Wednesday, 12 October 2011

Vampire Life

I don't like sunlight. In fact, lots of people with lupus don't like sunlight. Ever since I was in primary school, I've had a tendency to get an uncomfortable rash when I go out in the sun. So, I either stay out of the sun all together or cover up with thick layers of sunblock, and only go out for a short while. Because of this, my kids call me a vampire.

As I woke up from my nap this afternoon, I realised I had one other thing in common with these mythical monsters. I live my life at odd times of the day.

Vampires tend to be awake all night, so Bram Stoker tells us (and if you can't trust someone who made a career out of writing about things like blood-sucking monsters and women who turned into giant worms, who can you trust?)

I don't stay awake all night, but I don't stay awake all day the way most people do either. Instead, I have mornings awake, and I have late afternoon/evening awake. That period of time from lunch to afternoon tea I'm asleep.

I would have fitted in very well in cultures which have a siesta in the hottest part of the day (if they still do that.) But when everyone around me gets up in the morning and stays up until they go to bed at night - I feel a bit left out of some things.

Sometimes, I've stayed awake right through nap time. Sometimes it's because I've stubbornly insisted that I was going to do things the way "normal" people do. Sometimes, it's because the weather's been too hot for me to get to sleep. What happens then, apart from the obvious fatigue, is that my pain has increased. For me, pain and fatigue go together. One always makes the other worse.

So if I want to stay out of pain, (and being out of pain is one of my favourite treats), I "opt out" of a couple of hours of every day. I live strange hours, but it works for me.


  1. Funny you should mention your kids calling you a vampire. Since I was an early teenager I had an aversion to sunlight progressively getting worse over the years along with other symptoms strange sleeping patterns rashes breathing problems kidney problems. It got to the point where I never opened my curtains and had to leave my teaching job. my family not understanding the concept of how daylight made me feel so very ill they used to be very hurtful and say I wasn’t normal I was more like a vampire ....then it happened just over a year ago I got the diagnosis yes it was LUPUS I wasn’t odd or insane I actually had an illness for a few minutes I actually felt relief that my symptoms weren’t in my mind and a medical consultant was actually telling me this. Then reality kicked in racking my brains to remember what lupus was I knew it was bad but couldn’t remember why. Standing outside the hospital waiting for my biopsy and tests that had been scheduled for half an hour later I rang my dad and told him what the consultant suspected he said don’t be stupid you can’t have lupus people die with that. My world was turned upside down in an instant but thankfully modern medicine has moved on and people can be treated. When I got home and told my family the diagnosis my youngest son said mam you are a vampire you’re not going to bite my neck in the middle of the night are you. I laugh about it now so does he I now have regular consultant checks and on the old favourite anti-malarials and sunblock and steroids when needed I have returned back to teaching 2days a week minimising my exposure to sunlight and moderate life changes but in England lupus awareness lags far behind other countries and my condition is still treated with suspicion and ignorance as most of the time I don’t look sick…lupus sucks …… I enjoyed reading your blog

  2. michele from Cardiff UK26 December 2014 at 06:16

    Hello - I very much relate to this - thanks for sharing - Most around me dont seem to get what I am going through. I noticed the same sleep patterns that you describe and just can't force myself unless I take bigged doses of prednisolone. The damage to my bones is accumulating and I have the start of cateracts. I think these are too high a prices to pay to keep a sleep pattern that suits others. I have a mixed connective tissue ddisorder at the root of things.

  3. Great post. I'm going through some of these issues as well..


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