Lupus or COVID?

Lupus or COVID? blog post by Iris Carden

For some months now, I’ve been weaning of steroids. Along the way the aches and pains and fatigue of lupus were getting worse.

Then at Christmas time, I caught COVID.

The aches and pains and fatigue became much, much worse, along with a horrible cough.

It’s weeks later, and I’m still in pain and constantly exhausted. My daughter, who caught COVID at the same time as me is still struggling as well, so I may still be recovering from COVID. In my case, however, it could just be my “new normal”: lupus without steroid.

I’ve been slowly trying to drag myself back to normal life, catching up the work around the house I’ve let slip, trying to get back to my exercise.

My first attempt at a post-COVID walk was good. I took Fanta and we went for about two thirds of our old normal walk. There were no ill effects. It was great.

I took Fanta out again the next day, barely made it a hundred metres from the front door, when my legs turned to jelly, I was gasping for breath, coughing constantly. My very disappointed dog and I turned back.

A week later, I decided to try again. This time, I decided, I’d walk on alternate days to get started.

Fanta and I set out, got to the point where we turn around, for the two-thirds the length of our normal walk, and started back. Then the fatigue hit. If you want a full description of lupus fatigue, you’ll find it in Chapter 4 of Family Lies (published next Saturday). I felt I couldn’t walk any further.

I struggled the last couple of metres to the bus stop where I could sit down. Fanta was not happy about sitting at the bus stop for half an hour, but it took me that long to recover enough to struggle back home.

That last walk was over a week ago. I haven’t been brave enough to try again, much to Fanta’s disappointment.

I’m psyching myself up to try again this afternoon, just to the end of our block and back, about a five minute walk. That’s really not going to make Fanta happy, but I think I’ve got to start very small.

If this is just the last gasp of COVID recovery, hopefully it will be over soon. If it’s lupus without steroids, I have to have a serious discussion with the rheumatologist at my next appointment.

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