Monday, 9 April 2018

It's Complicated

Image: dog holding toy hotdog.  Text: "What can you eat?"  It's complicated.I received an email from a screenwriter who is writing a script which includes a character with lupus. One of the questions he asked me was: "What can you eat?"

Well that's a big question, isn't it?

What I can eat has changed several times over the years. None of those changes have increased the things I can eat, sadly.

So what can I eat?


  • Not dairy.  It used to just be no lactose, because lactose gives me reflux - nausea and heartburn, sometimes bad enough to be mistaken for heart attack.  Now it's no dairy at all, because even lactose-free dairy products are causing severe post-nasal drip.  If I eat dairy products, I end up choking on post-nasal drip.  Waking up in the middle of the night coughing and choking is most unpleasant.  I've decided I don't want to die by drowning on my own secretions.  If I did, I could end up as an urban legend like Bloody Mary - you know, you look in the mirror and say three times "Snotty Iris", and my ghost appears and drowns you in snot.  So, it's now a no on the dairy.
  • Not gluten.  Gluten upsets my gut - gives me irritable bowel syndrome - wild, unpredictable, swings between constipation and diarrhoea. It's most unpleasant, and can be very embarrassing.
  • Not much fat or alcohol.  Lupus has been messing with my liver for years.  My liver enzymes are always off at every blood test.  (Sometimes too high, sometimes too low, totally unpredictable.)  I need to be gentle on my liver.  So I eat low fat food mostly, and limit to alcohol to the occasional glass of wine at Christmas or a birthday.
  • Low GI carbohydrates.  This is the newest thing.  My pancreas is struggling, so my blood sugar is now not being properly regulated.  Yes, the name for that is diabetes.  (Because I didn't have enough health issues already.)  So now I have to be aware of the Glycaemic Index of the carbohydrates I eat, and not over-eat carbs in general.
What can I eat?  Well, it's complicated, and it gets more complicated all the time.

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Saturday, 7 April 2018

Flare Ongoing

Image: Sad dog, with toy crocodile leaning over arm of lounge.
My dog, missing out on her walk.
I'm still struggling with that flare that came up after my trip to my brother's funeral, but I'm slowly seeing signs of things improving.

There are signs of hope.  A couple of times, I've managed my morning walk with my dog.  That's the basis of the exercise program I was working on with the exercise physiologist before this flare started.

The whole program was the ten minute walk every morning, tai chi on two days per week, hydrotherapy once per week, and some strength exercises with an exercise band on the same days as the extra exercise.

Using the morning walk as a basis for the exercise program is a great idea, because I have someone to go with who really misses it when I can't go.  She's my incentive when I just don't feel like a walk.  I have to be really sick to disappoint her.

Image: dog, lying on her back with her legs up in the air, with toy crocodile also on its back with legs in the air.
My dog, after a walk.
So far, each time I've had a morning walk, I've been unable to do it again the next day, but one walk is better than no walk.

Eventually, I will be able have a walk every morning again, then I can start to introduce the rest of my exercise program - slowly, one part at a time, just the same way I did it last time around.

One of the ongoing frustrations of life with lupus is having to establish the "normal" routine over again each time a flare passes.