Why We Are Using “International Zebra Day” To Highlight A Rare Illness By Lisa Mulholland

31st January is “International Day of The Zebra” and the Ehlers Danlos Society is marking the day in a big way! They’ve asked Ehlers Danlos Syndrome sufferers like me to show our zebra stripes to raise awareness of the condition.

This blog post is my way of wearing my zebra stripes and showing solidarity to my fellow zebras, who include my friend Bev and her children.

You’re probably wondering what Ehlers Danlos Syndrome (or EDS for short) is and what on Earth it has to do with zebras… well don’t worry, you aren’t alone.

Most people and many medical professionals are unaware of the condition (although it is becoming more well known) which is exactly why we need a day of the zebra… still confused? Read on!

Back in the 1940s the medical profession coined a phrase to help its students diagnose conditions that they would likely face in their careers:

“When you hear hoofbeats, think of horses, not zebras”.

In other words look for the most common answers rather than something rare, like EDS! That is why the EDS community have chosen the zebra as their mascot.

This metaphor underlines the difficulties that we face when entering a doctors surgery or hospital, where we are often faced with professionals that are only looking for common conditions causing years of confusion and misdiagnoses.

So what is EDS?

EDS affects the collagen in your body. Collagen is best described as the glue that holds everything together. It’s in all your organs, muscles, ligaments, skin and soft tissue. Normally a person’s collagen is like a flexible but tough glue, allowing your body to function normally. However for an EDS sufferer it is more like stringy chewing gum, easily stretched and unable to support the body as it should.

Having EDS effects everyday bodily functions such as walking, writing and any impact activities. It effects your digestive system, your heart and other major organs.

There are currently around 10 different types of the condition. With vascular EDS which majorly affects the heart and veins; being the most severe form.

The problems associated with EDS are endless and confusing. This wonderful organisation explain further and help with research into the condition :https://www.ehlers-danlos.com/what-is-eds/

I was first diagnosed with this condition, four years ago, when I was 35 years old, after years of unusual medical problems that left doctors scratching their heads, including:

• Fainting for no obvious reason, with my heart rate plunging into the 30s (most people would be in the emergency department with this)

• Repeatedly dislocating my hip but also partially dislocating things like my knees with no trauma or obvious reason. Every single day.

• Not responding to local anaesthetic. My body just rejects it.

• Chipping my teeth or partially dislocating my jaw after doing something minor like eating an apple or a crusty roll.

This is just a tiny snippet. It really is unusual and seemingly endless.

Once when I was 5, a simple cold made my liver swell up and I was unable to move. I was rushed into hospital and the doctors suspected meningitis, tuberculosis and all sorts but ultimately I just randomly recovered and that was the end of that…. until I got my diagnosis of EDS . 30 years later…

Sat in the rheumatologist’s office after years of failed physio therapy attempts to stop my joints popping out of place, she fine tooth combed by entire medical history and then she explained “Everything is caused by your Ehlers Danlos Syndrome. Everything”

Even my heart defect. And even that one weird time when my uterus ruptured during my third and final cesearean section.

All weird. All seemingly unrelated and yet now I was being told that they were all related and all could be easily explained by EDS.

It was a shock. And it was strange and scary. And at that time, I knew no one with the same condition as me. Trying to explain it to people they would look at me like I had three heads. There’s been many times since my diagnosis where my own doctors have to google EDS as they don’t know what it is.

Finding others that have EDS has made my knowledge grow. Groups online have taught me so much about how to manage my condition on a day to day basis. The phrase “ knowledge is power” has never meant more to me than when I realised that I could prevent jaw dislocations by changing the way I eat. That a certain cushion could support me in my sleep and prevent a partial shoulder dislocation in my sleep… it really helped. It hasn’t solved the issues completely but it’s enabled me to have a small feeling of control over something that in the past I’d never had control over before.

So when my good friend’s child was faced with years of quite serious and debilitating illnesses, all seemingly unrelated, with numerous hospital stays and ongoing tests; I saw a familiar pattern emerge.

I recognised it all. Doctors were left scratching their heads over Ava’s medical problems until they finally diagnosed her with EDS at the young age of 8, and they then started to look at her little sister Bella and my friend. They were all diagnosed shortly after. And although it saddened me, it also filled me with hope that the medical profession was finally starting to think ‘zebras’ instead of ‘horses’ when presented with a child and her family with a series of medical problems. It also made me want to be able to help my friends and fellow zebras.

To help with giving them some power over their diagnosis, and to help make sense of it all.

When the Ehlers Danlos Society produced a book for children to help them deal with EDS, I just had to tell my friend. They explained it in such a lovely way and used the zebra and it’s beautiful rare stripes to bring a sense of pride and ownership over having a unique condition to life for children.

And so today, little Ava and her family, me and my children, and many other zebras will wear our stripes today.

And we hope that seeing our stripes will make you wonder and ask why the stripes? Why the zebra?

So that we can explain and spread awareness. And maybe that one day doctors and the medical profession will think differently and help diagnose us sooner.

Thank you to Beverley Smith for allowing me to tell part of your story.

Can We Talk About Periods? By Sarah Crook and Kelly Grehan

Recently we came across the picture above and loved it.  We talked about copying the wording and using it for an art exhibition on women we are involved with. We decided it was not suitable for a family audience, which got us thinking about why periods are such a taboo subject?

Why aren’t they freely discussed?

We remember our own mothers being shocked when sanitary towel adverts were first allowed on TV in the early 1990s.

In fact in 1993 an advert featuring Claire Raynor for Vespre Sanitary towels was banned following 700 complaints that concerned matters such offence being taken ‘about the format in which lots of women talk freely and easily in their own words about the product.’

Comments included things like ‘I didn’t know where to look when it came on and my husband was sitting beside me.’

The complaints led to sanitary adverts being banned between 4pm and 9pm.

More recently the advert above was banned on the New York subway because of the language used.

The first-time menstrual blood was depicted as red in an advert (as opposed to as blue) was in October 2017!

Why does the mention of periods remain a taboo?

Why does a perfectly natural process, one which without which we wouldn’t exist, still cause embarrassment and shame?

Does ‘discomfort’ come from ancient beliefs that menstruation is dirty?

This belief continued in numerous cultures and religions and was one reason why women were deemed unfit to hold positions such as priests.

The Old Testament makes numerous references to bleeding women being unclean (see here http://www.womenpriests.org/traditio/unclean.asp)

Given that they are experienced by half the population, women are likely to bleed for between 2,250 to 3,000-plus days across their lifetimes and a quarter of women of reproductive age are menstruating at any one time – So why are periods still such a taboo?

From the time we start menstruating; girls are taught that periods are something to keep a secret and that sanitary towels are to be kept hidden.

Research has found that women go to lengths to hide their period — from concealing tampons and pads at the bottom of their shopping basket, to putting a used pad in their handbag when there is no bin in a bathroom.

We recall trying to work out the least conspicuous way to go to the toilet at work with a tampon, is it to take our whole bag, hide it up our sleeve or squeeze it tightly in our fist and hope no one sees?

Some women experience their first period as young as 8 years old now. Feelings of shame or embarrassment at a completely natural process are reinforced before they even hit being a teenager.

If it’s not openly discussed and spoken about honestly by all in society then how are we supposed to allay their fears and feelings of shame?

Only when periods are openly and honestly discussed in the media, at home and at schools can we set about change.

Education for all that enables women to feel empowered and comfortable by the natural processes of their bodies is needed.

We have both started using moon cups and it is astonishing how many women view them as a “bit disgusting!”

Of course, this stigma continues into other female associated words, with most women terrified to use the word vagina, often using euphemisms like ‘mini’ or ‘nunny.’

Very rarely do we hear the word vagina used in conversation or the media.

We would guess this avoidance to talk about our own bodies leads to the gynecological cancers being often undiagnosed until it is too late.  

Women suffering in silence or too scared to speak to doctors with health issues related to vaginas. We don’t tend to have nicknames for other parts of the body like arms and legs!

We believe stigma around menstruation is a form of misogyny. Negative taboos condition us to understand menstrual function as something to be hidden, something shameful.

This leads on to the issue of period poverty.

Anyone who has seen the film I, Daniel Blake will recall the harrowing scenes where Katie, played by Hayley Squires is driven to shoplifting sanitary towels, having been sanctioned by the benefit office and having found there were no sanitary products at the food bank.

Hayley Sims, ‘I Daniel Blake’

A recent survey of 14 to 21-year olds by Plan International found that 15% of girls have struggled to afford sanitary care at some point, with one in ten girls admitting to borrowing or improvising with sanitary products.

Shockingly, 7% of girls described using socks, newspaper or fabric to get through their period, in place of tampons or pads.

Plan International’s findings highlight that there are a significant number of girls in the UK whose daily lives are impacted by period poverty, both physically and emotionally, as taboo’s around menstruation are impacting girls’ self-esteem and sense of self-worth.

Scotland has taken a step forward to becoming the first country to outlaw period poverty as Labour plans to formally introduce the legislation at the Scottish Parliament.

Monica Lennon’s member’s Bill has won the backing of each of the five parties at Holyrood, giving her the right to press forward.

Her proposed Sanitary Products (Free Provision) (Scotland) Bill would create a statutory duty for free provision of sanitary products.

We recently started running a Red Box Project in Dartford (https://www.facebook.com/RedBoxProjectDartford/).

This is a project where women set up drop off points for sanitary products and then give them to schools to give to girls in need.

All the effects of poverty are cruel, of course, but there is something particularly desperate about a girl trying to learn whilst worrying about bleeding through her school uniform, feeling unclean all day and the dreadful impact this has on a girl’s self-esteem.

The fact that periods are treated by taboo by many will reinforce those feelings for that girl.

The response we have had from the community has been fantastic, although we have received criticism, including one woman calling us ‘pseudo feminists’ trying to solve ‘a non-existent problem’ and ‘favouring women over men.’

Of course, this just spurred us on, but it showed the disdain some people hold those unable to afford sanitary products in.

We believe girls, dealing with the misery that puberty almost inevitably brings, as well as all the stresses of school, friendships and modern adolescents, should be spared the embarrassment of period poverty.

We hope our Red Box Project makes some difference.

Mental Health And Me By Lucy Robinson

At 17 I moved out of home. Within a year, my Dad & Step Mum who I previously lived with emigrated to Canada. My Mum lived in Wales. I was alone in London, with the world at my feet. I was ready.

…Or so I thought.

I bought a flat at 18, working in building maintenance. At 21 I fell pregnant; not ideal, unemployment and repossession ensued with me ending up – after lengthy process – in a Housing Association flat.

I refused to become a statistic of another single Mum on benefits.

Then in 1997 Labour got in to government – there was hope!

At this point I decided my career had to work for me. I went from working on a help desk in 1999 to managing engineers, to managing contracts. I did day release university and got qualified.

I started to manage bigger contracts, better contracts, profit margins increasing.

I was bold, brave and very good at my job.

In 10 years I went from part-time admin earning £10k to Projects Director in a multi-million pound engineering company, commanding a salary of £80k a year, managing literally hundreds of people.

I was now married with 3 children aged 13, 4 & 3. My stress levels were through the roof: I was being bullied at work (which most who knew couldn’t fathom) and my soul mate was dying of cancer.

It was a rollercoaster.

My soul mate died, work paid me off in a compromise agreement and then, just as I couldn’t get lower, my husband left.

It’s OK. I’m the breadwinner, I have child care, a cleaner, money… I can do this… NO.

No you can’t, not without a support network, which I didn’t have, I had opted for a career.

I was about to learn the hardest lesson.

I CAN’T DO IT ALL!

I lost 4 stone in as many weeks and never slept, apparently.

I have no recollection of 2011/12.

I still went to work every day, my kids were fed and clothed and attended school – in no small part thanks to my long-suffering teenager.

No one knew.

I saw not a cloud move, not a raindrop fall, didn’t taste or feel anything at all in this time.

I didn’t hear my children laugh or cry and from what I understand behind closed doors I was a vile ball of negativity and bitterness. I’ve no idea how my three beautiful babies coped while all I knew was blackness.

I sold my house, my beloved BMW convertible and got divorced. I started to regain what was missing and came to discover I was moving home.

I moved to Kent, I can’t quite tell you why; I do know rent was cheaper and I was born there which I assume took me back.

The moment I moved I could start to feel the ground under my feet (literally).

I saw I had an old ford Mondeo, my teenager was occupied as much as possible and we should all understand why, I saw my younger children cower from me and I was in so much physical pain it was hard to think.

I couldn’t fathom it… what was happening?

My hands didn’t work properly, I was physically sick most days and getting my children to school was a task. I had to have 4 operations: one on each wrist, one on my bladder and one on my throat. I had also gained a hiatus hernia and degenerative disc disease in my spine, not to mention the complex neurological disorder (nerve problems)…

But I’m bold and brave and very good at my job, I’m respected and established how could this happen?

My Doctor was incredible. I arrived gripping onto his desk, shaking, crying, scared and justifying that I was an intelligent, capable human being but I just needed help.

Please help me.

He did.

I went on antidepressants and got to know my children again. Did I mention autism? Yes we are an autism friendly family; not helpful if your Mum is having serious mental health issues.

I tried to go back to work, similar level but local on £60k. I couldn’t hack the pace, people were getting the better of me.

Tried again, still local but less responsibility on £40k.

I can’t EVEN do that.

It’s now 2015 I’ve moved twice and I am just going to have to finally admit I have mental health issues.

My spine is deteriorating, my children are not getting to school on time, my landlord might find out I’m not working and the school might find out I’m not coping.

Depression, anxiety, zero self-esteem and no support network… I’ve got to do this.

The school get involved, leading to a family conference with my family (now in Wales), my ex-husband’s family and my MENTAL HEALTH social worker, with me begging for help.

How does a bold brave person end up crawling so low. I’ll tell you…

By not taking care of the one organ which is bigger than you… your brain!

My landlord did find out I wasn’t working. I was still paying my £1145 a month rent in full but no, he wanted me out.

November 2015; 5 days before my youngest’s 9th birthday my three children and I were evicted, literally on the street. No temporary accommodation available locally, one North London and one in Harlow.

I emptied my home into a van and a garage I had rented. I find different places for all of us to stay.

Only two nights but two scary, lonely long nights.

I get a call. Erith. That’s somewhere I’ve heard of.

Another move but this time it means I’m in the system that offers help. A year later my family are offered a twee little 3 bed council house in the cutest of roads, garden, a downstairs bathroom to accommodate my disability.

I honestly couldn’t have been more grateful and slowly we start to heal.

So here I am in 2018, nearly another decade on from earning £80k with my BMW and two decades from refusing to be a single mum on benefits…

I AM a single Mum, on benefits with a disability to boot.

Would I have been better off with no career?

No, I loved almost every second of it.

Would I have stayed married?

No, I needed support.

Will I actively encourage people to look after their mental health?

EVERY SINGLE DAY!

I’m lucky. I am 43, once again with the world at my feet… it’s a blank canvas… now what is it I want to do?

By Lucy Robinson

A Desperate Plea From A Relative Of A Rough Sleeper By The Masked Avenger Anonymous

We have all walked past a rough sleeper on the street. Sometimes we give it a second thought. Sometimes we stop and chat, maybe even try to help.

But mostly we walk on by.

Most of us are fortunate enough to have never been there and while we sympathise, we often try and forget it and move on with our busy lives. Rushing to get somewhere; an appointment or some such.

We often don’t see the person beyond the sleeping bag. Sometimes it is very hard to imagine how someone got there. The government dehumanise rough sleepers. They advise us not to feed them as though they are pigeons in Trafalgar Square. They put spikes on floors to stop them being able to get some shelter in a shop doorway. Again treated like pests. So it’s no wonder that we walk on by. Sometimes it is a taboo subject.

But for me it is different. I happen to know a rough sleeper very personally.

You might want to ask me a few questions. Does anyone help him? Is he loved? Do you help him? The answer is yes. To all of the above.

But our help is not enough and the ‘why’ and the ‘how’ he gets into this position is what is complex.

My uncle has undiagnosed mental health conditions. He is an addict. Self medicating I guess. He has never had the support he needed from the professionals. And this is the product of years of neglect.

Born in the 60s to parents with severe mental health issues that lost everything down to gambling, my uncle was not diagnosed with anything himself or supported. Instead when the family broke down, my grandmother had a mental breakdown and no one was there to help. The authorities left my grandmother to it and just took my uncle away into care when he was 7. And that was the start of it. In and out of care. In and out of trouble.

” A handful, naughty, out of control, the mother can’t cope”

While he was in the place that was supposed to care for him, he was abused.

He went in as a child with problems and came out disturbed with even bigger problems.

No one knew what happened at the time. This is only a recent revelation. So he continued. In and out of trouble causing merry hell for the family.

As he got to adulthood he started to ‘self medicate’ and slowly but surely became an addict. Which led to petty crime, prison. And eventually being institutionalised .

“A write off'”

On paper yes. But what no one else saw was the snippets of the man he could have been if the support had been there during his childhood.

Detained at Her Majesty’s pleasure, he had structure, routines and he flourished. He took courses and passed them all. He read and learned and became a talented writer.

He did endless courses and took all of the opportunities he could. He grabbed them with both hands.So when he went back into the outside world he started his own business, he even wrote for a national newspaper as a regular columnist. He became a published author. Some semblance of a normal life was finally coming his way.

He was capable and intelligent and we could see the person he could become if he’d been given more support as a youngster.

But things happened and again the support fell away. Without the guidance of a probation officer, without the structure, his mental health problems that simmered under the surface reared their ugly, scathing, self destructing head again.

Addiction came back with a vengeance and along came some new ones too.

So we saw him slip back. He lost everything and again he went on the slippery slope into the abyss of addiction and self destruct.

So, we try to help as a family, but its not possible to keep an eye on him 24/7.

The downward spiral was and is fast and relentless;he loses touch of where he is and he ends up on the street. He loses contact with any kind of support network and before you know it he is sleeping rough.

We can’t track him. We don’t know where he is.

We’ve had phone calls in the past from wonderful passer bys that have tried to help him. In his moments of lucidity he remembers a number of a random relative and some very nice person decides to help him and calls.

We then hear he’s been in various places begging as he has lost everything. So we get there and we have to try and get him some help. He’s unwell and doesn’t know where he is. The police come and tell us not to bother with A and E as they are overcrowded but that they will try to help him.

Do you notice that even though I’m describing events in the past that I am using present tense? Why you might ask?

Because this is a recurring event. This happened last month but it could happen tomorrow, next week, next month. We never know what will happen next. This is the pattern that happens over and over again.

Services that are cut to shreds still try their best to help him. There are genuinely good mental health staff, hospital staff, police officers and key workers out there.

But it’s not enough.

The services need to be joined up. They need more funding to give him the intensive therapy and support for his mental health needs as this is the root to all of his problems, I believe.

But all that happens is the problem is treated that day. Acute support is given while he is physically unwell. But there is not enough in place to prevent this from happening again.

So I sit here and wonder what people must think when they walk past him. When he ends up on the street, bounding in and out of shops, trying to get someone to help him.

They will never see the man he can be. The man he has been, the man he could have been.

Every person has a story, but homeless people are nothing more than pests to the Tories.

If we followed the advice that they give us, which is to ignore a homeless person, don’t give them money or food; if every passer by that has helped my uncle thus far listened to this advice that this ‘government’ dish out my uncle would be dead by now. Perhaps that’s what they want. By treating homeless people like pests perhaps they think they will just die off.

But instead there are good people out there, people try to help. And for now he and we are riding our luck. That might just change one day. And we dread phone calls sometimes. What will happen next we just don’t know.

So I want to say to the people that help, the doctors, the nurses, the passers by, the staff in Pret that give out food, the key workers: Thank You!!!

Don’t ever change and maybe one day if we fight hard enough we will have a government that cares too so that real change can happen and people living in the streets being dehumanised by a callous government will be a thing of the past.

Isn’t It Time We Made Homes Fit For Human Habitation? By Kelly Grehan and Lisa Mulholland

The second reading of Karen Buck MP’s Homes (Fitness for Human Habitation and Liability for Housing Standards) Bill is on January 19th 2018.

We can hardly believe that, in the 6th richest country in the world, in 2018 it is necessary for such a bill to be raised.  

It is astonishing that such a protection is not already in existence for tenants. Tenants have no avenue for redress or means of compelling landlords to make repairs or even secure the safety of the property.

The Bill would empower tenants by giving them the right to take their landlord to court if they fail to take action to resolve a problem.

There are currently around one million rented homes with hazards that pose a serious risk to health and safety. This affects over 2.5 million people.

You might think that this lapse in the law is an oversight that just needs to be rectified. But you would be mistaken.

A version of the Bill was first introduced by Karen Buck in 2015 and was ‘talked out’. A version of the Bill was also proposed as an amendment to the Housing and Planning Act 2016 and was voted down by the government. Including the 87 Tory MPs who are landlords.  Their argument was that such legislation would burden upon landlords and discourage people from renting out homes.

How did we get in the situation we are in today, one might ask.

Many years of under funding and de regulation of the housing market we could argue.

What could be a greater burden for any person than trying to live in a ‘home’ unfit for human habitation, you might wonder.

Data from the English Housing Survey 2017 found that Almost a third (29 per cent) of homes rented from private landlords fail to meet the national Decent Homes Standard; meaning they either contain safety hazards or do not have acceptable kitchen and bathroom facilities or adequate heating

Poor housing impacts on children by making them 25% more at risk of ill health or disability, including raised risk of meningitis or asthma and a greater chance of mental health issues.

They are also more likely to miss school through illness.  Almost one million privately rented homes are deemed to be in a state of “substantial disrepair”, while 442,000 have damp in one of more rooms.

Poor housing also places a greater burden on other services and affects society as a whole, not just children.

Substantially more working age adults living in bad housing report fair, bad or very bad general health (26%) than those living in good housing (17%), with adults in bad housing 26% more likely to report low mental health compared with those living in good housing.

Those living in bad housing are almost twice as likely to have their sleep disturbed by respiratory problems at least once a month.

The association between living in bad housing and health problems is particularly acute among those above retirement age; with Pensioners in bad housing a third more likely to have fair, bad or very bad health compared with those in good housing (58% vs 38%).

Almost a fifth (19%) suffer from low mental health compared with 11% in good housing.

Almost twice as many pensioners living in bad housing suffer from wheezing in the absence of a cold, compared with those in good housing.

Not only is this unacceptable and immoral in this day and age but it also undoubtedly places more burden on the cash strapped NHS, including mental health services and schools that are already under so much pressure.

So what can we do about this?

We welcome the second reading of the bill and hope that this can proceed to the next stage. MPs will have a vote on this issue and we the people can apply pressure on our local MPs to vote the right way.

You can find who your local MP is and and how to contact them by clicking on the link below.

http://www.ukpolitical.info/YouandyourMP.htm

The above is taken from Natcen’s 2013 report on People in bad housing.

Happiness: A Basic Human Right? Not According To The Tories By Eddie Luigi

By Eddie Luigi 

Let me make this clear from the start. Generally I am happy and content. 

I view happiness as a three legged stool, with happiness as the seat and the three legs of home, health and an honest wage for an honest job.
Any of you who have studied psychology will be aware of Maslow and his hierarchy of needs. 

Which in a nutshell means until you have achieved the basic needs you cannot go on to achieve any of the more humanistic needs. 

The basic needs at the bottom of the hierarchy are food, water, warmth, rest security and safety. Without these essentials it is impossible to proceed up the hierarchy and achieve happiness and fulfil ones potential.

It’s like a game of ‘snakes and ladders’ sometimes you’re going up and sometimes you go down and have to start the climb again.

So, my view is that, until you have the basics of home, health and an honest wage, you can’t even begin to think about happiness. Then if one of those three legs of the stool is missing, happiness comes tumbling down.

But since the tories came to power in 2010, millions of people in England are struggling to gain the basic needs. Hard to believe but the figures do not lie:

4,134 sleeping rough ( up 134% since tories got in 2010) in England.
Almost 1.2 million needed emergency three day food parcels.

250,000 as registered homeless in England.

Around 4 million private renting in England. Most of these will have yearly or month to month contracts, with no basic security. 

That is a lot of people that can’t reach a happy state, or fulfil their potential.

Many self help books advise you to simplify and find happiness in the little everyday things.
This does not seem good advice if you have no home and your day is taken up by wondering where you can sleep safely tonight. 

Nor does it help if your physical or mental health means that your day is taken up wondering if you can be cured, or taken up trying to overcome the splinter in your mind that feeds the self doubts about your looks, your weight, your usefulness or your worth. 

That advice must surely be ignored if after you honest day’s work your ‘honest’ day’s wage, topped up by social welfare, is still not enough to meet your budgetary needs for housing, feeding and clothing your family.

I fear that in our current political situation not everyone will have the three stool legs necessary to think about happiness.

For more articles like this please check out our Facebook page:

https://m.facebook.com/theavengeruk/

World Mental Health Day And Why It Is Important By Lisa Mulholland

By Lisa Mulholland 

Today marks World Mental Health Day 2017.

Here at The Avenger UK we would like to mark this day for a number of reasons. As many of our readers will know we cover many topics but mental health seems to be the most popular of our posts.

And there is a reason for that…

One in four of us adults will suffer from mental health issues in our life time yet mental health still remains somewhat of a taboo and with that comes stigma.

Many of us that struggle with mental health not only have to struggle with the difficulties that the various conditions brings, but we also have to face a society that doesn’t understand and a mental health care service that is significantly underfunded. 

So much work needs to be done to raise awareness of mental health and how mental wellbeing underpins a happy and productive nation. 

Something that this government seems to have forgotten. 

Hellbent on cutbacks, they have missed the point that when mental health and wellbeing is a priority in our society (with proper treatment and understanding for those that suffer from ill mental health) that a happier nation is actually more productive and costs less to the taxpayer in the long run. Developing a different approach at the outset can prevent so many future problems.

Mental health needs to be addressed in every aspect of social and public policy.

Children need the freedom to be children. 

Pressure for milestones to be met and constant tick boxes start the day the child is born and sets the tone for a lifetime of scrutiny. As parents we worry about raising children that have mental health issues.

In school children are constantly assessed and now even take tests at the age of 6. Squeezing productivity from very young children , categorising them, setting them apart from each other; it can only lead to unhappiness and disenchantment from children’s natural love of learning.

And so this continues; all throughout childhood. 

On the one hand the government push pressure for children to perform better and on the other hand, the ever increasing number of children with mental health issues is rising. If you combine this with a severely underfunded system that spends between £35 and £70 per head on children’s mental health in England and you have a crisis on your hands not to mention a timebomb in the future.

The reality of having a child that cannot access mental health services can be devastating.

These children with untreated mental health grow into adults. 

We have all heard about the mental health bed crisis. We have our own Masked Avenger stories from both acute mental health service users and mental health workers all saying the same thing; 

More funding and understanding is needed!! 

So there is a lot of work to be done and Rome wasn’t built in a day. But the first step is awareness. 

And that is what World Mental Health Day is all about.

So today we want to raise awareness. Not only of what what it is to suffer from mental illness and the struggles that come with it, but also we want to raise awareness of the creativity and intelligence that people with mental health possess.

We want to celebrate the neurodiversity and showcase art and poems of people with mental health issues.

And this is why we created our World Mental Health Day special collaboration of art, poetry and commentary. 

Please take a look and enjoy a varied approach to raising mental health awareness by clicking here:

https://theavengeruk.com/2017/10/09/a-collaboration-of-poetry-and-art-expressing-mental-health-by-various-writers/

Please show your support by reading, liking and sharing our mental health posts today.

And maybe one day we can all work to a more tolerant, understanding and supportive society, where mental health and wellness is a priorty.

Thank you

Lisa Mulholland- Editor The Avenger UK

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If you would like to find out more about World Mental Health Day or get involved please visit :

https://www.mind.org.uk/get-involved/world-mental-health-day/

https://www.time-to-change.org.uk/

A Collaboration of Poetry and Art Expressing Mental Health By Various Writers

To mark World Mental Health Day 2017, we have produced a collaboration of poems, art and commentary from various writers and artists. We feel these contribute to raising awareness of what it feels like to have mental health issues.

It Really Is Okay-   A poem By Rosie Meyer

Two days ago I was taking big steps
That day I reached my goal

I was able to cover a lot of ground

And I felt in control

Two days ago my goal was achievable

And I had quite a bit of help

I was well prepared and I took my time

And I felt good about myself

Yesterday I stumbled and fell

And I was overwhelmed for the whole day

I tried to get ahead of myself

And made no progress along the way

Yesterday my goals were ridiculous

And I had no help at all

I expected far too much of myself

And it slowed me down to a crawl

Today I’m taking baby steps 

I’m just going with the flow

I’m making more progress than yesterday

But it’s going kind of slow

Today I haven’t set much for goals

Just one-to make it through the day

And even though I haven’t worked much

I still feel okay

Some days I’ll feel like I’m on top

I’ll feel tall and my steps will be long

Some days I’ll feel like I’m crawling

And I just need to be strong

Some days I’ll feel scattered

Unaware of where I’m going

And some days I’ll be inspired

With creativity and knowledge flowing

On the days I need to catch my breath

I need to realize, I can’t run all day, every day

And when I need to slow down a bit

It really is okay.

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Words by Rachael Lamb

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A Poem By Anonymous Writer 

That crushing feeling in my chest,

Never gives itself a rest.

Constant thoughts race through my mind,

Why can’t I relax, unwind?

Anxiety affects me every day,

Why won’t it just go away?

The panic, the feelings of despair,

Those irrational thoughts, they’re always there.

Why am I filled with so much dread?

I want these thoughts out of my head!

Such an awful feeling of unease,

Anxiety; just go away, please.

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Art by Caitlyn Johns

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A poem by an Anonymous Writer
Mental Illness 

No one understands or knows our pain, why do we feel like this again? 
We toss and turn, we can’t sleep at night, we always think of giving up the fight. 

Yes, the demon is certainly back, it makes us helplessly steer off track. 

We say and do things we don’t mean at all, sometimes we feel good but most times we fall.

That’s what feeling this way does, we always end up thinking ‘why is it us?’ 

But we’d never wish it upon anybody else, because depression is well and truly hell. 

This black cloud lingers above our head, we lie at night wishing we were dead. 

Lonely, scared and worthless too, negative things we think are true. 

Because depression feeds on our hopeless thoughts, it wraps us up until we are caught;

Among the hell we call our life, it sometimes makes us reach for the knife. 

So we can feel a release of pain, it’s the only thing that keeps us sane. 

It makes us feel we’re in control, makes us feel like we are whole. 

Other people think that we are mad, but they don’t know that we’re just sad. 

Until the day we start to grow stronger, we find our happiness is lasting longer. 

All we need is a little glimpse of hope, that will help make us realise that we can cope. 

Depression is an illness people hardly understand, so let’s get together and make a plan;

We need to make people more aware, so they can support us and just be there, 

To help us through our darkest days, as depression affects people in many ways. 

Young or old, boy or girl, anyone can be subject to this hell. 

So please help us get this message through; We’re normal people just like you.

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Art by Taylor ~ Sixth Circle Art

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Freedom To Be Me 

A poem by Lisa Mulholland 
I am the one who isn’t enough
And
I am the one who is too much

The one chastised for things I didn’t mean
So much so that now I have no self esteem

Always apologising, taking ownership
Of responsibilities that aren’t mine
Maybe it’s because it’s easier than being wrong all the time 

I stand a better chance of being liked
When my mask is on and I pretend to smile

But what about what others don’t see?
The tears and the turmoil 
The fear of being me

I cannot and will not prove everyone right 
So
I swallow my words and sit tight

I sit on my hands so no one can see 
That I pick my hands until they bleed.     Pulling the strands of my hair,                  surely that would make people stare?

That’s not acceptable in this day and age
Not the way a mother of three
Should behave 

So I put my mask on.                                          I push down the tears                                    And hope that no one notices;                        my long list of fears

No one can see,                                                 my cough helps disguise                                The bile rising from my throat,                     the stinging in my eyes

When someone looks at me with a frown
I just say “I’m tired”
And I smile                                                       And it works for now

It covers the terror, the panic
And the fear.                                                       Of all the things I can’t make sense of.             Or don’t want to hear

I don’t understand what their expressions mean
So I’ve learned to smile and look keen

And replay it all while I’m alone.                     All the bits I did wrong,                                        I hope it didn’t show

It’s too much sometimes
And I want to hide
I need to be better tomorrow.                         To work on my disguise

Right now my transformation
Is almost complete
From shy anxious girl.                                     To woman of the world

There are two me’s
The one you that you see 
And the other for those                            Unlucky enough to get close

Maybe one day 
I’ll fully be able
To transform myself                                        And in private be stable 

Tomorrow will be better
I tell myself each night
Tomorrow I will learn
How to get it all right

To calm those butter flies
To stop those skipped beats

Until next time
Until I am free
Free to be brave enough to be me

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Art by Taylor ~ Sixth Circle Art

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Life – A poem by Rachael Lamb
Life is tough 

The days the nights

The long darkness of my mind nothing can override

The days too are long but they are light nothing can erase the fright.

What do you do?
Where do you turn?

When you your living a lesson no one can learn.

You get up each day
Prepared to fight 

Prepared to battle

Prepared to win 

But all you want is peace

Is that such a sin?

You make others smile
But don’t own your own

For your smile is broken 

Its not coming home .

Who do you turn to?
Where do you go?

When you’re feeling so lonely and don’t feel at home.

Your body is whole

But your soul incomplete 

If only people could see

The invisible wounds on your feet ,

Your hands that are broken

From holding on tight

Because of the terrors 

Taking hold in the night.

Your eyes they smile

But behind your eyes

Are floods of tears 

That you cried in the night.

It takes time they say
To stop feeling this way

But when will it happen

Nobody knows what to say.

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Words by Rachael Lamb

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Commentary
 
Why Are You Tired?

By Rosie Meyer

Chances are, you know someone with a mental disorder or disability and you’ve probably asked them this or thought this before.

This statement, “I’m tired” is not a complaint or pessimistic.  It’s merely a fact of life.

Allow me to explain why a person who is constantly battling their own brain and societal expectations feel so drained.

These are people whose brains are stuck in overdrive and have a great amount of difficulty unwinding to fall asleep at night.  For the average person, it takes 7 minutes to fall asleep.

Imagine crawling into bed exhausted and it takes an average of an hour to fall asleep instead of 7 minutes.  Every nap and bathroom break and the brain relaxation delay begins again.

These are people whose sleep is frequently disturbed and who spend their nights tossing and turning instead of resting.  Sometimes they’re awoken by noises, pain, an inability to keep body parts still, by loud noises inside of their heads, vivid dreams and many other reasons.

These are people who wake up feeling, at best, slightly more rested than they were when they crawled into bed in the first place…like a battery that has been damaged that never seems to recharge properly.

These are people, who for decades, don’t feel rested after their slumber.

These are people who put an immense amount of effort into focusing on the task that they’re supposed to do or perform while their minds are trying to carry them down other paths or while they are struggling to remember just what those tasks are.

These are are people with working memory issues who from school age on into adulthood, lack the skill to remember multi-step instructions in a world where they’re just expected to know how to do it.

These are people who are in a constant war with their own brain.  People who are battling their own thoughts and fears; hearing every day from their brains that they aren’t good enough, strong enough, skinny enough, that people don’t like them, or that they should have done better…just to list a few things.

These are people who are in a constant war with other people’s judgement and lack of understanding.  

Who are often asked questions or who hear comments like “Why are you always tired?”, “Just suck it up and deal with it.”, “It’s just a lack of discipline.”, “It’s all in your head.”, “Stop being so pessimistic.” and “Stop being so lazy.”

These are people who experience sensory overload that mentally exhausts them.  From the clothing they are expected to wear, the food that they are expected to eat, the noise around them, the sights engulfing them and the odors surrounding them, these people’s senses are constantly under attack.

These are people who are exhausted from self-advocating to people who don’t understand and don’t care to understand.

These are people who spend most of every day dealing with fears that others find silly and irrational.  

It’s like living on a rope bridge swaying in the wind over a canyon while you’re afraid of heights and hearing “I don’t understand what you’re complaining about, the bridge is secure.  Suck it up and deal with it.  I can do it, so you can too.”

These are people who are struggling to communicate their experiences because communications is a skill that needs to be taught and exercised.  It’s like those who don’t have a strong artistic talent being instructed to create a sculpture using the items around you to present how they currently feel within the next five minutes.

These are people who expel a large amount of energy trying to understand body language and emotions which is another lagging skill.  It would be like showing you a picture of my cat and expecting you to identify what he’s feeling based on his facial expression and pose within minutes, multiple times a day.
How is this kitten feeling?

These are people who are tired from the side effects of medication or self-medicating to cope with the symptoms of their diagnosis and the expectations of society.

These are people who are struggling with their brain to differentiate what’s real and what’s not because their brains present everything to them as reality.

These are people who are likely to be struggling with relationships, drug abuse and alcoholism.

These are people who have physical manifestations from their mental struggles because being on high alert takes a physical toll on a person.

These are people whose muscles ache constantly or whose muscles are tired from being tense too often, who get frequent headaches or migraines, who’s appetite is affected and whose immune system becomes impaired…just to name a few things.

So please, dear readers, the next time someone with an invisible disability says that they’re tired, don’t treat them as if they’re lazy or irrational.  

Instead, imagine living your life on a rope bridge over a canyon, or imagine how you would feel if someone jabbed you and woke you up several times a night for just one year and the physical and mental impact it would have on you.

Is he about to attack?

I beg of you, on behalf of all of us fighting our own silent battles, please be patient and empathetic.  Just because you don’t experience it doesn’t mean that it’s not a reality for someone else.

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If you would like to know more about World Mental Health Day or get involved please visit:

https://www.mind.org.uk/get-involved/world-mental-health-day/

https://www.time-to-change.org.uk/
 

 



Family Life, Support and Judgement By Kelly Grehan

By Kelly Grehan

Yesterday I attended an event organised by Mums4Corbyn at The World Transformed.

It was clear that women have a lot to offer each other in terms of support. One issue that came up was that of breast feeding. The problem, in Britain at least is that the feeding of babies can often feel an issue of division rather than unification.  

The UK has the lowest rates of breastfeeding in the world. About 80% of women try breastfeeding at birth but by the end of the first week half have given up.  
Lots of new mums speak about feeling pressure to breastfeed and experiencing guilt about ‘failing.’ 
In recent decades a newer pressure has emerged, for babies to be in a sleeping and eating routine as quickly as possible and this is largely incompatible with breastfeeding and not good for milk production. Mothers are now experiencing a sense of failure if their children are not complying with this picture-perfect experience of motherhood.

To be clear if women chose not to breastfeed this is absolutely fine, what concerns me is a society that tells women to breastfeed, fails to support them to do so and then instills guilt into them for the failure.  

I’m passionate about more support and understanding for new mums, partly because of my own experience. My first child struggled to latch on, was losing weight, not sleeping. He is 10 now, but I’ve never forgotten the awful sense of failure that overtook me. It later transpired I had a tongue tie which made it hard for him to latch on. I fed half breast milk and half formula for four months, before giving up completely. Anytime I met anyone who talked of finding feeding easy or of having fed for long periods I felt jealous and the sense of disappointment hit me.  
Three years later my second one fed without any issues immediately after birth and I breastfed him for over a year. My previous guilt and anxiety about breastfeeding melted away.

What the experience of having two such polar opposite experiences of breastfeeding I have been able to observe the divisive nature many conversations about breastfeeding take, with it often causing conflict, defensiveness and separation between mothers. 

Then of course other issues start to take on the form of division and competition between mothers – weaning, childcare, controlled crying, discipline, clothing, diets, going back to work – discussions around all these things often feel like they end in judgement rather than support.

Is there something about our approach as a society that is unsupportive towards parenting and parents in general?

Well research confirms that if women receive support – whether it be from a friend or family member, a health professional, or volunteer breastfeeding supporter – they are likely to breastfeed for longer. 

Yet, Peer Support and Drop in sessions for breastfeeding services are being cut all over the country. 

In Kent where I live, the County Council was proposing to absorb the support into the health visiting service make a saving of £404,000 a year.

This week the consultation was suddenly halted until September so we await news of what will happen next. Sadly, I think we all know health visitors are too overstretched to offer the help needed.

It is a similar picture with other parenting issues. Up to 20% of women experiencing mental health problems in pregnancy or the first 12 months after birth. A Mental Health Alliance study in 2014 report found significant gaps in the detection of mental health problems in the period before and after birth, only an estimated 40% are diagnosed, with just 3% of women experiencing a full recovery. 

Costs of perinatal mental illness in the UK are estimated at £8.1bn per year, or almost £10,000 per birth. Yet fewer than 15% of areas provide effective specialist perinatal services for women with severe or complex conditions, and almost half provide no service at all.
Sure Start appeared to be making some progress with a culture change, but more than 350 Sure Start children’s centres have closed in England since 2010, with only eight new centres opening over that period. Spending on the centres in the 2015-16 financial year was 47% less in real terms than in 2010.

Childcare remains a deeply expensive and stressful thing for many parents, as work and money compete with family pressures compete, causing terrible stress and anxiety for parents. 

There is nothing I can find to indicate any progress has been made in aiding parents with this.  

It seems that family life, feels very unsupported in this country. Judgement and pressure reign and support is hard to access and what is available is diminishing.

I think this culture is damaging family life and impacting upon the happiness of parents, children and everyone else. 

 The lack of support undoubtedly impacts on emotional well being across the board. We need better services, but we also need to look at our attitudes towards each other and to create more supportive dialogues and attitudes. 
For more articles like this please visit our Facebook page

https://m.facebook.com/theavengeruk/

No-one Today Should Be Caring Alone By Miriam Gwynne

By Miriam Gwynne

Middle aged man, commuting by train
Thoughts turn to his sister he left crying in pain
He’s off to a meeting, while she struggles at home
Both of them left to face it alone

Teenage mum struggling, pushing a chair
The child is yelling, people just stare
She is begging for help as she picks up the phone
She cares for her child, but does it alone

The couple at the cafe, sharing their tea
One of them lost yet no-one can see
He lives in the past, a mind not his own
Forgetting her name, they both grieve alone

The parents of a child, who may never walk
They sing to a baby who still can not talk
Kissing a hand, though it’s all skin and bone
Everyday precious, weeping alone

Little eight year old, should be out to play
Instead she is feeding her dad everyday
Doing his care as the nurses have shown
With no one to tell her she isn’t alone

The next door neighbour, bringing some meals
Staying and listening to ask how she feels
Filling out forms while letting her moan
Determined his friend should not feel alone

The father sitting at the hospital bed
Digesting the words that the doctor just said
A new diagnosis, his mind has been thrown
Needing support so he isn’t alone

So many people with stories to tell
Caring for others, and doing it well
Yet they all need support, to know they are not on their own
Because no-one today should be caring alone