The Sunday Salon: Lupus sucks

The Sunday Salon

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.

Seek the truth

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?

Undecided about mornings

One of the joys of having lupus is the many blood tests I have to have. Okay, that was sarcastic but the regular trips to the GP surgery are actually quite fun. Maybe not fun. Diversions from the normal routine that aren’t too unpleasant. That’s closer.

I always book my blood tests for first thing in the morning on a work day. I stroll up the hill against the flow of people heading to work or school, spend about two minutes with a nurse and then amble on my way to work. I’ve warned my manager that I’ll be a little late in, so I’m in no hurry. I sometimes need a pick-me-up after having blood drawn so I treat myself to a sugary breakfast. I get to see a slightly different view of my neighbourhood, like the lollipop man outside the local primary school who makes crossing the road so much easier. And it’s morning, which is a time I think I like. Probably.

The blood test itself isn’t too bad these days. I’m inured to the whole thing. I’m lucky that the two practice nurses are great (that’s nurses at the medical practice, not nurses who are practising on me, obviously, though I did have a student nurse draw my blood once – it wasn’t pleasant, I had to lie down for a while). You might think all nurses are equally capable of taking blood but believe me, you’re wrong. I show them which vein looks good and we chat a little about holidays, family, weather, whatever. Before I know it the tourniquet’s off, the plaster’s on and I’m saying goodbye. While my health is steady as it has been all year (I’m not superstitious but I feel I should touch wood or something here) I only have to have one sample taken, which is a whole lot better than the armful I used to give every month.

But regardless I’m always a little nervous beforehand and a little relieved afterward. As I was today. It was particularly cold, with a biting wind and I was worried I’d chosen a bad outfit for getting at my inner arm easily. But it all went fine and I was feeling cheerful as I bought my cappuccino and brownie from A Cappella, then strolled down the road sipping at my drink, having a nose at a shop that’s opening soon and someone’s house covered in scaffold. Now maybe I wasn’t paying enough attention to where I was going or maybe I wasn’t fully awake still but personally I blame the police siren and the car that looked like it was about to mount the pavement and head straight for me. Either way I walked into a wall and spilled my coffee all down me. Perfect.

My day wasn’t ruined but I’m still uncertain about this morning thing. It might just be the lupus, but another hour of sleep sounds a whole lot better than an early morning walk to me.