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Becky, 37

June 7, 2018

"Organising this protest is the most important thing I've done in my whole life. I had a real sense of being part of something bigger."

Becky moved from the south coast of England to Manchester when she was 18. She studied English at the university there, and dreamed of finding a job in advertising after graduation. She and her long-term partner met on an internet dating site, but it wasn't just him who captured her heart. Becky was charmed by the good folk of Manchester and she decided to put down roots, having fallen in love with the city itself and all its people. She still lives there today, almost twenty years later.

When it became apparent that making a success in the advertising world first meant doing a lot of work for free (something that she couldn't afford to do as a recent graduate), Becky took a temporary job in a call centre for a year and then found herself working in HR for a large organisation. 

It was around the same time that Becky first became ill. She was working full time and studying part time for a master's degree, whilst training four times a week with the Cheshire Women's Rugby team, of which she was the captain. This would be a lot for anyone to take on, and when Becky caught an ordinary virus, she never quite recovered.

"The word 'tired' doesn't do it justice," she says. "It was sheer exhaustion. I started napping all the time; after work, after rugby practice, after being out and about for just a few hours."

She went to her GP and described the symptoms, which in addition to the exhaustion included headaches, pains in her body, vertigo, cystitis and impairments to her basic cognitive functions. Her GP referred her for blood tests and various other assessments, and twelve months later, she was diagnosed with ME (Myalgic Encephalomyelitis).

"I was really lucky to have a diagnosis so quickly. My GP was excellent and knew all the signs. For some people, a diagnosis takes 20 years."

The symptoms got worse for Becky, and after a few years, she could sometimes barely walk. At her worst, Becky's partner had to wash her hair, and if she took a shower, she'd be panting and completely out of breath by the end of it. She continued to work full time, but had to adapt her routines to allow herself plenty of extra time to do anything.

"I had to stop and rest after brushing my hair, driving to work, walking a short distance. Everything took so long."

Fortunately, her employer at the time was very supportive. She was assessed by the occupational health team, who allowed her to reduce her hours and gave her a key to the first aid room, where she was allowed to rest if needed. She couldn't afford to stop working altogether, or even reduce her hours too much, but managed to negotiate having Wednesday morning off in order to break up the week.

In other jobs, Becky wasn't as well supported. One employer complained about her having 'an attitude problem' and wasn't at all flexible about needing time off for appointments or for her illness. 

Becky took a new job, which involved occasional international travel and she says it was very stressful. It was after being taken to hospital, having collapsed at work and becoming temporarily paralysed down one side of her body, that Becky had to reevaluate things. 

"I was lying there in a hospital bed, and I knew something had to give. I started to wonder if all the stress of working and pushing myself was worth it when my health was suffering as a result."

Becky quit the job she was doing and became a freelance copy writer, utilising her degree skills and drawing on what she knew of the advertising industry. People had asked her at the time, "How do you just 'become' a freelance copy writer?" (I am also curious to hear the answer...) but she very modestly tells me that it was as easy as it sounds, especially when the alternative was no longer an option and she needed income.

"You set up a website, get some business cards and tell people you're a copy writer." Not for the first time, I am in awe of Becky's tenacity and determination. Is there nothing that this woman can't do?

The flexibility of working freelance was perfect for Becky. She got to manage her own workload, organise her own time and look after her health when she needed it. She's in a position now when she can recognise when she's doing too much and when she needs to slow down. She has to consciously avoid emotional or mental stress, and has learnt to say no when she needs to.

Despite this, Becky is passionate about fighting to improve the lives for people with ME and chronic fatigue syndrome. She watched a documentary called Unrest, in which the film maker, a fellow ME sufferer, provides a frank and honest account of living with the condition. At the end of the film there was a call to arms, encouraging people to organise rallies and protests in order to get more funding put into research.

Becky decided to organise a protest in Manchester as part of the international 'Millions Missing Campaign.' The concept of the protest, which takes place around the world on 12th May (ME awareness day), is to lay out pairs of shoes to represent the millions of ME sufferers who are missing from their lives. Attached to the shoes is a label, documenting the person's name, how long long they have been ill and what they miss doing. (You can see why I was keen to write about this!)

Knowing that all the organisation was a lot to take on, Becky had to start early, and reached out to other people for their support.

"It's sad that the people organising these protests are fighting for themselves, but they're really ill," she says. "I used social media to get the word out, and I met loads of volunteers who wanted got get involved."

She created a Justgiving page to raise money for protest materials like signs and banners, and her team of volunteers were busy attaching labels to shoes in advance of the big day. Many people sent their own shoes in to accompany their label, but the rest she had to source from local charity shops. 

"At the time, I thought that If I had 30 people turn up on the day I'd be happy. In actual fact we had about 300."

The Manchester mayor, Andy Burnham, turned up to show his support, and they received coverage on local radio and news stations. In addition to the money raised, she has established contacts in local government who are open to having conversations about how to invest money into further research. 

"Everybody was really moved when they read the labels on the shoes. It dawned on them what they take for granted. The biggest thing that ME sufferers miss is going work. They're not a bunch of work-shy people. They miss their careers."

Other things that came up repeatedly was missing the ability to go for long walks, or to go dancing, to exercise, or to have the freedom to do something without planning.

When I asked Becky what she hopes to achieve through campaigning and fundraising, she says she is aiming high, and intends to ask for more than she knows is realistic.

"There's no point holding back about what we want. If you ask for one thing, it's easy for people to just say no. If you ask for ten things, you might get one or two." This is such an inspiring message, I think to myself. How many times have I been shy about what I want, or what I think I deserve, and have ended up being disappointed? Becky isn't shy about what she wants at all. And why should she be?

What she and her fellow campaigners want is more money being spent on research, because so much is unknown. She wants people to have answers about their own conditions so that they can make informed decisions about how to look after their own health. Organising this rally, getting the word out there and raising awareness, is just the first step.

"Organising this protest is the most important thing I've done in my whole life," Becky says towards the end of our conversation, and I can hear in her voice how passionate she is about this. "I had a real sense of being part of something bigger."

"My personal dream for the future is to be able to lift weights and go surfing again. That's what I want to see when I look ahead into my future. But I also just want to be happy. That's not a lot to ask is it?"

To read more about the condition Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, visit the ME Action website where you will also find details about the Millions Missing campaign. 

 

You can find information about the documentary Unrest, by following this link. It is also available to watch on Netflix.

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