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| It's me! I'm running the yarn swap table at the Michigan Fiber Festival. I look pretty good for somebody with cancer who's running on about three hours of sleep, don't I? Despite challenges, it was a great time, but ET makes this complicated. |
As you may recall from previous blog entries, I went to physical therapy this summer for sciatica. The PT really helped--no more sciatica!--and I can sleep through the night now. That's really important because when a common problem like sciatica messes with your sleep it can make you feel run down really fast. That's because you're already fighting fatigue (the Number One complaint of ET patients) from the cancer (and chemo for some of us), and the lack of sleep makes you extra fatigued. Lack of sleep also worsens the brain fog. And lack of sleep for long periods can also be hard on your general wellness. ET complicates everything!
My physical therapists discovered that the knee pain I was having probably isn't related to the sciatica. Nope, it's good old fashioned osteoarthritis that might eventually need replacement. Many ET patients have had successful orthopedic surgery, but there is an extra layer of concern with bleeding and clotting during surgeries that needs to be worked out between the surgeon and the hematology oncologist. For right now, I'm wearing a neoprene knee brace that helps reduce swelling and makes my knee feel better when I have to sit or stand for long periods--as I do when I teach. Hoping to stave off surgery forever (or at least a long time) because ET complicates everything!
My stamina has worsened in the last year. Probably some of this is due to age, but ET is a progressive disease, which means you will get slowly worse. It is very easy to want to just sit in the rocking chair reading books and petting cats. But that means giving up things I enjoy, plus being sedentary isn't good for your energy levels if you have ET. So this year, I volunteered to work the yarn swap table for a day at the Michigan Fiber Festival. I figured we could also do some tent camping at the festival, something we haven't done since our son was little, and enjoy some quality outdoor time. And it was a LOT of fun. I met nice people, enjoyed the outdoors, and saw a bluebird! But things didn't go as planned. I can't rough it any more, so I didn't get a lot of sleep, and we left a day early. I was sorry to miss some of my favorite animal exhibits, but I'm willing to try again with comfier equipment. ET complicates everything!
Hey, notice that I'm baggy top I'm wearing in that photo above? I've noticed some abdominal discomfort and swelling right upper quadrant that I think is spleen enlargement, something pretty common to ET patients. As a result, I'm off the form-fitting clothing. Baggier is comfier and more flattering, but it means making wardrobe changes. ET complicates everything!
We're experiencing big changes at the college where I teach, and change brings stress, and stress brings fatigue. Especially if you have ET because ET complicates everything!
Lesson learned is that we often bite off more than we can chew, and we need to set realistic expectations for ourselves as our disease progresses. Hoping that late summer (or winter for our readers in Australia and New Zealand) finds you dealing with your complications.
Be well, and feel free to offer tips for how you pace yourself here or on our FB page.
Related: Landmark survey results are in!
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ET is a serious disease that requires specialist care. Discuss anything you read here with your doctor. No comments promoting "alternative" or "natural" cures (yes, this includes Rick Simpson's Oil) will be published.