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What creates the worst PEM for you?

tinacarroll27

Senior Member
Messages
254
Location
UK
Standing for too long and walking too far. Social activities like chatting with friends for too long and also travelling in a car other than very short distances. I also find chemical smells can bring on PEM, which is strange because they are not an exertion but I suppose they are a form of stimulation and also injuries... I once had bad PEM from banging my head on a cupboard door. Also prolonged stress.
 

Horizon

Senior Member
Messages
239
Standing for too long and walking too far. Social activities like chatting with friends for too long and also travelling in a car other than very short distances. I also find chemical smells can bring on PEM, which is strange because they are not an exertion but I suppose they are a form of stimulation and also injuries... I once had bad PEM from banging my head on a cupboard door. Also prolonged stress.

Definitely chronic stress shuts my body down. I think its half my battle but I can't calm down. Im always in a panic state.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
Walking too far too fast is the most common. Strenuous activity such as stair climbing, lugging heavy loads, gardening, any leg work involving crouching then standing.

Ditto.

One flight of stairs is my maximum. Currently maxed out at a 15 minute flat ground walk at easy pace.

I consider myself lucky that I don't get PEM from cognitive or emotional effort.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Any kind of alteration in body position, croutching etc gets me very dizzy.

interesting to see someone wrote that. I was only complaining to my friend last week that changing positions isnt at all good for me (I hate going up and down as its to draining). Ive almost had arguements with him as he tries to speak to me while Im standing which is really terrible for me, so then he'll tell me sit down but then we will be going to do something so I'll be forced then into having to get back up. augh.. posteral changes.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
this question for me is so hard to answer as nearly everything can do if I do it too much (which isnt much at all!). I cant climb a flight of stairs at all (without having to crawl up or pull myself up with a rail, within some aid, 2 or 3 steps is probably my limit).

Doing anything on my feet will have me quickly crashing (often POTS but if I did too many sessions of getting up then PEM.. getting up and down knows me around.. hence those who say, do things a little bit at a time and keep resting and doing little bits at a time.. well that doesnt work well for me as each time it involves another getting up - postural change).

Stress is also currently knocking me around quite a bit. And as another here said, I think also chemicals too at times can have after conquences other then the immediate affects on me.

Any really thinking too long can cause me PEM (so I need to not think too deeply about things). Verbally talking to people too long can cause me PEM, having to talk to any new support workers and tell them what i need can knock me around :( .

Talking on phone can leave me very drained due to having to hold ones focus on someone you cant see, its even worst then being face to face (as long as I can get away from them when I need to). I now have a headset so I can speak longer but of cause it doesnt help with that other way phone drains me and will only help my arms.

Being taken out shopping in the wheelchair, give me PEM...I often need 36hrs to recover from that trip.

A question answering what Im fairly safe to do which doesnt cause symptoms would be easier for me to answer. being relaxed on a computer with my legs up and not doing much thinking, Im usualy fine with (as long as nothing stresses me).
 
Last edited:

ebethc

Senior Member
Messages
1,901
working full-time exhausts me... by thursday, I can't think or make any decisions...right now, I am not working and I have to get a job, so I'm worried about being able to keep up

cleaning... I have a small apartment, but giving it a good all over scrub completely wipes me out. i spend the next day in bed
 

soxfan

Senior Member
Messages
995
Location
North Carolina
Social interaction...shopping...talking on the phone...minor stress. I get all my PEM from mental overload. I can do physical activities with no repercussions as long as I don't over-do.

I feel as though my brain has very little energy and once it's used up I am done for the whole day....sometimes I seem to be able to go longer but usually my PEM is immediate and sometimes I can feel it happening even while still at a store or lunch with a friend.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Social interaction...shopping...talking on the phone...minor stress. I get all my PEM from mental overload. I can do physical activities with no repercussions as long as I don't over-do.

I feel as though my brain has very little energy and once it's used up I am done for the whole day....sometimes I seem to be able to go longer but usually my PEM is immediate and sometimes I can feel it happening even while still at a store or lunch with a friend.

Welcome back to NH!

GG
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@GG...I am back in North Carolina. We only lived in NH for five months then my husband transferred back down here. It's been a crazy year for sure!!!!
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
@GG...I am back in North Carolina. We only lived in NH for five months then my husband transferred back down here. It's been a crazy year for sure!!!!

Wow, talk about something being bad for your PEM! Bummer, thought we might cross pathes eventually, not this far apart!

GG
 

Horizon

Senior Member
Messages
239
Showering was a big issue for me too. A few years ago I observed that the PEM after showering depended a lot on the temperature.
So maybe you have problems with heat/high temperatures? Then it could be helpful to reduce temperature.

Most definitely sensitive. Shorter lukewarm showers are much better for me. I love hot showers but they drain me. Cold showers do boost my energy.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@GG...I wasn't even there long enough to completely unpack! It is all good though because we really wanted to stay in NC..oh yeah it had been a wild year and not good for someone like me. I actually lived in five different places in 8 months with two big moves. The stress actually re activated my Bartonella so now I am in treatment again for that...using herbals this time though.

You never know that someday we might meet up. I still have lots of family up there so we will be traveling up that way whenever we can.
 

rose1

Guest
Messages
12
Location
Sydney, NSW, Australia
Having a spa (which I love at the time) then showering - have to lie down for 20-30 minutes. Hate talking on the phone for any length of time especially if the other person is complaining about something. Successfully did some light housework last weekend (first time in months) by listening to my body and resting frequently. I did notice the rest periods got progressively longer.
I know a lot of people are against GET but I've been doing this on my own so I don't have someone else pushing me. I go for a walk on a nice flat path along a river which is great for my physical and mental health. I feel like I'm doing something "normal" and the environment is really relaxing. I let my body decide on the walking pace. I usually start getting wobbly legs after 20 minutes but try to do another 5 minutes.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
I know a lot of people are against GET but I've been doing this on my own so I don't have someone else pushing me. I go for a walk on a nice flat path along a river which is great for my physical and mental health. I feel like I'm doing something "normal" and the environment is really relaxing. I let my body decide on the walking pace. I usually start getting wobbly legs after 20 minutes but try to do another 5 minutes.

I would suggest that you are not doing GET.

You are doing 'pacing' - this is what we all do to avoid symptoms, we are listening to our bodies.

GET is part of a "cult of CBT and GET" to treat your false illness belief. In GET, you will have 'someone else pushing' you.

It is an important distinction which you have already identified.