What to do when in PEM

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.
 
NelliePledge said:
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.
Click to expand...

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.
 
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?
 
MinIreland said:
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?
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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.
 
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.

If it were me, I would want to avoid getting worse by seeking care. 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.
 
wingate said:
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.

If it were me, I would want to avoid getting worse by seeking care. 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.
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This is very helpful. Thank you @wingate
 
When I have a particularly bad day, I will spend it in pyjama on the sofa, and adjust my activities to how I feel (read, watch movie, nap etc.). And when it is a beautiful day, I will replace the sofa for a hammock in the yard. Being outside, even though it may only be for 15 minutes, put your nose in the sun. It will do you good.

One other thing I have changed, or are more conscious of, is nutrition. Mainly unprocessed food and drinks are on the menu, with a focus on easy digestible. All as natural as possible (i.e. normal yoghurt instead of flavored yoghurt). No fizzy drinks, water based drinks (tea and coffee) are my go-to's.

Recently I have changed my breakfast (mealprepped overnight oats) for full fat Greek yoghurt with a spoon of nuts to prevent a sugar spike in the morning. I find that this change is doing me good: low effort to prepare, easy to digest etc.
 
Sorry, me again. I'm 3 weeks into my first real PEM and very little progress.

I'm in bed in the dark with my eyes closed 23 out of 24 hours. Only get up for toilet and quick bite. Switched on phone to type this.

Worst is my anxiety. My brain doesn't stop! How can I rest this way? I feel like I'm my own worst enemy.

Is this normal? What to do so that I can REST?

Thanks so much again!
 
I can't force myself to hours a day resting in the dark unless my symptoms prevent me doing anything else, such as when I am severly nauseous, feel dizzy if I try to sit up, and have a bad headache.

If I can do something to distract me when I'm resting, I do so, whether an audiobook, often a favourite novel I've read or listened to before, so it's company of known 'friends', or some gentle TV on a small low light screen. The distraction helps to calm my mind and relax me better than lying doing nothing.

For a while I found some audio guided relaxation meditation helpful, but if I'm anxious it just heightens it, and I find myself fighting the instructions. Better to escape into a familiar imaginary world with an audiobook, I find. If it's something familiar it doesn't matter if I lose track of the narrative most of the time.
 
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I really struggle to just lie there and rest. I listen to a lot of podcasts and audiobooks to keep me distracted, have ambient music on for peaceful rests when I manage them, and generally fail not to scroll on my phone if its not across the room from me.

My anxiety/racing mind make it hard to rest too. Really sorry you're going through this.
 
I learned to meditate last summer, and I find it helps to stop my brain (and reduces the tired-but-wired feeling). I never expected meditation to be such hard work! I still never look forward to starting it, but afterwards, I'm always glad I did. I don't do any of the spiritual stuff, I focus on my breath, on letting go and on acceptance by repeating some phrases or counting the number of breaths I didn't think of anything (I never get past twenty).
 
Hi @MinIreland, I feel for you. I hope you can feel better soon. Sending hugs to you if that’s ok.

I echo what the others have said about having some low key distraction. Sometimes I will listen to an audiobook or podcast, mainly to distract from thoughts that come up, and not necessarily to be able to fully focus on the podcast or the story itself.

If I’m indoors, it can be helpful to face a window and be able to look out at the sky, or a tree, or the yard. Of course, don’t push yourself to do that if it’s making you feel worse.
 
He @MinIreland -am very sorry that you haven't seen an improvement yet. Along with many others I too find it anxiety arousing to try and empty my mind. I can listen to guided meditations - and it doesn't matter if I follow the instructions- they are just a distraction- and I can try mindfulness exercises. I find focussing on my body in some detail can be calming eg the Jon Kabat Zinn exercises, just so I have a focus away from my anxiety.

I don't know if you have the Calm app. I have it installed on my ipad and it has such a variety of activities. i got my opening subscription free, and now pay annually.
The Calm app :-

Features
    • Sleep Stories: Bedtime tales narrated by calming voices to help you fall asleep.
    • Guided Meditations: Sessions ranging from 3 to 30 minutes focusing on mindfulness.
    • Daily Calm: Fresh 10-minute daily meditation sessions.
    • Soundscapes & Music: Nature sounds, rain, and ambient music tracks for focus or relaxation. [1, 2, 3, 4, 5, 6]

Pricing & Availability
    • Free Tier: Includes limited access to timed unguided meditations, day 1 of multi-day programs, one breathing exercise, and selected background sounds. [1]
    • Calm Premium: Paid subscription options typically cost around $14.99 per month or $69.99 per year (with lifetime access options available). [1]
    • Platforms: Available to download on iOS and Android devices. [1]
 
I‘m sorry you have to go through this!
I remember my first hard crash.
It felt like dying and it took many many weeks to feel an improvement again.

MinIreland said:
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.
Click to expand...

I understand your situation as having stabilized a bit since reducing your activity level, which is excellent news!
The first and foremost goal is to stop any ongoing deterioration.
It usually takes my body 5 to 8 weeks to somewhat improve from a major crash.


MinIreland said:
I'm in bed in the dark with my eyes closed 23 out of 24 hours. Only get up for toilet and quick bite. Switched on phone to type this.

Worst is my anxiety. My brain doesn't stop! How can I rest this way? I feel like I'm my own worst enemy.

Is this normal?
Click to expand...
Yes, being in PEM can make me very emotionally unstable.
Don’t feel that something’s wrong when you can’t rest as normal under these inhumane circumstances!
There’s so much pressure that is looking for a valve such as being outside, moving, running!, but all you can do is lie still.
That’s such an unnatural situation that you’re in, don’t blame yourself!
Try to be as kind to yourself as possible.
Maybe there are things that help to soothe your racing mind?
A warm water bottle to touch with your fingers whenever you can handle it, maybe?
MinIreland said:
My biggest fear is that this is no longer PEM, but my new baseline.
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I think it’s an important achievement that you seem to have stabilized for the moment, even if it’s unfortunately at a level that is very uncomfortable for you.

Are you still taking daily showers?
One thing that is really hard on me, and usually takes some time to adapt to, is realizing when I can’t do something that I used to enjoy anymore.
I love showering, it feels so great, but it kills me.
However, on an emotional level I still can’t grasp that because the worsening effect doesn’t hit for several hours to days.

If you are still frequently showering, this would be the very first thing that I would try to cut out.
My body would stay in constant PEM if I would shower every couple of days.
There are good alternatives to feel fresh, though, for example rinse-free disposable body wipes like Scrubzz.

We have a thread on why showering might be so PEM inducing.

MinIreland said:
My head can't handle much but I don't know what's worse, some external stimuli or my own constant worst case scenarios.
Click to expand...
I think what’s really helpful for me is to switch to different activities frequently.
Maybe you know some easygoing podcast that could run in the background for a couple of minutes.
The goal wouldn’t be to focus on it but just to have something to tune in for a couple of seconds every now and then.
I like US politics podcasts because there are new ones coming out everyday and they talk about the same things over and over again.
I also like to listen to calming meditations but without engaging at all.

Showering is really brutal for me.
Monster headaches and the whole body just dying.
I‘d try to stop that and wait a couple of days to see if your symptoms improve.
I would have to overdo a lot of other activities during the day to reach the same miserable state I get to with just one shower.

I‘m rooting for you, all the best! :hug:
 
Chandelier said:
I‘m sorry you have to go through this!
I remember my first hard crash.
It felt like dying and it took many many weeks to feel an improvement again.



I understand your situation as having stabilized a bit since reducing your activity level, which is excellent news!
The first and foremost goal is to stop any ongoing deterioration.
It usually takes my body 5 to 8 weeks to somewhat improve from a major crash.



Yes, being in PEM can make me very emotionally unstable.
Don’t feel that something’s wrong when you can’t rest as normal under these inhumane circumstances!
There’s so much pressure that is looking for a valve such as being outside, moving, running!, but all you can do is lie still.
That’s such an unnatural situation that you’re in, don’t blame yourself!
Try to be as kind to yourself as possible.
Maybe there are things that help to soothe your racing mind?
A warm water bottle to touch with your fingers whenever you can handle it, maybe?

I think it’s an important achievement that you seem to have stabilized for the moment, even if it’s unfortunately at a level that is very uncomfortable for you.

Are you still taking daily showers?
One thing that is really hard on me, and usually takes some time to adapt to, is realizing when I can’t do something that I used to enjoy anymore.
I love showering, it feels so great, but it kills me.
However, on an emotional level I still can’t grasp that because the worsening effect doesn’t hit for several hours to days.

If you are still frequently showering, this would be the very first thing that I would try to cut out.
My body would stay in constant PEM if I would shower every couple of days.
There are good alternatives to feel fresh, though, for example rinse-free disposable body wipes like Scrubzz.

We have a thread on why showering might be so PEM inducing.


I think what’s really helpful for me is to switch to different activities frequently.
Maybe you know some easygoing podcast that could run in the background for a couple of minutes.
The goal wouldn’t be to focus on it but just to have something to tune in for a couple of seconds every now and then.
I like US politics podcasts because there are new ones coming out everyday and they talk about the same things over and over again.
I also like to listen to calming meditations but without engaging at all.

Showering is really brutal for me.
Monster headaches and the whole body just dying.
I‘d try to stop that and wait a couple of days to see if your symptoms improve.
I would have to overdo a lot of other activities during the day to reach the same miserable state I get to with just one shower.

I‘m rooting for you, all the best! :hug:
Click to expand...
Thank you so much, @Chandelier. I am showering every other day now, and using a shower chair. But I'll try skipping it for a week to see if that helps.
 
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