What to do when in PEM

[Creekside]

But think how it makes you feel. I think that's why we want to indulge even if it is unwise in many ways.

ME requires a lot of cost/benefit decisions, and comes down to individual judgement.

My point was that the icky feeling of interrupting daily bathing is temporary. It's similar to addiction: withdrawal might feel unbearable at first, but if you persist, the unpleasantness passes. I typically bathe every few weeks (before going into town for errands), and my skin doesn't feel itchy, nor do I seem to be stinky (How good are we at rating our own BO?). In summer, if I do sweat-generating work, I'll do a quick rinse-off, but not a deep-cleaning that strips away my good bacteria.

Before daily bathing became common, people weren't driven mad due to itchy skin from not bathing. Withdrawal from daily bathing addiction is different.

 

[NelliePledge]

When I was a child we didn’t have showers. We had a proper bath and hair wash on Sunday and only in the week if we got mucky out playing. Other than that it was put the plug in fill the sink with warm water and wash the essential bits.


I don’t have severe ME (moderate) but when I have PEM like today I never shower either skip washing or use wet wipes. I do live alone though so I don’t have to consider others just my own sniff judgment. I’m also lucky that I don’t have problems with scented products so have the option of go a bit old school aristocratic with a dab of eau de cologne instead of a wash.

 

[Kitty]

When I was a child we didn’t have showers. We had a proper bath and hair wash on Sunday and only in the week if we got mucky out playing. Other than that it was put the plug in fill the sink with warm water and wash the essential bits.

Ditto! When I got ill (mid-70s) that era hadn't quite come to a close, so I've never done the daily bath thing. Didn't even have access to a shower till around 2005, all the places I'd lived in only had baths.

 

[NelliePledge]

Aye @Kitty thanks for sharing the “four Yorkshiremen” style reminiscences

 

[Creekside]

Ditto!

Me too. I think that was standard practice back then, and we weren't all scratching ourselves constantly by Tuesday and being embarrassed by our horrible BO. I don't recall noticing my BO until I went to post-secondary and had frequent showers.

 

[MinIreland]

Hi everyone, thank you so much for all the responses and help. I was going to be good and create a summary of all your recommendations but unfortunately, I am still in the exact same place as 10 days ago, so that's not an option for now.

I am creating this reply with a voice to text app.

I have made some changes based on your recommendations. I have two meals in bed now, breakfast and lunch. I still have dinner with my family but only for 15 minutes and then I rest again and don't take my shower immediately afterwards.

I think my body is slightly stronger because I don't get black spells every time I sit up straight anymore. However, my head, brain and eyes are still brutal.

I have contacted my doctor and she is going to ring me tomorrow but I am not sure what to expect. Even if she'll suggest to admit me to the hospital, I don't think that would be a good option. Any ideas?

 

[Felis Catus]

I have contacted my doctor and she is going to ring me tomorrow but I am not sure what to expect. Even if she'll suggest to admit me to the hospital, I don't think that would be a good option. Any ideas?

I'm not sure how it works where you live. She might request blood tests and scans, but if everything comes back normal and you are able to eat and hydrate, I'm not sure on which basis they'd keep you in the hospital. They might want to do some in-patient tests but there would be a reason to do them.

 

[wingate]

It’s good you’re going to chat with the doctor tomorrow (assuming this is a helpful and understanding person). They will be able to advise you in ways we can’t.

I think if I were in your situation and the doctor suggested tests or coming into the clinic or hospital, one thing I would want to know more about is the costs v. benefits of testing/treatment. For example, if the doctor thinks a test has a good likelihood of turning something up or if there was a treatment that would help, that would be a different scenario than if it is just a fishing expedition to test for something the doctor thinks is very unlikely.

Hopefully the doctor can help you decide what is right so that you don’t exacerbate your crash by seeking medical care while you are feeling extra sick.