An ‘ooooff’ feeling, like something wasn’t quite right. That’s how Welsh TV presenter Daf Wyn describes the spinning sensation that came on in March 2021. He’d wake at night, room whirling, and he’d get it when crossing the street too.
It turned out he had an ear infection. But after treatment the lightheadedness lingered, and other symptoms started to kick in. He felt pressure in his head like his brain was in a vice. Then came the slurring.
It happened live on air, making him struggle with his words as he wrapped up a segment. Viewers may have missed it, but it felt obvious to Daf Wyn.
He called his GP, and a week later was still in hospital undergoing tests and scans. Multiple brain lesions and a lumbar puncture led doctors to diagnose active relapsing remitting MS.
The news took him to a difficult place as he assumed he faced a rapid decline. He knew little about MS, so started to read up from trusted sources while resisting the urge to google.
He got a boost from knowing he’d caught his MS early and finding there was a choice of treatments. It’s something he’s painfully aware was not always the case years ago.
As someone used to TV, Daf Wyn felt driven to record his MS journey, getting the go ahead from S4C to share his story in a documentary - Drych: Byw gyda MS (Mirror: Living with MS). The filming helped. It felt very cathartic, and probably made it easier for him to come to terms with his diagnosis. He’s wary though not to over-egg this. It is still early days.
Daf Wyn opted for Lemtrada, also known as alemtuzumab, which involves two infusions, a year apart. It meant that within some three and a half months of symptoms, he started his first treatment.
When I catch up with Daf Wyn a year later, he is in a very different place. He’s completed his last round of treatment, been back at work for a while now and welcomed his newborn son.
Daf Wyn’s cautiously optimistic, but there’s some touching wood because as he says, “you never know what’s around the corner.”
He still has the occasional bout of lightheadedness. He gets tired but there is a baby in the house after all, and Daf Wyn finds that the broken nights are usually fixed with an extra 20-minute lie in.
Before MS, Daf Wyn lived life to the max, squeezing in as much as possible. Now he’s more pragmatic. He still does all those things, but he’ll take his time now. He listens to what his body tells him.
He went back to work three weeks after his first infusion.
And I’m glad I did because it gave me that sense of normality once again, and not waking up and thinking, ‘Oh, I’ve got MS’. It’s a case now of remembering occasionally that I have MS if I have gone a bit over the top.
During the pandemic, he did a lot of filming outside on location which helped reduce his exposure to Covid-19. He cut down his work travel and returned to our screens for live TV appearances.
He started exercising after allowing time to recover from his infusions. He smiles as he claims not to have massive pecs or abs, but finds exercise clears his mind and gives him time to think about other things. A new exercise bike takes care of the rainy days, otherwise he’s out running. He’s made one adjustment – sharing his location with his partner just in case he trips when he’s jogging. He jokes that having a phone bouncing around, weighing him down, is a bit annoying – but a minor thing really.
Our conversation then turns to language, and how speaking with his MS nurse in Welsh helped him get his head around his diagnosis.
She was explaining things to me, and it almost felt clearer to me – oh ok so that’s what’s happening.
It meant that when he voiced his fear that he may die from MS, she was able to reassure him in words that carried real meaning: "Erbyn hyn, y’ ni’n disgwyl i bobl farw gydag MS, ddim o achos MS," which translates as “by now we expect people to die with MS, and not because of MS.”
That one sentence has stuck with him since. Words are powerful. And for Daf Wyn getting used to his MS, his mother tongue helped him understand what was going on in his brain and spinal cord, sooner. It gave a certain nuance that was otherwise missing, and a way of processing all the medical information that changed his life.
And on that note, diolch, Daf Wyn! Or thank you for those who don’t speak Welsh. You have made things clearer for us too.
