Haibun/Lament

Today is the last day of winter as the meteorological office measures these things. The cold air from Russia is being pushed back (finally) by the warm air from Spain. As we’re much (much) closer to Spain than we are to Siberia, the effects are almost immediate, with the first snow of the year falling as the two fronts battle it out.

Today is also Rare Diseases Day. The two, cold and rare disease, go hand in hand for me. I have a rare disease, an orphan disease, known to its friends as Cold Agglutinin Disease, the workings of which are too complicated for me to have really delved into. Not a lack of curiosity, more a resignation that there’s nothing to be done about it so why waste time working out how it works. Even the spellchecker doesn’t recognize it as a real word. As one specialist told me, ‘You’re not dead yet so it can’t be that serious’. Thanks a bunch.

It went undiagnosed for fourteen years, nine of them spent in the worst possible place for this condition—the north east of France, where the winters are long and bitter. By the time I found a doctor who actually knew what I was suffering from, we had moved down south out of an instinct for survival, and my health was picking up. I hate and fear the cold, even very mild cold, because it turns toes and fingers red and painfull, and eventually black and dead at the tips, because my red blood cells die, because my chronic anemia deepens, and because I get mortally tired and depressed.

I am lucky though. I have this condition all on its own. The vast majority of sufferers have it as a sideline to something more important. Most sufferers get very ill. I don’t. My CAD came out of the blue and doesn’t seem to have dragged any other ailments with it. As long as I’m warm/hot, I’m fine. But I hate the winter, hate the cold, and feel so very sorry for anyone and anything that doesn’t have a warm place to curl up in.

 

Grey sky tosses snow

a bitter rain falling—realm

of hunger and cold.

 

 

 

Published by

Jane Dougherty

I used to do lots of things I didn't much enjoy. Now I am officially a writer. It's what I always wanted to be.

25 thoughts on “Haibun/Lament”

  1. I hate cold too! Hate as in prefer a warm day instead of a cold one, more and more as u grow up. Keep the CAD checked alwahs and take good care to warm yourself sufficiently. Does your homes have radiator or your country isn’t cold enough for one of those?

    1. It’s more that it’s rural and the house is an old farmhouse with a couple of fireplaces but there’s no such thing as central heating. No electricity to speak of either. We’ve put a couple of old woodburners in while we’re waiting on the architect to draw up a plan of how to put a few modern additions like heating, a kitchen and a bathroom without destroying the charm of the place.

  2. I’m sure that spring can’t come fast enough for you. I hope your heater situation will be better for next winter. 🙂
    It seems there are so many odd autoimmune diseases now–our younger daughter has lupus, and so does my mother-in-law, but hers was just diagnosed a few years ago, and I have friends with lupus, rheumatoid arthritis. . .

    1. I joined the CAD support group and discovered that most of the people who have this condition have all sorts of other things too, like lupus and lymphoma, and they are really sick. It usually starts around age 50/60 whereas I started with it (although nobody knew) when I was in my mid thirties. I am so lucky that I’m basically very healthy!

  3. It’s good to hear that your move made a difference in your condition.
    I’m not a big fan of medication, unless it’s necessary to treat an ailment, but it’s has to be disappointing that there is no effective treatment, other than adjusting your living conditions to at least alleviate symptoms.
    I say bring on summer, for Jane’s sake!

    1. Thanks Ken. I hope whoever is in charge of these things is listening. No, I’d rather never have anything to do with doctors. There are drugs that can be used to help aspects of the condition but it seems the doctors here aren’t clued up or have decided the side effects of the treatment outweigh the benefits. I’ll stick with no drugs and thermal socks and gloves 🙂

  4. Merril is right, there seem to be all sorts of odd diseases (auto-immune, all of them) appearing in people I know. I’m glad yours can be treated with warmth rather than transplants or blood transfusions or some of the other things people have to put up with to survive. I’m always cold, and layers are definitely a good solution. Anyway, it should be warmer for all of us soon. (K)

    1. The rain has just started, about 9 hours late, but who’s complaining? The wind is from the south-east (Mediterranean) and the temperature has gone up. I just hope they’re right about all the rest. Spring.

  5. Well Jane here is a coincidence, I am not sure if this the same but I have Reynaud’s Disease. That causes my fingers and toes to act like yours. I have had fingers and toes pre gangrenous, black and dead. They have told me it is to do with my body’s thermostat thinking that any change in temperature is below zero, so the brain shuts off blood to the exstreemities to protect the heart. If I get too chilled I just fall asleep. In winter it’s feels like I am walking on glass. It even affects me in the summer??? https://www.nhs.uk/conditions/raynauds/
    Probably not the same but similar. I like the poem too!

    1. I know that Raynaud’s disease is linked to CAD and often people have both. What you describe sounds more like Cold Agglutinin Didease than Raynaud’s and as far as I know the thermostat thing isn’t Raynaud’s as the symptoms should go away as soon as you warm your hands up again. Maybe you should get it checked? You might have both! Aren’t you lucky?

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