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: 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.

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.

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.