Author: Theperksofbeingadinosaur

40-year-old Queer disabled Londoner with an obsession with dinosaurs.

‘Freedom day’

Four face masks with cartoon animals on them
Four masks from Sugar and Sloth

Tomorrow is ‘Freedom Day’ when the final lockdown restrictions are lifted. What freedom people are currently lacking is unclear, but some things I’ve seen are – having to wear a mask, having to check in at shops and restaurants, and not being able to meet as many people as they like. Apparently, this is oppression, and we can’t keep wearing masks forever because it’s not normal.

After the first date for ‘Freedom Day’ was delayed, anti-lockdown and anti-mask (or pro-death) protesters marched through London demanding everything be opened up again. They walked past open pubs, open cafes and restaurants with indoor dining and into an open shopping centre, which then had to close because of the disruption they caused (I bet Alanis Morissette didn’t see that one coming).

Cases are rising rapidly despite vaccines. Younger people are contracting the virus; there’s another mutation that has been allowed to spread rapidly, and again, we’re told that more people will die.

Freedom for disabled and chronically ill people looks quite different. The Office for National Statistics says that 2.2 million clinically extremely vulnerable (CEV) people were advised to shield. This meant not leaving the house at all unless absolutely necessary. Many relied on government food boxes or support from local charities and mutual aid groups that sprang up during lockdown.

People who are CEV, especially those who are immunocompromised, are getting told to shield again. Some people haven’t been out since the start of 2020, and the vaccine may not even work for immunocompromised people or those taking immunosuppressants. Since the start of the pandemic, there’s been this message that it only affects the elderly and vulnerable. Aside from this not being true, these people are not disposable because they’re older or disabled, but they’ve been thrown under a bus and allowed to die to give other people their ‘freedom’.

The other used phrase (apart from wake up sheeple which makes me want to stab someone in the eye) is if you’re scared, stay at home and let people who want to live go out. People who are shielding don’t want to have to stay in or avoid contact with their partners. They don’t want to go a year without seeing anyone or not getting the medical or social support they need, and they shouldn’t have to stay in forever because others are too selfish to wear a mask or make any other minor sacrifices.

July is disability pride month, and once again, disabled people are being left to die or excluded from society, this time to please the people who are tired of the pandemic. We have to learn to live with the virus, let the bodies pile up on the street and pretend to care with gesture politics like clapping, because making sure people can go to the football and trade deals with India are more important than saving lives.

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10 things not to do to disabled people

It’s disability pride month, and I’ve written a list of things not to do to disabled people.

1. Don’t guilt-trip disabled people for not being ethical enough. We know Bezos is awful, we know Amazon treats their staff like crap, we know all the issues with fast fashion and ‘Unnecessary’ plastic packaging on fruit and veg. Shops often aren’t accessible, and many of us don’t have the energy to trawl through charity shops and second-hand shops.

The pandemic made people even more reliant on places like Amazon, especially those who were shielding. Plastic straws have such a negligible impact on climate change and single-use plastic, and that ‘Unnecessary’ plastic on fruit and veg may be the only way someone can eat it (trust me, we don’t like paying more because we can’t cut up a mango).

2. Do not touch someone’s mobility aids. They’re an extension of our bodies, our freedom to access the world. Grabbing someone’s wheelchair could cause pain and injury or damage it (do you know how much those cost?), moving someone’s mobility aid to somewhere more convenient might take away their ability to move from where they’re sitting, if something is in your way ask (nicely) if we’re able to move it, we don’t bite (often).

3. Don’t touch or distract a service dog; they’re working, and distraction puts the handler at risk.

4. This should be obvious – don’t report them for benefits fraud because they walked or you think they’re faking it when they’re having a good day. Despite what the Daily Mail says, benefit fraud is not the massive problem they try to say it is. Don’t make comments like ‘It’s a miracle’ if a wheelchair user stands or walks; not everyone is paralysed or unable to walk at all.

5. Following on from 4…..don’t complain about accommodations made for disabled people. Motability cars aren’t free; they’re rentals with the money being taken out of benefits. Yes, we can often get a carer in free to events, but that’s because we need help and assistance. You might have to wait for the next bus or move your buggy, but wheelchair users have a legal right to that space (I’m an ambulatory disabled person, and that’s the only space I can safely stand, if I can move, so can non disabled people).

6. Don’t make assumptions about our abilities if we say we can do something or we don’t need help. Don’t argue or do what you think we need.

7. Don’t assume somewhere is accessible because it has a lift or a ramp. Accessibility isn’t that simple. Ask what accommodations we need or if we want to look into it instead.

8. Don’t take photos or videos of us in public. I can’t believe I have to write this. Our appearances, behaviour, the way we interact with the world or the way we physically move may not be the same as everyone else, but news flash, we’re people too. Don’t do this (and if you do, please go suck a bag of dicks).

9. Don’t blame us for the lack of access affecting you. We can’t help the amount of time it takes for trains or buses to put out ramps; we also have places to get to.

10. Don’t take advantage of things that are in place to make life easier for disabled people. Don’t park in blue badge parking spaces if you don’t have a blue badge, even if you are only going to be a few minutes. Don’t use the accessible toilet to go for a poo or to take selfies. Priority seats are near the doors on a train or bus because we need them to be. Please don’t sit in them unless you need to.

These are just a few things and nowhere near an exhaustive list. Everyone’s circumstances are different, and not all disabilities are visible. My comments about not using an accessible toilet or priority seat are not aimed at people who aren’t visibly disabled.

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Mental Health awareness week 2021

A cartoon of an outdoor setting. There is a cloud with the word nature in it and a tree with a small bird flying towards in. On the ground is a hedgehog ontop of grass where the words mental health awareness week 10-16 May 2021 are written. In the top righthand corner is the logo for the charity Mental health foundation.

I am aware of mental health. I’m aware of Eating disorders, I’m aware of Autism and Tourette’s and Fibromyalgia, I’m even aware of Goths (yes, there is a Goth awareness day), and I’m very aware of how tired of awareness days I am. At the moment, there is (rightfully) a lot of focus on the mental health effects of the pandemic and lockdown; however, those of us who struggled before feel like we’ve been yelling about social isolation and the 9-5 lifestyle being detrimental to our mental health for years, but no one listened.

The thing about gaining awareness is that it’s meaningless. How do you quantify awareness? How do you evidence it? What exactly is the aim?. People with mental health problems are aware of helplines and Time to Talk campaigns, we’ve heard all the talk to someone messages, but who do we talk to? And what happens when talking isn’t enough? Or when no one listens?.

We’ve tried talking, we’ve asked for and begged for help, we’ve called the helplines, the crisis lines, we’ve been to A&E, walked until our shoes wore out, coloured in our colouring books, we’ve drunk more tea than we can count, and we’ve had a fucking bath. We do all the things we’re told because otherwise we get labelled as difficult or told we don’t really want help; since the pandemic started, the already stretched services are at breaking point. There is no one to talk to.

The messages are well-meaning, but there is a limit to what helplines can do, and even being in contact with services doesn’t guarantee support. In the last two years, three people I know have taken their lives, and all three were known to services. Being told to talk didn’t help them; awareness couldn’t save them. They had all tried talking; they had all tried reaching out.

In less than two weeks, it’ll be two years since Juliette died.

This is why I don’t like awareness campaigns; they’re meaningless, hollow gestures with no real purpose or motive that don’t address the real problems or try to change the systemic problems with mental health services.

Please don’t tell me to reach out, talk or ask for help. I’ve done it for so long, and I’m tired now.

For Nancy, for Juliette, for Ella.

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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 adaptations, 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 mobility aids 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 partner recently moved, and his 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.

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

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You are creating all the bubbles at play

Two grey train station benches both with red signs warning people not to sit on them due to social distancing
Why are we waiting? Seats you can’t sit on

I’ve mostly avoided public transport and the public in general since March; however, in the last couple of weeks, I’ve made my first trip south and back and used trains again. I know I’ve blogged about the difficulties of using public transport as a disabled person before, but travelling during a global pandemic with social distancing measures makes it harder.

The current recommendations for distancing are two meters where possible or 1 meter+. Buses have blocked off some of the seats, benches have every other seat taped up, and all forms of transport are meant to limit how many people use them at a time. Face coverings are also mandatory.

The problem is that people who need to sit down, and especially those in need of a priority seat, are at a disadvantage. The majority of priority seats on buses are not in use, non disabled people sitting in the seats nearest the doors on the trains force disabled people to walk down the train or stand and a lack of benches at stations again forces standing or sitting on the floor, which is dirty and unpleasant, even when there aren’t increased health risks.

Despite wearing a hidden disabilities sunflower lanyard, a please offer me a seat and wrestling with a suitcase and mobility aids, people still seem oblivious to my existence (I don’t like asking in case someone is disabled).

A light green lanyard with small sunflowers printed on it
A sunflower lanyard from the hidden disability scheme

Masks are a struggle for some disabled people, too. They’re claustrophobic for people with anxiety, can be difficult for people with sensory issues and can make communication hard for people who lip-read.

There are many ways in which the pandemic is harder for disabled people than non disabled people, especially struggles around accessibility, and the easing of lockdown restrictions keeps bringing more challenges.

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Bee for bee 🐝

In my last post, I talked about 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 bumblebee 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 to 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 bumblebee tattoo on my wrist with a purple watercolour-style background.

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Suicide is pants

Long time no blog.

This post is about suicide, though there is no mention of methods.

A bee on pink flowers at the station on the day of Juliette’s funeral

I’ve been wanting to write this for 6 months, but it was too hard. A potentially creepy comment about owning the same underwear on a drunken toilet selfie did not get me blocked, but instead was the start of our friendship. We met through an internet mental health ‘Community’, and there were many eye rolls about such places and some of the people in them (though we were aware that we were far from perfect ourselves).

I soon found that Juliette had a wicked sense of humour, she was attractive and creative and had various different hair colours in the time I knew her. She loved animals and owned four gorgeous rats. She had an accidental memorial leg of tattoos for people in life who’d died. Despite her intolerance to bullshit (and lactose), she was loyal and supportive to those she cared about. Hummus memes were frequently shared and still pop up on my Facebook notifications. Some of the jokes we shared were truly terrible.

Living in Manchester, she got a worker bee tattoo with ‘Don’t look back in anger’ going around it after the Manchester bombing, and bees became her ‘Thing’ online. A gif of a cat dressed up as a bee (creatively dubbed beecat) falling slowly off a sofa became our way of conveying frustration/ crap day/ crap mental health, and often summed up how we felt. Her mandala cat tattoo was also dubbed beecat.

We had a group chat with three of us in it, which was 90% complaining about life, mental health and the internet and the rest was probably random memes and beecat gifs.

I knew Juliette had attempted suicide previously, but part of you doesn’t want to accept that it could happen, and when it did, I didn’t want it to be real. It felt like someone had punched me in the chest; a feeling that’s come and gone for the last 6 months. I cried for hours and have cried for many more since.

Her funeral especially broke me. When many of the people who cared about her had mental health issues and were scattered around not only the country but also the world, only a few of us were able to go, but a request for people to change their profile pictures to bees spread and on the day of her funeral, my social media was full of different types of bees. I’ve never been to a funeral full of people wearing cat ears before, but as soon as we arrived, we knew it was the right place.

People talk about grief and stages as if it’s linear and as if it doesn’t come out of nowhere and punch you in the stomach; it’s not that simple or straightforward. Oasis makes me cry, pictures of furry bumblebee butts hanging out of flowers make me smile, and part of me still expects her to be online.

Sometimes I’ll make a really inappropriate joke, and I know she’d have laughed and we’d both joke that we were the worst. I thought the 6-month anniversary of her death yesterday would be hard, but instead I was caught out on Friday crying for several hours (the ugly, snotty, puffy face version).

Tomorrow I’m going for a consultation for a bee tattoo, so I’ll always have a reminder of our friendship.

I miss you

Beecat loves you x

Helplines aren’t a replacement for proper mental health care, but if you’re in distress and need someone to talk to, you can contact the Samaritans or, if you’re under 35 Papyrus. Text support is available from Shout.

If you’ve been bereaved by suicide SOBS can give you support and advice

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Release

A countdown for the number of days I’ve been self harm free

I was trying to explain to someone recently the conflicting feelings that come into my head around self-harm. I want to self-harm, but really, I don’t. I keep thinking how much better it was to have an outlet for the way I feel, but really, I know that it wouldn’t help, it didn’t help, not really, not properly. But that doesn’t stop my mind jumping to it when I’m stressed, anxious or overwhelmed.

I haven’t self-harmed in 391 days, but I self-harmed from the age of 17 to 32 and intermittently before that. It’s not that I want to self-harm, it’s just that I want to breathe and not feel like I’m suffocating. I want to stop feeling like I’m dragging a weight around with me or wading through custard, and when it’s been something I’ve done for so long, it’s an immediate thought, an ingrained reaction that my mind jumps to when I feel bad.

I’m not naive, I know that just because I haven’t self-harmed in a long time, it doesn’t mean I won’t ever do it again. I can’t say for sure that I know I’ll never self-harm again, and even now, it’s not that I never do anything unhealthy/ potentially harmful or things that could be seen as negative ways of managing things, they’re just less destructive and don’t involve me ending up in A&E. The longer time goes on the bigger the stakes, once I was past 6 months I’d beat my previous longest time, then it was 7 months, 9 months and finally a year.

Sometimes people ask what they can do to help or make things easier, but I don’t always want them to do anything other than listen or try to see things from my position. I know some people are more practical than others, and their reaction is to look for a solution, but sometimes the solution is just to please listen to me and hear what I’m saying when I say how overwhelmed and stressed I feel. That I miss people I was close to, how alone I feel, how the light at the end of the tunnel feels very dim and distant right now, that’s what can be done to help.

Sometimes I just want someone to take me down to the car park and let me cry

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Sing little darling

Sing with me

Blue, green, red and white laser beams pointing in all directions around s concert venue

I love live music. I love going to gigs, even though I don’t do it that often; it’s something I really enjoy. As a rather emo teenager, I’d queue up in the cold wearing just jeans and a t-shirt, arriving several hours early to guarantee a place at the front by the stage with only the bare minimum of possessions with me to avoid the need for a bag. I would far rather be crushed and sweaty in the mosh pit than sensibly seated or in the less crowded areas at the back.

My first and only festival experience was not something I’m keen to revisit. Between the lack of sleep, disrupted medication schedule, and discomfort of camping, day festivals and open-air gigs are more my thing with a comfortable bed to return to

The days of post-gig highs from adrenaline and lack of sleep have been replaced by planned annual leave the day after a night out to recover. I can’t stand for anywhere near the length of time a gig lasts, and the crowds bumping and pushing me not only increase my anxiety but also cause physical pain and rock my already shaky balance.

Today I’m paying for last night, although the pain and exhaustion are worth it for such a good time seeing First Aid Kit, a band that, although I haven’t been following for long, I’m now a big fan of and really love the music of. They’re also amazing live, but despite some of the perks of going to a gig as a disabled person, such as queue jumping or getting a carers ticket for free, I do wish I could still be near the front and not forced to be seated out of necessity.

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Fake it till you make it

Tonight* my brain is spiralling down into doom and failure. It’s convincing me that I’m a fraud just waiting to be caught out, and that I’ve convinced people into believing I’m something I’m not. People will soon realise this and see right through me, that giving me a job, responsibility and letting me run a service is a mistake.

I’ve had the talk about imposter syndrome with someone before, someone I respect, who to most people would never appear to feel this way. I even bought myself a print of the picture used in this blog to try and convince myself that, actually, I’m not the imposter I think I am.

The feelings of responsibility and expectation are once again terrifying me. For a long time, I’ve believed that if I never try, I can’t fail, and I can’t screw things up, but I’m restless, and I wasn’t feeling stretched any more by the things I was doing.

I’ve spent a large amount of this evening crying as my thoughts continue to spiral and snowball, collecting more and more until it becomes an avalanche (sorry for the naff metaphor). Anxiety has been creeping in recently, and I’m trying to tell myself that it’s normal to feel some anxiety about a new job.

It doesn’t really matter what people say because my brain won’t listen. I know I’m not the only one who feels this way, and I also know that I did well in my interview, but facts and emotions don’t mix, and the fear is strong. I wanted this job so much, and I still do, but the loss of security and increased responsibility and the worry of everything going wrong are very much on my mind (and in my dreams).

Today I have my induction with two other new members of staff, and I’m hoping that I’ll just be treated like any other member of staff and not have to hear everyone say I know everything and that I’ve been here forever, because this is still new to me and there’s a lot I’m going to have to learn.

*I started writing this last night

Image credit to People I Loved screenshot from Blurt Foundation on Instagram

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Part of the problem?

Dinos back
A green background with a pink dinosaur cartoon carrying a black briefcase and a 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 people’s 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 sickest, 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 doctors 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, and it’s often not pretty. 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 throwaway 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 mental health issues, 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. We all have different experiences; 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: mental health problems aren’t uncommon, they’re increasing, and you can’t always tell just by looking at someone.

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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 separately.

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.

I’ve never seen a discussion around the connection between disability or chronic illness and self-harm or disabled people deliberately not taking care of their 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 feel I deserve to rest. And times when I don’t take painkillers because it’s an indirect way of inflicting pain on myself, or going to places that aren’t accessible and 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.

They don’t understand 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. For me, it can be an increase in symptoms, but for others, it can be much worse.

Then there’s the other side. Health services that 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 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 nor 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. They often aren’t accessible, and 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 even within the disability communities, there is still too much separation of physical impairment and mental health issues.

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The most wonderful time of the year?

IMG_6234
A rather appropriate Christmas card I saw last year

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. Now I have no contact with my immediate family, though the family Christmases I did have 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 housing association is 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 fill 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 devices, I tend to spend too much time in bed or watching YouTube.

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. 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 however much I need routine, I’m not missing getting in at 8:30 to prepare for volunteer training.

IMG_6072
My attempts at festivity, fairy lights wrapped around my crutches and stick

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. 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.

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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 a few days ago.

I’ve been trying to get more into doing activities outside of volunteering, 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 love 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 charities are working together to change the delivery of mental health services in the area, and somewhere in all this, they’re looking for contributions and input from service users, carers and people with lived experience of mental distress.

One of the aims of 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 doctors 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.

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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Dear Dr (a message to Healthcare professionals treating self harmers in hospital)

I’m a regular at my local, which probably doesn’t sound unusual or uncommon, except that I don’t mean my local pub; I mean my local A&E department. Like around 1 in 4 people in the U.K. I have mental health problems and often require medical attention for self-harm. I decided to write a post about my experiences in A&E as an open letter to medical professionals.

Dear Dr or health care professional

The NHS is underfunded and over stretched, you work long hours in challenging conditions, often with little thanks or support; it’s impossible to be oblivious to the current state of our health care system. When you’re juggling patients and trying to be in 3 places at once it’s not hard to understand why you might not want to spend an hour or more treating someone for self inflicted injuries especially when you’re coming to the end of a long shift; however you chose a career helping people and taking care of their medical needs and I am a person in need of medical attention.

If you’ve never experienced a mental health problem or felt a need to harm yourself, then I don’t expect you to understand how I feel or why I do what I do, but the way I got my injuries doesn’t change the way they should be treated. I’ve been treated in ways I can’t imagine people who are there after an accident would be.

I’ve had wounds washed out in a sink in front of all the other cubicles and taken from one part of the department to another with nothing covering my arm while people stare at me, often horrified. On one occasion, my arm was covered so it wouldn’t scare the children in the paediatric A&E.

I’ve been stapled with no local anaesthetic and told it’s fine because it doesn’t hurt (it does), I know this is in partly due to guidelines but I’ve also had malicious treatment where one doctor repeatedly pulled the staples out and re did them all the while telling me if I didn’t stop I’d lose my arm while I sat in bed crying. I’ve had doctors tell me to think about how long it took them to treat me compared to the time it took me to hurt myself, and when I’ve felt faint from blood loss and said I need to sit down, I’ve been told I can wait a couple of minutes.

In my A&E notes, it says most of the time that I’m not distressed or that I was making eye contact; apparently, that means I’m fine. My mental state is frequently judged as fine because I’m not shouting or being abusive or absconding; however, at times when I have been visibly upset, I’m ignored.

I know accident and emergency staff are there to treat my physical injuries and leave the psychological side of things to the psych liaison but please remember that attached to the arm you’re treating is a person, I know my cuts can be deep and you may need another opinion but I’m not an exhibition for everyone to come and have a good look and discuss the damaged I’ve done, I see the signs that talk about dignity privacy and respect yet that doesn’t seem to apply if you’re a mental health patient; a little discretion wouldn’t hurt.

This isn’t intended as a criticism of the NHS; I know I’d be dead without it, but I didn’t choose to be this way; it’s something I’ve not been able to break away from despite treatment, and no amount of snapping elastic bands or holding ice cubes has ever replaced it as a coping mechanism.

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