World Lupus Day
Blog post by Iris Carden
The tenth of May is World Lupus Day.
It’s a day set aside to help promote awareness of lupus and the need for research and funding.
For lupies, it’s a reminder that we’re not alone in this constant fight to survive, and that in the year since we last stopped to think about it, other lupies have given in.
I once joked that the way to mark the day was with pain relief and a long nap. I felt guilty about that, and then started the blog Sometimes, it is Lupus. I ran that for a decade. It’s closed down now, but the Australian national archive was archiving it, so it probably exists in some format somewhere.
I’ve reached a point now, where I want to use my little bit of energy to focus on my creative work, which is why for five days a week this blog features my short stories or poetry. Lupus however, still has a major impact on my life, so I do still feel a need to occasionally try to highlight what it’s like to live with it.
Because chronic illnesses hunt in packs, and because I have been taking steroids for over a decade, I now have diabetes as well as lupus. It doesn’t change much, just adds an extra tablet to the mountain I take each day, and a twice daily finger prick test.
So what does lupus mean for my everyday life? Well, here’s a little list:
- Pills, pills, pills. I take pills by the handful. Some of them are seriously dangerous, such as the daily steroid, and the weekly chemotherapy tablet. (Methotrexate: cancer patients take it in large doses over a short period of time, I’ve been taking a small dose once a week for well over a decade. If I ever get complacent about it, I just have to look at file from Blue Care for my cleaner, with the “cytotoxic” warning stickers all over it.) People have often told me I shouldn’t take those pills, because they’re so dangerous. What can I say? If I ever decide I don’t want to be alive any more, I’ll stop taking them.
- Fatigue. When I was working full time, playing competitive sport, and studying part time, with young kids, I thought I knew what it was to be tired. Believe me, I knew no such thing. There are days now when I am sure my hair and my bones are tired.
- Cognitive dysfunction. This is one of the big reasons I can’t work. I never know when my mind will simply refuse to work. I forget words (when I’m talking, I rarely have that trouble when I’m writing) and find myself saying “you know, the thing that does the thing, it’s all thingy.” That’s not great when your work requires speaking coherently. I’ve had occasionally hallucinations. Now, I’m having weird memory issues. The other day, I decided my pale blue boots with the pink/brown flowers would go well with my dress, except when I got the boots out of the wardrobe, they were black with flowers.
- Pain. People who have never had chronic pain probably have trouble understanding. I am always in pain. That is my normal life. Think about when the doctor asks what your pain in on a scale of one to ten. I’m always at least at three. My pain has to be higher than that, to the point where it’s interfering with functioning, before I take paracetamol or non-steroidal anti-inflammatory pills. I do have opioid tablets, I avoid them as much as I possibly can, but will at times take them so I can sleep on bad pain nights. If I don’t sleep the pain gets worse. If the pain gets worse, I don’t sleep. You can see where that’s going.
- Untrustworthy immune system. In this time of pandemic, going outside is scary for everyone, but it’s especially scary for people with suppressed immune systems. (That chemotherapy drug mentioned earlier, is an immunosuppressant, so is my steroid and one of the other drugs I take.) Lupus is an autoimmune disease, so my immune system is not only untrustworthy, it is trying to kill me. Immunosuppressant drugs are good for damping down that overactive immune system. They’re not good for surviving a pandemic.
- Rashes. If there’s a red rash all over my face, that’s a fair sign I’m having a lupus flare up. If there’s a lumpy bumpy rash on my shoulders and arms, that means I’ve been exposed to sunlight. Yes, lupies tend to be allergic to sunlight. When I was first diagnosed, my kids kept calling me a vampire.
- Organ failure. Here’s a happy little fact about lupus: it can attack any organ any time. I actually lost an organ, after months of extreme pain and unexplained inflammation, shortly before my lupus was diagnosed. I’m very keen to protect my remaining organs.
- Diet. I am sensitive to both gluten and dairy products. They cause all kinds of awful gut problems. In addition to those dietary restrictions, I’ve spent a couple of years now on an anti-inflammatory diet. That cuts out red meat, encourages eating fermented foods, and anti-inflammatory spices. I only eat during eight hours of the day, with a sixteen hour fast time. After diabetes was diagnosed, the dietician modified it slightly.
- Unreliability. I have serious issues with making plans with anyone for any reason. I don’t know today if I will be functioning at all tomorrow. I don’t even really know if this afternoon I will be as well as I am this morning.
- Dry mouth and dry eyes. When I started this blog, I was going to read my stories for the accompanying podcast. I can’t. I can’t speak that long any more. Years of my mouth and throat being dry have made it impossible. I am constantly drinking water, tea, coffee, soda water, etc. I even use a mouth moisturiser that’s basically artificial saliva. It doesn’t fix anything, just helps to make things slightly more bearable. I have a gel goo to put in my eyes morning and night, sometimes it just seems to be absorbed instantly. My eyes get so dry that when I do occasionally produce natural tears, they burn.
So that’s my lupie life, or at least some aspects of it. When the 10th of May rolls around, spare a thought for the lupies around you.