delicate white girls or bloody and bruised bodies in the name of raising awareness. If I had £1 for every time a health professional made a throw away comment about people with personality disorders or treated someone’s self harm in an unprofessional or even cruel way I would be a wealthy Dino.

We need to change how we raise awareness and avoid glorifying mental health problems as a way to show the reality of living with a mental health issue because the reality isn’t just what’s visible and just showing that side of things not only gives a very narrow view but also undermines people who don’t experience mental illness this way, it’s a broad spectrum and everyone is different and we all experience things, everyone has different symptoms and lifestyles, mental illness is invisible not everyone has scars (at least not physical ones) and that should be the message we send that mental health problems aren’t uncommon and they’re increasing and you can’t always tell just by looking at someone.

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 

Service user involvement and mental health awareness

agm16
A picture of me wearing a sparkly maroon jumper and gold star necklace with a floral lanyard around my neck, I am holding a piece of paper and talking into a microphone.

I’ve been volunteering for just over four years, this was a speech I gave at the 2016 Annual general meeting (AGM).

One of the things that appealed to me when deciding to become a volunteer was being able to use my lived experience to benefit myself and others and the importance placed on the voice of service users. I’d been a group member in the Peer Support groups for a while but had never considered or planned to get involved in mental health in any capacity other than being a service user or patient, before joining the groups I’d never seen any benefit to having a mental health problem after all my experience had just brought me trauma, disappointment and more prescriptions for psychiatric medication than I can count.

Over the past four years I’ve progressed as a volunteer across different projects and areas of the charity and have used my lived experience as a Peer Support Volunteer, Youth Wellbeing Volunteer and by becoming more active with service user involvement being able to speak on behalf of people with mental health problems in the area. I’ve been a part of the local crisis concordat group for a year now looking at the way crisis services are delivered and how they can be improved I’ve also attended the changing minds festival at the Southbank centre, been part or research into unmet needs in the borough and sat on a panel talking about mental health and art.

Service user involvement is often under-represented and many people don’t realise that their views and opinions are not just important but needed and aren’t aware that these opportunities to talk about their lives exist. People with experience of mental health problems and those who have used services whether NHS, charity or support groups are known as experts by experience for good reason because no one knows us or our needs better than we do something which goes for everyone not just people with a mental health problem or a certain diagnosis.

Another project I’ve been working with is the mental health awareness workshops with the volunteer coordinator, this is a training programme offered to organisations wishing to boost levels of mental health awareness in their workplace. So far I’ve told my personal story to two groups of people with English as an additional language many of whom also struggle with their own mental health difficulties and were able to discuss this after I talked about my problems.

I was recently described as “very articulate” and told I could “probably talk my way out of any situation” aside from possibly being the best description of me ever it’s what motivates me to continue to do the things I do. In January I’ll be co-delivering part of the mental health awareness training and talking about myths and misconceptions surrounding mental health and I plan to use my skills to raise awareness and do what I can to improve and influence mental health services not just for my benefit but for the benefit of all the people who aren’t able to be as involved as I am. On the days where my mental health is getting me down or I feel angry and frustrated because of my issues I try to think of all the things I’ve done over the past few years the experiences I’ve had and people I’ve met none of which would have happened if I didn’t have a mental health problem.

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