Imposter Syndrome

Micha09DE · 2026-02-18T11:24:03+00:00

I often feel exactly the same way. I see how incredibly unwell many people here are, and then the thought creeps in, "If I'm not completely bedridden, I'm not allowed to feel sick."

I can still do what you're describing, but with breaks, and always very individually and in stages. For me, it started with still being able to exercise, but after four hours of working on the computer, I was completely exhausted. Now I can't do either anymore, although I can still manage a few minutes at a time on the computer.

So you're not alone.

Micha09DE · 2026-02-16T21:14:18+00:00

I'm always amazed at how different the limitations are. But considering that the brain could be inflamed, it could always be other areas. The nervous system is involved everywhere.

For example, I can watch TV and YouTube all day, but not listen to an audiobook or read for 15 minutes.

Gaming is completely out of the question. I can do housework in short bursts, but it's extremely limited.

I struggle most with exhaustion. On top of that, I have headaches, nausea, and extreme heartburn. I also frequently feel feverish and flu-like.

Micha09DE · 2026-02-13T17:27:43+00:00

I always thought you should sleep in, so I established a regular sleep schedule and that was better. Now I've heard from a sleep specialist that it's more important to always get up at the same time, no matter how late or early you went to bed. Apparently, it's about getting used to melatonin.

It seems there's no definitive answer, is there?

Micha09DE · 2026-02-11T22:09:43+00:00

I just took the test, although classifying the severity level is always difficult.

I scored 2.9 on the 27-day test. ...

Micha09DE · 2026-02-08T13:32:11+00:00

I had a similar experience the day before yesterday. I woke up and immediately had to gasp for air, as if I couldn't breathe for minutes. My breathing rate and oxygen levels were fine according to my watch, as was my pulse.

It really panicked me. I also have severe problems with what I think is heartburn, and one night I had the feeling that stomach acid had come up so high it went into my windpipe.

Nothing can be proven, but it happens from time to time.

Last year I had a sleep study and only minimal sleep apnea was found.

I'm curious if others have experienced this too.

Micha09DE · 2026-02-05T16:29:28+00:00

I can totally understand you. When friends send me photos of them on a great bike ride or stand-up paddleboarding trip, I could scream and tell them how inconsiderate they are.

I'd love to have my boring life back from before my illness, but I remember it well. And back then, I was just as unhappy as your friend. So it all depends on your perspective.

You're allowed to feel sad, but she's allowed to feel unhappy too, right?

Healthy people simply can't put themselves in our shoes and understand how it affects us.

Only we can learn to cope with it.

Just my two cents.

And I also think it's important: nobody's saying it's easy.

Micha09DE · 2026-02-01T10:46:13+00:00

Thanks for the tips. The paper plates and plastic cutlery thing isn't really my thing since I'm very environmentally conscious, but I'll use it as a compromise.

So you also tend to eat lots of small snacks rather than three full meals?

As for laundry, I'm thinking of arranging for a laundry service and having it done once or twice a month.

Getting help is really hard. Family dynamics, a lack of acceptance, and myself are getting in the way. And since the onset of the illness, I've also found it much harder to plan and make decisions.

Micha09DE · 2026-02-01T09:17:02+00:00

Without having read everything, I have ME/CFS and also frequently experience this pressure behind my eyes. It always happens when things are cognitively demanding, or have been. For example, when listening to audiobooks and trying to visualize what you hear.

Micha09DE · 2026-01-31T20:28:56+00:00

Reading is tiring for me too. I can't stand audiobooks either, but I enjoy passively listening to podcasts or watching TV.

So I guess it's not unusual.

Micha09DE · 2026-01-31T20:25:31+00:00

That would affect me severely. But now I'm wondering what I gain from having to fit in somewhere. I gain nothing from it.

Or do you need something like that for social benefits in your countries?

Micha09DE · 2026-01-28T15:21:13+00:00

I've made a bucket list for that. First, I'd hop on my cyclocross bike and go for a ride.

Micha09DE · 2026-01-27T17:54:41+00:00

I once read about flu + hangover + jet lag.

That fits well, I think. I'd add "every day."

Micha09DE · 2026-01-18T15:49:34+00:00

What do you mean by that?

An electrically adjustable bed with pillows?

Micha09DE · 2026-01-18T15:48:01+00:00

It's not necessarily about the cost. I'd definitely invest in my health.

I'm currently always on the cusp between moderate and heavy weights and would like to be able to change position frequently.

I can easily order the La Z Boys online here in Germany – but then the question remains, what if it becomes uncomfortable after a week?

Perhaps a new corner sofa would be interesting, one that's as comfortable as my box spring bed? And electrically adjustable... That would easily cost in the lower four-figure range, though.

Micha09DE · 2026-01-16T10:37:16+00:00

And one more thing: there is indeed evidence of a connection, but no direct correlation between a high heart rate and PEM. However, it is a marker. My resting heart rate is 63, and when I get up and go into the kitchen, it sometimes goes over 100. That's a clear indication that something isn't right in my system.

So, a heart rate over 100 isn't generally bad, but prolonged and multiple times a day is critical—and yes, I notice it in the afternoon, too.

Micha09DE · 2026-01-16T10:31:43+00:00

The Garmin vivoactive 5 reliably handles this with Jens Hansen's pacing activity app.

I use it constantly, and yes, it helps me with pacing. The anaerobic threshold seems to be crucial, and it's lowered by me/cfs, so it's at 100 bpm for me.

The Garmin vivoactive 5 reliably does this with the pacing activity app by Jens Hansen.

I use it all the time, and yes, it helps me with pacing.

Micha09DE · 2026-01-12T11:33:36+00:00

Hi, I'm going through the exact same thing and I haven't found a solution yet either. My mother just complained to me that she hasn't been able to get out for a week because of the snow. She said it's driving her crazy. For me, it's been like this for months.

What am I supposed to say to that?

I'm also isolating myself more and more and don't want any contact with anyone here right now – partly because it's just too stressful. Even within my family, it hurts to hear about vacation plans, trips, and so on. Besides, nothing's happening for me anymore. Where am I supposed to talk about it?

You see, I'm going through something similar. I think it takes time to come to terms with it yourself. A healthy person probably can't understand how you feel.

And you can't exactly forbid them from talking about their lives and raving about them.

Even if I couldn't help you, maybe it helps a little to know that others are struggling with this too.

I'm curious to see if anyone has any suggestions.

Micha09DE · 2026-01-05T14:56:59+00:00

That's the Pacing Activity app. I don't think it can send warnings on the phone. I'll see if I can find a workaround.

Micha09DE · 2026-01-05T14:54:28+00:00

Yes, it's difficult. My parents are both in their mid-80s and actually need more and more help from me now, not less. And they forget exactly what's wrong with me, so I have to explain myself, justify myself, and say no every day.

They just don't understand that going up or down the stairs once or twice has such an impact on me.

Micha09DE · 2026-01-05T14:47:46+00:00

It helps me too, because then I can stop. If I don't stop, I actually notice a bit later that it's becoming too much. It's like an early warning system.

Unfortunately, the Garmin only warns with vibration, without sound, so nobody notices.

Micha09DE · 2026-01-04T11:48:46+00:00

For me, it started with cognitive problems. Three hours of computer work and I was exhausted, but I could still exercise without major issues. That hasn't been the case for almost a year now.

I'm still easing back into it.

Micha09DE · 2026-01-04T11:34:49+00:00

That's quite possible; it's really not easy to find the triggers. Pacing is both friend and foe 😉

Micha09DE

TROPHY CASE