What to do when in PEM

M

MinIreland

Senior Member (Voting Rights)
Hi, me again,

I've tried to read if I could find something on the forum, but it's too risky to be on a screen for longer than a couple of minutes.

I have had PEM since a week or 2 and because I didn't fully realise it, I ended up in bed last weekend.

No change since then.

Symptoms: crushing exhaustion, weakness, faintness (when upright), heavy limbs, loud buzzing iny head and body, feeling as if my brain has too many toxins/waste and can't get rid of it, very heavy brain, heavy head with pressure, pressure and around my eyes, can hardly keep them open, and I can't tolerate light. I also see light flashes when I have my eyes closed (not all the time).

I am in a dark room with an eye cover most of the day. I listen to meditations and occasionally a light audio book. I am up 3x during the day to eat something and do what needs to be done (very little). I have dinner with my family. I take a brief shower.

Because I've made zero progress, I wonder what I'm doing wrong or if I'm still doing to too much?

Was going to call my doctor, but I think I'll find more knowledge here.

Thanks so much... Again.
 
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I‘m sorry you’re struggling so much with rolling PEM lately.
In your situation my foremost goal would be to find an activity level that gets me out of PEM.
I‘d cut everything drastically and see if there are slow improvements starting within a few days.

When I don’t understand what’s going on I like to write down every activity and how I feel.
Try to notice how different activities make you feel after about an hour.
Maybe it would help to eat smaller portions but more often during the day.

One thing that still surprises me after all these years is how much talking with someone kills me, although I enjoy it very much.
As always, the real impact shows up only days later.
Micro-stutters, -weakness, -pain during a conversation are a good indicator for me that I‘m overdoing it.
MinIreland said:
I have dinner with my family. I take a brief shower.
Click to expand...
For me personally, as a severe pwME, both of these activities would be too much on a daily basis.
However, not seeing/talking to your family would probably be too heartbreaking.
I‘d start with trying to reduce the showering frequency drastically.
Maybe once every 1-2 weeks.
See our thread on keeping clean when severe:
hotblack

Thread 'Keeping clean when severe - a thread for tips'

The talk of showers reminded me I’d been thinking of sharing tips for keeping clean when you are unable to. It took me a long time to adapt, experiment snd learn, when at my best I manage to keep clean well, when less good it’s harder.

I thought it would be useful for us to share approaches and products which help. We must sll have different preferences but a lot of shared knowledge.

To start simple, wipes have been essential. I don’t try to clean myself, that never worked, rather I’ve integrated wiping most of my arms, torso and legs throughout the day into a routine. A very simple...
  • Like

Good luck and keep us updated!
 
Hi @MinIreland, I’m sorry things are so rough right now.

I second @Chandelier about showers and wonder if there are any possibilities for workarounds- e.g. wipes, using a chair if not already, taking less frequent showers until you improve, etc. For me, showers are very taxing, so I try to stay clean using other measures between showering.

I also wonder, when you eat dinner with family, are you sitting upright at the table? Or are you able to sit in a more reclined position, like on a couch, or somewhere you could have your feet up while eating?

Can someone bring you food so you don’t have to get up during the day? Or can you keep a little stash of food near your bed?

I’m thinking of you and hoping for the crash to recede as fast as possible.
 
MinIreland said:
Hi, me again,

I've tried to read if I could find something on the forum, but it's too risky to be on a screen for longer than a couple of minutes.

I have had PEM since a week or 2 and because I didn't fully realise it, I ended up in bed last weekend.

No change since then.

Symptoms: crushing exhaustion, weakness, faintness (when upright), heavy limbs, loud buzzing iny head and body, feeling as if my brain has too many toxins/waste and can't get rid of it, very heavy brain, heavy head with pressure, pressure and around my eyes, can hardly keep them open, and I can't tolerate light. I also see light flashes when I have my eyes closed (not all the time).

I am in a dark room with an eye cover most of the day. I listen to meditations and occasionally a light audio book. I am up 3x during the day to eat something and do what needs to be done (very little). I have dinner with my family. I take a brief shower.

Because I've made zero progress, I wonder what I'm doing wrong or if I'm still doing to too much?

Was going to call my doctor, but I think I'll find more knowledge here.

Thanks so much... Again.
Click to expand...
This is quite similar to how I was when I first became severe a few years ago and my PEM/crash days are still like this.

Do you have orthostatic intolerance? Being upright and exerting in the first few hours really does me in. Could you try breakfast in bed rather than getting up?

I also wanted to keep my showers as they made me feel clean and the hot water helped with muscle tension. So I persisted — sometimes sat on a shower stool but usually sat on the shower floor because that was better for my blood pooling. I still had enough strength to pull myself up. You could, as has already been suggested, reduce shower frequency, but also you could look at the time of day and also making sure there is enough time between shower and eating, which are both energy consuming and OI stressors.

Can you sit or lie outside at all? It really breaks up the day, changes your environment, and I'm a big believer that sun on skin is a net positive in most cases, so long as OI/PoTS is under control. Make sure you are not deficient in Vit D. I was tested in July and it came back borderline low. I was a bit surprised given it was summer and it made me realise that I need to supplement all year round.

I also have major problems with screens. I was off my laptop almost completely. Smaller screens are much more tolerable. I tolerate screens better in the evening, so I'd watch a bit of YouTube or a documentary. Avoid reading text from screens where possible.
 
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I'm sorry you're struggling with PEM, @MinIreland. I agree with others comments about sitting up for meals and showering. I have just gone back to having carers help me with showering twice a week, having struggled with only managing one shower and hair wash a week for some years when doing it on my own, and taking days to recover each time.

What I didn't really realise for a long time with showering was how much the dressing, undressing, hairwashing, toweling dry all use my arms a lot and that wears me out even if it's all done sitting. Having someone else do a lot of the arm effort makes a huge difference to my exhaustion and PEM after showers.
 
Meals with family are one of the first things I cut out during PEM - it's such a brain overload, the look and taste of the food, the co-ordination of eating and drinking, the noise of cutlery on plates, the talking and listening (even with earplugs in), let alone any cooking or clearing up. Wipes me out. Better to eat by myself and then maybe have a bit more capacity to talk to family at other times.

Hope you're feeling better before much longer.
 
MinIreland said:
Because I've made zero progress, I wonder what I'm doing wrong or if I'm still doing to too much?
Click to expand...
So sorry you're in this situation, @MinIreland. When PEM is really bad, it lasts a long time. No progress in 2 weeks is dispiriting, but unfortunately it's not unusual in a bad crash. So hang on in there.

It is certainly worth considering if you're still doing too much, but you might not be. Even when your activity level is "right", it can take a long time for change to happen.

While the possibility of doing too much is there, don't feel you have to take things away from yourself that you can tolerate fine. We're all different.

Is there something you're doing now that makes you feel particularly bad? If so, try to adapt that.

Try to have as much time as possible when your brain is doing absolutely nothing. Meaning that you're lying still in the dark, not listening to anything, nothing. Particularly helpful immediately before and immediately after activity. Even 10 minutes is better than nothing, but 30 minutes or an hour (or more) is more restorative for me. It also raises your awareness of how each activity affects you, so you can identify which ones might need to be changed. For me, the things that leave my brain feeling more wired and all over the place are the ones that need to be adapted. But I'll only notice that if I lie still in the dark doing nothing at all.

If lying there with your own thoughts is too hard because of anxiety, and you find slow, deep breathing helpful, do a bit of that sometimes. Don't do it if it makes you feel worse. If you're used to doing guided body scans, do one yourself, without listening to anything.

Failing that, seek out meditations that are voice-only, no background music, and a teacher that doesn't talk too much. Or a recording of waves/something similar.

Like @InitialConditions, I find that activity in the morning is far more taxing, and breakfast in bed helps. (Well, I have all meals in bed, but for you, if considering one in bed, breakfast would be it. It also tends to be less smelly than other meals.)

Eating with family sounds both lovely and like a lot of exertion. If you can do it, great, keep it. If you find yourself shattered after it, see if you can make it a bit easier on yourself. Try having it lying down (e.g. sunlounger in kitchen, or sofa) as @wingate suggested, or only coming in at a certain point e.g. for dessert, or only doing it every second day. Another option would be eating your actual dinner in another room where you're lying down by yourself, and then just joining everyone at the end for a bit of chat.

Doing things every second day rather than every day can be helpful when you need to reduce an activity but you don't want to lose it altogether. If you find yourself really relieved on the day OFF, it probably means you need to adapt that activity to make it easier for you on the day ON. For example, I alternate "big" shower nights and "small" shower nights. The small ones are so quick that sitting down would actually make it harder (but other people will absolutely have to sit down). For the big ones, sitting down is essential. I find small, light shower stools easier than the big chair ones.

It sounds like you're already showering in the evening. Make sure you have a good big rest between dinner and shower.

If you find yourself exhausted after doing the things you need to do in the bathroom, try having a stool at the sink/basin so that you can sit when washing hands, brushing teeth etc.

Like @InitialConditions, I find, or used to find, lying outside later in the day helpful, as long as it's quiet enough and not hot. Just lie there and look, or close your eyes and feel the air on your skin. Sunglasses and a visor or hat. I need more noise protection outside, even in a quiet area. Earplugs are better for sudden things like dog-barking, but you may need noise-cancelling headphones as well.

It's very hard to be where you are. Just keep giving your brain and body the rest they need, and do whatever helps you stay sane.
 
In case these are helpful - when I'm in a similar state, I remind myself to "Stop giving your brain things to process." and "Let your brain fart."

I find letting your body rest is more straightforward, but I need a bit of a nudge to realise I need to leave my brain alone.
 
So sorry to hear you're in such a bad way, @MinIreland. It's horrible.

Before I was diagnosed (I was at the lower end of moderate), I could run on reserve capacity for months without realising. Provided I didn't do too much or stop for too long, momentum would carry me along. The further I got into accumulated PEM, the less able I was to spot the warning signs.

That resulted in crashes that took me up a whole severity level for months. In the most severe phase I'd be mostly bedbound, but then there'd be a frustratingly long plateau with no further improvement. I now realise I was quite lucky to regain my previous capacity eventually.

Obviously I don't know if this is your pattern—we're all different—but it's probably best to respond to it as a significant event, and do anything needed to avoid getting worse. There's some very good advice above.

Thinking of you, and hoping you start to pick up soon.
 
What they said :)
!

(*Any time youre sitting put your feet up *! Even if/when you feel well… think of it as banking a snifter of energy for later. Even at a dinner table if you feel the need to join !).

Can you ly down somewhere and feel the breeze on your skin ? with your eye mask, and any cap or hat… @Evergreen articulated all so well…

Thinking of you… :hug:
 
InitialConditions said:
I also wanted to keep my showers as they made me feel clean and the hot water helped with muscle tension.
Click to expand...
If showers are a problem, consider not bathing daily, or even weekly. Humans don't need daily bathing. If you stop bathing daily, you'll probably feel icky for a while (week? month?) and smell worse, but then your skin microbiome adapts, and you stop being stinky/sticky. Daily bathing---especially with antibiotic cleansers--is not what our skin evolved for.
 
I would reiterate thinking about the eating with family activity especially if you sit up to do it. I find any social activity ( and that includes family) so stimulating that it has to go when I am depleted. Occasionally Mr B will sit with me almost in silence while I lie in bed resting. He regularly brings me my food in bed; alternatively while seated on the sofa. My feet must be elevated. It's so hard to give up the things we value most but you can reinstate. them as you improve.

I understand you wanting to shower but perhaps reduce it to every two or three days at a time when you are feeling your best, perhaps later in the day. I find I prefer baths because I can lie down. Being upright is too draining. I dry some bits seated while bath is emptying and then I can step out of the bath. If very low energy, I just wrap myself in a bath towel and lie in bed. Before I put on a nightgown I ensure I am completely dry with help if needed. I like womn talc free body powder with oat extract from Amazon, £9.95.

Hope you soon improve Min but don't rush it.
 
For me when I have crashed out and wasn't having to try and turn up for work in some form (that's a whole other story and yes it is both hell and impossible and involved all sorts - but my alternatives were unthinkable too when I was in that situation) then I'm out of it just like someone would be with the worst flu or something else big where it basically knocks you out (glandular fever). I'm pretty sure they wouldn't be showering or sitting for dinner unless they had a miraculous hour where they felt sort of able to sit and just wanted the quiet company (and that's OK, because we are balancing this being longer term vs that one off flu and so the 'soul' stuff matters too).

Anything but scraping drink and food because I'd got it next to my bed and woke up at whatever hour and got it into my mouth was obviously not an option. I just had to sleep it off. If I tried to wake I'd be out of it for all the effort which could be many many hours to get there anyway (I know this from the above days re: work etc obligations). SO I now try and have better options next to my bed or in a fridge near (for when I get OK to get to that, and things I'll munch easily like fruit mousse, cold meats), I always had drinks there ever since I was first ill.

Double-edged sword though as I'm alone and really always have been rejected for it. Even when I'd dragged myself to do the insurmountable and take all those hours just to 'turn up' for an hour I wasn't really good and just on occasion had people taking the mickey out of me for the bit I couldn't do without appreciating the effort and what it took to be there for that, or it was awkard anyway.

Told and taking it on board that noone could live with 'that' by people who I dont know were stupid enough they thought saying it meant my body would listen and be different. Decades of that can confirm to you that at best it just bubbled it up into even bigger crashes with very little 'good' for a lot of effort in trying for the sake of presenteeism then knocking the supposed patterns people think can be trained out into worse and even more ongoing and permanent issues ie 'training' something that is an illness and not 'behavioural' (which people have been tricked into calling 'illness' by saying its real but meaning 'but you can still..') makes it worse. Just like walking on a broken leg.

I remember also when I had uni deadlines and PEM hit and I'd be stuck in the horrible feeling like I had to try and use those days as the deadline crept up guilt preventing me from getting into the deep sleep I needed to actually sleep it off - so imagine you've 5 days to a deadline and (I didn't know this in hindsight) needed 3 days of sleeping it off, and trying to do a bit involved throwing so much caffeine down my neck and putting on noisy telly and dragging my pillows into higher positions each hour all to no avail because I never got to a function level where even an hour awake was going to produce sensible reading or writing etc. and all I'd really done was written off a day recovering so now if I slept 3 days I'd only have one left..

Basically having had to do so many years of working where I'd have to let rolling PEM build (recovering evenings and weekends wasn't enough to stop it building) and taking a week off eg every 6 weeks when I was less severe it was interesting to see how I went from so ill I had to just rest for days in order to get into deep sleep and then after days of that I'd eventually wake and my brain was on again.

I don't know what to recommend on those in-between times where it isn't a crash yet but when it is I'd say the 'crow flies' ways of doing things is just to give into it like any other illness and focus on sleeping it off. There's 'presenteeism' vs 'being present' and I could sort of be present at the sacrifice of energy and pain in the rolling PEM stage sometimes but I was kidding myself if I tried it in the crash stage
 
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Chandelier said:
I‘m sorry you’re struggling so much with rolling PEM lately.
In your situation my foremost goal would be to find an activity level that gets me out of PEM.
I‘d cut everything drastically and see if there are slow improvements starting within a few days.

When I don’t understand what’s going on I like to write down every activity and how I feel.
Try to notice how different activities make you feel after about an hour.
Maybe it would help to eat smaller portions but more often during the day.

One thing that still surprises me after all these years is how much talking with someone kills me, although I enjoy it very much.
As always, the real impact shows up only days later.
Micro-stutters, -weakness, -pain during a conversation are a good indicator for me that I‘m overdoing it.

For me personally, as a severe pwME, both of these activities would be too much on a daily basis.
However, not seeing/talking to your family would probably be too heartbreaking.
I‘d start with trying to reduce the showering frequency drastically.
Maybe once every 1-2 weeks.
See our thread on keeping clean when severe:
hotblack

Thread 'Keeping clean when severe - a thread for tips'

The talk of showers reminded me I’d been thinking of sharing tips for keeping clean when you are unable to. It took me a long time to adapt, experiment snd learn, when at my best I manage to keep clean well, when less good it’s harder.

I thought it would be useful for us to share approaches and products which help. We must sll have different preferences but a lot of shared knowledge.

To start simple, wipes have been essential. I don’t try to clean myself, that never worked, rather I’ve integrated wiping most of my arms, torso and legs throughout the day into a routine. A very simple...
  • Like

Good luck and keep us updated!
Click to expand...

On the shower one I'm wary yoo might already be doing this @MinIreland (ignore me if so :)) but options like bath chairs or boards to let you sit down whilst showering are something I need now, was so relieved when I finally could have one as what a difference it makes, and also wish I'd felt in a position to have got and just used for showering all those years because there might have been the odd shower I enjoyed like other people talk about 'a nice shower' rather than feeling like I was on an egg-timer and pushing my luck everytime I put something on my hair or body that would need washing off.

Plus of all the things if I got some energy/health back I miss from a high-value point of view (rather than a 'gives me a boost because I kid myself I'm heroic or maybe getting stronger' that yes.. I probably would still go through because that's what I did for years) then I have to remind myself it would be seeing people or things that bring me joy rather than traipsing the aisles of supermarkets type things (I remember some stranger visitng me for something not directly health related but they had to ask questions and with sympathy at the end they said 'can you get to the supermarket' and felt so sorry for me that I couldn't have that joy - which I used to like doing and see others enjoy as pottering getting to choose the nice stuff, and its about autonomy etc, so they are right getting that back would be great - but on the lsit of 'choose from because you are still limited' the lower exertion alternatives that swap could make possible etc are more worth having?)
 
Binkie4 said:
I would reiterate thinking about the eating with family activity especially if you sit up to do it. I find any social activity ( and that includes family) so stimulating that it has to go when I am depleted. Occasionally Mr B will sit with me almost in silence while I lie in bed resting. He regularly brings me my food in bed; alternatively while seated on the sofa. My feet must be elevated. It's so hard to give up the things we value most but you can reinstate. them as you improve.

I understand you wanting to shower but perhaps reduce it to every two or three days at a time when you are feeling your best, perhaps later in the day. I find I prefer baths because I can lie down. Being upright is too draining. I dry some bits seated while bath is emptying and then I can step out of the bath. If very low energy, I just wrap myself in a bath towel and lie in bed. Before I put on a nightgown I ensure I am completely dry with help if needed. I like womn talc free body powder with oat extract from Amazon, £9.95.

Hope you soon improve Min but don't rush it.
Click to expand...
I can't imagine the multi-tasking element of it.

Think one-on-one tends to be easier than group, and then trying to do one task whilst doing that group thing suddenly becomes consciously obvious as another 'load' on a asystem that when well people don't even notice is multi-tasking when its just eating etc. I guess then there is the hectic-ness and the guilt/dilemma at the cleaning up and getting down from the table stage too, I'd still find it so much effort 'to not do' when things are being put away I think that sitting tight takes energy itself as well as the sensory impact.

It is tricky decisions though to say use it to switch for time chatting whilst lying in a comfy position one-on-one because I see the videos even of cats where people say that the 'eating with the family' means a lot to them (who knows if that is just social media bunkum), but do understand the double-issue of the empty space at the table feeling and 'family time' vs 'seeing members of family' is complex just so beyond what I've really been able to access without being very ill I don't know the balance.

Lots to navigate I imagine when it is children too and everyone is at a different level of illness so how much you want them to see or have changed/adapted vs what could even really be faked etc. (and not pulling that off well so still seeming ill/looking pained vs not being there or an adaptation)

I'm also remembering that due to working hours my parents ate at a different time during the week, so eating as a family was Sunday definitely and maybe other days if we were all about etc. I remember different friends had different things - we weren't an outlier for it. It probably also varied by age. I don't know what's best and just say this maybe from a reassurance point of view that for all sorts of reasons not everyone has family dinner every night, and I'm not suggesting it shouldn't be important to you or should change.
 
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Am in awe of everyone here, articulating their lives and experience !
(..thinking “yeah, me too”… so thank you ,for asking …)
…the more horizontal I can be (like @Binkies baths, for example feel better showering on the shower floor, legs out an ajar door with a handheld shower nozzle ),…the better I manage.

A close friend who lived for a time without a proper bathroom swore by washing her feet (as well as face and arms) … yes, too much of an effort when feeling awful, but when more able perhaps an option ? - much quicker ,and less effort if you have support or family to help you ,than a full shower . (Manageable too with help and a flat container in your bedroom). You do feel surprisingly refreshed !

Its a bit of a conundrum -dont think anyone finds it easy -managing prolonged rest along with mind and soul … be kind to you @MinIreland
 
Binkie4 said:
I understand you wanting to shower but perhaps reduce it to every two or three days at a time
Click to expand...
I expect that's still too frequent for maintaining a healthy skin microbiome. I don't know what the maximum frequency is that still allows the good bacteria to outnumber the ones that cause BO.

It occurs to me that daily bathing has a significant environmental cost. Just consider water treatment (pre-bathing and post-bathing) and washing/drying towels.
 
Creekside said:
I expect that's still too frequent for maintaining a healthy skin microbiome. I don't know what the maximum frequency is that still allows the good bacteria to outnumber the ones that cause BO.

It occurs to me that daily bathing has a significant environmental cost. Just consider water treatment (pre-bathing and post-bathing) and washing/drying towels.
Click to expand...
But think how it makes you feel. I think that's why we want to indulge even if it is unwise in many ways.
 
Binkie4 said:
But think how it makes you feel.
Click to expand...

Yes, and it's so much worse in warm weather—having a couple of nights' worth of dried sweat on your skin is horrible.

It makes me itch like mad, and the only way I can stop it is to wash. Not everyone will experience that, but it's still icky enough to make people want to wash even if they know they'll pay for it.
 
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