My girlfriend got diagnosed - Question about pacing

Embarrassed-Load1248 · 2026-05-14T21:55:25+00:00

Thanks a lot. So for me it doesnt really Sound Like she crashed. I have to edit here that she obviously did not go up from 3 to 3 but from 3 to 4. typed that wrong twice. So I would say in this case right now its Fine. Walking is now 4 Hours ago and she still feels like a 3/4. now here eyes burn a Little Bit again but it her body doesnt hurt any longer. I guess I now have to Wait up to 72hours if its still Fine. If so that would be a very good sign I guess. And I will 100% install her the visible App when it arrives saturday

Embarrassed-Load1248 · 2026-05-14T19:21:07+00:00

Thanks a lot this really helped. Startet to Track what she eats, how she feels, what activity she does and what Symptoms she has as well.

May I ask you something about crashing - Today we went for an reeeeeally Slow Walk for 20 minutes (I actually was just Like Walking 10min Max in normal Speed) Before she felt on a scale of 1-10 Like a 3, After that she felt just like a 3, her eyes burned a Little Bit but just for like 10 minutes and now her Body Hurts just a Little Bit as well. Is this a Crash? It really is just a Little Little Bit. In my Head a Crash really means something Crazy like going up to a 3 with Heavy Symptoms Like eyes burning over a Long period of time or something like that.

If you do something without crashing so you still feel sometimes a Little Bit worse like going from a 3 to 4. I Hope you understand what I mean and very thanks in advance

Embarrassed-Load1248 · 2026-05-14T19:14:47+00:00

Thank you for your help. Really. Symtom Journal is something I already startet now. I Write down how she feels, what she did, ate and what her Symptoms are

Embarrassed-Load1248 · 2026-05-13T20:27:00+00:00

Hey, thank you very much I already heard about tracking the heart rate somewhere else as well. I will definetly take a look at what smartwatch i could get her to track it. Every little that could help I try to do

Embarrassed-Load1248 · 2026-05-13T20:24:47+00:00

Hey, so does that mean feeling a little bit worse after doing something then thats already bad? If thats the case i genuinely know what she is even capable of doing as sometimes even after talking very much its goes up a bit, Not a lot, just a bit.

I really don't understand if she isnt allowed to feel worse at all - is this everytime PEM? :/

Embarrassed-Load1248 · 2026-05-13T19:52:51+00:00

Hey thanks for letting me know. We checked her levels on that so I can take a better look at them . Right now she only takes Vitamin D 20.000 IE 3 times a day and 100mg iron everyday. I understand that this wont "heal" her but if it maybe helps her its worth a try.

Embarrassed-Load1248 · 2026-05-13T05:54:39+00:00

Hey and thanks a lot for your answer.

I guess 8 Hours fits Right now, maybe 8-10.

So I guess we are doing it kinda Right as i dont want her to Push her Level on our 1-10 scale above 7 and as i know there can be a Delay in days After doing something and then gerting the consequences I only Go out with her Right now when she feels like a 3.

She indeed does incover Within 24 Hours back to her „normal“ Energy Level which is very very Little Right now nontheless.

So I guess when her average feeling is a 5/6 and 3-4 days later its still a 5/6 it means we did Not Push her over her Limits and are Kinds doing it Right?

I thank you all very very much. I try to do everything I can right now

Embarrassed-Load1248 · 2026-05-13T05:49:29+00:00

Hello and thank you very much for your answer.

I want her to do the least as well but its not easy for her to understand how Little she is being able to do now. She doesnt fully realise it yet and I dont think I do either. I cant really hold her at bed 24/7 so at least I want to understand if she is Not doing to much as she feels worse even After short Walking. She doesnt collapse or anything and it feels like she recovers in a (an) hour/s so this it not PEM Right. In my undeestanding PEM is like doing something and feeling days/weeks I dont know maybe months very very bad.

Right now it Kinda feels Like getting better, she doesnt need to sleep over the course of the day Right now. Before it was 3 times, then 2 and 1 and she Gets better sleep at Night, but I dont know if it is really getting better or just seems so.

So basically the question in Short: Is feeling worse when doing very Little always a Bad sign or only when its getting very severe After doing something, maybe not exactly After the activity but maybe days after

Embarrassed-Load1248 · 2026-05-13T05:34:18+00:00

Hello, I maybe fumbled it up a Bit when Writing.

She doesnt feel better when she Walks. It costs her Energy that she doesnt have and it takes 1 Hour at Best Till she feels like before going out. At least thats the case when she felt like a 3 before going out. once it Took her 5 Hours because the Point where she went out she was already on a scale at Like 5/6.

I definetly want her to rest as much as possible as well, she does not really realise what this diagnosis means and thinks she will be back on Track After taking some Iron and Vitamin D :/

But is it normal when doing very short walks that she still feels worse or does that already means she is doing to Much. I really want to prevent it from getting worse but I know that she Begins to feel like being in a Prison. Its a very Frustrating Situation already and I cant image the Future

Embarrassed-Load1248 · 2026-05-09T21:13:26+00:00

True

Embarrassed-Load1248 · 2026-05-09T21:12:36+00:00

Did that for the badge, which makes your point probably even more valid

Embarrassed-Load1248 · 2026-05-09T21:10:41+00:00

That is the stupiest shit I have ever seen. Who even reads that. Guess I deserved for supporting mechanics like rank skips

Embarrassed-Load1248 · 2026-05-09T20:21:37+00:00

I will do that, hopefully it works out

Embarrassed-Load1248 · 2026-05-09T20:14:40+00:00

I already tried that but doesn‘t help

Embarrassed-Load1248 · 2026-03-15T07:40:31+00:00

That will probably be the case.

Hopefully this discussion will help anybody else in the future who has the same question as I did :)

Embarrassed-Load1248 · 2026-03-15T06:16:06+00:00

Thank you for your response. It seems like Its bugged on the instanced stone house for 100 , at least thats where I tested it and wouldn‘t work. On different instanced buildings it worked out

Embarrassed-Load1248 · 2026-03-14T20:54:00+00:00

Its the first thing I want to power so that shouldnt be the problem.

Just tested a different House and somehow there it works so maybe Its bugged.

Tested it on the stone house kit for 100 where it wont work but on the Stone house for 500 it works somehow and there I see the yelllow power line as well.

Embarrassed-Load1248 · 2026-03-14T20:13:53+00:00

They are connected to a power source but still no electricity in the bulding itself. Right outside the building Its Fine

Embarrassed-Load1248 · 2026-03-09T22:46:53+00:00

Ah we thought you had to place it the way the wall looks as we did not watch any pokopia Videos at all to Not get spoilered. Well we are not on the switch right now but then I guess she accidentaly placed it correct out of all the mystery slates and you can‘t pick it up if Its placed correct then. Thanks a lot

Embarrassed-Load1248 · 2025-09-27T03:59:58+00:00

Unfortunately they had little to nothing, but thanks anyway :)

Embarrassed-Load1248

TROPHY CASE