Archive for January, 2012


Over the last couple of weeks I’ve been building a flare. I don’t think there’s been anything in particular to cause it, just a little bit of everything. It’s difficult to pace yourself when other people’s expectations of Christmas, New Year and “family emergencies” come into play. I don’t get stressed about it… I go with it. If I got stressed about these things it would not avoid it or make things easier. It’d just make things ten times worse. So I go along with it in the anticipation of what is to come. And here it is. The first time I’ve written a post in ages in conjunction with the first time I’ve had the time/energy/focus to write (mainly because the energy and focus aren’t there for the bigger tasks).

The week before last, on Wednesday after I’d just done 8hrs of lifting, carrying, pushing and pulling and probably looked pretty horrendous, was the first time I’d seen occupational health. It was half an hour of “we can’t find your paperwork, could you fill it out again?” I told them it’d be best if I took the paperwork home and brought it back for them, to which they agreed.

This Wednesday just gone, my appointment was at the beginning of my shift… and I looked and felt worse. Exhausted and in pain at the start of a shift is never a good thing and when occupational health are concerned it is rarely a good thing.
After two hours (and cancelling her next two appointments), the nurse didn’t want me lifting, carrying, pushing, pulling, using stairs, standing, walking, using mechanical equipment, even being near a forklift… (in other words it looked like I was out of a job). She referred me to the doctor… as soon as she could.

Thursday with the nurse and doctor went a little better. After introducing himself as “the Doc” it became quickly apparent that his experience of lupus extended beyond the textbook. His opinion was, that since I had been doing the job for almost a year now with minimal time off (although probably could have done with some) he could see no harm in my continuing as long as a few elements were adhered to.

1. Due to my photosensitivity I must now wear my eyewear at all times on site along with ensuring that my sunscreen is reapplied mid-shift on sunny days. He is also recommending that work provide a more suitable uniform (his own recommendation was merino wool… we shall see how that pans out!)

2. Because of Raynaud’s I should be wearing appropriate gloves and footwear i.e. neoprene safety gloves and Gortex lined safety boots (the gloves being thirty times the price of the standard gloves on site, and the shoes being at least twice as much we shall, again, see how that pans out)

He’s also recommending additional time sick before triggering a disciplinary, and given what happened in the last place, that is what I’ve been after.

This all being said there is more than enough chance for it to still go pear-shaped. Nothing’s been confirmed in the ways of uniform or sick allowance yet…

But back to the now. I saw, before my first trip to occy health, that I was coming up to a flare. Given that I had about two weeks holiday to take before April, I decided that a tactful use of a weeks holiday would go down well. So here I am, sat on the sofa absolutely knackered from sleeping all morning and the picking up of a few bits of litter from the front garden. If I’d have been at work… Lord only knows. Whether I’d have even made it to work is probably the bigger question.

So yeah. Holiday well timed, occy health on my side… even though I’m having a flare up, I can cope with this.

A friend posted a picture in one of the many facebook groups I’m in which I thought was incredibly apt for us Lupies. It seemed to put things into perspective quite well. A “normal” definition of “once around the block” seems easy enough, but when you’re having a flare that’s a whole other story!

Once around the block

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