My story: Lisa

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Narcolepsy is a rare long-term brain disorder that causes a person to suddenly fall asleep at inappropriate times. The brain is unable to regulate sleeping and waking patterns normally, which can result in excessive daytime sleeping, sleep attacks, cataplexy, sleep paralysis and excessive dreaming and walking in the night. This is my condition and while it doesn’t cause serious or long-term physical health problems, it can have a significant impact on daily life and be difficult to cope with emotionally.

One of my first memories of the condition was when I was twelve years old. I had opened my eyes, only to see my teacher looming over me: “Is there something you would like to tell me?” she asked. I had just overcome a sleep attack, and I had no clue where I was or why everyone was staring at me. I burst into tears, and my mother had to explain to the teacher that I was neither lazy nor drugged - I was sleepy. 

This was just one of many symptoms, which my friends learned to recognise. During laughter, my knees weakened, my head would drop and my speech slurred. An exceptionally funny joke could send me into a motionless state of paralysis on the floor for up to a minute. Friends were often amused but also alarmed by this, and they learned to catch me before the fall. 

At night, I was restless - haunted by vivid nightmares and physically paralysed for what felt like hours on end. Terrors visited me during the day as I retreated to the school toilets to sleep, leaving me confused and frightened. Reading, which is my favourite thing in the world, became a frustrating, demanding experience, and I frequently fell asleep during stressful exams. 

Teachers acknowledged my situation, but since my grades were fine, they didn’t see the need for support. Some doctors suspected that I was depressed, but the diagnosis wasn’t right. I tried alternative diets, acupuncture, meditation and every possible variation of a healthy lifestyle. Eventually, everyone came to the same conclusion: the sleepiness was just a phase - it would all go away after puberty. 

But it didn’t.

It wasn’t until I was preparing for an exam about mental health, I stumbled across sleep disorders in a search engine. As I dug deeper into the digital archives, I discovered abstracts that perfectly addressed my specific symptoms. I eventually gained the confidence to attend a sleep clinic where I completed two tests - the polysomnogram (PSG) and the multiple sleep latency test (MSLT). I was diagnosed with type 1 narcolepsy with cataplexy.

I don’t think anyone likes labels or being put in a box, but, personally, I found the diagnosis to be an enormous relief. I consider myself to be very lucky to still be able to live a relatively normal life, and I am well aware that many others do not have this luxury. As I now engage openly with people around me, narcolepsy has become a channel for empathy, conversation, and constant learning. Most importantly, I have gained one great source of strength; knowing that I am not alone.

A final anecdote to prove this point; I still retreat to a shower room to sleep during a working day. It’s neither comfortable nor glamorous. I have recently learned that I am not the only one who has to resort to this cold, cramped room. This room also functions as a safe spot for breastfeeding, praying, taking medication and meditating. 

Perhaps it’s time for us all to give each other a little more space.

Guest Post: You have unlimited potential - own it!

Credit: CHAMPS Academy 

Credit: CHAMPS Academy 

Exams are now upon people across the UK, so we've invited Annette Du Bois, teen confidence and mental health expert, to provide some hint and tips to help us through this stressful time. 

The word most dread at this time of year is probably ‘Exams’. It’s amazing how just a simple word read aloud or repeated in your head can bring up such a mix of emotions including fear, anxiety and, at times, physical illness.

However, it’s not the word that causes you to feel like that, but the meaning behind it and associated emotions which creates these mind-based issues. Our mind is incredibly powerful, more so than many of us realise. But when used incorrectly it works against us, altering our perspective, which amplifies things to appear bigger, scarier or worse than they really are.

I call it the disproportionate dilemma!

Here’s your opportunity to get your mind working for you, to finally take control of the nerves and associate ‘that word… EXAM’ to the wonderful next step in your life. A new journey, a key to achievement. Because we are all unlimited potential, so let’s unlock yours…

Focus On What You Want

Our mind, body, and emotions are so closely connected, what we think about, comes about. In other words, we get what we focus on. When challenges occur, or pressures build (especially prior to and during exams) we end up focusing on all the things we don’t want, pulling negativity towards us and becoming utterly un-resourceful in the process.

Action: Become aware of your inner voice; what is it really saying? Recognise the language patterns. Then choose to focus on what you want. See what begins to happen when you make a conscious choice and things begin to get done.

Find The Gap

When revising for exams the mind becomes quickly full, thinking about the whole subject, all the books, and notes that need to be remembered, all at once. This creates the overwhelming, unhelpful stress and tightens the brain’s ability to think clearly. Your mind becomes turbulent, shutting-off creative flow and concentration which quickly leads to a distorted perception of the situation.

It’s not the amount of revision (although this is crucial and required of course), or even last-minute cramming that will help you retrieve the information when required. It’s the ability to relax your mind and allow your thoughts to flow for clear thinking and resourceful action. 

Action: Find a quiet place, and if safe to do so, close your eyes for a few moments. Focus on your breath, breathing deep into your belly and making a conscious decision to relax. If it helps to choose a word, place or phrase to focus on. Naturally, your mind will begin to relax and enter the gap in between your thoughts, stepping back from the situation or emotion (create distance). And therein holds the key unlocking your mind from the tight jaws of stress and overwhelm.

Mind Your Language

You are only limited by your communication and the self-talk you allow to fill your mind. As you’ve discovered, you get what you focus on and this also comes from how you communicate and what you say to yourself inside (self-talk). 

Whether it’s negative or positive, language becomes your reality and will either block or unlock your true potential. In times of stress and pressure such as exams, language can become more exaggerated, desperate and create beliefs based on that communication.

“I will never remember”, “Everyone’s going to do better than me”, “I always worry about…”, “No-one can help me”, “Everything is too much” “No-one understands” etc.

You get the picture. You may have used something similar or worse to describe how you feel, and how you describe your experience. Recognise your limiting pattern then get determined to change it to avoid falling into a never-ending downward spiral.

Action: Take charge of your communication and the language you use. Questions control how we feel, what we do and help build resourcefulness. The more resourceful we are the more resources appear. When stuck in a situation, challenge or emotion. Ask yourself bigger better questions:

  • What do I need?
  • Who can help me?
  • How can I change my feelings towards this?
  • What must happen for me to change this now?

***

  

Annette Du Bois is a leading teen confidence & mental health expert and runs CHAMPS Academy with her husband Ian Fox, the UK’s no1 confidence club.  CHAMPS Academy offers 1-2-1 and also group coaching sessions. http://champs-academy.co.uk/ 

  

My story: Natalie

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I was diagnosed with having cystic fibrosis at two weeks old. It's a genetic condition and so it's something that I have had to deal with throughout my life. Now, newborn babies are screened for cystic fibrosis with the heel prick test shortly after birth, but I was diagnosed because I had something called Meconium Ileus; a bowel blockage that required me to have surgery as a baby.

It's hard to explain to people on how the condition affects me as it's hard to know where to begin. 

There is no cure for cystic fibrosis. I have to go through hours of laborious treatments every day to try to prevent the rate of decline of my body. My condition affects my lungs, digestive system and other organs, making it a very complex condition with lots of challenging symptoms to deal with. 

These include: how the thick mucous in my lungs traps bacteria, which causes infection and inflammation, which scars my airways and makes me more susceptible to future infections and lung function decline; how the mucous in my digestive tract blocks the release of digestive enzymes from my pancreas so I have to take tablets every time that I eat in order to digest food and prevent malabsorption of vital nutrients; how I'm at risk of CF-related diabetes because of these issues with my pancreas; how I'm prone to heartburn that makes it feel as if my chest is being simultaneously burnt from the inside and crushed from the outside; how my digestive system and liver can be damaged from all of the medication that I have to take - I take around 40 tablets, including pharmaceutical medications and nutritional supplements every day. I have numerous inhalers and spend a lot of time inhaling therapies through a nebuliser. I have to do daily physiotherapy and exercise to keep my lungs clear and to maintain fitness. 

But really, each one of these physical manifestations of my condition affects me hugely on a mental level. CF is a condition that is hugely variable by the day or even the hour. One day I might cough a lot, the next I may not. One day I may be full of energy, the next morning I may turn my alarm off in my sleep. One day I may feel like an athlete, and a few hours later be uncomfortably bloated for no apparent reason. It's exhausting trying to identify the causes of these highs and lows, trying to predict them and trying to plan for them. 

I experience guilt almost daily. If I were to do all of my treatments, therapies, and exercises every day, it would easily take me 4 hours. I can't do that every day, so there's always a sense of compromise and the feeling that I could have done more, that I should do more, and that I could always do more, sometimes haunts me.

Then there's mental exhaustion from the logistical nightmare in my mind, trying to optimise my time, prioritise what treatments will be most beneficial or more realistic that day. There have been days in the past that I've ended up skipping treatments altogether because I'm so mentally exhausted from planning and re-planning every hour as my day unfolds that I feel like I've already done everything 100 times over! Every single meal time, I have to consciously think about what I will be eating and decide how many digestive enzymes I should take. After 27 years, it still feels like a guessing game.

And then, there are other sources of anxiety. 

People coughing near me. Are they contagious? Do they have CF, too? People with CF can't meet in person due to a high risk of cross-infection)?

Exercising is crucial for me to maintain my health. I train to stay alive. But what about exercising outside or taking a class in central London? Will the air pollution that I'm inhaling deeply be more detrimental than skipping my workout entirely? 

What about if I get unwell? Who will pay my rent if I'm unable to work? 

Spontaneity? What's that?

Lucky probably isn't the right word to describe my situation, but I have been fortunate, through a lot of hard work and sheer determination, to remain healthy for someone with cystic fibrosis. However, last year I did have to leave my full-time corporate marketing job to go freelance so that I could get some flexibility back into my life and feel able to focus on my health. I had known for a long time that a high-pressure office job with long hours wouldn't be sustainable for me long-term, and I quite liked the idea of a portfolio career, but I still kind of hated that I had to make a compromise. I wrote about my experience making this decision in my blog post, 'I quit my job to save my health'. 

Another big part why I'm so well today is not just due to my own hard work and determination but that of my family. My incredible parents and Nan put in so many hours when I was younger to keep me active and happy, to help me stick to my treatments, and to do hours of daily physiotherapy to keep my lungs clear. They'd be with me at hospital appointments, they'd chauffeur me around so that I could avoid germ-filled public transport where possible, and above all, they are always, always there when I need them - for a chat, a cuddle or mum's homemade chicken stew (a cure-all... almost!). Their unwavering support means the world to me and I absolutely cherish them. There are days when life can feel really lonely. Cystic fibrosis is a lot to deal with. But my family understand my condition better than almost anyone else in my life and knowing that they're always there for me helps me every day. 

Another thing that I'd like to add is that despite all of these daily struggles, having cystic fibrosis has made me the person that I am. Like everyone with cystic fibrosis, I dream of the day that there's a cure, but I wouldn't want to know a life without it.

It's given me determination, self-motivation, dedication, and strength, and given me an incredible perspective on life. I'm very good at taking joy in little things and expressing my gratitude. I understand the meaning of hard work. I train to keep alive and have learned to get comfortable with being uncomfortable. I seize opportunities but don't take stupid risks. I try to always be kind as you never know what someone may be going through; I know this better than anyone, living with an invisible condition. I'm insatiably curious; we have so much still to learn about our bodies and about the world around us. I've learned what it means to have confidence and courage. I love deeply, avoid conflict and never hold grudges. Life's to short to be anything but happy.

Natalie's blog is here: nataliejohanna.com

If you would like to learn more about Natalie's condition please visit: https://www.cysticfibrosis.org.uk/what-is-cystic-fibrosis

Former homeless team up with school to help pupils with invisible disabilities

Pupils from Lexdon in Emmaus Colchester workshop

Pupils from Lexdon in Emmaus Colchester workshop

Pupils from Lexden Springs School, Colchester, have created bespoke birdhouses with the help of formerly homeless people at Emmaus Colchester as part of an ongoing partnership between the local school and homelessness charity. 

The Emmaus Colchester upcycling team, which is made up of companions (formerly homeless people) currently being supported by the local charity, have met weekly with pupils from Lexden Springs for the past two years at the charity’s workshop on Arthur Street. The school specialises in supporting pupils aged 3 – 19 who have complex learning difficulties and those on the Autistic spectrum continuum. The ongoing partnership provides the pupils with the opportunity to learn the skills needed to upcycle and restore unused items and materials, as well as providing them with experience within a busy workshop environment.

Emmaus Colchester provides a home and meaningful work for up to 31 companions who have experienced homelessness and social exclusion, offering them an alternative route out of homelessness within a supportive environment. Companions volunteer full time while they are at Emmaus selling second-hand furniture and household goods at its two Emmaus charity shops on the High Street, an Emmaus Works shop on Osborne Street and a warehouse at Arthur Street.

Throughout the partnership, Emmaus companions and pupils from Lexdon Springs have upcycled cabinets to be donated to the school, created Christmas decorations for the Emmaus community house, and restored old chairs for the new Emmaus shop and café that will open this summer on Crouch Street, Colchester. The latest creations to come out of the partnership are the bespoke birdhouses, which will be sold in the Emmaus Works shop on Osbourne Street for £5. Customers will receive a hand-made thank you card from the Lexden Springs pupils with each birdhouse purchased, and all proceeds will be donated to Emmaus Colchester per Lexdon Springs request.

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Billy, one of the chief lead up-cyclers at Emmaus Colchester, has been coaching the pupils. He said: “We work with the pupils from Lexdon Springs every Tuesday, and each school term we give them a new project to work on that revolves around upcycling, painting, priming and using power tools. Each student has varying abilities, so it’s important that the rest of the upcycling team and I make sure to supervise them in a way that suits them.

"It’s not just about the practical skills that they learn though – at first the kids arrived at the workshop slightly dubious, but throughout the term, I have seen their confidence grow, they are more trusting, and they take ownership of the workshop – it’s brilliant to see. When the students finished the birdhouses, I was so proud and pleased for them and I really do look forward to working with them every week.”

Nicky Peters, Post 16 Teacher at Lexden Springs said: “This partnership has exceeded all expectations and has benefited all the students in many ways, particularly in building up their trust and confidence at working alongside unfamiliar adults in a workplace environment. Staff have noticed a big improvement in the communication skills of the students and in their self-esteem, as they are tremendously proud of the work they do at Emmaus. It is a definite highlight of the week for both students and staff.”

Microsoft introduces its Adaptive Controller, praised by UK charities

Credit: Microsoft

Credit: Microsoft

A new Xbox and Windows 10 controller that lets people with disabilities plug in the assistive aids they already own to play games has been welcomed by charities in the UK.

The Xbox Adaptive Controller allows those with limited mobility to use their own buttons, joysticks and switches to mimic a standard controller, so they can play any video game. This allows them to choose which assistive aid will make the character jump, run or shoot, for example, without relying on pressing specific buttons on the controller that came with the Xbox.

The device has delighted charities and gamers with disabilities, who say it will help them continue to enjoy something they love as well as connect with other people and be more independent. 

There are around a billion people across the world with a disability, including 13.9 million people in the UK. Research from Muscular Dystrophy UK found that one-in-three gamers has been forced to stop playing videogames due to their disability.

Vivek Gohill has Duchenne Muscular Dystrophy, which causes muscle degeneration and weakness. He uses the Xbox Adaptive Controller and several switches and buttons around his body to play games. While playing Forza Horizon 3, for example, he uses a button next to his head to accelerate the on-screen car, while using a different one on his wheelchair to brake.

“I’ve lost a lot of ability, and definitely couldn’t play as much as when I was younger,” said the 27-year-old, who has given feedback to Microsoft after finding it difficult to hold traditional controllers and press the buttons. “When I had to stop playing the games I wanted to, it was very frustrating and upsetting, because that was one of my favourite pastimes. By using the switches I already have for my computer or phone, the Xbox Adaptive Controller lets me have the freedom to play the games that I want.”

Gohill is one of 700 people who form part of Muscular Dystrophy UK’s Trailblazers, who campaign to remove the social injustices that young people with disabilities face when trying to live independently.

Lauren West, manager of the Trailblazers, hopes Microsoft’s actions will encourage more companies to make accessibility a priority.

“The Xbox Adaptive Controller will give people with disabilities the belief that they can get back into gaming, and that companies are taking accessibility seriously,” the 26-year-old said.

“The problem with general controllers is they are designed for one particular person. People with Muscular Dystrophy will have very fluctuating conditions and what will work for one person won’t work for someone else – someone’s head might be strong but their hands are weak, for example – so having something that can adapt to that is perfect.

“A lot of our Trailblazers have switch controls at home for computers and tablets, and it’s great they can be used in this equipment. It’s easy to assume companies care but it’s nice to know they are working hard to bring accessibility to the forefront. I hope it will encourage other companies to follow suit and realise they need to do more.”

The Xbox Adaptive Controller will be available on the Microsoft Store later this year, priced at £74.99.

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Source: Microsoft

My story: Olivia

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I was diagnosed with type 1 diabetes in 1973 when I was a baby, which means I have lived with my condition for 45 years. My diabetes is an auto-immune disease, which means I used to need to inject insulin six times a day, every day. Now I use a pump and a continuous glucose monitor (CGM). This means I have around-the-clock insulin via a tiny pump - like the ones in hospital - and blood sugar readings via a sensor in my skin. Because of this, I have not needed an ambulance or used A&E. 

People can die from diabetes so things need to be kept in balance, which is heavy on mental health.

Then, five years ago I was diagnosed with multiple sclerosis (MS). This is another auto-immune, life-long condition that affects the central nervous system with different people experiencing different symptoms. My MS causes me to get tired if I have a busy day. For example, yesterday I met with a friend and we shared tea and chatted for hours, then I travelled home. Later, I fell asleep on the couch mid-afternoon. 

When I get ill like a cold or flu, my symptoms can increase so I can get more unbalanced. I don’t have night vision any more so need to switch the light on for activities like using the toilet in the middle of the night. My symptoms can also increase when I'm really stressed.

Both of these conditions have various medical effects on my body, which has resulted in me working part-time, so I can have a good work/life balance. They can also affect each other - if my blood sugar is too low or too high, I get more unbalanced. 

From a mental health perspective, it's been hard. As a young child, I was told my organs would start failing at 20 years old and that I would die by the age of 30. These were some of the views from the 1970s. I was also told I couldn't have children, get married or study at university. That is very frightening to grow up with. I've also had complications with my health - I have had 45 laser surgeries, I have nerve damage so I have to take pain medication, I have stage three kidney disease, and I've had a mini-stroke. 

There is also the aforementioned MS. These complications include fatigue, unbalance and memory loss when I'm tired. I have early stage relapsing-remitting MS so I also take medication three-days-a-week for life. The medicine feels like a bee-sting for about 30 minutes. I am also more prone to infections; I have had two bouts of septic shock and once had a cold that ended up as pneumonia. 

All of this can be tough to deal with.  I developed Dysthymia or persistent depressive disorder (PDD), which causes long-term low-level depression when I was a teenager. I had two bouts of diabulimia - an eating disorder that type one diabetics are prone to - that was also in my teens and late 20s. 

I have recovered now from that. My diabetes is in much better control and I eat normally. I decided to create a bucket list, which included traveling, studying at university, getting married and having two children. Right now, I work as an online psychotherapist - travelling distances means I can get fatigued - and to keep me at my best for work, I have adjusted how I work so my clients get me at my best. 

My support network has been amazing - my husband and children, my dad, NHS staff including diabetic doctors and DSN nurses... the list could go on. And all I things I was told I couldn't do, I can. I'm glad that diabetics are not told scary things like I was - they're just untrue.

Royalty of all kinds join together in minute-long Mental Health Awareness radio moment

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Their Royal Highnesses The Duke of Cambridge and Prince Harry along with stars from music, sport, stage, and screen have joined together for a minute-long message which was broadcast simultaneously by hundreds of UK radio stations at 10.59am today.

The message was voiced by Lady Gaga, Dame Judi Dench, David Harewood and Dame Jessica Ennis-Hill as well as special guests The Duke of Cambridge and Prince Harry, who are all lending their voice to raise awareness of mental health. The princes have already been vocal about their own mental health and are active in raising awareness.

In a historic first and reaching one of radio’s biggest ever collective audiences, the minute of simultaneous programming united stations all over the UK from national networks such as those run by Global, Bauer or Wireless, to smaller local stations and community stations, together with BBC Radio 1, Radio 2 and 5Live. 

The broadcast, which is designed to encourage more people to talk openly about their mental health, includes The Duke of Cambridge saying: "Just starting a conversation on mental health can make all the difference, when you talk about something you have less reason to fear it."

Prince Harry adds: "If you do have the courage to speak about it, you really can make things better."

Spearheaded by Radiocentre and Radio Academy and executed by content agency Somethin’ Else, the Mental Health Awareness minute, which has fallen in Mental Health Awareness Week, is supported by the Royal Foundation’s Heads Together which was launched to change the national conversation on mental health and tackle the stigma that prevents people from getting the help they need. The Royal Foundation is the principle philanthropic and charitable vehicle for The Duke and Duchess of Cambridge and Prince Harry. Ms. Meghan Markle will join the Foundation as the fourth Patron following in Royal Wedding on 19 May 2018.

My story: Tesni

Tesni on her wedding day

Tesni on her wedding day

As part of Mental Health Awareness Week, we're helping share the stories of people with mental health conditions and also people who have invisible disabilities who have seen an impact on their mental health. Today, we speak to Tesni, 33, from Wales about her story: 

"It all started when I was nine years' old; when I developed Fibromyalgia.

I wasn't able to keep up with the other children at school, I struggled walking home and I would fall asleep on my lunch box during my lunch break. Understandably, my mum was worried; I had gone from being a hyperactive child who spent all her time running around with animals on our smallholding to constantly being tired and in pain. She took me to our primary care doctor (GP) who would spend the next four years putting me through a barrage of tests trying to find out what was wrong with me.

It was at 13, I was sent to see a specialist for Myalgic Encephalomyelitis (also known as M.E). I was in the hospital for a week, on a 500-calorie-a-day diet. At the end of the week, he told me there was nothing wrong with me; I was fat and lazy. From then on, I was on a 1,000-calorie-a-day diet and pushed myself harder.

In my mind, everything was my fault - the tiredness and the pain - and I needed to pull myself together. Everyone else could do it, so why couldn't I? To this day, I still struggle with this mindset.

My GP, still convinced that I did have M.E, put me on anti-depressants. By this time, I was also struggling with anxiety and depression, but neither of those things had been discussed with me and I didn't know how to talk about them. After five months, my mum got a panicked phone call from our GP telling her to take me off the anti-depressants right away as they had been linked to suicide.

At 16, I was finally diagnosed with Fibromyalgia, but by this point, I wasn't listening to my GP. I didn't hear him carefully explaining to me what I had was not M.E, it would never go away and that I had to learn to manage it or it would slowly take more and more away from me. I was convinced that I could live my life like everyone else; I just needed to push harder. I still thought one day it would go away if I could just sort my head out. Around this time, I started to self-harm. At first, I did it for the release. Then I did it because I was angry and frustrated, and it was the only way I knew how to express myself.

At 18, I left home and got my first job, working in a mental health care home. I was so out of my depth and got horribly bullied there because I wasn't able to cope with the physical demands. A senior member of staff even took my then boyfriend, now husband, to one side and told him I was making it all up.

He said he had worked with people with M.E before and there was no way I had it and I was just saying it so I could get away with being lazy.

At 20, I became pregnant with my son and I couldn't cope. I didn't manage to quit smoking until I was four months pregnant. I got awful pre- and post-natal depression (PND) and couldn't bond with my son when he was born. I struggled on for two years like that until I had a conversation with a friend about her PND, which got me to finally go to my GP and I reluctantly tried anti-depressants again. Luckily this time they worked for me.

Slowly over the years, I've addressed the fact that I don't have M.E and that I have Fibromyalgia (despite being told by my GP that I should "just pick whichever title I want" as they were just "terms we use when we don't know whats wrong". I've finally accepted that it will never go away, and I've learned about my condition and how to cope with the pain.

Of course, I still struggle. There have been moments that have broken my heart. Like not being able to hold my son's hand because the pain in my hands was too much to bear. Having to accept that I couldn't have another child - my health had become so bad that I felt I couldn't give my son the attention he needed so it'd be unfair to have another. There have been times I've felt stripped of all dignity; having to apply for Disability Living Allowance and Personal Independence Payment; having to lay bare all the things I struggle to do and how dependent I am on others, so that someone can come and judge me to see if I score enough 'sick person points' to be given the benefit need to have any quality of life.

Being called lazy will always rip me apart inside. I'll always hide how much I hurt and how tired I am. But slowly I'm getting my head around the fact that it's not my fault and it's not because I'm weak."

If you've been affected by Tesni's story, please drop us a line using the contact us page. 

Mental Health Awareness Week to rejuvenate interest in developing medications

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This year’s Mental Health Awareness Week: 14th – 20th May, hosted by the Mental Health Foundation will focus on stress, one of a large spectrum of mental health disorders, with some of the most well-known being depression, schizophrenia, and bipolar disorder. 

The markets for mental health treatments are competitive and crowded with a multitude of approved therapies, many of which are available as inexpensive generics. Despite a large number of drugs on the market, key opinion leaders interviewed by GlobalData explained that they do not significantly differ from each other in terms of efficacy, but have a slightly different safety profile.

Maura Musciacco, MSc, Director of Neurology & Ophthalmology at GlobalData, a leading data and analytics company, commented: ‘‘Mental health issues can be severely debilitating, and can impact all aspects of a patient’s life, including health, education, employment, and social interactions. GlobalData’s primary research shows that the unmet needs for these indications are often over-lapping and a common denominator here is the need to find medications with improved efficacy and safety profiles.’’

Musciacco continued: ‘‘Due to the high number of side effects seen with all treatments, there is a large unmet need for efficacious drugs with an improved safety profile. This, in turn, would improve compliance and improve treatment rates. Furthermore, none of the marketed products for depression can demonstrate rapid antidepressant effects, and most of the products take weeks to show effectiveness. The need for fast-acting therapies is more pressing in patients with the severe form of the disease, who, in many cases, have to be hospitalised.’’

The development of drugs with enhanced safety profiles has been highlighted consistently as an unmet need for these mental health disorders. 

Schizophrenia

In the case of schizophrenia, the most notable side effect caused by current treatments are metabolic effects, such as weight gain and extrapyramidal symptoms (EPS), especially for typical (or first-generation) antipsychotics. Key opinion leaders (KOLs) in the industry explained that metabolic syndrome is the most challenging aspect when treating their schizophrenic patients. Other side effects of concern include drowsiness/sedation and decreased cognitive function, which can have major impacts on the patient’s quality of life.

Depression

Similarly, for depression, the available pharmacotherapies are associated with significant and often serious side effects and associated risks. Different antidepressants and adjunctive therapies have different safety profiles, and in general, the side-effect burden is high, with weight gain and sexual dysfunction being identified through GlobalData’s primary research as the most undesirable of these.

Bipolar

The bipolar disorder treatment algorithm typically involves treating patients long-term with one of the mood stabilizers, such as lithium. Safety concerns associated with these products vary; however, each product carries a risk of serious side effects. Lithium is considered to be the gold-standard maintenance treatment for bipolar disorder; however, it is associated with a plethora of safety concerns, including thyroid and parathyroid abnormalities, weight gain, and an increased risk for reduced urinary concentrating ability. In order to manage these concerns, a patient’s plasma concentration must be closely monitored; the development of side effects necessitates a reduction in dosage, which can significantly affect efficacy.

Musciacco added: ‘‘Opportunities exist for products that will meet the significant unmet needs in these markets. Products that have improved efficacy and safety profiles, will be viewed favorably and will have significant competitive advantages, which would enable them to potentially move to the forefront of the treatment line and gain significant market share in these increasingly crowded markets.’’

The Calm Room will be presenting stories direct from people who suffer from mental health conditions, as well as people who have found their invisible disabilities impact their mental health.

Phee Waterfield to chair Girls in Tech panel on 10th May 2018

Do you want to know what its like to lead or start your own tech company? Would you like to understand what experience is most relevant & where to get started? Perhaps you want to bring technology into the mental health industry but not sure how to do it?

Tonight, Phee Waterfield, freelance journalist and founder of The Calm Room, will be chairing a panel with three female CXOs to find out.

They will explain the rewards and challenges of leading your own company and their personal journeys. If you'd like to attend, you'll get to ask questions, hear advice about kickstarting your career, and connect with other like-minded people!

What is the Girls in Tech "tech spectrum" series about?

It's about giving you the opportunity to explore the different careers available in tech. Whether you are interested in getting into tech from a non-tech background, or you're in tech already and want to find out more about other roles, then this series will suit you!

For each session, Girls in Tech have invited professionals in the tech industry to share more about their roles, how they got into those positions and the challenges and rewards that their roles bring.

You can ask them questions directly and understand more about the tech ecosystem!

What is the Agenda for the 10th May?

  • 18:00 - 18:30 Registration
  • 18:30 - 18:45 Session intro
  • 18:45 - 19:45 CEO Career path panel
  • 19:45 - 20:30 Networking

Panelists

Saasha Celestial-One is the co-founder and COO of OLIO, a free app which harnesses the power of mobile technology and the sharing economy to provide a revolutionary new solution to the problem of food waste. OLIO does this by connecting neighbours with each other, and with local businesses so that surplus food can be shared, not thrown away.

Launched in the UK in January 2016 and made available globally in October 2016, OLIO now has 450,000 users, supported by 18,000 volunteers promoting OLIO in their local communities. Prior to founding OLIO, Saasha spent over 10 years in finance, strategy and business development roles at Morgan Stanley, McKinsey & American Express. Saasha has an MBA from Stanford, is a mother of a 5-year-old boy, and is the daughter of hippy entrepreneurs.

Sarah Hesz is the co-founder and COO of Mush The #1 local social network for making mum friends. Mush helps to solve the feeling of isolation experienced by mums; it is responsible for over 1M friendships and has recently been backed by Octopus Ventures. Sarah has a background in advertising and served as Deputy Managing Director to mcgarrybowen London for over 4 years.

Liliana Reasor is the founder and CEO of Suprafinthe first global vetted token platform on the blockchain. She is a FinTech/Blockchain entrepreneur, venture capitalist and ex-investment banker with 20+ years of experience in the FinTech and Finance industries.

Liliana is heavily involved in the FinTech / Blockchain startup ecosystem in Europe and is considered a FinTech / Blockchain thought leader. She is a regular FinTech / Blockchain speaker, panellist, investment judge and working group member at top global FinTech/Blockchain and finance events.

She was selected as one of the Top 100 Global FinTech Women Influencers and Leaders in 2015, 2016 and 2017 by Innovate Finance. Prior to becoming an entrepreneur, she worked in the FinTech and investment banking industries (M&A, trading, capital markets, and corporate lending) at JP Morgan, Bank of America, Deutsche Bank, Morgan Stanley, and Moody’s Analytics in the US and UK. Liliana has a MSc. in Computational Finance from Carnegie Mellon and an MBA from UCLA.

HRH The Countess of Wessex officially opens Sage House

Sage House.jpg

Yesterday, HRH The Countess of Wessex officially opened a new dementia support centre: Sage House. Accompanied by the Lord-Lieutenant of West Sussex and Mrs Susan Pyper, and was greeted at Sage House by Anthony Wickins, Dementia Support Chairman and Founder, and Sally Tabbner, Chief Executive; and the Chairmen of the West Sussex County Council and Chichester District Council.  

Her Royal Highness was shown around Sage House, by Sally Tabbner and Anthony Wickins, to see the various dementia support services and met with customers, carers, volunteers, members of staff, trustees, and key people involved in the project.

She also visited the Memory Assessment and Information Zone where she was talked through the memory assessment process and the tools used.  There was also a discussion about the Sage House Wayfinding Service, and the benefits of receiving good advice and emotional support throughout the dementia journey.  

The visit then moved on to the Care and Activities Zone where the charity provides dementia wellbeing sessions and day care.  Here, The Countess had the opportunity to speak to people living with dementia, and their families and carers, who were attending a dementia wellbeing session.  

To conclude her visit to Sage House, The Countess unveiled a commemorative plaque and she was presented with a posy of flowers by Edward Page (aged 9), Bella Page (aged 6) and Iris Randell (aged 12).  Siblings Edward and Bella live in Tangmere and both chose the name of the Café – Daisy’s Café, in honour of their great-grandmother Daisy, who had dementia. Iris’ submission: ‘Forget-Me-Not Lane’ has been used for a corridor in Sage House.

The Dementia Support Hub will welcome anyone who has a concern about memory loss, with or without a formal diagnosis.  For many, it is important to have a formal diagnosis and to know more about their specific circumstances and changes in their memory.  For those people, the Memory Assessment Service is where they can be assessed and formally diagnosed.

Dementia Support was set up in 2014 by Anthony Wickins, former Chairman of local hospice St Wilfrid’s, and Lucinda Langmead, after her father was diagnosed with dementia. 

We want to hear from you

For Mental Health Awareness Week 2018 (14-20 May), we will be featuring stories about people across the UK with invisible disabilities to help raise awareness and remove the stigma. Each day on the blog and our social media channels, we will be publishing first-hand viewpoints from followers and friends of The Calm Room, in the hope that it will inspire people to engage, offer support and encourage and discuss their own conditions.

We will also use this opportunity to launch our weekly newsletter, so keep a lookout for the subscriber link so you can keep up to date with everything Calm Room related. 

If you would like to feature on The Calm Room and tell your story, please contact us. If you have any questions about our other services, please don't hesitate to get in touch.

Why do we think our brain doesn’t get sick?

I was inspired to write this article following a LinkedIn connection sharing this post: Over two thirds of employees feel uncomfortable telling colleagues about taking a sick day for mental health reasons.

Even though mental health is across our news platforms, our social media and our non-media organisations (guess who I’m talking about…!), it still has a stigma.

I mean even the Royal Family is talking about mental health and we still don’t seem to get it… yet we all go nuts for the Royal Wedding.

It astounds me that we discredit mental health when it comes to sick days. I’ve heard it all: “She’s faking….”; “He’s lazy…”; “She’s just making it up…”; “Ugh, signed off with stress again…” The list goes on.

So I wanted to use this post to remind everyone of this: without the brain, we’d be dead. Morbid, I know, but it’s true.

Our heart might beat, or lungs might breathe, but without the brain we are not alive. There’s a reason we cannot do brain transplants yet (we probably will one day soon); it does everything. It’s like the control centre for our body; that’s why it’s called a ‘whole-body transplant.’

The brain works the hardest out of any organ in the body. So why do we only take days off for a cold or broken leg?

Do people assume that holidays are for that, you know, like we plan when our brain is going to be tired or sick? Can you imagine saying the below?

“Oooooo, I think I’m going to generate a panic disorder on the 23rd July… let me take some holiday…”

“Hmmmmmm, I reckon my OCD is going to flare up on the 25th April in 2018… best check that nobody has that week off already….”

“Oh my, Capricorn is going to be aligned with Virgo in 2020… that spells bad news for my bipolar disorder…”

OH MY GOD, NO!

So to anyone out there who’s worried about being perceived as weak (I’m with you, by the way), or condemed to “not being up to the job” or “can’t handle the pressure”, just remember that your brain does a lot of work outside of office hours.

So, let it have a break when it needs it.

Stop using the term ‘political correctness’

This morning, I was watching The Wright Stuff on Channel 5 and the following subject came up: “Is age a defence against making dodgy comments? If someone who is elderly makes the odd racist or sexist comment, should we let it go or have a go?”

I expected a healthy debate amongst the panel — not just about older people, but society as a whole. However, to my surprise, they were all in agreement that offending people, whether it’s intentional of not, should just be let go.

Then the host, Matthew Wright, took calls from the public (all two of them). I assumed that there would be differing opinions on the topic. But no, both people said near enough the same thing (with the second caller discussing what he saw as the difference between political correctness and homophobia).

This started a discussion in my living room. To give you some context: I suffer with general anxiety disorder, depression and I’m blind in one eye; my dad is a type 1 diabetic; and my sister has Asperger Syndrome. All of us, at some point in our lives, have faced discrimination from our peers, colleagues, family and strangers.

Sometimes, this discrimination can take the form of name-calling. But, and more often than not nowadays, it can be disguised as “banter” or just used against us in professional and personal settings to put us down.

A really good example is a joke that my dad heard on the radio: A comedian asked the audience if anyone was a diabetic, and when someone responded saying “I’m a vegetarian”, the comedian responded “The same thing.”

For my dad, this was not only a ridiculous thing to say, but it was also quite hurtful. It belittled what he goes through on a daily basis. His illness isn’t a choice. So to be compared to a vegetarian, was a shock. And as he rightly pointed out this morning, sometimes you can let comments go over your head and you can be fine, but one day you might not be in the right frame of mind and not be fine.

Which made me think: Why do we use terms that we know could hurt or disrespect people? Another good example, was on The Wright Stuff. The second caller was a male in a wheelchair. He said that an old lady had once asked him: “How long have you been a spastic for?” He had said that he wasn’t offended, because that wasn’t the intent.

Really?! Let’s be honest here, what is the purpose of that word? Well let’s ask Urban Dictionary…

Definition (UK): An incredibly derogatory term referring to people with cerebral palsy, in a similar way retarded is often used as an insult around the world.

So the purpose of the word, used by the typical person on the street, is to be derogatory. To belittle someone. To have power over them.

Regardless of the intent, why is the word even used?

And this is why I want us, as a society, to get rid of the term “political correctness.” People use this term as a way to excuse themselves and others of using lexis that is meant to offend and be derogatory. They name-call people who call them out on their bad behaviour “snow flakes” rather than be accountable for their actions.

It’s also used a lot with expression and free speech. And while someone can have an opinion, there is no room in our society for targeting and persecuting people who are vulnerable or considered different due to their gender, race or sexual orientation. Hate speech is not free speech, and we need to remember that.

So, let’s us all as a society drop the term. Let’s start being respectful to one another. Let’s use language that celebrates our differences, not undermines them.

I’m pregnant. I’m also taking anti-depressants.

On 28th December 2017, I found out I was pregnant with my first child. My boyfriend and I were and are estastic about our upcoming arrival.

I’m also mentally unwell and take anti-depressants on a daily basis. I suffer depressive and low-mood episodes, random bouts of anxiety and compulsively self-harm.

And I’m not alone.

According to research from King’s College London, 1 in 4 pregnant women have mental health problems. These issues included depression (11%), anxiety (15%), eating disorders (2%), OCD (2%), PTSD (just under 1%) and other disorders such as bipolar disorder.

I was surprised to see 25% of pregnant women suffered from these disorders, mainly because it’s not a subject that comes up. Though when you see articles titled, Taking antidepressants while pregnant could raise risk of child having psychiatric disorders, says report, you can understand why women might be reluctant to speak out.

But without my anti-depressants, I would risk my life and the life of my unborn child. My medication stops me from having panic attacks multiple times a day (yes, a day); it stops me from dissociating, which can be life threatening when you’re crossing the road; and it helps me live a simple life, which back in September had become impossible.

Don’t misunderstand me though; my medication isn’t a cure. I still have days where I struggle to leave the house; I still find it difficult to focus on my work; and I still have compulsive negative thoughts. If it wasn’t for my parents, my sister, my friends and my boyfriend, there would be days where I wouldn’t eat, laugh or sleep.

So it’s time to start talking about mental health in pregnancy; women like me need support from others, not judgemental comments or rejection.

Let’s face it; it’s already pretty tough being a pregnant woman. Your body is changing to make way for a tiny human. You’re persecuted by work because, heaven forbid, you might have to take some time off to care for your tiny human. Trying to find decent clothes that fit and don’t make you look like a small whale, while trying to maintain your style, can be near impossible.

So between the 30th April 2018 and the 6th May 2017, let’s make sure we support pregnant women everywhere by providing support, allowing them to speak out without judgement and maybe buy them some cake.

To find out more about maternal mental health, visit Mums and Babies In Mind, and to see how you can make a difference during Maternal Mental Health Week 2018, visit: https://maternalmentalhealthalliance.org/second-maternal-mental-health-matters-week/