Written 8 October 2016

I’ve wanted to write recently but haven’t been able to start. I asked a friend to send me some titles to kick me off. It was only looking at the first title that made me realise some of the things that I do want to write about. And this is one of them.

I think I’m only just coming to terms with living with chronic illness. Nearly 2 years after I first got ill. In fact it’s 4 days short of 22 months. These kind of distinctions become important for some reason. I’m not sure why. It’s not like my life now is awful – I have lots and lots to be grateful for. And I am, very grateful. It’s just that so much feels different. 

There are very practical things. I’m typing this wearing glasses. Lot’s of people wear glasses but feeling the gentle pressure on the bridge of my nose is a reminder of the fact that my eye is damaged, and my sight will probably deteriorate a lot more. Sometimes there are little tickles or whorls of prickling where the shingles that marked this turning point in my life has left ghosts in the nerves of my face. No longer particularly painful but odd, distracting sensations that disturb me like wind blowing over water. 

My breakfast is a smoothie and some sparking water. Something that will fall down my stilled oesophagus of it’s own accord. There’s no peristalsis left to move it along. I’m often hungry and every time I eat I’m balancing concerns about nutrition with an assessment of what I think I’ll be able to swallow at that moment in the day, what is coming up?  Will I be active?  Is it nearly bedtime?  Oddly my desire for food, and cravings for particular foods seem to be largely a thing of the past. An unnecessary luxury to want a pizza rather than a sandwich. I tend to want sugary or fatty things, a newish sensation and one I’m sure is driven by bodies hunger for energy. And then occasionally, a desire for something so strongly that it almost physically hurts. Red wine. Crusty white bread with butter. Cheese. Plates and plates of cheese. 

I pull myself out of these feelings on a ladder of gratefulness. Starting small. I can nourish myself. I’m never as hungry as I was when Achalasia first started. I’m not as hungry as many people in the world right now. I have access to free healthcare and my amazing Fresubin drinks that fill me up with vitamins and protein. I have a wonderful, kind and loving partner. I have great friends. My family are loving and well. I am able to do work that I find fulfilling and make a modest income. My country is stable(ish) and not at war. I could go on – I hope you get the picture. I thought that practising gratitude was a bit lame. Pseudo happy American pyscho-babble but for me it has proved to be the greatest weapon in keeping myself in a good place. 

Life is quite medicalised. Daily doses – though thankfully reducing as time goes on. Lots of appointments, and admin. following up prescriptions and tests and test results. Procedures and planning for recovery. Monitoring developments. Watchful waiting. Having to prioritise life around these things. Changing work, waiting on the phone, waiting rooms. Waiting. There’s a lot of waiting. The build up to appointments – the hopes, trying to check my ambitions for the outcome, making notes of all I want to discuss. Then the slump. I’m learning to expect little, to hope for no change as the best outcome. Realising that practising medicine is as much an art as a science. That no-one will or can fix me and that I have to actively participate. That’s tiring. It’s tiring to be ill, or rather not to be well. To want to be wrapped in a blanket and cooed better like a child with a fever. It’s not going to happen and the more active and engaged I can be in my own life and wellness the better. Managing rest, nutrition, stress, exercise. It makes things less spontaneous, uses energy for parts of my life that in the past had seemed to run themselves. Leaves little energy behind for realising ambitions, fun and nonsense, dealing with challenges or mistakes.

Life feels smaller. This is interesting. I’ve sent hours over the last 22 months just lying down watching clouds. Not even had the energy to watch TV or listen to the radio. Within that is a great richness – I’ve marvelled at the ever changing beauty of clouds through my window. Marvelled at the size of the sky. Been gently aware of all the other living things under it. I’ve been frustrated by all the events I’ve missed. The shared histories I’ve been written out of by illness. Surprised not to see my face in group photos of my friends on holidays or nights out. Where was I?  Taking the photo?  Ah, no, I was at home, probably asleep. Or lying down after a hospital appointment. I’ve always been a restless, somewhat bold person. I don’t have the energy to be restless most of the time. All of my boldness has been directed in other directions. I like being at home. With no noise – no TV, radio or music. I like being warm. I like being outside in gardens. I am nervous a lot more than I used to be.

Then there is pain. I think I’m going to be writing a lot more about pain. It’s a daily feature of my life. I’m learning to investigate it’s colours and textures, it’s ever changing sensations. To accommodate it. I’ve been practising turning towards it, leaning into it. It’s quite probably always going to be with me for the rest of my life so I may as well use it. Rejecting it will be setting myself up for a long, and probably fruitless battle. It’s tiring. It pulls focus. It demands my attention like a grumpy toddler. It wakes me up, occasionally makes me gasp for air. 

I think I’m letting go of the deeply held belief that I’m going to get better. That my two specialists will, within days of each other, announce a misdiagnosis and give me a magic pill and it will be ‘how it was before’. Or I’ll wake up one morning with energy and vitality coursing through my veins like liquid sunshine. I’ll leap out bed surrounded by a gentle glow and explode out into the world. Those fantasies persist but more as a gentle amusement, I can laugh at the little reveries I find myself indulging in while waiting in hospital waiting rooms.

There’s power in knowledge. There’s power in kinship. There’s power in letting go of stuff. I’m getting good at prioritising my own needs. There’s still a mismatch sometimes between who I am now and who I would like to be but isn’t there always in life?  Maybe when you match up it’s all done with. 

I have a couple of chronic health conditions. They affect my life and shape my choices. I am trying not to be defined by them.