fatigue | Nose in a book

The Sunday Salon: Lupus sucks

April 22, 2012 9 Comments

So last weekend‘s feeling a bit bleh turned into a lupus flare and I have lost half my week to the black hole of SLE. Which sucks.

I’m afraid I’m going to vent a little bit about being ill now. It is not my most interesting topic. In many ways I should be grateful that my major lupus symptoms – fatigue and brain fog, with added dizziness and double vision if I push myself – are not painful. Even my lupus symptoms that do hurt – headaches and joint pains – are quite low-level pain. My specialist called them “irritants” once, which is probably accurate but also a little demeaning. Because pain or not, lupus can (and does) still incapacitate me. When it flares I can’t think, I can’t make the most basic decisions like what to eat, in fact I get panicky if faced by a choice. I can’t hold a conversation. I certainly can’t read a book. Standing up long enough to shower completely drains me.

It passes. I am lucky that I only get really bad for a few days at a time now, thanks to medication and fatigue-management techniques. I am lucky that Tim knows me well enough to spot the danger signs and make me rest (if I can be persuaded). But it never goes away. I am always tired. I am always one push-too-hard away from being “lupus tired”.

Rant over.

While I have not read much this week, I do have a small backlog of book reviews so I was still able to post about Balthazar and Mountolive. Yesterday Tim took me to the cinema to see Cabin in the Woods (which I knew nearly nothing about beforehand and that was totally the best way to see it so I will say nothing other than “it’s great”) and to Foyles bookshop, because the TBR is always hungry. Today I will be mostly sleeping.

How was your week?

World Lupus Day 2011

May 10, 2011 6 Comments

Yes, it’s that time of year again. I had forgotten all about it and then Stephen Fry kindly tweeted a reminder. In timely fashion I am struggling to write very much about World Lupus Day because my lupus is flaring a little and stealing all my words. It does that.

You see, when I talk about fatigue I don’t just mean I feel tired; there’s a whole host of fun that comes with the tiredness. I suppose it’s not unlike a bad hangover combined with lack of sleep – there’s the headache, dizziness, nausea, dry mouth, double vision and, of course, the brain fog.

Brain fog? I remember the first time the rheumatologist said the words to me and I felt such huge relief. That bizarre cotton-woolly feeling of not being able to think straight, of losing words, of not being able to answer simple questions – it’s real! And I’m not the only one!

And this is why events like World Lupus Day are so important. Diagnosis is vital even in “mild cases” like mine and, of course it is life-saving in many other cases. But it’s also hugely helpful for other people to know about lupus and what it means for me and others. And a little more support for research into new treatments would also be a good thing.

To brighten up this post, here is a random old picture I took of a butterfly, because they’re the symbol of Lupus UK.