Sjogren’s and UltraViolet, or How I Became a Vampire

posted in: chronic illness | 2

Day 2 – Write about the weirdest thing about your health.

Depression #2 © 2011 Jane Waterman
Depression #2 © 2011 Jane Waterman

When one’s health ‘goes wonky’, there’s lots of things that could no doubt be called weird. As someone who had trouble getting a diagnosis in the first place, I was used to the words ‘atypical’ and ‘undifferentiated’. Which I suppose is another way to call me, as I have often been called, weird.

I grew up in the Australian sun, and liked nothing better than to spend the day on the beach, preferably in the water, getting my fair share of sunburn. As someone who worked in climate science for a long time, and heard more than any reasonable person should about the Antarctic ozone hole, I’d do it all again, but probably never go near a beach without SPF 1000 slathered all over me. However, for the sake of argument, let’s say I was the typical all-Australian kid.

Therefore, it was quite weird when I moved to Canada (which according to many peoples’ preconception is the equivalent of moving into an igloo – it isn’t, by the way) in the late nineteen-nineties, and began to develop problems with the sun.

At first, my new state was barely differentiated from the old, as I was tired most of the time. I still managed to ride my bike up to the university most days, or otherwise settled for a very energetic bus ride. I became prone to regular outbreaks of annular skin lesions that mostly resembled cigarette burns with a few larger ones thrown in for good measure. According to my GP at the time, I had ringworm. Considering we had no pets other than parakeets, I wondered if I had transformed into a mangy cat with unfortunate hygiene problems. There’s a thought.

Author’s note: Sjogren’s made me take the past day and a half to collapse with the flu. I might add that having the flu on top of a flu-like fatigue is no fun. Other than that, it messes with my theory about how Sjogren’s turned me into a vampire. However, both days I collapsed in the afternoon and I’m back here at night, so perhaps it’s all good.

Back to my tale, I took to wandering around the campus with one of my favourite Chinese parasols, at least in the summer, which seemed to attract odd looks. It would have looked odder in winter, even though my new countrymen have a fairly large tolerance for odd. Actually my old countrymen did too. Maybe I was fortunate to surround myself with such tolerant folks.

I could have put it down to my English heritage – put the blame on the ancestors as it were – as I began to get rather flushed in the sun. I began coating myself with 60 SPF (which is not strong enough, let me tell you), covering up, hiding in the shade, and so on. Reflected ultraviolet gets you every time.

Over the years, the spots came and went, the fatigue came and went, and I woke up one early spring morning with the sun streaming through the window, in terror of what was to come. Needless to say, I realized round about then that getting exposed to ultraviolet radiation from the sun had a rather dramatic effect on me. Having gone through a surgical menopause in a rather abrupt way at age 42, I feel somewhat qualified to say I know what a hot flash is. I just need to stand in the sun for 20 minutes. It’s like slow cooking on a spit, and if I linger too long, I might become the main course. I begin to get a little woozy, without the fun of a wee alcoholic drink, and before long I’m fleeing indoors for the refuge of my bat cave.

So it began, that the child who once lived in the sun all day is a post-menopausal 46 year-old hissing softly like Bela Lugosi and ducking for cover after a blast of UV. Every year, as the earth does its dance around the sun, so too, do I dance (truthfully, perhaps stagger a little) inside and draw all the blinds. It could be worse of course, but it’s rather strange to watch through a chink in the blind as though I’m a stranger in a strange land.

As the summer goes on without me, the people I meet (usually indoors or at night) talk about how great the weather is, and then offer the wish that I’m enjoying the sun. Of course, not to spoil the sense of joie de vivre that embraces everyone at that time of year, I often get to talking about how great the weather is too, even as I wait for the rains to come.

It’s a good thing my wife loves to read vampire books, even though I don’t know if she even realizes it yet, that she married one.

Weirdly yours,
Jane

2 Responses

  1. Annette McKinnon (@a
    | Reply

    A very seasonal revelation Jane. just past Hallowe'en.. I was "lucky" enough to figure out my diagnosis with the help of the friendly people at SjogrensWorld.org That's an online community of patients. When I asked the Dr about whether or not I had it he said something to the effect of "half of my patients have Sjogren's".

    I have a cousin who is allergic to the son (oops sun-she's a nun). She has an uncommon autoimmune disease but I need to find her letter and check on the name.

    That's difficult, spending your days out of the sun.

    • Jane
      | Reply

      Thank you for sharing, Annette! I'm glad you were able to figure it out – not glad of the diagnosis! I've heard good things about SjogrensWorld.org. I've not had the time or energy to visit much, although I think I did drop into the forums once. I always find it hard to make friends on a forum without trying too hard – aka giving more than I can. It's certainly interesting to hear your doctor's report – I'm sure Sjogren's is more commonly experienced than reported, but is usually masked by co-morbid conditions.

      LOL, quite the sense of humour you have – I really appreciate it.

      I don't know I miss the sun so much as the light and the sounds and smells of nature. I have so many happy memories of my youth in the Australian bush. I'm lucky to have had those experiences, and I'll gladly take being able to sit out in the evening or the rain or the winter.

      Many blessings,
      Jane

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