Purple water lily. Caption reads: “The insecurity of not being able to trust my own body has left me feeling insecure in other areas of my life.”


A post about chronic illness by Iris Carden

I used to be able to handle anything. Whatever happened, whatever the crisis, I would handle it in the moment even if I collapsed in a heap later.

Something has changed. I’m sure part of it is being older. At 55, I probably wouldn’t feel as invincible as I did at 25, no matter what else had happened. Lupus means that I don’t know what my body is going to do to me day by day. One day I will be fine, the next I’ll be in excruciating pain, or even in an ambulance with surprise new symptoms. That’s the life I live now.

Medication, diet and exercise moderate a lot of the problems of a rogue immune system trying to kill me, but they don’t stop the unexpected bad day. They don’t stop me being unsteady on my feet, or the occasional bout of cognitive dysfunction.

Making decisions and acting in a crisis, or even in a mildly stressful situation, now seems overwhelming. I have no confidence in my ability to handle things I wouldn’t have thought twice about before. I second-guess all my decisions and choices. I question my capacity to achieve basic things.

For the past week, up until yesterday, South East Queensland has been subjected to what authorities referred to as a “rain bomb”. Water poured from the sky, unrelenting. It was heavy, constant, drumming rain. In three days, we received at least the amount of rain we usually get in a year.

The ground was already wet, because we’ve had an unusually wet summer. Water was coming down the river system.

Simultaneously, SEQ had flash flooding from the rain and riverine flooding from water coming down from the catchments. Overfull dams had to release water further down the river or risk dam wall damage.

The last news I heard, nine people died in the floods. Much of Ipswich (where I live), and Brisbane were inundated.

It was a full scale natural disaster.

The rain and floods have moved south now, and northern New South Wales is going through what the south of Queensland did last week.

All of that makes the couple of things that happened at my place minor issues by contrast. But for me, minor issues were paralysing, making decisions, working out what to do were just beyond me.

The first issue related to my dog. She hates getting wet. She refused to go outside at all during the rain. At one stage she held on for 36 hours before being desperate enough to go outside in the downpour to urinate. On the last day of the rain, I found the wet patch of carpet in my art and writing studio. I moped it up as best I could, and decided that once the rain stopped, I would hire a carpet cleaning machine from the supermarket.

Fanta, a brindle Staffordshire bull terrier.
Fanta’s not as innocent as she looks.

When the rain stopped and the road was clear, the supermarket didn’t have any carpet cleaning machines. I realise that shouldn’t have been a surprise, but in my mind I didn’t have a plan B. It took me hours to make a decision. Currently I’m paying off a vacuum cleaner, the old one got too heavy for me to handle, so I downgraded to a stick vacuum, but I bought a high quality one, so that it would still do a decent job even though it was so small. My plan had always been to buy a carpet washer once I’d paid that off (living with pets makes keep carpet clean a nightmare.) My decision, finally, was to order a much cheaper carpet cleaner than the one I had planned to get, and to saturate the wet area with disinfectant, and keep a fan on it to try to dry it out while I wait for my cleaner to be delivered.

The other issue was this:

Fallen tree, in front of house, blocking access to car port.
The fallen tree.

The ground had become so sodden a tree in my yard simply fell over, blocking my driveway. This was quite amazing, in that had it fallen in any other direction it would have either pulled down powerlines, destroyed a fence, blocked the entire street, or damaged my carport and car.

The only thought I could come up with was to get my daughter to cut it up with our chainsaw. Our chainsaw is a tiny one, designed to make it easy to prune small branches, not for chopping up entire trees. Plan A was never going to work. It took ages for me to think to call the State Emergency Service.

The SES guys were great, and they cut up enough of the tree to clear my driveway. That’s what they do, the emergency stuff that saves lives and allows safe access to property.

That still left a large chunk of the downed tree.

Remains of fallen tree, over and around mailbox.
What’s left of the tree.

It still leaves my mailbox pretty much inaccessible. It took me two days to gather my thoughts enough to call Home Assist (program that provides subsided home maintenance to pensioners). Home Assist didn’t do stuff outside the home and recommended I contact my insurer.

My insurer isn’t answering the phone. There’s a major natural disaster going on, so they’re a bit busy. A recorded message told me to lodge a claim online. The online claim form wants me to submit a receipt for reimbursement of the cost of whatever damage occurred. I still have to find someone who can do the job and find the money to pay them upfront, something I didn’t anticipate when I emptied my bank account to buy a carpet washer. (There is money left in my bank account, but it’s not mine. It’s my mother’s for doing her grocery and other shopping online. I struggle with the mental capacity to do that some days, too.)

I think my brain just about broke at that point. I just couldn’t make a decision of what to do next.

It took a ridiculous amount of time to think to do an online search for tree removers, and email one to give me a quote for the job. I don’t know when they’ll get back to me. They’re probably quite busy at the moment.

Now I’m noticing mold in a couple of spots around the house. Don’t ask what I’m going to do about that. I have no idea. My decision-making capacity is now on strike.

That mental effort, and the overwhelming mix of emotions that came with it, has left me utterly exhausted. I will probably sleep for most of the rest of the day.

But I’m left with this thought: those couple of really minor things that happened to me in the midst of this huge disaster, were things that in a past life, I would have handled quickly and easily. I used to be able to decide what to do and be able act, with a fair degree of confidence, in almost any situation. I used to be able to do so much more for myself, without thinking to call for any kind of help. Not ever being able to rely on my body, and only intermittently being able to rely on my brain, has left me feeling very insecure.


While you’re here…

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Everything on this site is the product of human, not artificial, intelligence.


By Iris Carden

Iris Carden is an Australian indie author, mother, grandmother, and chronic illness patient. On good days, she writes. Because of the unpredictability of her health, she writes on an indie basis, not trying to meet deadlines. She lives on a disability support pension now, but her ultimate dream is to earn her own living from her writing.

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