Rise slowly like a tree

About the challenges that hinders my writing

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Say hi if you’re on any kind of NHS waiting list!

I’ve been on the waiting list for rheumatology for ten months now, could be eleven, and I thought we may as well get to know each other if we’re going to be spending this long in the same queue.

I don’t even want rheumatology. I want the Ehler Danlos Clinic in London. But apparently this is the route one must take.

Three times during these ten (eleven?) months I’ve received a questionnaire consisting of a single question to the effect of “Are you dead yet?” Only it says something along the lines of “Do you still need this appointment?”

I wanted to tell you about this because ever since I started writing on here I’ve intermittently been posting about exhaustion and I don’t want it to come across as whiny or an urge to be pitied. What then would be more of a behind the scenes look at This Writing Life than to speak frankly about the challenges I face in my writing life?

Because we all have these challenges that take up our physical and emotional energy: work pressures, young families, emotional upheaval, financial insecurities, health issues and whatever else.

I’ve already lived through the young family, the work pressures, the emotional upheaval and the financial insecurities (that one’s still ongoing), but what I realised only recently is that in all likelihood I’ve faced them all with a chronic health issue, because if a condition is genetic and you’ve never known your body any different to how the way it is, how are you supposed to know that what you’re experiencing isn’t perfect health?

Last year I was ill for nine months with virus, post-viral fatigue, another virus, post-viral fatigue, a third virus and post-viral fatigue. This time last year I was sleeping for fourteen hours per day, and when awake I was too fatigued to do anything beyond the absolute necessary. Going for a walk was unthinkable. When I did start walking, it was with a stick and a wheeze.

Coinciding with this was a family member being diagnosed with Ehler Danlos Syndrome. She writes frankly about her experiences (in Swedish), has been interviewed for articles and is doing all she can to raise awareness. There’s no test for this syndrome, the diagnosis is based solely on symptoms.

I proceeded to read about the symptoms and then I messaged her and received a thoughtful and comprehensive response. Here’s a person who’s fought for her diagnosis and who has educated herself. Some of the symptoms together with the extras in her response brought the realisation that this is me, especially seeing as we’re family and the condition is genetic.

EDS affects the connective tissues (hypermobility being the most visually obvious symptom, although not all hypermobile people have EDS), but research is starting to show that it can also be linked to other conditions such as anxiety, Autism Spectrum Disorder and ME.

The hypermobility I probably don’t even need to mention, my elbows bend backwards and flexibility was never a problem (only of course if this is EDS, then it is a problem)

I’ve always been a tired person. All my adult life I’ve wondered if I’ve had some form of ME, because if I exert myself or my senses become overloaded I spend the next day in bed. If I go to Sweden for ten days for book-related stuff, meaning that I don’t get a day off for three weeks, I know that it will take me days to recover.

But the thing is that I loved sleeping even as a child, and I slept for longer and more than anyone else in my family. My first thought on being woken up early to go to nursery or to school would be that I wanted to die. The thought quickly passed once I was fully awake, but is this normal in a young child?

As a teen I began fainting, and postural tachycardia is still a problem - that’s when the heart races and the head spins as you stand up. When I’m really tired, like after this trip to Sweden, even sitting at the desk for a full day is not possible.

In terms of neurodivergency, I’ve written about this before. As a child I was a voluntary mute, or “shy” as they called it back then. I had close friends I grew up with, but I never understood, and still don’t understand, groups. I misinterpret conversations and jokes, always taking things too literally. I can write, but am not comfortable speaking. I LOVE words, getting them exactly right, spending months researching etymology to make sure I don’t use any word that was in existence after the nine hundredth century as I did for The Legend of Maderwerth - this is my happy place. I like to be in control, I mask and then withdraw, I am undiagnosed and will probably remain so, unless the deal is buy one get one free with the EDS diagnosis, if and when it eventually comes.

Proprioceptive dysfunction is another symptom. Hello clumsy! I was always bothered by my lack of bodily control, so I worked hard on overcoming this, first practicing Shaolin Nam Pai Chuan Kung Fu, and then yoga. Also dancing. Building neural pathways and bodily awareness through repetitive movement. This has also helped with the pain. Because there is pain, and an awful lot of joint clicking. I am so much more spatially aware than I used to be, but my hand will still fly out and knock a mug over, I will still fall over, things will still drop out of my hands, I will lean against unstable things and cause them to come crashing down.

Yoga also helps with anxiety which otherwise keeps me awake at night. I am always catastrophising, but I’m not sure how much this has to do with past trauma and how much it is a result of hypermobility. Or even how bad my anxiety really is. I’d really like to know. I’d like to be able to pluck my anxiety out of me, place it on a scale and weigh it against an average value. Not to carry it like some trophy, but for my own peace of mind whether it’s “oh yeah, that’s bad” or “huh, I’m actually fine”. Both would be reassuring outcomes.

This is what I live with, and of course I don’t know that I have EDS, but with the symptoms and with it being genetic, it seems likely. At the moment, after my tiring (but amazing) trip to Sweden I find myself back to sleeping fourteen hours per day and working short bursts on my computer in bed. I’d like to go out for a walk, or down to the sea for this years’ first swim, but if I were to do that right now I know I’d become ill.

So I make my life small. I rest, and I’m happy to rest. I do the work I have to do, and if I have any spare time and energy I turn to the short story I’m working on right now as part of a collection.

This morning I went back to bed after having seen youngest child off to school. (There is no other option, there’s no pushing through this that won’t cause me harm in the long term). I slept deeply, but as I felt the first glimmer of waking, a restlessness came over me urging the tired weight of me to get up

That’s when I heard a voice saying, “Rise slowly like a tree” and I saw an image of myself standing in vrkshasana (balancing is a sure way to calm the nervous system) next to a young spruce while it rose slowly out of the ground. It sounds naff now that I write it, but I’m nonetheless grateful to my subconscious for conjuring up this image for me and reassuring me that I shouldn’t rush out of rest. It was profoundly comforting and it is the image I will continue to bring into my writing day.

Photo by Fabien TWB on Unsplash

In other writing news:

• My agent and I received a request for the full manuscript of The Legend of Maderwerth. We expect to hear by end of June.

• I am on the shortlist for something that means a whole lot to me. I know that there are no guarantees that the story will have the strength to climb all the way to the top of the pile, but I will nonetheless tuck this shortlisting inside my heart as encouragement to keep going.

• Had a short story accepted for an anthology in Sweden. This story is part of a memoir project that is currently laying dormant. I have twelve stories, and an idea for how to tie them together. I will return to it when I feel the need to.

• Wrote an unexpected 500 words on short story number eleven, I really didn’t think I would have it in me this week.

• Finished the second draft of the literary translation I’ve been working on since January. The next step is to read it through on my Kobo, to catch all the typos, the missing speech marks and punctuation, the nitty-gritty, but I’m hoping to deliver it to the author by end of May.

• Currently reading The Interpreter of Maladies by Jhumpa Lahiri

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