My wife and I visited a local reclamation yard today. We were looking for something interesting for our newly landscaped garden. This building remnant caught my eye. I’m not sure if it’s a bell tower from a church, or just some ornate folly. Whatever it is, it is utterly incongruous, even here amongst an eclectic mixture of Belfast sinks and garden gnomes…
Having M.E. is all about managing expectations. A good way of describing it is thus: A person living with chronic illness, that identifies with Christine Miserandino’s Spoon Theory. Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion… sometimes having an abundance, other times coming up short. (Via The Urban Dictionary) The full text of the theory can be found on the appropriately named ButYouDontLookSick.com
What this means in a practical sense, is that I am required to undergo a massive re-adjustment in every aspect of my life. The hardest thing is finding a balance between activity and exhaustion… I don’t want to spend my life on the sofa, but neither do I want to feel like I have been run over by a truck – which is how I feel when I overdo things – so I have to find my optimum ‘level’ The thing is, this keeps changing. What is difficult one day is easy the next, etc.
I used to be a photographer, I may be one again. I don’t photograph people, I much prefer ‘places’ and ‘things’ mostly because they don’t complain or become coy under scrutiny. I can’t stumble around on the local beaches or denes anymore, so I will have to look closer to home for inspiration…
The following are digital sketches, fragments of imagined landscapes. M.E. slows your world down to the point that you start to feel dislocated from the flow of time. People and places flickr across the TV screen or computer monitor, but you don’t feel part of it. The world spins on its axis, but I am stuck in concrete.
When I am exhausted, not tired or a bit sleepy, but in stupor so bad that I am unable to think coherently or move from the sofa, I occupy a middle ground between sleep and consciousness. The following images are the beginning of my attempt to explore this imagined landscape.
Its been almost exactly a year since I last posted on here. Twelve months ago, I had a physical breakdown. I thought it was Multiple Sclerosis, but after a year of hospitals, tests, uncertainty, and general anxiety, I have been given a diagnosis of M.E. or, Chronic Fatigue Syndrome.
I am still getting to grips with it, but my head feels alot clearer. In fact, I feel like I am surfacing from a year long stupor. I am finally awake, after a year of struggling to walk more thatn a few feet. I have ditched the wheelchair, and I am using my own two feet. I shuffle along like an old man, but at least I am vertical and not horizontal – which is where I have been for most of the last year.
I will post further on this in the future…. and about other things, of course.
We’ve lots to catch up on…