Migraine sufferer and Faber Academy graduate Lydia Ruffles is publishing her debut novel ‘The Taste of Blue Light’ this Migraine Awareness Week (3-9 September). We asked Lydia about her experience of migraine and of writing. She also kindly gave us three signed copies of her book to give away – see below to enter our competition. Alternatively, the book is available here on Amazon.co.uk.
Lydia Ruffles was diagnosed with vestibular migraine and chronic visual vertigo in 2015 after five years of symptoms, tests, a misdiagnosis, and extended periods of being unable to work.
Before becoming a full-time writer a year ago, Lydia was a senior communications manager at a large city firm. She counts herself as fortunate to have had excellent support from her old employer – including adjustments to her workplace, flexibility on working hours and location, and great personal support from her bosses and team. Ultimately migraine still affected her ability to do her job as well as she wanted so she decided to resign.
“Even with the great practical and personal support I got from my old employer, migraine made work very hard to navigate. It must be almost impossible for sufferers who are not getting any help. With so many days and jobs lost to migraine attacks, what we need most of all is more funding for research into causes and cures. This would benefit sufferers and employers alike.”
Lydia Ruffles, author of The Taste of Blue Light
What has been your experience of migraine?
I had a one-off migraine episode when I was 19, which was so excruciating that my flatmate found me looking for a corkscrew to make a hole in my head to let the pressure out. About ten years later, I started experiencing extreme vertigo, head pain, jumbled speech, dissociation and derealisation, light/sound sensitivity, brain fog, and various other symptoms. It took five years – via numerous visits to specialists, medical tests, a couple of misdiagnoses, various medications, and extended periods of being unable to work or function normally – before I was diagnosed with vestibular migraine and chronic visual vertigo, which my doctors think was triggered by a virus I caught while travelling in South America. I’m now at the point where I’m managing it fairly well but can’t rule out future flare ups.
What impact has this had on your life?
I’ve had to put my life on pause more than once and totally reconsider my career path. Before I began writing full-time, I loved my previous role as a senior communications manager for an international firm but, despite lots of support from my employer, it became unsustainable with migraine. On the positive side, migraine has improved my creativity, patience, and empathy.
What has helped you deal with migraine?
Getting diagnosed! The things that have made the biggest difference since I was diagnosed in early 2015 are: vestibular rehabilitation therapy with the incredible team at Guy’s Hospital; taking magnesium and vitamin B2 daily, which my neurologist advised me have good efficacy; reducing my reliance on painkillers because I was getting severe medication overuse headaches; being able to work flexibly; avoiding bright light even if it means wearing sunglasses in doors; and knowing my triggers. Regular sleep patterns also help but as an insomniac I struggle with that. I also tried various prophylactic prescription medications – I didn’t personally get on with them but would encourage people to try them if their doctors recommend it. I still take medication sometimes for vertigo, plus painkillers when I need to. Talking with other migraine sufferers is also invaluable to me – whether in person or online.
What role has writing played in dealing with your migraine?
Writing was a lifeline during a particularly bad year when migraine meant I couldn’t work or function normally – it gave me an outlet that I could call on in moments when I felt well enough to focus but not well enough to go out and do things. I wrote the first draft of my book in bed and in hospital waiting rooms.
How has migraine influenced your writing career?
Although I’d done a lot of business writing in my job, ‘The Taste of Blue Light’ is the first prose fiction I’d written since school. I didn’t start writing with the intention of trying to get published – I just needed something positive and creative to do. Although it’s not a story specifically about migraine, I don’t think this particular novel would exist without my migraine experience. I’m not sure I’d have got round to writing a novel if I was still on the career path I was on before because I loved my old job and it also required a lot of my time.
What was the inspiration behind ‘The Taste of Blue Light’?
The first seed of the idea came from looking at some paintings at Tate Modern (Rothko’s The Seagram Murals – big, bold canvases with lots of red and dark colours) while I was in what I now recognise as the aura phase of migraine. The hallucinatory experience that followed formed a pivotal scene in the book: a story told by a 17-year old called Lux Langley whose life unravels after she suffers a mysterious blackout while she’s doing an internship at a gallery and begins dreaming in red. Lux’s issue turns out to be something totally different to my own but the first line – ‘I will find the old Lux and when I do I will climb back inside her and sew myself into her skin so I never get lost again ‘– was born out of my own five-year search to get a diagnosis for my illness. I also drew on my education particularly with regards to acting, my experiences of being a teenager, and things that are going on in the world now.
How closely did you draw on your own experience for the novel?
The themes in the book – mental health, invisible illness, creativity, privilege, friendship, modern threats, first love – are things I’m interested in and have experience with but it’s personal rather than autobiographical. So some of the situations the main character Lux finds herself in are ones I’ve been in (from time in an MRI scanner to the parties to acting lessons) but a lot of it is based on imagination too so, ultimately, it’s fiction not fact.
Did you do any additional research or speak to others with migraine?
Lux doesn’t have a migraine diagnosis (she experiences head pain and other symptoms as a result of trauma) so I didn’t do specific research about it but I’ve spent a lot of time in online forums so I know some of her and my experiences are consistent with other people’s.
Did the school setting (Richdeane) reflect your own educational experiences?
I’ve spent a lot of time in academic institutions in one form or another. I was educated at seven schools, three universities, three drama schools, three language schools, two professional institutes, two online schools, and one creative writing academy – there’s a probably a little of all of them in Richdeane but I took a lot of artistic license too. I found one of the private schools I went to particularly suffocating and I think that’s reflected in some moments in the book.
Friends are a support for and part of the experience of the protagonist, Lux Langley – does that reflect your own life and experiences?
My family is endlessly supportive, as are the vast majority of my friends and old colleagues. My close friends understand that I sometimes have to cancel plans. They’ll always check whether I’m ok to eat certain things if they’re cooking and are also protective about shielding me from triggers – flashing lights are particularly disastrous for me so they’ve been known to throw scarves of my head in the event of unexpected strobe lights. It can be hard to maintain friendships under the strain of prolonged health problems (whether that’s migraine or something else) and if I’m honest a few friends have fallen by the wayside but that’s ok because I’ve also met new people along the way.
What have been your main sources of support and help in dealing with migraine?
Like many people with migraine I’m hungry for information about it so I look everywhere from charities such as The Migraine Trust to my neurologists and GP. I’ve also found social media great for connecting with other people with the same diagnosis and I keep an eye out for new studies and scientific information because I like to know facts and figures as well.
Do you think there should be more support and greater investment into migraine?
Migraine affects millions of people on a daily basis, and costs employers’ and taxpayers’ money when people are unable to work because of it, so on both an emotional and pragmatic level it’s clear to me that we need more funding to research causes and cures. That said, I’m realistic about the resources and time required for R&D so shorter-term activity is also critical – such as educating employers on how they can support employees with migraine.
Enter to win a signed copy of ‘The Taste of Blue Light’
A coming-of-age novel peppered with dark humour and darker secrets, ‘The Taste of Blue Light’ (click here to find the book on Amazon.co.uk) is a highly personal exploration of obsession, invisible illness, first love, synesthesia, and modern threats. Written in between migraine attacks and MRIs, the novel is inspired by Ruffles’ own health and creative experiences. It is a stunning depiction of a young artist battling her broken mind.
We have three signed copies to give away. Three winners will be drawn at random on Thursday 28 September.
Terms: Entry is open to UK residents only. One entry per person. Entry closes at 10am on 28 September 2017. Please do not enter for another person, unless you have their explicit permission to share their details on their behalf. We will use a random number generator to select the winners.
Update: Entry has now closed. The winners were Ursula, Sally and Maggie.
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