Examples of extreme pacing or ART

[Valentijn]

Any other shower ideas, anybody?

I can prop one leg up on the edge of the bathtub. That makes a very big difference in keeping heart rate lower. Alternatively, you can cross your legs so one is resting horizontally over the other thigh.

Also, when washing my hair, it helps to lean forward a bit, bringing my head down to my hands, instead of raising my hands to the top of my head. Basically keeping the elbows down can be a big help, and not raising your arms anymore than absolutely necessary.

Other than that, I just take it slow. Depending on how quickly my heart rate recovers, it'll be about one minute of washing followed by a couple minutes of resting. And lying down as soon as I'm dry and dressed, because that process is pretty exhausting too. Then sitting up again to brush my hair, again with a lot of resting.

 

[Dr.Patient]

I can prop one leg up on the edge of the bathtub. That makes a very big difference in keeping heart rate lower. Alternatively, you can cross your legs so one is resting horizontally over the other thigh.

Also, when washing my hair, it helps to lean forward a bit, bringing my head down to my hands, instead of raising my hands to the top of my head. Basically keeping the elbows down can be a big help, and not raising your arms anymore than absolutely necessary.

Other than that, I just take it slow. Depending on how quickly my heart rate recovers, it'll be about one minute of washing followed by a couple minutes of resting. And lying down as soon as I'm dry and dressed, because that process is pretty exhausting too. Then sitting up again to brush my hair, again with a lot of resting.

Thank you, any thoughts the temperature of water...

 

[peggy-sue]

I sit on a stool to have a shower myself.
I have an energy and tangle-saving technique for washing my hair, which is long.

I start by combing it all forwards over my head, upside down.

Then I wet it.

I get hold of the shampoo bottle, and spread a thin line of it along my hand,

then apply that along the back of my head,

then I gently massage it over forwards, towards the front, getting the shampoo right through it - without tangling it.

I prop my elbows on my knees and drop my head forwards to reach my hands, so there is no real arm-raising involved.

Once the shampoo is through my hair, I bundle it up on top of my head to "soak" in the shampoo, while I get on with washing the rest of myself.

I use a long loofah to clean my back (and other places).

I've found that only showering once a week means I do need to "exfoliate", the loofah is good for that.

After rinsing the shampoo out, I put the conditioner on the ends and throw the lot backwards over my head, which gets that through it all - most at the ends and least at the roots. I use a wide toothed comb again to completely detangle, while the conditioner is on it, then rinse and wrap it in a towel "turban" to dry it.

To dry myself, I put on a towelling bathrobe and my hair in a towel, while I get on with dealing with cutting toenails and other post-shower stuff. I just turn the hairdryer onto any bits of me that that are still damp after a while in the robe.

It's too much after the washing and the humidity to try to dry myself with a towel.

Sitting on a stool and propping your elbows on your knees does mean you do a lot less arm raising stuff - and most of you is reasonably accessible from this position.

I do recommend strongly that you rinse your bum after soaping it and before trying to sit down again - I've gone sliding around the bath on a few occassions.


A very general, but incredibly important everyday energy saving thing is always, always, to have your feet raised if you are sitting.
This goes along with the general - "never stand when you can sit, never sit when you can lie down" stuff.

Knowing why helps!

It saves your heart from doing a huge amount of extra work.
Your heart has to pump all of your blood around all of your body.


Not only does your heart have to get the blood down to your feet, it has to get it back up your legs again - and that is against gravity - and very, very far away from the source of the pumping - the heart.

When you are walking around, the muscles in your legs squeeze the blood vessels and help your heart push the blood back up again.

(So never stand still either - if you must stand, shuffle around a bit.)

If you are sitting with your feet raised, you are removing the effects of gravity from the work your heart has to do. Bringing your body into a reclining position as well, will keep everything as easy as possible for your heart to do its job.
Your blood vessels will all be level with your heart, it will only need to push the blood along, not up and down as well.

 

[Dr.Patient]

@peggy-sue Thanks a lot!

 

[SOC]

Thank you for that!

My latest 4 week slump, haven't had this long a slump in more than a year, I attribute to taking 6 full showers last month. ( After feeling icky for taking half showers for more than a year).

I felt normal during and after the showers. I took them standing up. But then, the cumulative effect hit me the following month!

Now I am sitting intermittently on a chair during the shower (certain parts are hard to clean sitting down, for those I stand up, for all other parts, sitting down).

I have to learn to scrub slowly. Not normally.

No more than once a week shower.

After wiping off, sit down for a few minutes.

Any other shower ideas, anybody?

You've already got the big ones covered. Here's a few lesser ones that might help:

Hair washing, with the whole arms above shoulder height thing, can send your HR sky-rocketing. Consider doing hair washing in the sink rather than in the shower... and maybe get someone to wash it for you if you have willing family. If you have really short hair, you might be able to wash your hair in the shower by bending over while sitting so that your arms are not raised.

Toweling dry was a big HR raiser, too. I blamed all the necessary arm waving. I found no way to keep my HR down while toweling dry, so I ended up drying only my feet and lower legs, then wrapping up in a big towel or terry bathrobe and lying in bed for an hour or more.

Showering, even sitting and with all the other strategies, took all the energy I had. If I didn't take a long nap afterwards, I couldn't do anything the rest of the day without sending my HR over my AT. I finally planned my showers so that I could go to bed for hours (or even the rest of the day) afterwards.

FWIW, a lot of the showering problems improved substantially when I got decent OI treatment. Because I don't have classic POTS, fainting, or severe dizziness on standing, it took a while for us to realize what a large impact OI was having on my functionality.

ETA: I should have read the thread more carefully. Peggy-Sue and Valentijn covered most of this already.

 

[eafw]

Thank you, any thoughts the temperature of water...

Water probably best at body temp, don't want to signal to the body it needs to cool down (by dilating blood vessels) or heat up (by shivering).

Time of day can make a big difference too. A shower in the morning will wipe me out all day, even with a lot of sitting and careful drying techniques. In the evening - well stocked up on salt and fluid and generally more with it - much less draining.

 

[ahimsa]

Lots of good tips in this thread!

(So never stand still either - if you must stand, shuffle around a bit.)

I wanted to hightlight peggy-sue's tip about not standing still. Some folks may have Orthostatic Intolerance (POTS and/or NMH) but do not get symptoms immediately so they don't realize how helpful it is to avoid standing. That was me before I had the tilt table test. I did not realize that standing took so much out of me.

It helps me so much to sit down (or lie down) long before I get any symptoms. This preemptive sitting down or lying down is so much better than having to rest after getting symptoms.

I also agree with @eafw that the timing of a shower can make a big difference. Pick a time that is one of your higher energy times for you. For me, having an empty stomach is important so I never shower after eating. And never first thing in the morning (need time for the pills to kick in) or last thing at night (need to rest a few hours before sleeping or else my sleep is bad).

I also agree with the poster (can't scroll back to find it right now) who said not to beat yourself up if you do everything "right" and it does not improve symptoms. Sometimes we just hit a rough patch and there's not much control we have to improve our health, we just have to ride it out. You just have to do what you can and hope for the best.

 

[SDSue]

Showering. Ugghh. I miss my twice daily showers. Who knew that'd be one of the things I miss the most.

I work the shampoo thru my dry hair and scalp before I get in the shower (elbows on knees, head down). That way, my hair sort of gets washed and rinsed at the same time once I'm under the running water and I don't really need to have my arms up. I have medium long hair.

LIke others, it takes all my energy for the day even tho I sit while showering.

 

[Valentijn]

Thank you, any thoughts the temperature of water...

Warm enough that I'm not shivering But if it's too warm, that can trigger vasodilation, and blood moving toward the feet.

 

[Valentijn]

I also time my showers to take place when my OI supplement (yohimbe) is having its strongest effect. But I generally handle OI challenges like showers better earlier in the day - it gets progressively worse during the day.

So I take my morning dose of yohimbe at 7-8am, then take a shower somewhere around 9-11am. Any later than that and it's not helping as much anymore.

My other tactic is that I prohibit myself from any other non-essential activities on shower day (every 5 days approximately). No baking, no sitting in the garden to weed, no folding my laundry while sitting with my feet up. And I take into account that I might not even be able to cook an easy dinner in a slow-cooker later in the day, and that we'll need to order out.

I'm not sure that saving the shower for the end of the day is a good idea. Yes, that way it doesn't interfere with earlier activities, but it also pretty much guarantees a crash or more severe effects. If someone absolutely can't avoid those other activities, then maybe it's the best approach, but otherwise I think it's better to view it as something to be 100% paced, rather than something to boom-and-bust with after the other activities. And, of course, sometimes it's going to trigger a crash even when taking the fully paced approach - but it still seems like a good idea to keep the crash as mild as possible.

 

[Dr.Patient]

When I get the very first symptom that I am overdoing, I stop and rest until that symptom resolves--however long that takes. The problem is each person probably has their own "early symptom warning."

Sushi

I get no symptoms during or after activity, like taking showers, for e.g. All that accumulates over a month and kicks me hard the following month. Unfortunately I cannot go by my symptoms.

 

[Sushi]

I get no symptoms during or after activity, like taking showers,

It took me a long time to recognize my "real-time" symptoms as they are quite subtle. I know that some don't get any at all, but I am lucky to be one who does have some.

Sushi

 

[Effi]

It took me a long time to recognize my "real-time" symptoms as they are quite subtle. I know that some don't get any at all, but I am lucky to be one who does have some.

same for me. some of the things that I know now are triggers for me were things that I wouldn't have expected in a million years. this disease is just weird like that. my symptoms can flare up directly after doing sth, or there can be a short or long to possibly very long delay... It's all about getting to know your own personal triggers.

 

[rosie26]

I get no symptoms during or after activity, like taking showers, for e.g. All that accumulates over a month and kicks me hard the following month. Unfortunately I cannot go by my symptoms.

Are you resting at regular times of the day? It will help lessen the fallout of this kind of relapse. The accumulation relapses are always the worst ones for me. I lie down every afternoon and evening, only to get up and do something every now and again. This will help curb more severe relapses if you are not getting signs early of doing too much.

 

[Dr.Patient]

Are you resting at regular times of the day? It will help lessen the fallout of this kind of relapse. The accumulation relapses are always the worst ones for me. I lie down every afternoon and evening, only to get up and do something every now and again. This will help curb more severe relapses if you are not getting signs early of doing too much.

Yes, I do.

 

[SOC]

Are you resting at regular times of the day? It will help lessen the fallout of this kind of relapse. The accumulation relapses are always the worst ones for me. I lie down every afternoon and evening, only to get up and do something every now and again. This will help curb more severe relapses if you are not getting signs early of doing too much.

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.

 

[Dr.Patient]

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...

 

[Dr.Patient]

Warm enough that I'm not shivering But if it's too warm, that can trigger vasodilation, and blood moving toward the feet.

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.

 

[Dr.Patient]

@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.

 

[Mij]

@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.