This is likely to be a ramble. I’ve sat down to write this blog post too many times to count and I’ve never managed to make it to the end. Normally, I use this blog to write about writing craft or to analyse fantastic examples of flash fiction. Very occasionally I’ve touched on my own writing – in terms of struggles and successes and everything in between. But I’ve never written about other aspects of my life before. Or more precisely, I have written about them but I’ve never published those pieces.
When I first joined Twitter in the hope of connecting with other creatives, I didn’t know what to expect. It certainly wasn’t the wonderful writing community in which I found myself. I remember getting my first story acceptance and all the congratulatory messages that came my way. I remember getting long-listed by Reflex Fiction on April Fools’ Day and the buzz that went with it. I remember the hundreds of notifications when I won the Retreat West quarterly flash prize last year.
Each of these moments were special. In terms of writing, they were milestone moments and the way these successes were celebrated by all my Twitter friends, people who I’ve never met but who genuinely seem to care about lifting others up and creating a sense of collective joy, made the moments even more memorable. In a trick of the mind, I can think back and see the light without the shade – but the backdrop to each of these moments was often in stark contrast to the “partying face” and “champagne” emojis hurtling back and forth on Twitter.
The day I got my first story acceptance I remember exactly where I was. I was sitting in the first-floor lounge at Leicester Royal Infirmary strapped up to a portable data recorder that was receiving images from a camera pill. The day of my first Reflex long-listing, I’d been suffering from a bout of intense nausea that had gone on for three weeks. The day of my Retreat West victory, I was struggling to breathe, curled up on the floor, sucking in huge lungfuls of breath, unsure whether this was Covid or whether it was yet another “fun” development in the disease I’d been suffering with for two and a half years.
This is a choose-your-own-adventure story. Roll a dice to determine where you start:
Chest pain. Imagine a vice clamping inwards from between your armpits, also a fist lodged in the space between your lungs.
Breathlessness. Imagine you take a breath but there’s only half the oxygen there would normally be, also it feels like there’s something stuck in your windpipe.
Nausea. Imagine you’ve been reading a book inside a car skidding figure-of-eights on the deck of a ferry bouncing about on choppy seas; you also have food poisoning – this is what your nausea feels like.
Exhaustion. Imagine you take a shower and it is too much effort to keep standing so you crawl across the bathroom to your towel, lie there waiting to be dry so you can clamber back into bed.
Stomach cramps. Imagine someone has injected acid directly into your gut and the acid has tiny pins dissolved within it; that your lower abdomen clenches and contracts in pulses of pain.
Brain fog. Imagine your head is full of cotton wool and the connections between your thoughts are tangled up in such a way that you have no recollection of what you read in the previous bullet point, no recollection that you’re in a choose-your-own-adventure story, no recollection that you’re reading a blog post about illness.
Now, it’s time for breakfast. What are you going to eat?
Does it contain sugar? If yes – go to question 2. If no – go to question 4.
Is it a fruit or vegetable? If yes – got to question 3. If no, you are unable to eat this item without exacerbating your symptoms – choose another item and go back to question 1.
Is it in the following list: carrot, courgette, cucumber, babycorn, lettuce? If yes – eat as many as you like. Is it in the following list: avocado, bell pepper, blackberry, broccoli, celery, green beans, kiwi, leek, mushrooms, peas, raspberry, strawberry, tomato? If yes – eat in moderation; be especially careful with tomatoes and berries, especially if you rolled an odd number above. If no, you are unable to eat this item without exacerbating your symptoms – choose another item and go back to question 1.
Are you certain it doesn’t contain sugar? Check the ingredients and really make sure – note, the following items often contain sugar: baked beans, bread, yoghurt, sauces / ketchups, savoury biscuits, stock cubes, tinned soup. If it does contain sugar, even a tiny amount, choose another item and go back to question 1. Otherwise, go to question 5.
Is it a high processed food? If it doesn’t look like it came straight from the ground / a farm then it’s probably no good – so, even if you’ve found a shop-bought sugar-free cereal, bread, biscuit, yoghurt or snack bar, it’s still a no-go. Also, is it a dairy product? Is it high in saturated fat? Does it contain nuts, seeds or pulses? If yes to any of these questions – choose another item and go back to question 1. Otherwise, go to question 6.
Does the item balance with the other items you’ve chosen so you’ve got some fibre but not too much fibre? Enough carbohydrate to sustain you but not too much it triggers a reaction? Do you feel like you’re living in a warped version of Goldilocks and the Three Bears? If yes, congratulations, you’ve accomplished breakfast. If no, go back to question 1.
Was that fun? Or are you happy to have an easy get-out point from the “game”? Because the reality for me and many people living with similar conditions is that there isn’t any get-out point, easy or otherwise. You simply keep going from one “adventure” to the next. Often my symptoms will shift throughout the day. I’ll move from pain into breathlessness into nausea, sometimes with other symptoms thrown in. The symptoms are severe enough that I never feel at a point of wellness to easily do things others might take for granted – going to the village shop might use up a whole day’s worth of energy; going out for a “coffee” (I can’t drink coffee or tea or pretty much anything other than water) with friends requires a couple of week’s careful planning. Pre-pandemic, I attempted a very brief and very ill-thought-through return to work – I lasted all of four weeks and had about seven sick days during that time. Because of having no income, I’ve had to move in with my parents and I certainly didn’t envisage being back under their roof in my late thirties.
But having kept my illness to myself for so long, why have I decided to write about it now? Firstly, and I can’t stress this enough, I’m certainly not looking for any pity or sympathy. There are people in far worse situations than me, people who have been dealt much tougher hands in life. Pretty much everyone has a burden to deal with – especially with the pandemic still looming large. Just in terms of illness, I see so many writers talking openly about horrific long-term conditions from ME to arthritis to those going through cancer treatment to those dealing with mental health conditions. And I’m sure there are others who, like me, have chosen to keep their illness under wraps. As someone dealing with an illness, you spend a lot of time being asked questions about your illness and it’s nice to have a space where people ask you exclusively about other things.
When I first joined Twitter, that was my main thought – I would keep it as an illness-free zone. Hopefully, I would find like-minded people. Hopefully, it would be helpful to me in learning about writing. Possibly, it would lead to writing opportunities. Possibly, I would make some Twitter friends. But I wouldn’t mention my illness. I would never be able to actually attend any literary events so these people would never see me in person, never realise that I looked like a skeleton or that, quite often, when I was chatting away to them through the medium of typed messages, I was clutching myself in pain.
I was quite sceptical that anyone I met online would ever become more than an extension of the “unknowable internet” but the intervening years have proved that assumption to be completely wrong. It would take me quite a few hands to count all the wonderful individuals I’ve met over the last couple of years – wonderful as writers and as human beings – and, in that context, it now feels strange not to acknowledge my illness. Often, I’m asked the question, ‘How are you doing?’ and I fire back with the standard response, ‘Fine thanks.’ I hate doing that because I feel it normalises the expectation that everyone is fine when so many of us are not – but any other response requires an essay. So, in part, my reason for this blog post is to properly answer that question. Perhaps, in future, when people ask me how I’m doing, I’ll write ‘Fine thanks (or if you really want to know, see link…)’?
I also wanted to use this as a space to profess my feelings of guilt. I often feel guilty that I don’t have the brain capacity to read people’s stories, especially those of you who are always so kind in reading and commenting on mine. I often feel guilty about bringing conversations to an abrupt conclusion (or just leaving them hanging) because I haven’t got the energy to continue with them. I feel guilty for not buying books or supporting writer friends by attending their workshops (unfortunately, my current finances mean I have to limit what I can spend). I feel guilty about saying no to things – invitations to teach workshops on Zoom, editors soliciting my stories etc.
But finally, and most importantly, I want to thank you – anyone who has stuck with me through this rambling account and generally anyone who has stuck with me over the past three years. While the above choose-your-own-adventure game might seem a little bleak, it is what it is. I have good days and bad days just like everyone else. I definitely don’t stick rigidly to that diet. And along with the burden of illness, there have been definite silver linings. When feeling well enough, I get time to write that isn’t crammed into the crevices between work and childcare – and I’m aware of how lucky I am to have that. Because “normal” work isn’t possible, I’ve had to find something I can do from home and that I can manage around my illness. So, I started taking on editing clients. I started designing my “Write Beyond the Lightbulb” workshops. And I have loved both things much more than I’ve enjoyed any job I’ve ever done before. So, thank you to everyone who has chosen to put their trust in me over the last year – I’m blown away that you continue to do so and immensely grateful that you have. I’d also like to say a special thank you to my Betas & Bludgers writing group friends who have put up with more than their fair share of “brain fog” first drafts that resemble a ball of spaghetti rather than anything approaching a coherent story.
So, there you have it. The person I portray on social media and in running my workshops etc. is only one of my faces. There is a whole other part to my life that I try not to mention and will probably continue to avoid mentioning for the foreseeable future. I don’t want to be defined by illness but I also feel it’s important to acknowledge it to all you wonderful people who I’ve met online over the last three years. I should also say that I’m not without hope of getting better (either in part or completely) – I purposefully haven’t named my condition in this blog post (because I don't want a string of people saying "have you tried this?") but I do now feel that I have a diagnosis that fits with my illness and have possibly found a doctor who has ideas on how to treat it. Hope can be a destructive thing when you experience it like a tide, ebbing and flowing, building in waves that crash away with ever more explosive violence; but this time, the hope feels more real and less grasping-at-straws.
And that note of maybe-hope feels like a good place to leave things.
If you made it this far, congratulations. Please roll a dice to determine what delectable item you might consume as a reward:
A rice cake. Mmmm rice cakes!
An oat cake. It’s a cake so it must be good, right?
A berry smoothie – although, don’t go too heavy on the berries and remember no milk, ice cream, yoghurt or anything of that ilk.
A champagne flute of orange squash – make sure it’s sugar-free!
A ginger and lemon tea.
A chocolate chip cookie and f*** the consequences…
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