Donna’s story

Elsie using her tablet
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Often, I wonder: “how did my life come to this?” Sometimes I ask this in exuberant spirits, supping bubbly in a star-studded gala in LA. Other times it could be whilst crying, unable to get out of bed; or feeling humiliated, as I ask some stranger on the tube to open my bottle of water…

So, how did my life come to this?

Well, when I was younger, I wanted to be a writer. Then I wanted to be an astronaut, then a writer, again. And then an architect, and then a writer (yet again!). As I got older, I explored a variety of roles: sound engineer, talent scout, public relations and journalism – I got fired from every single job.

I tried university, studied Media Studies, then Philosophy, finally graduating in Psychology. I attempted to join the FBI, unsuccessfully.

I realised, finally, that I was better off doing what I enjoyed, and was good at: writing, more specifically screenwriting. I joined the family catering business, which gave me fag money, flexibility to write, and the opportunity to work with my best friend, my Mum.

Things were going pretty well, then life threw a couple of curveballs. My mum suddenly died. Then, my brother-in-law, who I was extremely close to, also died. Then the next year, just when I was finally trying to get my life back on track, my health started to fail.

After my mother died, I threw myself into keeping fit, to distract me from the harsh new reality I faced. I was at the gym 7 days a week, doing yoga, weights, crossfit and boxing. About a couple of years later, my weights started to feel heavier, my punches got weaker. I couldn’t do handstands anymore and I started to get tired. A lot.

I finally decided to see my GP, when I was locked out of my house for a couple of hours – I was too weak to turn the key. I was referred to a neurologist, and well, the rest is history. In a strange way, I was relieved; my diagnosis tied up all my health problems that had been niggling me over the years – the cataracts at 30, the ongoing gastrointestinal ‘issues’, my hands locking, my speech sometimes slurring, the weakness.

Eventually, I cancelled my gym membership. I had tried doing some ‘adaptive’ training, but doing assisted squats in full view of the boxing ring I no longer used, was the final straw.

My health started to impact on my work in the family business and I had to leave. But instead of giving up on my life completely, I realised I had loads of time to reignite my writing career. I was able to go out, network and build up contacts.

As anybody who works in the film industry knows, it’s not what you know, it’s who you know. And finally those contacts are beginning to pay off. I still want to be an astronaut, though.

Patient Advice

How to manage the benefit process

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Donna: Eventually, some people with a neuromuscular condition may find the progression of the disease leaves them unable to work, and they have to start claiming benefits. Unfortunately, many find that simply turning up to the Job Centre with a letter from their Doctor, will not suffice. Often, the claimant will be required to attend an assessment by a ‘health professional’, who will grill them on all aspects of the condition, including topics that can be very difficult to talk about. Sometimes the claimant may be asked to perform physical exercises to prove their (lack of) strength. Lack of awareness about neuromuscular conditions is usually the root of these problems. Many have never heard of the different types, or the variability in symptoms from day-to-day. The general advice is to always describe your symptoms as they have been on your very worst day, otherwise you may have to go down the very frustrating appeal process.

My life with a neuromuscular condition in pictures

Donna horse-riding with Sis Annabelle in Mexico
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