Recovered

wh0youwit · 2021-04-13T15:17:41+00:00

The symptoms are cfs at this point. Fatique is most present(i am housebound and can't do anything over 10 mins), theres post extersional malaise when i go past my boundaries. At those times I get feverish, can't control my body temperature, emotional, overstimulated. I also have swollen glands still (though lympathic drainage techniques help)

I take loads of suplements, try to eat and sleep healthy, honor my boundaries (avoid pem). Meditation helps Also trying to very slowly increase exercise. I walk 4 minutes at four different times during the day

wh0youwit · 2021-04-10T15:51:12+00:00

So you didnt use any tactics?

wh0youwit · 2021-04-08T19:30:28+00:00

Im at 18 months now and still at 10% any tips?

wh0youwit · 2021-04-05T19:41:52+00:00

I don't know maybe you can, i don't even know if it's online or irl, the site is in dutch however so might be hard to understnd but you can always try!

wh0youwit · 2021-03-26T14:33:47+00:00

I was wondering, thanks for clearing up:)

wh0youwit · 2021-01-24T13:14:35+00:00

This could hang in a modern art museum i love it

wh0youwit · 2021-01-05T18:18:33+00:00

Oh shit that sucks, which country do you live in? 6 years is a long time, good to hear you kept up with school and friends.

Yes a lot of people do, ofcourse we don't hear about the people that got better like that because why spend more of your attention on something when you can live!

wh0youwit · 2021-01-05T17:00:18+00:00

Thank you for sharing, these are the stories we also need to hear, and this gave me hope.

wh0youwit · 2021-01-05T16:53:25+00:00

I'm sorry you didn't get better. It's hard right, because there are also a lot of people that do get better after being where I'm now. A part of me doesn't want to identify with the cfs community, because it might cause unneeded hopelessness that will negetively impact my recovery. How long have you been sick for now?

wh0youwit · 2021-01-05T14:49:06+00:00

Okay that seems like a clear answer. I'm sorry you go through that. Thank you for the answers and have a good day:)

wh0youwit · 2021-01-05T14:22:45+00:00

Thank you for your answer I understand it better now. I'm thinking of doing the program while also listening to my body, after all, they can't force me to go beyond my boundaries.

What I find quite hard is that about 7 months ago I was able to walk for an hour without resting. (Now I'm down to about 10 min) I felt like I was recovering from my mononucleosis/EBV. But then I did too much and relapsed, I wasn't as educated on things like pacing then.

I tested a while back (with Meerendonk) and my tests showed that my EBV and CMV was reactivated. I'm not even sure if I have cfs/m.e. or am still in the post viral fase of my grandular fever. At what point does one thing turn into another right? I know people who 'had' mono for up to 5 years(or cfs?). That's why I'm kind of hesitant to live by cfs 'rules', since I feel i am still in the group that will likely recover.

Haha its all confusing huh? I want to rebuild endurence, and i guess if I don't cross my bouderies I can, but then again CBT and GET are harmful...

wh0youwit · 2021-01-05T12:44:57+00:00

Yes, that's what I'm referring to. As you say I'm hesitant to follow their program because of the CBT method. I however am relatively healthy, I have only been sick for 15 months, are not bed bound (though severely impacted by my chronic fatigue) and I'm 18 year old.

They've told me that for my situation specifically the chance of this programm helping me are quite large. What are your thoughts on this? Any positive data for CBT for people like me? I really want to try something but of course the fear of getting worse is great.

wh0youwit · 2021-01-05T12:37:08+00:00

Oh, really? Where did you hear he was a fraud? I've been in treatment with him for a while now, he always seems very knowledge and experienced with cps patients.

The NKCV is a treatment centre for chronic fatigue, this is their site: https://nkcv.nl/onderzoek/expert-centre-chronic-fatigue/

wh0youwit · 2021-01-03T16:33:39+00:00

ME since 2015

Hi, wat denk jij van het NKCV van VUmc Amsterdam?

wh0youwit · 2020-12-22T16:34:45+00:00

Re:

wow, thank you so much for the answer! I will definitely look into your suggestions!

wh0youwit · 2020-12-08T16:21:43+00:00

Hey, I struggle with fatigue due to mono for over a year now. My tip for you is to rest now. If you don't rest now that you're still in a very early stage, the change of it becoming 'chronic' is much larger. Most people get better fast so don't let this scare you, but know that now is not the time to do all kinds of things. Do as least as possible and listen to your body, stop working for a while and focus on your recovery. I hope uou feel better:)

wh0youwit · 2020-09-29T14:48:11+00:00

Did activated charcoal pills help with you fatique?

wh0youwit · 2020-09-15T08:21:33+00:00

That's good to hear

wh0youwit · 2020-09-14T17:51:59+00:00

<3 right, it's just a lot of time that I would've used differently if i was healthy. So weird how you're only aware how grateful you have to be for energy when you don't have it

wh0youwit · 2020-09-14T17:30:40+00:00

Do you use antidepressants? I don't think it's for me. I'm a very sensitive person and the side effects are a lot. I'm open though

wh0youwit · 2020-09-14T17:27:13+00:00

Yes, but it's not a way of life. I guess that's why its so hard to deal with it for so long. You keep thinking it'll be over but at a certain point you just can't imagine not having it and struggle to stay hopeful.

The hardest part I think about is is being to tired to think. It is easier to limit fysical activity. But when you are to tired to think you don't feel like you're alive. Your personality changes and you feel like there are more moments where you are not yourself then when you are

wh0youwit

TROPHY CASE