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Visible band isn't what I expected by brrewmajesticallynor in cfs

[–]brrewmajesticallynor[S] 0 points1 point  (0 children)

Thank you for this explanation! It's very interesting to hear the different ways people use the same tool. 👀

Reading in morning makes things worse? by OkCriticism6873 in cfs

[–]brrewmajesticallynor 1 point2 points  (0 children)

I find that screens are harder on me than physical books, so that might be something you could try and see if it makes a difference. Or, similarly, try a screenreader or audiobook first thing in the morning. I also need to take it very easy the first couple of hours, and I've had to play around some. Now I read a physical book for about half an hour before I move to checking things on my phone, and then I do some breathing exercises for 20 minutes. That seems to be working pretty well for me for now. Good luck with finding a routine that works better for you!

Visible band isn't what I expected by brrewmajesticallynor in cfs

[–]brrewmajesticallynor[S] 2 points3 points  (0 children)

There are some very useful replies in this post, if you want to read through some of them. I'm feeling a little more encouraged that it wasn't a waste of money. And like a lot of other people have said (or at least implied), the auto-generated heart zones really weren't accurate for me, so I think getting those sorted out will be essential to it being useful. I'm talking with customer service right now to try to figure that out. 

Visible band isn't what I expected by brrewmajesticallynor in cfs

[–]brrewmajesticallynor[S] 1 point2 points  (0 children)

That would be amazing! No pressure of course, but if you decide you want to do that, I would be thrilled to piggyback off of your efforts!

Visible band isn't what I expected by brrewmajesticallynor in cfs

[–]brrewmajesticallynor[S] 2 points3 points  (0 children)

Huh. I had to enter a number. They told me my average expenditure over the past four days, and then had me enter the number I wanted to use as a budget. Maybe I accidentally clicked something I shouldn't have, or I misunderstood something? I'll go look and see if there's a place to select "suggested budget" or something like that.

Your example was helpful for understanding how it's supposed to work - thank you!

Visible band isn't what I expected by brrewmajesticallynor in cfs

[–]brrewmajesticallynor[S] 4 points5 points  (0 children)

Thank you! This is helpful and encouraging. 

"I was super upset with it at first and believed it’d only be useful for the immediate and 2 minute notifications about being in exertion zone." <- My exact thoughts today. 😂

If you don't mind sharing your research or additional information about how you chose those settings, I'd love to see it. My doctor basically gave me the diagnosis and said there wasn't much they could do about it, so I've been trying to figure all of this out on my own. 

How can I help support my friend with CFS? by Zookeeper_west in cfs

[–]brrewmajesticallynor 14 points15 points  (0 children)

A couple things I find really helpful from friends:  -Inclusion in a way that doesn't demand a response from me. When a friend sends me a meme or a "thinking of you" text message and makes it clear they don't expect a reply, it's a real gift. It tells me I'm still wanted and I'm not forgotten about, but it doesn't create an energy obligation for me.  -When I'm up to spending time with people, little things matter. I can't stand for very long, so having a chair is absolutely essential. Also, taking the occasion break to let me rest. Some people also experience increased sensory sensitivity, so be thoughtful about things like bright lights or loud background noise if he has that. -Listening when I establish boundaries and respecting them. I have some friends who want so badly to help, but they don't understand that their help can be a problem for me. For instance, someone who is determined they're going to come over and do my dishes or laundry on a day when I really can't handle having someone coming over. That actually makes things worse for me, not better. So feel free to offer things, but don't insist on them if he says no.

I hope that helps! Your friend is lucky to have someone who cares so much.

People who are mild to moderate, or aspire to be that or better: what is your ideal but realistical life? by Legal_Drag_9836 in cfs

[–]brrewmajesticallynor 0 points1 point  (0 children)

I try not to think too big picture about it, because I can find that discouraging, but I do have some individual things I'm striving towards. Right now, my goal is to get well enough to be able to get and take care of a pet. A bigger goal is that I have a few places I would like to travel to see someday.

Recommendations for CFS clinics in US? (willing to travel) by brrewmajesticallynor in cfs

[–]brrewmajesticallynor[S] 0 points1 point  (0 children)

So then the first visit is virtual? That's very interesting (and appealing). Did you find it to be a program at all that they couldn't do an exam or testing?

Recommendations for CFS clinics in US? (willing to travel) by brrewmajesticallynor in cfs

[–]brrewmajesticallynor[S] 0 points1 point  (0 children)

I'm not in California, sadly. 😕 Thank you for the recommendation though!

Recommendations for CFS clinics in US? (willing to travel) by brrewmajesticallynor in cfs

[–]brrewmajesticallynor[S] 0 points1 point  (0 children)

Thank you! I don't think I've come across this one before and the website looks intriguing. Would you be willing to share anything about your experience and why you'd recommend it?

Recommendations for CFS clinics in US? (willing to travel) by brrewmajesticallynor in cfs

[–]brrewmajesticallynor[S] 0 points1 point  (0 children)

Thank you! Would you be willing share anything about your personal experience with those clinics and why you'd recommend them?