Ideas on exercise and ADLs

[wabi-sabi]

I've been watching a lot of presentations on rehab lately and they all stress being consistently out of PEM and not doing exercise at the expense of PEM. But...I'm feeling a tiny bit better and going stir crazy in bed.
So I'm wondering if anyone has ideas on how to adapt the exercise vs ADLS thing when one is mostly bedridden. The thing is, all my ADLS except flossing my teeth involve being out of bed. I am not willing to give up showering even if it does PEM me, because I've been at the bedbath stage and it's disgusting. I will take weekly PEM to feel weekly clean. But exercise- now that I can do lying down in bed. There are lots of exercises for bedridden patients that I seem to be able to do without PEM (or at least a lot less PEM than being upright) because I do them while flat.

What do you think?

 

[Eleanor]

I sometimes do this kind of thing https://www.uhsussex.nhs.uk/resources/bed-exercises/

the hard bit is stopping after doing a few reps.

 

[MeSci]

I wasn't familiar with ADLS so looked it up - apparently it means Activities of daily living.

 

[wabi-sabi]

the hard bit is stopping after doing a few reps.

Isn't that the truth! That's part of my question too- how do you know when to stop? I always want to do more, or course!

 

[wabi-sabi]

Activities of daily living

Yes, it means things like feeding yourself, being able to get to the toilet under your own power, bathing, dressing, brushing your teeth. It's meant to be the bare minimum of things a person needs to do to care for themselves, but doesn't include things like cooking a meal or grocery shopping, getting to a doctor appointment or managing your bank account.

The idea being, if you are too ill to brush your teeth, you really shouldn't be trying to exercise. But sometimes I choose to do bed exercises rather than brush my teeth because I need to live a little.

 

[Mij]

Not knowing when to stop for someone who is bedbound/severe isn't worth the gamble imo

It's hard though not being able to do much Wish there was a way.

 

[wabi-sabi]

someone who is bedbound/severe isn't worth the gamble imo

My mast cells are so insane that brushing my teeth causes more of a reaction that doing floor exercises. I just don't get it!

But I am trying to be careful about not going overboard.

 

[Kiristar]

I've been watching a lot of presentations on rehab lately and they all stress being consistently out of PEM and not doing exercise at the expense of PEM. But...I'm feeling a tiny bit better and going stir crazy in bed.
So I'm wondering if anyone has ideas on how to adapt the exercise vs ADLS thing when one is mostly bedridden. The thing is, all my ADLS except flossing my teeth involve being out of bed. I am not willing to give up showering even if it does PEM me, because I've been at the bedbath stage and it's disgusting. I will take weekly PEM to feel weekly clean. But exercise- now that I can do lying down in bed. There are lots of exercises for bedridden patients that I seem to be able to do without PEM (or at least a lot less PEM than being upright) because I do them while flat.

What do you think?

At a slight tangent can I just ask, with you being mostly bedbound, how you manage a weekly shower and to experience pem that lasts less than the weekly interval to the next shower?
I'm sofa bound rather than bedbound so do potter round the house on foot for say water and loo trips but I get such hideous pem from showering even if I use a shower stool that it is an exceedingly rare occurrence. Do you have any suggestions/tips ? I wonder if I am missing a trick with it

 

[wabi-sabi]

how you manage a weekly shower and to experience pem that lasts less than the weekly interval to the next shower?

I don't always- sometimes I just chose PEM over being gross.
The other answers are medications. I found out through trial and error, that much of my showering PEM comes from my MCAS, and medications for MCAS shorten the PEM and make it less severe. That increases the temptation to PEM myself to be clean. Before I was diagnosed and treated for MCAS, I just had to be disgusting because the PEM was too severe. I'm not sure I am making a wise choice now, but that's what seems best to me.

The really, really weird part is what my mast cells react to in terms of hygiene. It's the showerhead itself that sets them off! If I sit on a little stool and run the tap and ladle water over myself I get mush less of a reaction than if I sit under the shower head. This completely nonsensical change meant that a "shower" can can 0.7 pacepoints on visible instead of 3.5 pacepoints! 0.7 pacepoints causes so much less PEM than 3.5 pacepoints that I feel safe risking this every week. Then PEM can last 3 days instead of 5. My mast cells hate the tactile sensation of the showerhead so much that the physical effort of ladling water over myself is less taxing than sitting still under the showerhead. I do squirt myself with the showerhead very briefly to rinse, but other than that it's just splashing around.

My shower tools to lower PEM:

Japanese Plastic Water Ladle Bath Ladle Dipper Made in Japan, 1.3 Liter

Shop JapanBargain 3040 Japanese Plastic Water Ladle – Green. A 1.3L capacity bath ladle, ideal for scooping water, baby bathing, and traditional Filipino Tabo uses. Made in Japan.

japanbargain.com

Inomata Japanese Bath Stool – Leaf Series, Green, Made in Japan

Discover the Inomata Japanese Bath Stool – Leaf Series in green. Compact, ergonomic design perfect for traditional Japanese bathing, foot soaking, and relaxation. Made in Japan.

www.japanbargain.com

 

[Binkie4]

I can walk around the house, approx 500 steps a day or thereabouts but I do everything I can in bed. I clean and floss my teeth in bed swathed in a towel twice a day, lying almost flat. It prevents me rushing it. I can do it more carefully. For me, I need to spend as little time as possible upright and if I am upright I must be moving. I can't shower even with a stool not because of mast cells which are irritable, but because I just start to feel ill.

We had a bath with an opening door installed last year and I manage 2-3 baths a week. I sit down as soon as I am in the bath and lower the seat so I can lean back and approximate lying down. It's not perfect but it works for me. Until the new bath was installed I had to contort myself rather dangerously to get in and out. Bathing doesn't lgive me PEM as long as I stay lying for as much as possible. Without this bath, I don't know how often I would be able to bathe @Kiristar .

For me my ADL are my exercise. I don't feel I am deconditioning totally so long as I walk round the house as needed. I can't stand or sit to cook so really only manage personal care. I have begun to be out of bed more but I go from bed to a recliner to a bath as necessary. I mustn't try to walk quickly. My HR goes too high.

If I am dressing that day, I need my clothes getting out of the wardrobe for me. I cannot raise my arms to lift things out. I become breathless just as I can't fold bedding or pull bedding around.

Occasionally for my sanity, I exert myself beyond these limits to keep a hospital appointment or see family and I go into PEM.

 

[wabi-sabi]

I can walk around the house, approx 500 steps a day or thereabouts but I do everything I can in bed.

My normal is about 1000 steps per day. That means I can make it back and forth to the bathroom on foot and sometimes to the kitchen by wheelchair. I'm sorry to hear how badly off you are, but it is interesting to compare what we can and can't do.