Health

The first thing that happens is a feeling of déjà vu.

I get tingling sensations throughout my body, and it feels like I am slowly being mentally separated from it.

This feeling is also called an aura – and it is one of the first signs that I am about to have a focal epileptic seizure.

Next, it feels like a large wave is washing over me and pushing me down into an underwater cave. At this point, I am aware that a seizure is about to occur but there is such a small window of time before its onset that I have rarely been able to notify anyone.

Instead, I often freeze or let my body enter an autopilot state.

I am still physically conscious when I enter the seizure but mentally I am absent, and I cannot make sense of or respond to anything around me. My eyes are wide open, but my vision is blurred, as though my glasses have been washed off, and all noise becomes merged or silenced.

For Sarah

Last year, on March 10, we lost our beloved colleague Sarah Whiteley. Sarah was a fantastic journalist; she was Metro’s parenting columnist and a valued member of our first-person and opinion desk.

Sarah died aged 39 from SUDEP – sudden unexpected death in epilepsy. It is thought that every year around 1,000 people die from causes related to epilepsy.

With support from Sarah’s family, Metro is fundraising for two very important charities: SUDEP Action and Epilepsy Action.

From March 10 to March 26, which marks Purple Day (epilepsy awareness day), we will be running a series of features and first-person pieces, raising awareness of epilepsy and SUDEP.

Sarah was so incredible at helping other people share their experiences; she was a born storyteller and we hope to do her proud with this series, while raising money in her memory.

From here, the seizure transforms into what I call a ‘hallucinogenic’ nightmare, as though I am trapped in that cave and have all my worst fears presented to me. When in this state my right arm and neck often shake and I start to sweat profusely, almost as though my body is trying to respond to what it thinks it is seeing.

This usually goes on for at least two minutes.

To a stranger my seizures would often go unnoticed – I have been told countless times that I look as though I am daydreaming. It is only those who I am close with (family, fiancé and friends) that know when I am having one.

When coming around, I feel exhausted and dazed, as though I have just run a marathon; I struggle to focus on anything and I am unable to speak – almost like a cable has been cut between my brain and voice box, and my body is trying to reassociate itself with my mind.

These sensations can last for up to an hour and consequently, I often have to sleep to recover.

I was diagnosed with temporal lobe focal epilepsy in the summer of 2016, when I was 19. I had just completed my A-levels and had been granted a place at university for a degree in veterinary medicine, as well as my provisional license to start learning to drive.

I first began noticing these ‘hallucinations’ in early 2015 – I cannot remember when I had my first one, but I distinctly recall having them during daily activities, mostly when exercising.

Then in December 2015, I had an MRI scan prior to a planned ear operation that revealed I had an atrioventricular malformation (AVM) in my left temporal lobe – but there was no mention of it being linked to epilepsy until I was referred to neurology.

My referral led to more scans and neurology consultations, where it was explained to me that my daily ‘hallucinations’ were in fact focal epileptic seizures, and that they likely stemmed from my AVM.

This came as quite a surprise – and a huge learning curve. I had only heard of tonic-clonic seizures (where people stiffen, fall the floor and shake) and knew nothing of focal seizures, despite the fact I’d been having them on a daily basis since earlier that year.

The most challenging aspect of my diagnosis was that all of what I had worked so hard to achieve, such as attending university to study veterinary medicine, came to a grinding halt. I felt angry and scared that my independence and lifelong dream of becoming a veterinary surgeon were being taken away from me.

Even after taking a gap year to try to get my seizures under control with anti-epileptic medication, I was prevented from starting the veterinary degree on medical grounds.

It took me a few years to accept my epilepsy diagnosis, but I eventually decided to return to biological sciences, completing a degree in it at a different university and specialising in animal biology and conservation.

It was during my degree program and the course of the pandemic that I began to fully accept my condition for what it was. I had finally found something I had a passion for and a supportive network of friends and family.

I also managed to get a pinch of my independence back.

But my inability to drive has hindered me most – I have to consider public transport routes or rely on other people when making plans or getting to work. It’s not easy for me to go where I want, when I want to.

Over time, I built the confidence to be able to go out on my own – whether it’s to walk the dog, pop to the local shop or out into the city, knowing I am unlikely to have a seizure.

It was during this time I met my fiancé who helped me maintain a positive outlook on life.

He also encouraged me to go forward with gamma knife radiotherapy to help treat my AVM. The treatment was put forward to me in 2021 as an option to remove the AVM with the ultimate aim of reducing my heightened risk of a stroke.

Roll forward to the present day and, having undertaken only one treatment of gamma knife radiotherapy in September 2022, I now not only have no AVM, but I also have the stroke risk of a normal human-being.

I continue to take medication intended to treat focal epilepsy – but it’s been a tedious process. Since my diagnosis, I have tried over five different anti-epileptic medications and after going back and forth with my neurology team, I was able to finally settle on my current medication and their doses at the start of 2024.

Earlier doses didn’t completely stop my seizures and came with a whole host of uninvited side effects, including depression, fatigue and memory loss.

At first I struggled to carry out daily tasks as simple as getting out of bed or brushing my teeth.

But while the drugs still affect me now, I have strategies in place to help reduce their impact, such as setting small daily goals, journaling feelings and taking photos of moments I wish to remember.

With the gamma knife radiotherapy and correct medication, I am now one-year seizure free, which means I have many exciting prospects for my life going forward, such as starting a family with my fiancé.

Having epilepsy has had many positive impacts on my life. It has taught me resilience, patience and perseverance.

Since diagnosis, I have solo travelled to multiple countries, volunteered in research and conservation projects, hiked many mountains, graduated with a first in biology and so much more.

It all required additional precautions – medical insurance, seeking help or advice where needed – but I have learnt that having a disability does not stop you from achieving great things, so long as you set your mind to it and surround yourself with those who will cheer you on.

My condition can feel quite lonely as the majority of people don’t know of or understand focal epilepsy and the seizures it presents – they are much more subtle than tonic-clonic seizures and not as readily identifiable.

The dramatic way epilepsy is presented in the television and media also means there is also a lot of fear and stigma. I wish people knew more about the variety of forms of epilepsy and the types of seizures, alongside a better understanding of the side effects that can come with them.

Seizures are, in my opinion, only 10% of what it is to have epilepsy. The side effects of medication and seizures, and loss of independence, make up the remaining 90%. You have to shape how you live around your diagnosis.

Going forward, I hope that I continue to remain seizure-free and continue regaining some of the independence I lost – I am hoping I can return to my root desire to be in the veterinary field by progressing into a career in veterinary nursing.

I know I shall continue to face challenges, especially with the side effects of my anti-epileptic medication.

However, I know that with perseverance and patience, I can achieve what I plan to, and they are just small hurdles I have to jump to get to my end goal.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

Share your views in the comments below.

Imagine the scenario: a loved one has just been diagnosed with epilepsy, a much-misunderstood brain condition that can manifest in unpredictable ways.

You are probably feeling concerned, frightened and almost certainly powerless.

In fact, there are numerous ways to support those around us living with epilepsy, whether it’s a friend, relative, or a stranger, from creating a safe space to offering reassurance and simply asking questions.

What are epileptic seizures?

Epilepsy is a condition that affects the brain.

In those of us without the condition, electrical activity happens constantly as networks of brain cells send messages to each other to control all our thoughts, movements, senses and body functions.

However, when there is a sudden, intense burst of electrical activity in the brain, the messages between cells get mixed up and the result is an epileptic seizure.

The way a seizure manifests depends on which area of the brain is involved, and it doesn’t always result in the loss of consciousness; seizures range from strange, uncontrollable feelings or movements to falling to the floor and shaking.

How to recognise a seizure

Tonic-clonic seizures, perhaps the most commonly known seizure where a person stiffens, drops to the floor and begins to shake, is one of roughly 40 different types of seizure. Each have their own set of symptoms.

Being able to distinguish between the different types of seizures can help you to choose the right course of action.

For Sarah

Last year, on March 10, we lost our beloved colleague Sarah Whiteley. Sarah was a fantastic journalist; she was Metro’s parenting columnist and a valued member of our first-person and opinion desk.

Sarah died aged 39 from SUDEP – sudden unexpected death in epilepsy. It is thought that every year around 1,000 people die from causes related to epilepsy.

With support from Sarah’s family, Metro is fundraising for two very important charities: SUDEP Action and Epilepsy Action.

From March 10 to March 26, which marks Purple Day (epilepsy awareness day), we will be running a series of features and first-person pieces, raising awareness of epilepsy and SUDEP.

Sarah was so incredible at helping other people share their experiences; she was a born storyteller and we hope to do her proud with this series, while raising money in her memory.

Some of the most common types of seizure are:

• Tonic-clonic (formerly known as Grand Mal): the person stiffens, falls to the floor and starts to shake or jerk.

• Absence seizures (formerly known as Petit Mal seizures): the person abandons what they are doing and appears to ‘switch off’; this usually lasts for a few seconds.

• Myoclonic seizures (also referred to as ‘myoclonic jerks’): the person has sudden, short jerks that can affect some or all of their body. The jerking can range from very mild – like a twitch – to very forceful. They usually last a few seconds, but some people have them consecutively in clusters.

• Focal seizures: a seizure that begins in one side of the brain. The person may stay fully aware, or may lose awareness. They may experience movements. Additional symptoms may also include things like changes in emotions, thinking and sensations.

• Tonic seizures: if a tonic seizure starts in both sides of the brain, all the person’s muscles tighten and their body stiffens, and they may fall to the floor. If a tonic seizure starts in one side of the brain, their muscles tighten in just one area of the body.

• Atonic seizures (also referred to as ‘drop attacks’): usually, the person’s muscles will go limp and they fall, sometimes resulting in injuries. Alternatively, their head may drop forward or they might sag at the knees. Atonic seizures are usually very short.

There are two types of non-epileptic seizure: febrile, which is related to a high temperature in children and dissociative, which can mimic epileptic seizures but are not caused by electrical activity in the brain.

How to help someone having a seizure

If you suspect someone may be having a tonic-clonic or a tonic seizure, Epilepsy Action recommends following ‘CARE’:

C – Comfort. Cushion their head with something soft to protect them from injury and keep them comfortable
A – Action. Time the seizure, and clear anything that could be harmful out of the way. Check if the person has a medical ID or bracelet with more information.
R – Reassure. When the seizure has stopped, place them in the recovery position, offer reassurance and stay with them as they come round.
E – Emergency. Call 999 if the seizure continues for over five minutes, the person is badly injured, another seizure starts immediately, the person has trouble breathing after the seizure or has never had one before.

For other types of seizures, such as Absence, Myoclonic and Atonic:

• Guide them out of harm’s way (especially if they’re having repeated absences)

• Stay with them, and be calm and reassuring.

• Explain what they may have missed, what’s happened or where they are if necessary.

• Help to get them emergency medical care if they are injured, or to seek ongoing care if it’s their first seizure.

Remaining calm is important. Depending on seizure type, many people with epilepsy remain aware of their surroundings even as they seize, so continuing to talk to them, keeping your voice neutral and reassuring, can help a loved one or stranger to feel safe throughout.

While some people recover quickly after a seizure, others can feel disorientated and take time to feel better. If you’re able, stay with the person post-seizure. If they are able to communicate, use the ‘four Ws’ to check their awareness: who they are, what happened, when, and where they are.

Help them to get into a safe, comfortable place (especially if they have had a seizure in a public place) and offer to call a friend, relative, or additional medical aid if necessary.

How to help care for a loved one living with epilepsy

Being diagnosed with epilepsy can be lonely at any time or stage in life – even more so considering that for 50% of people diagnosed with the condition, there is no known cause.

To offer support, start by asking about your loved one’s care plan. This will have more information about their condition, their treatment and how to help in the event of a seizure, and will give you the basic details on their needs.

You can also offer to be their emergency contact. This might mean adding your details to an epilepsy ID card or being highlighted as their emergency contact in their smartphone. This usually involves having information about your loved one’s diagnosis, requirements and any medication, so it’s important to stay up-to-date.

Epilepsy Action offers a free seizure diary to help people track and manage their condition. Helping to fill this in, or review it with your loved one, will give you a better idea of the frequency of their seizures and help them to take proactive steps in managing their condition.

You can undertake some epilepsy awareness training. This can be done online, and Epilepsy Action also offers training designed for the workplace.

Finally, simply listen and offer your support. Understanding that epilepsy can be a complex and life-changing condition while standing by their side can be invaluable.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

Share your views in the comments below.

‘I am really sorry because you are a young man and this is a life limiting condition.’

After months of waiting for answers, the neurologist delivered them with crushing clarity.

It was October 2024, and my husband Andrew had just been diagnosed with motor neurone disease (MND) aged 51 – which affects your brain and spinal cord. The condition causes muscle weakness and gradual paralysis, making walking, talking, swallowing and eventually breathing impossible.

The doctor’s words didn’t feel real. I thought he’d got it wrong. We’d been reassured in a previous appointment that it was unlikely to be MND. Andrew was fit and healthy, so I was sure he could survive.

‘Don’t look up the life expectancy’ was the doctor’s first advice – so, of course, we immediately did.

We read that the average MND patient lives for about two to three years, and that there is no cure.

I’ve faced adversity in my life – I fled the Bosnian war growing up – but nothing prepares you for a diagnosis like this. Our family bubble had been burst.

I met Andrew online in 2006. There was an immediate connection between us from our first date in London’s Hyde Park, despite my exam-like questions about shared interests and whether he wanted marriage and kids.

Fortunately, he did. We were married within 18 months, and renovated a fairytale Georgian house in Hampshire, where we raised our two children in a joyous world of long walks, music and art.

Things changed in July last year, when Andrew noticed muscles twitching in his limbs; the spasms spread to his whole body within a few weeks.

At first, we were worried but didn’t catastrophise. We knew MND was a possibility, but it was the worst of many. Andrew joined the waiting list to see an NHS neurologist, but with a waiting list of months and his spasms getting worse he decided to book a private appointment.

Here, he was told it was unlikely he had MND, as he was showing no signs of Bulbar Palsy, a type of MND that primarily affects the tongue and can be spotted easily as it causes tongue weakness. Although Andrew did suffer from tiredness and mobility problems – his ankle was very weak, making it difficult to walk long distances.

But Andrew’s NHS appointment in October made it clear this wasn’t the case. He had MND and he was going to die.

We tried to stay upbeat, but started hitting barriers straight away. The biggest source of hope for MND patients is that cases caused by a faulty SOD1 gene could be treated. However, this is very rare; just 2% of people have this type of MND.

On the day Andrew was diagnosed, he had a blood test to check whether he was a member of the 2% club, but in January we were told his blood sample had been lost.

He now has to wait until May to find out if there’s any hope, leaving us no choice but to tell the children, aged 12 and 14.

We’d put off telling them for as long as possible, but we reached a point where Andrew couldn’t even go for a walk. We made up reasons for why, like saying ‘Daddy has a lot of work’, but there is a point at which you can’t keep making excuses.

It was the hardest thing we’ve ever had to do.

The kids sat on the sofa and Andrew talked them through how his ankle was getting weak, and this was part of a bigger problem. We all cried.

Our daughter said, ‘But what would be the point of life without you?’

Our son was also upset but wanted to know how this would affect Daddy’s salary, which was met with both laughter and explanations.

His question was a good one. My husband’s disease is a health problem, but it’s also a life problem. Every aspect of our lives has been upended, including our finances.

I’m a guitar teacher but also spend a lot of time looking after the children, so Andrew has always been the breadwinner. As an NHS consultant psychiatrist, he’s always been well paid and we rely on his income.

But when he was diagnosed, Andrew was advised to retire immediately instead of taking sick leave. He refused to. His life insurance is also refusing to pay out, claiming he could still recover from this incurable disease.

It’s a baffling decision – we’re all hopeful a cure can be found, but it’s not here yet so there’s no excuse for them to be so optimistic.

With Andrew unable to work and me too busy to work properly alongside looking after him and the kids, we’re struggling to pay our mortgage and will probably have to downsize.

I’ve reached out to charities for help to mixed effect. Our local hospice has been brilliant and will provide palliative care when needed, and an MND charity gave us a grant to pay for a family holiday.

But there’s not enough being done to find a treatment or cure.

This wouldn’t be acceptable with any other disease, so why should it be tolerated by families like mine whose lives are being destroyed?

5,000 people have MND in the UK at any one time. That’s 5,000 people who may be feeling invisible, vulnerable, and let down and essentially left for dead.

We need to break the taboo around MND and find a cure – now.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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Lying in bed next to my husband, John, I writhed in agony. Something was horribly, terribly wrong.

‘John, I’m dying,’ I managed to cry out in pain.

It was 4am in March 2009 and our then-four-year-old son was asleep in the house so John jumped into action, calling an ambulance and asking my mum to come over and babysit.

For two weeks leading up to this I’d been bleeding heavily outside of my cycle with painful cramping. I’d been to the GP where we live in Edinburgh and even to A&E multiple times but no one had been able to help or give me any answers.

Now it was much, much worse.

I had this instinct that something very serious had happened and I knew my life was at risk.

With the blue lights of the ambulance outside lighting up the hallway, my four-year-old appeared in the doorway, bleary-eyed.

‘Mummy is going to be fine, a doctor is going to make me better,’ I promised him, before leaving him with my mum to travel to hospital with John.

At the hospital, we were kept waiting in A&E and the pain continued but when I passed more blood and tissue I pleaded with John to get help – I couldn’t wait any longer.

John got me the attention I needed and I was quickly seen by a consultant who soon told me, with certainty, that I was experiencing a ruptured ectopic pregnancy and an immediate operation was required.

I barely remember signing consent forms before being rushed into life-saving surgery.

It was only after waking up in recovery that I began to understand what had happened to me.

I had heard the term ectopic pregnancy before, but didn’t know much about it. Plus, I had been fitted with a copper coil after my son was born – I shouldn’t have fallen pregnant at all.

I learned that an ectopic pregnancy happens when the fertilised egg grows outside of the uterus, usually in a fallopian tube.

The foetus can’t survive outside of the uterus but the tissues can grow and cause a blockage that will eventually burst (rupture) out of the fallopian tube.

When this happens, it’s a life-threatening emergency because it can cause such huge blood loss. It also means that the ruptured fallopian tube has to be removed.

If an ectopic pregnancy is detected before it ruptures, it can usually be treated safely.

I hadn’t been given that opportunity.

For two weeks, I’d tried to find answers to the pain I’d been experiencing. I’d taken time away from my busy job as a senior account planner at an ad agency to attend appointments and visit the hospital, where medical professionals didn’t lay a finger on me or even give me even a blood or urine test.

At home, our preschool son had wanted me to play, but for a fortnight I’d spent most of my time curled up in a ball in agony, while trying to keep up with work. It was horrific.

The doctors I’d seen before the rupture should have recognised the symptoms of an ectopic pregnancy, and I should have been tested, but instead I’d been left in a state of decline.

Close friends and colleagues had commented on the fact that my appearance was turning grey, rather than my usual healthy pink.

Once I’d been dismissed from hospital post-surgery, I was signed off from work for three months to recover from the huge blood loss and emergency procedure.

I spent the recovery time lying on the sofa, eating the prescribed spinach and red meat at mealtimes. I was keen to get back to work, but needed to build my strength back up first.

On my first day back my boss asked to see me. I hoped he would reassure me that I had been missed, let me know what exciting new projects he had lined up for me, or even just ask after my health.

But during our meeting he didn’t ask after my health, but rather seemed to dismiss the seriousness of my experience and I understood from our conversation that the work I’d completed, on the day I was hospitalised, had been considered ‘substandard.’

I was staggered and it was at that moment that I knew I needed to make a change.

John and I had discussed trying to have a second child once I had recovered, so despite having set my sights on working in advertising since my teenage years, I decided to leave the industry, hoping to take maternity leave and never go back.

Thankfully my daughter was born in 2010 with no issues despite me having only one remaining fallopian tube.

And when my statutory maternity leave ended, I handed in my notice.

For 18 months, I stayed at home with our children and gave myself the time and space to plan my next career steps.

We’d been through such a sobering experience that I wanted to be present with my family.

I also decided to give feedback to the Scottish Health Board to ask them to improve their training to recognise the risk of ectopic pregnancy in female patients with abdominal pain and to test for pregnancy in all women with symptoms.

I was told too much time had passed for my complaint to be actioned officially, but I still felt better for raising the issue. I hope it made a difference.

The whole experience was hugely damaging to my confidence and I decided not to return to advertising agencies when I did go back to work.

In fact it took years for me to return to my first career love, marketing.

While our children were young I launched and ran a hip-hop dance company flexibly around nursery and school hours.

Finally, in 2017 I felt I had the confidence to go back to my marketing roots and started Enjoy Marketing.

Over time, my offers and services grew. Now we have a team of five working for us, including John and me. Everyone at Enjoy Marketing is treated with respect and trust which remains a huge priority for me.

I’ve also launched a podcast – From Overlooked To Fully Booked – to support other business owners on their journey and help make marketing accessible to them.

All of this is only possible because I’m still here. I’m so lucky I can say a ruptured ectopic pregnancy only changed my life, rather than ending it.

As told to Michelle Morgan Davies

This article was originally published January 5, 2025

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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Three months after the birth of my second child, I was home alone with my three-month-old baby son, talking on the phone to my best friend, Melanie.

Ever since we’d bonded at work as administrators in the NHS over our love of all things Disney and a shared obsession with the movie Beetlejuice three years earlier, we’d become inseparable.

We often talked on the phone for hours so that day in July 2019, seemed no different. That is, until I couldn’t get my words out.

Mel said my speech came out slurred and that all of a sudden, I wasn’t making any sense at all. She knew straight away it was an emergency.

Mel had a close relative who’d had a stroke roughly five years earlier so, knowing garbled speech like mine was one of the signs, she knew she had to act fast.

Mel immediately contacted my mum (who lived close by), which meant she got to me within six minutes.

However, when she arrived, my front door was locked. With no other option, because my partner wasn’t close by, and I was slipping away with every minute, she then called 999.

Police and ambulance services arrived and smashed the glass on my front door so they could get to me. By that point I was dead weight and unconscious.

The next thing I remember is waking up on the stroke ward at University College London Hospital on what was my 24th birthday.

When I fully came around the doctor’s told me what happened: I’d had a major stroke.

Apparently I’d gone into cardiac arrest in the ambulance, and then again when we arrived at the hospital. Frankly, I was lucky to be alive.

My first thought was of my kids, but Mel had arranged for my sister to look after my son and my daughter was staying with a friend. She saved them from being alone for what could’ve been a whole weekend.

Then the reality of what I’d just been through hit me, yet I simply refused to believe it.

Having worked in a hospital for so long I thought I knew what a stroke looked like; in my mind I couldn’t possibly have had one. I thought to myself: ‘I’m too young. Everyone else in the stroke ward is in their 70s and 80s!’

Of course, it was then explained to me in detail that a stroke can happen to anyone at any age.

In my case, doctors felt the most likely reason was due to something called a patent foramen ovale (PFO) – a small hole in the heart that exists in everyone before birth and most often closes shortly after being born.

I understood but still couldn’t quite believe it. I’d been walking, talking, laughing and doing all my usual things right up to the stroke. What could’ve possibly changed?

Luckily I recovered well and, anxious to get home to my baby boy, was discharged from hospital two days post stroke.

I was informed of the medication I’d now be on – blood thinners to prevent clots – and of my upcoming hospital appointments including something called a bubble echo study.

Also known as a bubble contrast echocardiogram, the test is essentially an ultrasound combined with an injection of microbubbles to assess the structure and function of the heart. And, as it turned out, I did have a PFO.

Suddenly a lot of things in my life made sense. Throughout my life I had continuously complained of chest pains, I’ve had countless ECGs and exams, and just a few months before the stroke I was told I had an irregular heartbeat.

Now we knew what the problem was, we could fix it. In the meantime though, I had to learn to cope with the after effects of my stroke.

Three months after I was discharged I lost my sense of taste. Then I developed weakness down my left side, which made walking difficult, as well as pain and fatigue.

Three months after I was discharged I lost my sense of taste. Then I developed weakness down my left side

My memory was also badly affected – I kept forgetting to do the exercises my physio gave me, or I would put food on to cook and forget about it, so it would burn – but I was determined not to let it beat me.

Six months after my stroke, I returned to my job (which, in hindsight, was too soon) and tried to keep up with the demands of looking after my health, family and other commitments like nothing had changed.

Of course, a lot had.

Going from a fully mobile, athletic and energetic mum to struggling with fatigue and doing my usual daily activities was a major change and I didn’t know how to balance it all.

Fortunately, both my family and Mel were extremely supportive – Mel was someone I could lean on, sometimes literally, without judgement – and I also found the charity Different Strokes.

They support working-age stroke survivors by offering peer support, providing a variety of services to help them and their families reclaim their lives, and a Facebook group where survivors can share their ups and downs as well as get support and advice.

Sharing my story to its 8,000 strong community, I received such a warm response and amazing support from other young stroke survivors. I realised I was not alone.

In fact, with their help, I also recognised that I’d been too focused on getting back to work and needed to turn my focus back to my physical recovery.

For the last year, I’ve been working on my health: I go to the gym three days a week and do exercises like hip abductions and grip strengthening for my hands. I also do 30 minute walks on the treadmill, and it’s all made a huge difference.

Last summer I was even able to take my kids on outings to Thorpe Park and Kew Gardens, and recently we went on the London Eye and to Shrek World.

These activities would have been impossible a few years ago as I just wasn’t physically strong enough. But now I’m getting there.

As proud as I am of my progress though, I still want to raise awareness – especially as Black and Asian people are twice as likely to suffer from a stroke and often have strokes at a younger age.

That’s why I now volunteer with Different Strokes’ Black and Asian Stroke Survivors Project, to encourage people to raise their own medical concerns with their GP.

I had chest pains for years, which I had mentioned to doctors, but I never got the attention I should have until my stroke.

I’m fortunate that my PFO has now been fixed, but if it had been detected earlier and closed, I probably wouldn’t have had a stroke in the first place. All of us, doctors and the general public, must do more to be stroke aware.

I’m only here today thanks to Mel’s quick thinking. Without her, I could’ve been dead. There’s no sugarcoating that one. She saved my life and I’m thankful for that every day.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

Share your views in the comments below.

Defeating my eating disorder has undoubtedly been the biggest achievement in my life to date.

I say ‘defeating’ – and that’s very much what I identify it as – but anyone with the illness will know that it never truly goes away.

That’s one of the things I was warned of when I began my fight back against bulimia nervosa, which I had suffered with since a light-hearted comment about my ‘chubby’ body from a friend when I was 13.

17 years later, after huge health implications including messed up electrolytes that landed me in hospital several times, I was ready for this crux in my life to be gone.

It was not easy, but then I never expected it to be. After a few failed attempts over the years to get a handle on it, this time I really meant it after a hospital doctor’s warning that it could end up killing me.

With an extremely supportive wife and family by my side along the way, I attended therapies, spoke to nutritionists and gradually began to hack away at the feelings of self-loathing.

I kept positivity diaries, I upended my diet and I repeatedly congratulated myself on every small step, even if this was just managing to keep a snack down.

For myself – and every lived experience is different – getting into the mindset of knowing how important this was to those who loved me became a driving force to success.

What started off as their reluctance to ‘guilt’ me turned into them being my biggest cheerleaders.

For my mum, who I had confided my eating disorder in just a year into the notoriously secretive condition, she has been on this hellish journey with me.

In many ways, it’s just as difficult for those around you. Every day feeling that this person who means everything to you is putting their life at risk must be all-consuming, yet there are so many fluctuating rules on what you can and can’t say.

How do you support someone through this without applying pressure, without using incorrect terminology sometimes, or without crossing lines that could set things back a stage?

It’s impossible.

So when I found myself at a place where I could finally eat three meals a day and consistently let them digest, the relief for my wife and my family was palpable.

I can’t lie, I basked in their joys, their congratulations, their compliments and their pride in me.

Being called amazing and an inspiration was like nectar – it meant the world and still does.

Drunk on this, it was everything I needed to keep going and regain normality.

For the next weeks and months, I would either boast about how this week had ‘no incidents’ and receive a similar response.

Other times, a family member or a friend might tentatively ask ‘and how is it all going?’

I would be able to then give them the good news.

Of course, that can’t last forever and nor did I expect it to. What I didn’t expect was how alone I started to feel a couple of years down the line when I no longer had this excitable cheerleading.

It’s no longer big news, why should it be?

But no matter how far you get into a recovery period, the voices in the back of your mind, telling you you’re worthless, pointing out a roll of fat or encouraging you just to treat yourself and have one binge – it’s always there.

Sometimes, it’s simply apparent and dormant, other times it’s screaming into your ears and you can think of nothing else.

And that’s why a recovery will still always be a fight. The voice is often easier to beat down, certainly moreso than when it had you in its full grip, but it’s an undeniably hard way of life when it creeps in again.

So that’s where the relapse came in. Relapses are all part of the recovery process, as medical experts will tell you. This is especially true in the early stages and, so long as you get back on that bike, they are expected and not a big deal.

However, this one was different. It took just one bout of depression induced by my bipolar disorder to spiral. I naively thought the voice was gone, but it was back with a vengeance.

My mind was telling me, ‘wow you really DID get fat again, didn’t you?’ Whether that was true or not meant little to the demon in my brain.

One incident became many and, terrifyingly, I feared I was back to square one. Were it not for the understanding and support of my wife, maybe I would still be there.

What no-one warns you about is the battle that comes into play when everyone has ‘lost interest’. The novelty of beating the eating disorder is gone. Everyone has moved on, but for me, I was still there sometimes.

Recalling the relief and elation from others that I enjoyed at the start, I couldn’t dare tell anyone I was relapsing. I didn’t want to break their hearts.

My wife knew, but for anyone else, I kept up the pretense that this was gone, I was ‘better’.

If anyone would have asked, I’d have downright lied.

It lasted a number of months and I had all but given up until an epiphany. I don’t know if it was a sudden fear for my health again. Or the change in medication for my mental health that appeared to be positive. Or the desire to make my wife proud.

But something snapped again – I knew it was now or never; if I let this continue one step further, I’d be back to square one and, at 35-years-old, I felt I’d be in no place to start all over again.

I am not fully back to where I was and this is the first time I will admit that to a wider circle. But I am getting better.

That determination is back and the nasty voice is waning.

Most importantly of all, I still beat my eating disorder. A relapse will never take that away from me. My status hasn’t changed – I am in recovery. I always will be.

I won’t let a blip beat me and, before long, claiming that I am totally fine will be the absolute truth again.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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Everyone knows about the dangers of black mould, but what about its pal, pink mould?

The pinkish-reddish-toned bacteria – yes, bacteria, not technically mould – loves the moist, damp conditions of an English winter. And while you may have spotted it and decided it’s an issue for another day, one doctor is warning that it’s actually a ‘now problem’.

Taking to TikTok, Dr Karan Raj warned his 5.3 million followers that if not dealt with correctly, the slime, also known as serratia marcescens, can have some pretty icky side effects for humans.

Explaining why you’re most likely to find it in and around your shower, he said: ‘It enjoys munching on fatty deposits like those found in soaps and shampoos, hence why it likes to hang out in the bathroom.’

And although it is mostly harmless, the doctor noted that it’s best to get rid of it as soon as you spy it, so you don’t accidentally get it in ‘your eyes or open wounds’.

This is because any contact with your eyes can result in an eye infection, including conjunctivitis, which the NHS describes as an inflammation of the conjunctiva and eyelid, causing redness, itchiness and sometimes pus.

Dr Suzanne Wylie, GP and medical adviser for IQdoctor echoes Dr Raj, saying this slimy substance can cause ‘opportunistic infections’ if not dealt with.

‘Skin infections, urinary tract infections (UTIs), and conjunctivitis have been linked to serratia marcescens, especially in hospital settings,’ she tells Metro. ‘Inhaling or coming into frequent contact with the bacteria may also contribute to mild respiratory irritation in some people.’

Thankfully, for the majority of people, these risks are short-term and mostly limited to skin or respiratory irritation. However, Dr Wylie warns if you or someone in your home with pink mould is immunocompromised, you’ll want to take your pink mould situation more seriously.

‘In vulnerable individuals, prolonged exposure or infection could lead to more serious complications, such as persistent respiratory issues, urinary tract infections, or, in rare cases, bloodstream infections,’ she explains, adding that in some cases, it has even been linked to hospital-acquired sepsis.

With this in mind, people undergoing chemotherapy, organ transplant recipients or people with chronic illnesses like diabetes should be extra cautious around the bacteria, and have it removed as soon as they notice it.

Elderly people, infants and young children, as well as people with respiratory conditions, should also follow these guidelines.

Everything to know about ‘pink mould’

What is pink mould?

Pink ‘mould’ isn’t actually mould, rather a bacteria called serratia marcescens.

Where is pink mould found?

The bacteria thrives in warm and damp areas, so it’s most commonly found in bathrooms, particularly showers, baths, benches, sinks, and toilets.

What are the effects of pink mould?

The bacteria’s side effects aren’t typically too worrisome. However, if it ends up in your eye or an open wound, it can cause an infection.

If you are immunocompromised, elderly or suffer from respiratory conditions, it could also result in chest and gut infections, urinary tract infections (UTIs), and sometimes pneumonia, a lung infection, or sepsis.

So now that we know all about the bacteria itself, how does one go about getting rid of it?

Multiple cleaning products are on shelves that can help, but if you’re not up for a trip to the shops, this home remedy is just as effective.

The experts at Rubber Duck Bathrooms suggest mixing a slightly runny paste of washing-up liquid and baking soda in a bowl and using it with a scrubbing brush to remove the build-up of pink bacteria.

Alternatively, Dr Wylie advises using a ‘non-abrasive bathroom cleaner, white vinegar, or a diluted bleach solution’ and a damp cloth while wearing gloves and a mask to down the surface.

Once it’s gone, you can also do things to prevent its return, like regularly washing shower curtains.

Or, after every shower or bath, wipe down those surfaces and tiles in your bathroom with a towel or squeegee.

It’s also recommended to improve ventilation, which can be as simple as opening your bathroom window for 10 to 20 minutes after a hot shower or bath to let the damp air out.

And of course, you should regularly clean your bathroom and any other room with conditions that encourage the growth of pink mould.

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Shakily biting into a small spoonful of paella, I silently prayed that my partner, Piyus, wasn’t watching.

Even though we’d been dating for a whole year, I hadn’t dared eat in front of him until now.

I was too scared of spilling something down myself or getting food on my face and that he’d point or laugh at me for making a mess. A fear that I’d held onto for years.

As a child, other kids at school had started teasing me for ‘walking like a robot’, and I became self-conscious about how I came across to others. So though I wasn’t a particularly messy eater, I became paranoid that it would become the next thing they’d pick on.

That’s when I decided to give up eating in front of anyone entirely – even those closest to me.

It was easy to get away with at first. My parents worked long hours in a shop, meaning we never ate together.

But big family gatherings became a nightmare: I’d either go hungry or only eat foods that wouldn’t make a mess – like crisps, which could be broken up into tiny pieces. Even then, I’d nibble them in my room, or in the corner where no-one could see.

I thought I was just self-conscious at the time, but years of training has helped me realise I was suffering from Social Anxiety Disorder.

The National Institute for Health and Care Excellence (NICE) estimates up to 12% of people in the UK are affected by social anxiety at some point in their lives and I was one of them.

It is described as a fear of doing everyday activities – like catching a bus, walking in public or filling the car with petrol – with those affected worrying they are being laughed at or judged by onlookers.

My fear came with all of those activities but eating was the worst. Yet I hid my problem so well from my parents that they had no idea what I was going through and probably never will.

Experts say that social anxiety often gets better with age, but by the time I was 18 and at university, things were getting bad.

If I had no choice but to eat in public, I’d hide away in the corner and only eat items that were impossible to make a mess with – like chopped fruit or pasta.

I received counselling through university, which helped a little bit, and the GP offered me antidepressants but never took them.

Things got so bad that I attempted suicide.

Around that same time, I met Piyus, who spotted my problem when I kept sending him away at lunchtimes. That’s when I confessed to him what was going on – the only person I’d told other than my best friend.

To my relief, he couldn’t have been more supportive and our connection continued to grow.

Eventually, after a year together, I finally let him take me on our first ‘proper’ date to a restaurant.

I chose paella, a meal with ingredients that would stick together so it wouldn’t go everywhere and Piyus casually carried on eating, which allowed my fears to quickly fade away.

It was a huge step and I knew then that Piyus was the one. However, it’d still be a long time before I’d ever feel truly comfortable eating in front of anyone.

At our wedding, four years later, my disordered eating was still crippling me and I had to get Piyus to distract our guests so nobody would notice that I was barely touching my food.

At my job as an optometrist, I felt forced to have lunch facing the wall at a nearby coffee shop as there was nowhere private I could eat.

One time at a pizza restaurant with friends, I picked at a yoghurt dessert instead of a main meal as I was so paranoid about eating slices in front of people.

Eventually, I decided enough was enough and paid for private Cognitive Behavioural Therapy (CBT) – a talking therapy that can help you manage your problems by changing the way you think and behave – in which I was set tasks to face my fears head-on.

It started with small things like going alone to a café to people watch. That exercise alone taught me that others were too wrapped up in their own lives to pay me any attention.

Gradually, my fears eased to the point where I was able to eat small meals in front of people, using a knife and fork to cut it into pieces first.

By the time Piyus and I had our girls – Sienna, in 2011 and Isla, in 2013 – I was able to eat family meals with them at home, but I still couldn’t eat normally at meals out or big family parties.

Worried about the impact my disordered eating could one day have on them, I became even more determined to do something about it. That’s why, in 2018, I decided to become a Rapid Transformation Therapy Practitioner.

Rapid Transformation Therapy allows you to understand where these beliefs came from, why they arose in someone’s life and then works on letting go of what no longer serves us and rewiring the neural pathways for better beliefs.

As part of my training, I had to have my own counselling and discovered my fears had stemmed from childhood – I never felt good enough and always wanted to fit in and belong.

I had to learn to accept that I didn’t need to be perfect and that we all embarrass ourselves occasionally. And it really helped to remind myself that, half the time, no-one is paying any attention anyway.

From that moment on, things got gradually easier and today, aged 41, I’m in a much better place.

I still have to push myself to eat things in a way that might make a mess – like eating a burger in a restaurant last year with my hands. But on the whole, I feel a lot better.

The biggest difference now is that I can go out to eat with Piyus and the girls and order what I really want to eat, not just what will make less of a mess.

Just recently, I even faced my biggest fear of all when I bit into a bagel in front of my boss and the cream cheese filling spilled out everywhere. He didn’t so much as bat an eyelid and I felt elated.

I spent years avoiding things and certain foods because I was scared of being embarrassed. But now I know I have nothing to fear.

Life can be messy, and for once, I’m OK with that.

As told to Carina Platt

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‘I don’t want you to feel insecure,’ my mum said, as she looked at me with pity, ‘we will pay for a hair transplant.’

I was only 18, which is young to be balding but the process had actually started a few years before that.

I had confided in my parents about it so that they could help me try to figure out a way to not be self-conscious about it – not to offer to pay for a hair transplant.

I was not thrilled about the prospect of losing my hair but more than that, cosmetic surgery was not on the list of things I wanted to discuss with my parents. It felt embarrassing.

I knew they were still paying off their house at the time so $10,000 USD (nearly £8,000) to buy their son a rug was out of the question.

After the initial outburst and insisting my mother to ‘just drop it!’, I gathered my emotions and said: ‘Mum, I appreciate the offer. I don’t want a hair transplant and I also don’t want to talk to you about this anymore.’

The first person to notice I was going bald was actually my sister, who was a hair stylist.

At 14 in 1999, I had a routine haircut with my mum when my sister said: ‘Kevin, your hair is thinning, you are getting a bald spot.’

Mum rushed over as they combed through the crown of my head, both attempting to assess whether this was new or a development that could be slowed or stopped. Disbelief was my first reaction.

Within one year, my mother booked a doctor’s appointment to see if there was anything seriously wrong.

A doctor that looked like George Clooney entered the small sterile examination room with a sombre look: ‘Kevin, you have an incurable disease. Androgenic alopecia,’ He let out a deep breath, ‘I’m sorry.’

‘Oh no, what is that? Is he going to be OK?’ my mum worried aloud.

‘I think he will be OK because that is just a fancy term for… male pattern baldness,’ the doctor made a face to punctuate his already failing joke.

That was the joke – make a high schooler think he has cancer of some sort, then pull the rug out from under him. The worst part was how thick the doctor’s hair was. He didn’t know the life of a bald man, it wasn’t his place to joke about it.

I felt deeply self-conscious for the first time in my life. My mother wanted to do anything to make it go away and the doctor – who surely saw much worse conditions every day – wasn’t crushing it with his bedside manner.

He ran through my options – get a hair transplant, get on finasteride and rogaine (hair loss drugs) or go bald.

Hair transplants were expensive and were not yet as perfected as they are these days, while finasteride can cause early onset erectile dysfunction. But going bald? Completely free! No impact on erections!

After the doctor’s appointment, my mum would sheepishly bring up the hair transplant every few months, as she could see the process of my androgenic alopecia naturally taking its course.

The doctor explained that hair loss drugs are best to retain the hair you have and they are only partially effective at growing hair back. So, the longer I waited the more the thinning would become permanent – it felt urgent.

All of this was clouding my mind – I would’ve rather been thinking about graduating high school instead.

I went into denial for a few years. By 18, reality was setting in. I was reaching a crucial decision point – and that’s when she seriously offered to pay for the hair transplant.

In the ensuing years, I wore various hats: baseball, beanie, fedora. I got used to wearing them to hide my scalp, as there was less and less hair.

When I didn’t wear hats, the biggest enemies of my thinning hair were the elements – wind and rain.

Then one incident when I was 22 changed everything. I was out to dinner with some friends, with no hat, a perfectly arranged head of hair, and hair spray to keep it in place.

When we left the restaurant, the wind blew and the rain poured and by the time I got to the car my hair was a wet thin mess. My (poorly) but carefully covered scalp was exposed.

That night, I wrote in my journal: ‘I want to feel joy and comfort in how I look. Every time I try not to care, I start caring. So after years of worry and self consciousness and my mind being focused on my hair, I pray that by buzzing it off and facing my head, and not trying to cover it up, God will just give me relief and happiness in who I am.’

Sure enough, I went to the bathroom and shaved my head. And I have never looked back.

Before that point, I’d worried about everything from being attractive to women to getting cast in acting jobs, and – with hindsight – it honestly turned out not to make any difference. I’d taken control.

Looking back, I can comfortably say that going bald is much harder than being bald. Whatever hair loss represents, it is difficult to swallow; it brings up thoughts of death, aging and a general loss of attractiveness.

Not to mention the way it’s easily joked about. That was all a lot to handle for a teenager and young adult.

Embarrassment, discomfort, frustration – they were overwhelming for me. But in the ensuing years, I found starting stand up comedy a huge help.

It was cathartic to get on stage and talk about the doctor’s appointment or kids laughing at my bald head when I took my hat off. There is something that happens once an audience laughs and all that discomfort turns into a connection and conversation with the crowd.

After performing my show, Diary of a Bald Kid, I’d get many audience members say, ‘Kevin, honestly, you look better bald. I can’t imagine you with hair.’

I am 39 now and a happily bald man. In fact, I like the way I look.

I look at that journal entry from when I was 22 and I understand that young man’s fears, so I am glad to be on the other side of the process.

At the end of the day, what I longed for was to not care. To just like who I was and like my body for what it was.

I have nothing against hair plugs, transplants, toupees, hats, Rogaine or anything else. Let a thousand flowers bloom but, for me, what I deeply wanted was to be my authentic self and I could feel in my heart that I was not comfortable.

Lately, my social media algorithm floods me with ads for hair transplants, hair loss drugs, and all kinds of experimental therapies for male pattern baldness. They always begin with some sort of hook like ‘We all know going bald sucks’ – and that is true. It did.

But choosing what nature intended was the best choice I could have made. I learned a lot about myself – mainly that I have a really well-shaped head.

I can’t imagine myself with hair now either. My mum agrees – and is really happy to have saved $10,000.

Do you have a story you’d like to share? Get in touch by emailing James.Besanvalle@metro.co.uk. 

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As I picked the photograph off the desk, my heart stopped.

There were seven of us in it – but I suddenly realised, within five years of it being taken, only three of us were still alive.

It was taken in the summer of 1989, at the end of an AIDS conference we had been attending. We had our arms around each other, all smiling and ready for a big night out.

The picture was old and a little blurry, but filled with life.

It was February 2025 and I was at the Bishopsgate Institute in London. I looked up at the others who, like me, were sorting through photos from the past 40 years of the HIV epidemic stored in the archive of the Terrence Higgins Trust.

In the calm and quiet, there were gasps of recognition of faces remembered, followed by a struggle to connect names, places and events.

We were young when AIDS began to devastate our generation – and all of us in the room that day had volunteered or worked for Terrence Higgins Trust in the early years of the epidemic. We had been fighting for our lives while creating a dynamic range of services supporting those who were getting sick and dying.

Now in our 60s and 70s, we’re helping preserve that history by sifting through photos, identifying the faces of those who led the community response to the virus and the prejudice, hostility, and fear that surrounded it.

So many faces which, unlike ours, had not had the chance to get old.

Many of us there that day had journeyed a long way to arrive at Terrence Higgins Trust.

As a gay teenager in the early 1970s, homosexuality was completely hidden where I lived in West Somerset, and only a little less hidden at the university I attended – Keele, in the countryside near Stoke-on-Trent. Which at least had the benefit of leaving me plenty of time to concentrate on my degree.

It was only when I moved to London in 1978 that I made my first gay friends, came out to my family and fell in love.

While I’d been a very happy teenager, coming out felt like my world changed from monochrome into glorious technicolour, vibrant and full of potential.

In the early 1980s, I moved to Amsterdam, the gay capital of Europe and an oasis of tolerance in an otherwise hostile world.

The bars and clubs were fabulous, but by 1984 the dark cloud of AIDS had begun to cover the sky, and I returned to London. I was angry there was so little concern about the growing number of AIDS deaths amongst gay men; and I realised, if anything was to be done, we would have to do it ourselves.

Terrence Higgins Trust was the first UK HIV organisation, set up in memory of Welshman and Heaven DJ Terry Higgins, one of the first to die from AIDS-related illnesses in 1982.

By 1985 Terrence Higgins Trust was able to advertise for two full-time members of staff. I was appointed office administrator, alongside Janet Green as counselling administrator.

We had two small rooms, rented by the week, in a ramshackle office warehouse, just off the Gray’s Inn Road. One room housed the Helpline and Buddy service – the other, everything else. Around 300 volunteers worked in groups focused on health education, social services, legal services, drug education, communications and fundraising.

The next eleven years were a rollercoaster ride of activism, passion, growth, success, failure, funerals, hopes raised and dashed, bravery, courage, determination, burn-out and resilience as we struggled to contain the ever-growing epidemic.

Then, in 1996, a new combination of drugs was shown to control the virus.  At last, we could look forward to living with HIV, however difficult that might be, rather than dying from it.

This was too late for so many people, though.

The breakthrough was announced in July 1996, in Vancouver, Canada. During that conference, Paul – the handsome, talented, man who ran our Hardship Fund – died in London. It was only eight months after he had first become ill. AIDS could be terrifyingly fast.

He was just 29 years old.

I led his funeral: amid the swirling emotions of sadness, loss and grief, there was also real hope for a better future.

Now, gathered in the Bishopsgate Institute that day in February, around the tables overflowing with photographs and memories, we are some of those who have lived to see that future.

In 2025, over half of people living with HIV take one pill a day. With that treatment, they can expect to live as long as anyone else, and cannot pass on the virus to others if their viral load is undetectable – even during sex.

The UK is committed to ending new HIV cases by 2030. Hard fought campaigns have succeeded in delivering effective medication to people living with HIV in some of the world’s poorest countries – although progress is fragile, as the recent freeze on US foreign aid has shown.

As we put the photos back into their folders, I knew this was still an incomplete archive of Terrence Higgins Trust. I imagined what it might feel like in ten, twenty, thirty, or more years’ time, when we’ve finally ended this epidemic and the stigma that so many people living with HIV still face.

We have come this far and achieved so much. One day we will be able to fully close the archive – but I will still remember the faces from the photographs of those we lost.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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