'I had a stroke at 24 and it made me forget my baby daughter's name'

Nicola was just 24 when she was left partially blind after a devastating stroke.

She was a healthy young mum with a four-year-old boy and a six-month-old baby girl. She was even sent home from hospital after doctors mistook her seizures for sleepwalking.

When she had her haemorrhagic stroke, surgeons were forced to operate on her brain and told Nicola that she had just a 50% chance of survival.

Waking up from that operation felt like a blessing, but she was left visually impaired. She also had to battle with the stigma associated with being a young stroke survivor and the ignorance of others.

‘It has been difficult and quite shocking at times,’ Nicola tells Metro.co.uk.

‘People are extremely shocked when I say I’ve had a stroke, and I get the usual comments about not knowing it happens to young people. In reality, it can happen to anyone – including babies.

‘I think it comes down to people not grasping that your brain controls everything. So no, reading glasses can’t improve my visual impairment.

‘Just today, someone suggested that looking at my phone may have made my vision worse.’

The physical impact of Nicola’s stroke has significantly changed her life. As well as her sight, she also has problems with memory, energy and emotions.

‘I would often forget the name of my baby girl for a long time. When people would approach me and ask, I would have to look to my mum for answers.

‘I also often have a really short temper, as I am really tired. Post-stroke fatigue, as it is known, affects all aspects of my life. I am unable to get my words out and tend to repeat myself – I lose track of where I am in a conversation.

What are the symptoms of a stroke?

The FAST test helps to spot the three most common symptoms of stroke. But there are other signs that you should always take seriously. These include:

  • Sudden weakness or numbness on one side of the body, including legs, hands or feet.
  • Difficulty finding words or speaking in clear sentences.
  • Sudden blurred vision or loss of sight in one or both eyes.
  • Sudden memory loss or confusion, and dizziness or a sudden fall.
  • A sudden, severe headache.

If you spot any of these signs of a stroke, don’t wait. Call 999 straight away.

Signs of stroke: FAST

  • Face: Can the person smile? Has their face fallen on one side?
  • Arms: Can the person raise both arms and keep them there?
  • Speech problems: Can the person speak clearly and understand what you say? Is their speech slurred?
  • Time: If you see any of these three signs, it’s time to call 999.

The Stroke Association

‘People who have no experience with a brain injury will say things like, “oh yeah, I get tired too”, but it’s difficult for them to understand that this is a whole different type of tired.

‘It has an emotional impact, for sure. I sometimes feel bad because my children bear the brunt of my fatigue. In the evening, I have an awful temper and I tend to shout at them, and then get angry at myself and feel guilty. It’s a vicious cycle.’

Nicola can no longer read unassisted, and she has to rely on assistive technology to help with her assignments at university.

‘I used to enjoy reading; I miss it,’ she tells us.

‘My visual impairments used to really get me down – having to accept that I am now a disabled person is very hard. Asking others for help is extremely difficult, as I always have been quite an independent person.’

Nicola says that interactions with others and social situations can be hard, particularly when people lack sensitivity or don’t know how to act around her.

‘When you first begin recovery from a brain injury, people tend to avoid you – they would often ask my mother, ‘’how is she?’’, with me standing right in front of them,’ says Nicola.

‘People have even joked about my poor reading skills, with one former employer calling me “stupid” in front of others, not understanding that my reading issues are because of damage to my brain.

‘Comments like this upset me, but also give me more determination.’

Nicola is now campaigning for more awareness through the Stroke Association’s Rebuilding Lives campaign. She wants there to be more education around the scope of stroke, who it can happen to, and the effects of brain injury.

‘As time goes by, people forget that this will affect me long term – I’ll always have a brain injury. Just because I walk and talk, does not change the fact that I have a disability,’ she says.

‘It has taken me many years to accept that I am disabled. However, the new me is a nicer, more empathetic person. I may have a brain injury for life and from a younger age than some, but I am on a journey of living with it and learning to cope with it.’

Lily was 19 when she had a stroke in her sleep, just days before she was set to receive her A-level results.

‘I was born with a hereditary blood disorder which increases the chances of stroke. I have to consider this when I think about having children, I don’t want to pass this gene on to them.

Doctors only discovered that Lily had had a stroke weeks later, and she has been left with problems with her balance and coordination and serious fatigue.

‘I felt useless and worthless after my stroke, I didn’t think stroke could happen to young people.

‘I felt like screaming “why is this happening to me?” These days, I get more headaches than I used to and whenever I do get one, I’m fearful. I worry, “is something more serious going on? Am I having another stroke?”

More than one million stroke survivors live in fear of having another stroke, and 79% are scared to go out alone, according to research by the Stroke Association.

One in five survivors said they kept their fears to themselves and didn’t talk to anyone. This is something Lily can understand.

‘I really don’t want my parents or my boyfriend to be as scared as I get either. Sometimes I don’t even tell them if I have a headache – I just take painkillers in secret.

‘It’s weird, I don’t want people to treat me differently due to my stroke but I still want people to know that I am a stroke survivor.

‘Even if I haven’t got some of the physical symptoms, life can still be very difficult and scary.’

Lily says that having a stroke has turned her life upside down, and the lack of awareness about younger stroke survivors makes it all the more difficult.

‘I’ve felt like such a burden to my friends as I can’t do what I used to and what a normal 22-year-old would be doing.

‘My balance and coordination are all over the place sometimes, which is very frustrating. I used to love playing football, but I can’t even do that anymore.’

Stacey woke up on New Year’s Day in 2014 and knew something was seriously wrong. She was just 23 at the time.

‘I felt like my face was drooping on one side and that my speech sounded funny to me,’ she explains.

‘I woke my then partner, now husband, Philip, and said to him, “get me an ambulance – I’m having a stroke!” He didn’t believe me and to be honest I started to doubt it too.

But an MRI scan revealed that Stacey had had a stroke, caused by a vertebral artery dissection – a tear to the lining of the vertebral artery in my neck, which supplies blood to the brain.

‘I actually lost the ability to walk, but still had the use of my arms. I remember the day I was asked to try and walk with the aid of a Zimmer frame – I said: “If you’re bringing that for me, I am not using it.”

‘After some careful negotiation, I agreed to try it but vowed that I would not leave the hospital still using it. And, true to my word, when I got home after nine days on the stroke ward, I had progressed to using crutches.’

Five years down the line and Stacey still battles with fatigue, she walks with the aid of a stick and still has problems with swallowing and short-term memory.

‘I am incredibly grateful every day for the help and support of my close family and friends,’ says Stacey.

‘One of the hardest things is that I feel that I can’t take my two-year-old to the park on my own. As soon as I let him down he runs and I can’t run after him, which is really tough. I just feel awful that I can’t do the same things with them.

‘I worry that my children miss out because I’m not the person I was before my stroke.’

Stacey doesn’t really talk about how she feels with her friends and family. She says it can be hard keeping everything to herself.

‘I’m aware that my loved ones see me coping and I look OK so they probably think I must be OK. So much of living life after stroke is hidden and every day is different.

‘People say to me, “gosh, you’re looking well – you don’t look like there’s anything wrong with you”. I say, “makeup covers a lot.”’

Stacey now attends support groups and is working to increase awareness about stroke prevention in the local community – because she remembers how many questions she had when she fell ill.

‘Because I was young when I had my stroke, I worried if I would be able to have more children and whether I would be able to get married. I even worried about how I would support myself. Would I be able to work? How would I cope financially?

‘I’m passionate about raising awareness that stroke can happen to anyone at any age. We want to give other survivors hope and show that there is life after stroke.’

The stats from the Stroke Association show that many stroke survivors are facing their recovery alone.

This leads to a bleak attitude to recovery with 88% of survivors afraid they won’t get better, and four out of five fearing they would get sent to a care home when they first had their stroke.

‘When you live in isolation, too afraid to leave the house and are unable to ask for help, your motivation can disappear and can leave you in a very bad place emotionally – feeling like a prisoner in your own home,’ says Juliet Bouverie, Chief Executive of the Stroke Association.

‘It takes a team to rebuild lives after a stroke. When stroke strikes, part of your brain shuts down, and so does a part of you.

‘Recovery is tough, but with the right specialist support, the brain can adapt after stroke. I’ve heard countless stories, and know countless people who, after many years continue to make remarkable recoveries.

The first step to eliminating fear is to ask for help and support. If you are a stroke survivor, this could mean speaking to your doctor or social worker to get some answers. If you know a stroke survivor, reach out, ask them how they’re feeling.

‘No one should have to live their lives in constant fear.’

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