Friday, September 16, 2016

Our poll: Fatigue is the biggest problem for ET patients

Here's my cat Edgar. He's not
fatigued. He's just thinking about
how to get the gopher in my yard
out of its hole. 
Our last Periodic Poll revealed that 100 percent of ET respondents found fatigue the most bothersome part of dealing with their disease. Headaches were also mentioned by about half of the respondents. Bone pain visual distortions were reported by 18 percent of respondents.

No one reported itching or spleen enlargement as their most bothersome symptoms.

Because fatigue seems to be the worst problem faced by ET patients, our current Periodic Poll takes a look at how you define fatigue. Is it mental? Physical? Do you feel sleepy? Burned out? Run down? Talk about how you define fatigue (all responses are anonymous), and I'll report the results in a couple of weeks.

If you've found some good ways to cope with your fatigue--or ways to generate some energy in order to do what has to be done--please share them on here or on our Facebook page (link at right).

Be well!

2 comments:

  1. Mostly, I'm cutting out things that don't have to done. We either eat out for family gatherings or order in. I'm trying to declutter. It's make it easier to clean and there's less to keep up with. Our grocery is starting a curbside service where you order online and they deliver to your car at the curb. Presents are bought online which I should have started doing years ago. There's much selection and if you look, usually you can find better prices. I do stick with larger organizations that I'm familiar with -- Amazon, Walmart, etc. If I'm too tired, I ask for help. My husband and kids (all adults) will help when asked. We are thinking about moving into a patio home. You own the home but they take care of the outside maintenance for a fee. It will be smaller so less cleaning. I'm trying to get my mom to move to the same complex so it will be easier when she starts to need more help. I also try to exercise most days and do yoga but I do as much or as little as I feel like doing. Fortunately, I have a lot of leave time accumulated at work so I have flexibility when I need it.

    ReplyDelete
  2. Hi, Tami. Yes, online shopping is great. I can still do the grocery shopping, and we don't have curbside service in our rural area. I hope it becomes more widely available. A patio home sounds like a great idea. I wish you well with your Mom. Dealing with a chronic illness and caring for an elderly parent is difficult. Thanks for those tips.

    ReplyDelete

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.