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?

9 thoughts on “The Sunday Salon: Lupus sucks

  1. Joanna April 22, 2012 at 11:56 am

    It sounds like a challenge Kate and it must make knowing yourself one of your biggest projects. Thank you for the recent book reviews, I have kept up from my feed reader – you are a great reviewer.

    I want to go see Cabin in the Woods – hopefully soon!

  2. Nose in a book April 22, 2012 at 12:04 pm

    Joanna Thank you. And yes, you should definitely go see Cabin in the Woods soon!

  3. Laurel-Rain Snow April 22, 2012 at 1:14 pm

    You seem to have a very positive attitude…even when talking about the “sucky” parts, you are matter-of-fact and accepting.

    I think the doctor’s attitude seemed demeaning, too. Why do they do that?

    Good luck with the books this week…and I’m curious about The Cabin in the Woods. After the read-a-thon, I’m ready to watch movies.


  4. Athena April 22, 2012 at 3:06 pm

    I hope you feel better soon. I must chime in to say that I love Foyles. I use to live in London and it was one of my favourite stores for browsing new books. Have a good week!

  5. Becca April 22, 2012 at 4:22 pm

    So sorry to hear that 🙂 Hope you have some good books for company while you’re getting better, and the strength to read them!

  6. Nose in a book April 22, 2012 at 5:28 pm

    Laurel-Rain, Athena, Becca Thank you.

  7. lisa s April 23, 2012 at 3:17 am

    Thank-you for your honesty about your illness. That is very difficult to go through, but what a blessing to have someone that knows when to have you relax and take a break. I think it’s wonderful that you have a great support system and a wonderful outlet: reading. I have Chronic Fatigue Syndrome and Fibromyaglia, which seems to flare up more now that I am still recovering from a shoulder surgery. I slept a whole day on Friday and couldn’t stay awake no matter what. While my health issues aren’t as serious as yours, I do understand how limiting it can be when fatigue takes over. Be good to yourself and I hope you have a great week snuggled with books 😀

  8. jenn aka the picky girl April 25, 2012 at 3:22 am

    My mom has lupus, so, as much as someone without it can, I get it. It’s good that Tim understands that because rest is so important. Take care of yourself. Your body knows what you need even when it’s busy doing stuff that makes you hurt.

  9. Nose in a book April 25, 2012 at 7:35 am

    lisa s Thank you for your comment. Stay strong against your illnesses and be good to yourself also 🙂

    jenn Sorry to hear your mum suffers too. I hope she is generally doing okay. Thanks for stopping by.

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