A slightly more serious post than what I would normally publish here, today. I want to write a little bit about trying to make the most out of my photography hobby, in the face of chronic illness, hidden disability and exhaustion. It’s something that’s increasingly on my mind as, sadly, my health has become more and more difficult to manage with each year that passes. And one of the things this affects the most is my ability to socialise, and my capacity to enjoy things that people without any health concerns most likely take for granted.
One of those things is photography. It’s easily my number one hobby (- and despite the wedding photography elsewhere on this site, I have to be honest at this point and state that a hobby is all it is now. I’ve not done a professional shoot in probably well over 5 years at this point. I’ve not pursued it in any meaningful way, due to my health, and in fact there are multiple jobs I’ve avoided or outright turned down as a result). I love exploring with my camera, going off on walks and seeing what sights will present themselves. Over the last few years I’ve become more and more attracted to wildlife photography. I love discovering wild animals in their natural habitats and trying to get good pictures of them. It’s incredibly rewarding.
When my health allows it.
Frustratingly, since the age of 12, I’ve been plagued with two chronic illnesses. I’m 42 now. In layman’s terms, my lungs and my bowels have been FUBAR for the last 30 years. An industrial quantity of horrendous medicines (all designed to mask one symptom but create several other problems) and 13 operations later, with fewer internal organs and bits of me than I had previously, (with each surgery coming a desperate hope it will be the last) and I’m tired. Very, very tired. And still ill. And in pain. Every. Single. Day.
As a particularly rotten cherry on the cake, I’ve recently learnt that some medication that was prescribed to try and manage my bowel problems has caused toxicity in my body, leading to muscle and tendon damage, as well as a permanent change to my mitochondria - the cell responsible for creating energy. As such, I effectively have chronic fatigue. I’d always felt the symptoms of this, but associated them with the aforementioned illnesses and surgeries. But it turns out, it was a triple whammy all along.
People I’ve not seen in a while often tell me I’m looking well. It’s very kind of them to say - the silly, vain part of me really appreciates it - and I understand why they might feel compelled to tell me that when they know a small amount about my medical history. But, the reality is, five or six days out of seven, inside I feel a little bit like I’m dying. Everything aches. Everything is stiff and weak. My daily reserves are already depleted from the moment I get out of bed. I’ve never ran a marathon, but when I’m at my worst, I imagine that’s what most runners probably feel like once the exhilaration of passing the finish line wears off. There are a few days a month, when I’m at my worst, where I literally have to crawl around on all fours.
But, every once in a while I feel… not completely wretched. And on those days I (perhaps foolishly) try to make the most of things. Actually, that’s not strictly true. I (definitely foolishly) often try to make the most of things even when deep down I know it’s a terrible idea and my body is already crying out from every cell. Either way, there’s ALWAYS a penalty for doing so. Many years ago I watched the ‘spoony’ analogy that was going round online. It rang completely true and it still does*. I guess I just struggle to accept things the way they are. That’s always been an issue for me. Since the age of 12 and being diagnosed with the bowel issues, I just wanted to be ‘normal’. I still do. Hence, on the ‘good’ days, my childlike naivety and hope kicks in - ‘maybe this will continue…’. It never does.
Yet, whenever I can, I try and get out and do some photography. I feel like I don’t want to be defeated. I don’t want to give up on something I love so much. It’s just getting harder and harder lately. I’m not sure what the solution is. I’m not sure there is a solution. I’m due more surgery at some point this year. The optimistic part of me hopes it might make some kind of positive difference to my pain and energy levels. The pessimistic part of me knows it probably won’t.
*It’s a year or more after I first published this post and I think I’ve thought of a better analogy than the Spoons one that became popular:
It’s like everyone’s energy system is a bucket of water, but your bucket has a leak and the tap you’re trying to fill it with is stuck on trickle, compared to everyone else’s solid bucket and healthy flow. But you’ve still got a garden of things that desperately need watering.
Anyway, here are some photos wot I took lately:
