Seeing the look of confusion pass over my five-year-old son’s face was heartbreaking. ‘Mummy, why don’t you want to play with me?’ he asked.
After a long and trying day, I’d cracked and told him I didn’t have the energy to do a puzzle. In fact, I didn’t have the energy to do anything and just wanted to be left alone.
Noah didn’t understand what was going on. I looked like Mummy, but I certainly wasn’t acting like her. Why was this Mummy constantly sloping out of the room to collapse on the sofa or snapping at him to be quiet?
Where was the Mummy who splashed around with him and his eight-year-old brother, Dylan, at the swimming pool? Who tickled him and pushed him on the swings? The one who had been so excited meeting Santa with him just a few days before?
In fact, where was Mummy at bedtime? Sometimes she seemed to already be in bed herself.
I hadn’t been the Mummy my sons knew in a while since, aged just 44, I had a stroke that changed the shape of our family life for ever.
As well as robbing me of my confidence in my body, it took away so much more, including the fun, carefree ‘me’ that my boys and husband loved – and I still don’t know if she’ll ever come back.
It was December 2022 and I’d just finished an evening spin class at the gym. Life with my husband Darren, then also 44 and an electrical engineer, and our two young sons was hectic. I’d just been promoted in my high-powered HR job, and now the Christmas holidays were nearly upon us.
Suddenly, walking through the gym’s reception area, I felt my right arm go floppy and my face go numb and tingly. I tried to move my right arm with my left, but it was as if it belonged to someone else. It felt like an out-of-body experience. I was terrified.
Nicola Shaw with husband Darren and their two sons… she says seeing the look on the boys’ faces when she said couldn’t play with them was heartbreaking
Nicola says an MRI scan finally showed that she’d had a minor ischaemic stroke, caused by a blood clot in the frontal lobe of her brain
I sat down in the reception area to see if the symptoms would subside. As the feeling started to return to my right side, I decided the best thing to do would be to drive the ten minutes or so back to our home in Ballygowan, Northern Ireland.
I know… even I can’t believe I did that. I even managed to return a work call on the way, but my tongue felt swollen and sluggish.
‘Are you OK, Nicola?’ my colleague asked, as I struggled to find words.
No, I wasn’t OK. I was petrified. I’d had migraines before, but never anything this bad. I was only 44, fit and healthy: I’d recently lost five stone in weight and was feeling fantastic.
That I was having a stroke didn’t even cross my mind. Only old people have those… don’t they?
Gathering myself, I phoned my friend, who is a nurse, when I got home. She told me in no uncertain terms to get myself to hospital right away. Ten minutes later, my mum, who luckily lives on our street, had come over to look after Dylan and Noah and Darren drove me to the Ulster Hospital in Dundonald.
I had a CT scan which came back clear for any bleeding in my brain or blockages. The only possible explanations doctors could come up with were a particularly severe migraine, or, unbelievably, a reaction to the HRT patches I’d started using recently.
Three days later, an MRI scan finally showed that I’d had a minor ischaemic stroke, caused by a blood clot in the frontal lobe of my brain. It’s the most common type, accounting for 85 per cent of cases in the UK. I was so glad to finally have a diagnosis, but it was incredibly frightening. What would life be like from that point?
My parents stepped up to help look after Noah and Dylan while I began my slow climb back to recovery. While I had slowly regained some mobility and my speech was improving, my fine motor skills – being able to use cutlery properly or fasten a bra – were beyond me and I was completely exhausted. Just talking to the doctors or Darren would wipe me out.
I was desperate to see the boys, but I didn’t want them to be frightened of the hospital – or me – but what terrified me the most was how on earth I’d be able to look after them once I was discharged. I didn’t know if I could look after myself, let alone two young and energetic children.
After five days in hospital I was thrilled to be discharged in time for Christmas and the boys ran excitedly into my arms, while panic surged through me.
Darren and my parents were doing all they could, but it felt as if as soon as I left the hospital, the NHS had washed their hands of me. There was no mention of aftercare or outpatient support; I had a niggling feeling that the hospital just wanted to empty its beds for Christmas. My doctors’ surgery, too, was closed until the New Year.
Nicola was discharged from hospital in time to be home for Christmas, but says she’s never felt so vulnerable, with no mention made to her of aftercare or outpatient support
Things will never be the same as they were, but they’re looking up, says Nicola… she’s accepted that this is her ‘new normal’
I’d never felt so vulnerable. My life had shrunk overnight. I’d gone from travelling all over Europe with my job to not being able to leave the house without having a panic attack.
Then there was the fear and confusion in my boys’ eyes that nearly destroyed me. What had happened to their Mummy? Where was she?
I had lingering speech problems and mobility issues on my right side, plus with memory lapses and brain fog that made following a simple conversation incredibly difficult.
I was desperate to go back to my old relationship with them – but sometimes their chatter and noise was so unbearable I had to physically remove myself from them. I would shout at them to be quiet, immediately hating myself when I saw their disappointed, confused little faces.
I felt – and still feel – that they deserve so much more.
The mum guilt was harder to bear than the physical symptoms – and the terror that I could suffer another stroke. I’d constantly reassure Noah and Dylan of how much I loved them and explain that Mummy had a problem with her brain that made her act differently, yet I was becoming aware of the Mum-shaped hole forming in so many of their childhood memories: the class assemblies I missed, the family parties I simply couldn’t handle.
Darren, too, was a victim in this. We’d been proud of how equal our relationship had been before, sharing parenting responsibilities. Now, he had the burden of looking after the boys almost entirely alone – while also looking after me.
Fortunately, his employers were generous in giving him flexible hours, but he’s had to sacrifice so much of what he used to enjoy, like time to himself and going to the gym.
I often hide how much I’m struggling from Darren. He has so much to worry about already and I don’t want to add anything to his already too-full plate.
Financially too, we’ve struggled. My sick pay lasted for only six months but it took until February 2024, over a year after the stroke, for me to be ready to return to work.
There have been days darker than I could ever have imagined, but we’ve got through it together and are celebrating our 22nd wedding anniversary this year.
In September 2023, doctors found that I had a patent foramen ovale (PFO) – a small hole in the heart that as many as one in four of us are born with, and I had a procedure to close it. We can’t be 100 per cent sure, but my GP believes that the PFO was what caused my stroke.
While the obvious symptoms – the sagging in my face and lack of mobility in my arms – subsided after a few months, the invisible effects are lingering still, almost three years on. Some days I feel like I’m just existing. I’m battling intense fatigue, no matter how much I sleep, meaning I rarely socialise in the evenings.
But still, nobody has ever been able to tell me if this is as good as it’s going to get; that this is my new normal.
Things will never be the same as they were, but they’re looking up. I may not be the Mummy I was before but I’m doing the best I can to be a good Mummy and wife and colleague.
It’s been a long journey – and it’s not over yet – but I’m here, I’m healing and I’m hopeful.
Call the Stroke Support Helpline on 0303 3033 100 for information, guidance or a chat. For more information visit www.stroke.org.uk
As told to Kat Storr
