Christine Molloy, author of
Tales From the Dry Side, and blogger extraordinaire has written yet another excellent post on her blog
Thoughts and Ramblings on Life, Love, and Health. It's entitled 'Making Life Work' and provides a glimpse of the accommodations she has made in her life with autoimmune disease:
So it's about 4pm on a weeknight and I just finished cooking part of tonight's dinner. And, that's late for me. I'm usually done earlier than 4pm, depending on how much I am cooking.
I know, it's weird.
And I am finally OK with that.
We don't eat supper that early. Usually we eat anytime between 5-6:30pm. For me, the earlier the better, but my husband does have a regular full-time job and well, he works until 5pm, at least. So it is pretty common for me to pre-cook dinner and then just nuke it when we are ready to sit down and eat. Because the reality is, if it doesn't get cooked early, there may be no supper. Except maybe cereal. Or take-out. And well, a healthy eating plan doesn't involve much of either of those. I don't know what people with chronic illnesses did before the invention of the microwave!
This is just one of the many accommodations I have had to figure out and accept since I realized that my energy levels are going to be unpredictable...like, for the rest of my life. Pre-Sjögren's, I would have the typical mid-afternoon energy slump like everyone else, and then would bounce right back. But autoimmune disease redefines the meaning of the word fatigue. We are talking mind-numbing, body stopping, I can't take another step or blink my eye kind of exhaustion. There is oftentimes no warning and when it hits, look out. For some of us, it's a constant, pervasive kind of tiredness.
In the past, I would ignore the warning signals my body was attempting to give me. I was too busy trying to function as a person without an illness, in a busy world where chronic illness is usually not accepted or understood. In a world where the motto is "go, go, go", no matter what the price to our bodies may be. Just keep caffeinating. Just keep doing. And then I would get frustrated that my body couldn't keep up. Continue reading here.
How are YOU making life work with Sjogren's Syndrome?
1 comment:
My coping strategy involves just cutting back on extra activities drastically, and lowering my housekeeping standards a little bit. I am working part time, 6 hours a day, and I take a good hour or two to sit as soon as I get home.
I cook early, like Christine, and we microwave things when it is time. Often I try to do some of the cooking on the weekend. We are a family of four, so I cook quite a bit. This last weekend I browned a huge thing of hamburger and froze half to use later in the month. I also bought 8 chicken breasts, with plans to use 4 this week, I then put the remaining 4 in the crockpot while I was browning the hamburger. When they were done I shredded the meat and froze it to use later in the month. I also plan my menu by the month. I just print a calendar page for the month and pencil in meals. I save the copies and just look through old ones to make the current month. This makes it easier for me to make a shopping list. For some reason getting groceries wears me out, and the fewer trips I have to make the
better.
I break up my housework, too. I try to do one thing each day, like vacuum, or mop, or dust. And I do one load of laundry a day. I also accept any and all help offered by my family!
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