MS patient produces book to help people with similar conditions

Having felt so let down by the lack of support and guidance available to people with Multiple Sclerosis (MS), podcaster and campaigner Jessie Ace has now produced a book – My Enabled Warrior Tracker – in the latest step on her crusade to empower those with chronic conditions. NR Times learns more.

Diagnosed with MS aged only 22, having just graduated from university and – with a book deal already secured – about to embark on a career as an illustrator, Jessie Ace knows only too well how devastating and scary the outlook can seem.

“I thought my world had ended, but the worst part of it all was not knowing where to turn, or who to turn to. There was a total absence of information about what I should do from that point onwards,” she recalls.

“My doctor told me to Google MS as I knew nothing about it. There was no advice, no recommendations, nothing.”

One of the issues Jessie experienced – and has since realised is a particularly prevalent problem – was keeping track of her symptoms.

“You might have appointments every month or every three months, and you’re expected to recall how you have felt during that time, how your symptoms have presented,” says Jessie, creator of the acclaimed DISabled to ENabled podcast and Enabled Warriors online group.

“You’re relying on recall bias, which is natural, as you probably won’t be able to describe exactly how you have been during the past several weeks. But that then affects what happens from then on.

“There is no guidance available from the NHS, nothing to tell you about, or support you with keeping, records or a log of what you are going through, even though that kind of information can be vital, especially when you often have to see a multitude of doctors.

“I tried to keep track of my symptoms, so would write things like ‘7am: right hand tingly’ or ‘11am: left leg numb’, but came to realise this wasn’t helpful as it didn’t include any information about physical exertion, or hydration, or any additional important factors.”

The creation of tracker sheets – building on Jessie’s graphic design roots – were the first step in Jessie’s solution.

Designed to help track and manage symptoms, this information can then be plotted onto a graph to give doctors an accurate picture of the time since the last appointment.

This is then supplemented with room to document hydration goals, an appointments calendar, feelings and mood, all underpinned with Jessie’s characteristic positivity and empowering statements and mantras.

‘My Enabled Warrior Tracker’ was born.

Having received a global reception since its launch in June, with support from MS charities, doctors and individuals with the condition, Jessie is now preparing to sell it via Amazon.

“We’ve had a fantastic response, we’ve sold copies in Australia, Canada, the US, all over – we even had a message from the Russian MS Society, it’s been mind-blowing,” says Jessie.

“It’s not just for people with MS and can be equally relevant to many conditions. Hearing from people who have found so much benefit in it is so powerful. I had a message from one person who said they had been putting off going to University because of their diagnosis and worries about how they would cope, but through having the book they are now going to go for it, and that’s amazing to hear.

“As well as being able to keep track of things, it was also very important to me to have the empowering reminders in there. There’s room to practice gratefulness and make goals, and to remind our enabled warriors that they are strong and they can do this.”

The psychological benefit of being able to write feelings and emotions within the book is an equally important factor, says Jessie.

“You can get whatever is in your head out onto the pages. Things can manifest and be made so much worse, whether that’s because you don’t feel great on that day, or because someone has made judgement because you’re using a disabled parking space when you seemingly look fine, things like that can have a big impact.

“Our mental health is so important, particularly at the present amidst the pandemic, so we need to share what we are feeling, even if that is only by writing it down and sharing it within the book.”

With her podcasts continuing to gain momentum, keeping Jessie busier than ever, the long-held ambition of writing the book was made possible by lockdown.

“It has been a very difficult time, with many people with MS having to shield for a time and many still choosing to stay at home as much as possible, but for me, lockdown has given me the opportunity to produce My Enabled Warrior Tracker, and I’m very proud of it,” she adds.

“It’s especially worthwhile when you hear from doctors, nurses and people living with chronic conditions how needed it is, and the benefits it brings.”

• To buy My Enabled Warrior Tracker, visit www.enabledwarriors.org/book