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| A view from the passenger seat on Boxing Day 2013 |
It's been a long time since I posted anything here, so I might as well write my 'review of 2013' since it seems to be some sort of annual ritual in media land. Not that there have been many significant changes in my activity levels in the past 365 days referred to as 2013. Life has gone on. Housebound. Progressing from a bit beyond 'bedbound' to 'housebound' or 'less-bedbound-but-still-housebound'. Progress? Hmm…well…I suppose it is, but I'm a world away from my pre-relapse state of two years ago. So, it's not that great.
Even when nothing seems to have changed, at the end of 2013 I know a few things about my state of physical health that I didn't know at the beginning of the year. In November, after extensive tests and referrals, I learned that I have haemochromatosis, a hereditary disorder of iron metabolism.
So… my iron levels are too high. It sounds simple and almost benign. It's not. People with haemochromatosis lack the ability to regulate iron absorption. Over the decades, the excess is stored in the liver, pancreas and heart. It can also build up in the joints. The only treatment is periodic blood removal when iron levels get to high. If undiagnosed and untreated it can cause cirrhosis and/or cancer of the liver, diabetes due to iron accumulation in the pancreas and even arthritis if it builds up in the joints. My dad almost certainly died prematurely because of the complications of haemochromatosis.
I'm fortunate, or at least I think I am. I have been diagnosed in the early stages and I will be monitored regularly and treated accordingly to prevent the consequences of iron overload. Haemochromatosis doesn't go away. It's for life. And that's been a lot to get my head around. Life goes on the same as before—the only difference is between knowing and not knowing. A year ago I hadn't even been aware of a condition called 'haemochromatosis'. I also learned that I have low bone density—24 years of relative inactivity due to ME, getting older AND haemochromatosis—which also increases the risk—have all played their part.
As far as ME/CFS is concerned, I'm still severe most of the time but I'm improving slowly, even if progress is somewhat erratic. I watch Kojak in the afternoon sometimes. I've been to the post box 4 times since September. I'm getting more upright. I even bought myself a fake fur coat. I've had two cups of coffee out, on my own, after medical appointments. Wearing my faux fur, naturally.
Photography—hardly anything in 2013 but the instinct to take photographs is stirring. On Boxing Day, at my request, we went out in the car. I wanted a change of scene. I took my camera and took some photographs from the passenger seat. It's not much, but it's a big achievement.
Art—I stopped going to my weekly art class in March 2012 when the virus struck. I thought I'd be off for two weeks. Almost two years later I'm still nowhere near able to return. Earlier this year I signed up for an online art course. I'm slowly working my way through the assignments. Stop. Start. Stop until I feel able. Start again. It's slow. I don't often have the energy and concentration but it gives me a medium- to long- term focus.
Earlier this year I completed an online MOOC course about how history is recorded by photography and film—in news reporting and by Hollywood. It was hard work but worthwhile, introducing me to different aspects of media communication, particularly in portraying real world events. It expanded my horizons, introducing me to many aspects of photography, film, editing and censorship that I had not really considered before. The workload was too much cognitive overload in ME terms. The course was assessed by means of an online multiple choice questionnaire every week. I even received a 'certificate of completion' with distinction but I'm in no hurry to repeat the experience. The workload was a bit much.
Life is more complicated now. I need to think about my diet. I'm trying to keep my iron intake low, my calcium levels satisfactory and not overwork my pancreas. I sometimes feel nostalgic for the days of 'uncomplicated' ME and the naïve optimism that one day I'd be better and live happily ever after. In the meantime I will look forward to better times in 2014.
I'm fortunate, or at least I think I am. I have been diagnosed in the early stages and I will be monitored regularly and treated accordingly to prevent the consequences of iron overload. Haemochromatosis doesn't go away. It's for life. And that's been a lot to get my head around. Life goes on the same as before—the only difference is between knowing and not knowing. A year ago I hadn't even been aware of a condition called 'haemochromatosis'. I also learned that I have low bone density—24 years of relative inactivity due to ME, getting older AND haemochromatosis—which also increases the risk—have all played their part.
As far as ME/CFS is concerned, I'm still severe most of the time but I'm improving slowly, even if progress is somewhat erratic. I watch Kojak in the afternoon sometimes. I've been to the post box 4 times since September. I'm getting more upright. I even bought myself a fake fur coat. I've had two cups of coffee out, on my own, after medical appointments. Wearing my faux fur, naturally.
Photography—hardly anything in 2013 but the instinct to take photographs is stirring. On Boxing Day, at my request, we went out in the car. I wanted a change of scene. I took my camera and took some photographs from the passenger seat. It's not much, but it's a big achievement.
Art—I stopped going to my weekly art class in March 2012 when the virus struck. I thought I'd be off for two weeks. Almost two years later I'm still nowhere near able to return. Earlier this year I signed up for an online art course. I'm slowly working my way through the assignments. Stop. Start. Stop until I feel able. Start again. It's slow. I don't often have the energy and concentration but it gives me a medium- to long- term focus.
Earlier this year I completed an online MOOC course about how history is recorded by photography and film—in news reporting and by Hollywood. It was hard work but worthwhile, introducing me to different aspects of media communication, particularly in portraying real world events. It expanded my horizons, introducing me to many aspects of photography, film, editing and censorship that I had not really considered before. The workload was too much cognitive overload in ME terms. The course was assessed by means of an online multiple choice questionnaire every week. I even received a 'certificate of completion' with distinction but I'm in no hurry to repeat the experience. The workload was a bit much.
Life is more complicated now. I need to think about my diet. I'm trying to keep my iron intake low, my calcium levels satisfactory and not overwork my pancreas. I sometimes feel nostalgic for the days of 'uncomplicated' ME and the naïve optimism that one day I'd be better and live happily ever after. In the meantime I will look forward to better times in 2014.
1 comment:
So nice to see you post again, Dig, though am sorry that you have these complications to add to ME (I have a resurgence of scary eye complications so know how you feel). I was thinking of you other day as I just got a new frame for the lovely white cup photo you gave me a few years ago. It looks grand! I do hope 2014 is better for you. And I love that you got yourself a faux fur. That made me smile. Happy New Year, my dear! xxx
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