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musicvsms-blog · 4 years

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This week has been MS awareness week, so I have decided to bite to the bullet, and open up about my experience of living with MS – which, for a number of reasons, is something I have never really spoken about. However, having had some time to reflect while in lockdown, I believe that living with MS for the past 10 years has stood me in good stead for staying positive in more difficult times.

I was originally diagnosed in 2010 after a year of tests. I was 25, had just moved to London in a time of recession, and finally got a dream job working as a concert promoter. Just a few months into the new job, I started suffering from headaches, and then numbness in my arms and legs. I knew something wasn’t right but didn’t want to let it get in the way of my new career. While I waited to be put through the NHS system, I looked at alternative ways of managing the uncomfortable sensations, and would go for acupuncture in my lunch break, which alleviated the symptoms. I think the first time that I felt scared was when I went to see a neuro-physio who knew my Dad. She asked me to close my eyes, and put a set of keys in my hand. She then asked me what it was but I couldn’t tell her. I had lost all fine sensations in my hands.

After numerous appointments at Moorfields, and Queens Square – eye tests, scans and a lumbar puncture – I was told I had Multiple Sclerosis. It was incredibly hard to get my head around as no one in my family had ever had it: so why me? The causes are still unknown. The consultant at the time suggested I started treatment, which would be a daily injection, but I decided that I would try to manage it without. I was young, had caught it early, and didn’t want to be on medication for the rest of my life.

I told a few people at work and my close friends at the time, because they knew I was going for tests, but I kept it pretty quiet. I needed to get my head around it, and, in hindsight, I was probably in shock for a long while. The only thing I knew of MS was that some good friends had lost their mum to the disease when they were teenagers so was worried about how best to tell them. Perhaps I didn’t want to be a burden. I definitely didn't want the disease to define me or get in the way of my dreams, or for people to think I wasn't capable. Something I felt I needed to especially prove, being a (young) woman in a very male dominated industry!

For years I lived symptom free (or maybe I had just become so accustomed to certain strange sensations that I could ignore them) and wondered whether I had been misdiagnosed. I went on to achieve more than I could have ever dreamed of in my career, working with some amazing artists, and seeing them go from playing their first shows in the back room of a pub to selling out arenas. The day after my 30th birthday I had an interview with AEG Live, one of the world’s leading companies in live entertainment, and was offered a job and the title of Vice President of Live Music. Having spent years working all hours for no money, and almost giving up on numerous occasions along the way, I was finally appreciated. I launched Goldenvoice in the UK and promoted tours for artists including Sam Smith, Ellie Goulding, The xx and alt J amongst others. An incredible job but since my diagnosis I always knew it wasn’t sustainable. Fatigue is a common symptom but I would just put being tired down to the late nights and busy lifestyle!

Then, two years ago, I suffered a relapse that could only be as a result of the MS. I couldn’t feel my feet which also affected my concentration at work. It was a particularly busy time, as we had just launched a new festival – All Points East – which I was booking, alongside promoting tours, being out at shows most nights and dealing with personal issues. I went for more scans and was told that they were showing more lesions in my brain and spine than the last scans eight years prior. I didn’t take any time off at the time though; it’s hard to explain that ‘I can’t come to work because I’ve got numb legs!’. Booking a festival had been my ultimate dream and I had booked a lot of my favourite artists to play, so I wanted to see it through, but knew things needed to change after that.

Although I may have been living in denial for all those years, I do believe that the diagnosis spurred me on to achieve more in my career. However, at this point, I felt ready for the first time, to put my career on hold and look after my health. I finally accepted that I was living with a disease and that I needed to take control of it or it would take control of me.

Having worked in the music industry since the age of 18, working my way up from putting on mate’s bands in pubs in Brighton, I left my job not knowing what was going to be next. Some people thought that was a brave decision (maybe stupid) but I am used to taking risks, not knowing what’s next, and going with my gut had gotten me this far. Although I loved parts of the job, I knew I couldn’t keep working at the same pace and my workplace wasn't able to offer me the flexibility I felt I needed at that time. I had been working in a basement office with no windows, and when reminded by the consultant how important it is to take a high dose of Vitamin D, I thought: why not get the real thing, so headed for sunnier climes.

I had never travelled, as I had started working straight from school. I had an A-level in Spanish and always loved the language and culture, but not spent much time in Spain since. I decided to use the time to improve my Spanish, and headed to Barcelona where I had friends, and where the skies are always blue.

I had only recently passed my driving test, and had heard that you need to drive 10,000 miles before you’re a competent driver, so I picked up my car from London and then drove around Spain and Portugal. My oldest friend was working on a retreat in Portugal, so drove to her via Barcelona, Valencia and Andalusia, and then back up to northern Spain. I met my mum in Santiago De Compostela and walked a bit of the Camino – something I’ve always wanted to do and I plan to do the whole thing one day. I caught the ferry back, just in time for All Points East at the end of May, with 9,988 miles on the clock and only a few bumps and scratches!

During my time off, I realised that music is still my passion but I need to do things differently. I am back working for AEG, but on my own terms, working across the festivals. My old boss was hugely supportive and offered to bring me back in as a consultant so I can work from anywhere. I am back in London for now, but try to get away for some sunshine during the winter months. I hope to one day be living in the hills in Spain but for now London is my home, and I am feeling hugely grateful for this amazing weather we’ve had recently. I am back doing Spanish lessons with my teacher from Barcelona which wouldn’t be possible had Zoom not become the ‘new normal’.

I am not currently on treatment, despite being advised to by the consultant. It’s hard to seriously consider taking drugs when you feel perfectly healthy. I am always learning about diet and alternative therapies, and feel lucky enough to have a support network of amazing people, and the funds to do it my own way. Who knows what the future holds, but all I know is what I can do on a daily basis to stay healthy and keep my body and immune system strong for now.

I have learned so much from living with MS. It has taught me how to cope in times of uncertainty, as we all are now, and I feel grateful for that. It’s not easy, and there are challenging days, but all you can do is focus on what is within your control and take each day as it comes. I feel positive that I will get through this and beat MS. We will all get through these difficult times and I believe it will only make us stronger.

#livingwithms #multiplesclerosis #msawarenessweek

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