Real Life: The Power of Words with author Hannah Pearl
As she celebrates the launch of her latest book, Daisy's Christmas Gift Shop, Cambridge author Hannah Pearl says writing brought light into her life at the darkest time
Imagine getting an invisible illness which doesn’t show up in a blood test and currently has no known cure.
Then find out that around a quarter of a million people in the UK are in the same position, and that 25% of sufferers are so ill that they are housebound or even bedbound.
That’s what happened to me.
I can pinpoint the exact moment that life began to change drastically. I stood at the traffic lights when it felt as though if I didn’t hold on to my son’s buggy I could have floated away. Then the lights changed, the feeling passed, and I began to cross. I put it out of my mind and carried on.
I was a busy mum of two. We had moved to Cambridge when I was pregnant with my daughter, nearly 12 years ago, and I’d thrown myself into life in the city. We’d visited nearly every playgroup within walking distance, eventually helping out at several. I was happier than I had ever been. I’d even started juggling the school and nursery run in one of those amazing cargo bikes that are such a staple of life in Cambridge.
Over the course of a few weeks I began to experience extreme nausea and dizziness. Various trips to the GP followed and I was diagnosed with viral labrynthitis. Usually this resolves itself. We began a countdown. I’d been feeling awful for a month, so there could only be a maximum of a few weeks left before it passed.
But then several months passed and I was no closer to feeling better. Eventually, after multiple tests and visits to specialists, I began to realise that my recovery would be slower than I’d hoped. I saw a physio who taught me some Vestibular Rehabilitation Exercises and slowly I began to be able to hold my head upright and walk again. Slowly I got used to this new wobblier life and we muddled through, with the help of family and a lot of kind friends looking after my children when I couldn’t.
Then the labrynthitis came back. This time it was accompanied by a level of fatigue that I could scarcely believe existed. The kind where I was holding a glass of water yet unable to quench my thirst because my body could barely produce the amount of energy needed to lift the glass and drink. Another round of tests and specialist appointments followed. I had an MRI and so many blood tests the phlebotomist was amazed.
Finally, I had my diagnosis: ME. Myalgic Encephalomyelitis.
I thought having a diagnosis would be the first step into getting treatment and getting better, but I was wrong. It turns out that life isn’t like an episode of House. There are hundreds, if not thousands, of articles highlighting the biomedical nature of ME but currently in the UK the recommended advice is to undertake Graded Exercise Treatment (GET). This means that you find an amount of activity that you can do, and then slowly and gradually increase it. Sounds simple? Not when you talk to people who actually live with ME. We find that if we push ourselves we get something called Post Exertional Malaise, which means we feel worse for days or even weeks afterwards. Some people don’t recover at all. Simply building up slowly doesn’t change the underlying reason that we are ill or increase the activity that we can manage.
ME groups have also found that many people who have undertaken GET have suffered more severe symptoms afterwards. There was a debate in Parliament earlier this year about the treatment available for people with ME which was incredible to watch.
Carol Monaghan MP said: “The recommendation of graded exercise has caused untold physical damage to thousands of people. In fact, a 2018 survey found that 89% of ME sufferers experienced worsened symptoms after increasing activity. If graded exercise were a drug, it would have lost its licence.”
I saw a lovely Occupational Therapist when I was first diagnosed but she had been taught that GET was safe and effective. When I raised my concerns she was unable to offer any alternative suggestions and so my case was closed and I now see no specialists, have no follow up care and no treatment plan at all.
The best advice I’ve found is to live within your energy envelope and to ensure adequate levels of rest. I monitor my heart rate using a watch and keep my pulse as low as possible. This means that I don’t quite as often have those sudden flares that leave me unable to function, but managing my ME in this way limits what I can do every day. I weigh up every action and every activity to make sure I’ll be able to manage.
I can’t walk long distances any more and I certainly can’t walk fast. I can’t carry anything heavy. I rarely go out with friends as I get very dizzy in noisy places so pubs and restaurants are a struggle. I think I function at about 40% of the level that would be considered ‘normal’. I rest up for hours, every day. If I don’t then all of my symptoms are exacerbated. I suffer from extreme noise sensitivity. My balance goes and I can barely stand. I can’t think straight and can barely talk. It is scary every time.
And then there is the brain fog. This is how some of us people with ME (#pwME to my fellow Twitter users) describe what ME can do to your cognitive function. Gone were the days of being able to concentrate or recall what I’d just read. Some days, I feel like I’m trying to think through a brain full of cotton wool. Thank goodness for those MRI images so I know that the little grey cells are still in there somewhere. I can often tell these days when I’m nearing the end of my energy limit because I have blank spots where words used to be. It’s frustrating for a writer to know that those words are there but to be unable to retrieve them.
Social media has been a lifeline for me. My fellow people with ME are very supportive and a useful source of information. Many people have had to live with ME for decades.
It’s hard to find activities when your physical and cognitive skills are so limited. I have always read voraciously, carrying a book around with me just in case I could sneak an extra page or two. Slowly I began to write more.
I also began to follow writers and publishers that I admire on Twitter. I found out about a writing competition in 2017 and entered my short story, The Last Good Day. It won and was given a 5* review in Heat magazine. I signed a three book deal with Choc Lit. My first paperback, Evie’s Little Black Book, was released in September, 2019. It’s My Birthday is available now as an e-book and Daisy’s Christmas Gift Shop came out last month. I try to write, though I’m not well enough to follow the old adage of ‘write every day’, but it has given me a new avenue to explore whilst my life is so limited, and I am very grateful.
Further information on Hannah's books can be found at choc-lit.comEvie's Little Black Book is available from all good bookshops and online retailers. Her ebooks are available on all e platforms - with Daisy's Christmas Gift Shop being released in time for the festive season. You can follow Hannah on Twitter at @HannahPearl_1 and on Facebook at facebook.com/HannahPearlwrites/
More information about ME can be found on the ME association website: