Examples of extreme pacing or ART

[Dr.Patient]

@Dr.Patient Aquis exfoliating washcloth or mitt. The cloth has a textured side for exfoliating (you won't have to use energy to scrub) and the other side is smoother for more delicate cleansing. It does help increase microcirculation and you will feel cleaner longer.

Thank you! So, I can just wipe off with some soap on the textured side instead of scrubbing, that is great!

 

[SOC]

Can anybody suggest some type of cloth, etc that can be used to wipe, instead of scrubbing, during a shower, thanks. Scrubbing takes a lot of energy. Looking for something that I can put soap on and just wipe...

I use a Moja cloth. Gentle wiping is all that's necessary, nothing vigorous. I like it. No doubt there are other similar items, but this one works for me, so I stay with it.

 

[Valentijn]

How is your Mio doing? So I can just put in in the exercise mode when I'm out standing or walking, and in the shower, and it will beep when my heart rate goes below or above a range, like 70 - 96, thanks.

The Mio is still working great. Yup. Though I think mine initially beeps under 65 or over 100. And does a double beep under 60 or over 110. And it's waterproof so long as I'm not using the buttons while it's submerged/really wet, so is perfect for pacing in the shower.

@Valentijn I have been taking hot showers until now, and discovered that it was a huge mistake, since hot increases the heart rate. I have now put it to just warm enough so I don't feel cold. Made me think- all winter I have been using an electric blanket, setting it to 8-9 out of 10 heat, and sleep for 12-13 hours- that is also probably a bad idea. From now on, I'm setting the blanket to just warm enough to not feel cold, and use that and the central heating on cold days. I haven't used the central heating much this past winter, opting instead to use the electric blanket at high setting.

The electric blanket is probably okay when you're lying down or sitting with your feet up. Vasodilation then isn't likely to cause as many problems, since you don't have to work nearly as hard to get blood into your brain as you do when standing. But yeah, I used to love hot baths and getting nice and toasty, whereas now I generally do better if I just stay warm enough to not be uncomfortably cold.

 

[Dr.Patient]

@Valentijn I can set the heart rate settings to my own limits, right?

 

[Valentijn]

@Valentijn I can set the heart rate settings to my own limits, right?

Yup! Two low and two high. Low and high sound the same (one or two beeps), but low flashes blue and high flashes red. The colors are nice when I'm in the shower without my glasses and water's covering the display, since it's pretty much all I can see

 

[alice111]

One of the best things my first ME/CFS specialist (who didn't do enough for me otherwise) told me was to lay down in the early afternoon every day no matter how I felt. Eyes closed, no activities, but audiobook or music okay. If I was still awake and felt fine after an hour, I could get up. If I fell asleep, I should sleep as long as my body wanted, no setting alarms to wake up.

I was astonished at how well that worked. I soon realized this was a remarkably useful management technique for me. When my health was worse, I fell asleep and slept for 5-7 hours. When I was having a good stretch, I'd be up again in an hour having had a good rest and relax. It became my way of judging my overall progress -- as I improved with antivirals and OI treatments I had shorter and shorter naps and fewer and fewer days I didn't get up after an hour. It also helped me realize when I was trying to do too much as I felt better -- if my naps were getting longer again, I was doing too much.

Not to take things off topic but @SOC you refer to OI treatments -what did this involve?
Thanks!

 

[SOC]

Not to take things off topic but @SOC you refer to OI treatments -what did this involve?
Thanks!

I take florinef and verapamil. I also, on the advice of my specialist, drink 3 L of water daily, at least one of which is electrolyte water. I fluid load before bed and first thing in the morning to compensate for overnight dehydration, which is pretty common in people whose OI is at least partly caused by low blood volume.

My daughter also has OI, but hers presents somewhat differently, so while she also takes florinef, she takes midodrine mid-day. She also does the fluids/electrolytes thing.

I should mention that it wasn't just antivirals and OI treatment that helped improve my condition. I take supplemental T3 and T4 for hypothyroid, Equilibrant, trazodone for sleep, Zyrtec twice daily (so double dose), high dose CoQ10, and a slew of other supplements. So while a limited number of things make the biggest difference, it takes a lot of things giving smaller improvements to keep me functioning above completely housebound.