Robert
robertb1.bsky.social
Robert
@robertb1.bsky.social
Post covid, 100% disabled (WIA, Netherlands). Father of three. Msc in ecological crop protection and plant breeding. Loves photography, forever DM for my family and adults, and short story teller. Now learning how to cook smarter with LC.

No DM's please
Dank je wel. Houd niet alleen de focus op post covid (wat ik heb) maar op alle post virale ziektes. Zoveel mensen worden niet begrepen en achtergesteld. Het systeem moet echt anders

Ik dacht dat het nu redelijk geaccepteerd was maar na de laatste Zembla afl. was ik weer teleurgesteld
October 20, 2025 at 8:22 AM
Ik leef klaarblijkelijk onder een steen. Wie o wie is Viktor Vlam?
October 6, 2025 at 5:52 AM
I hear you and as a fellow patient feel you too (4 years for me). I hope you can still find some light and fun things to do, how small they may be.

/Take care
April 19, 2025 at 5:10 AM
I hear you. (I needed to look up ADL for I was not familiar with that acronym). ADL comes for joy for me as well. Things need to be cleaned, and we still got to eat (healthy --> so we cook). You cant skimp much and when I do I feel guilty I chose a hobby over something 'that needed to be done' /meh
April 13, 2025 at 5:56 AM
No research means no treatment
No treatment means nu cure
No cure means this is it
We are stuck
We are broken
We need treatment

We do NOT need
GET and CBT
For that will break us
Pushes us away
Into our homes,
into our beds,
Far away, hidden
For anyone to see
But us, In Darkness
April 12, 2025 at 3:55 AM
I like her blog :)
April 7, 2025 at 4:50 PM
The Dark Leaves look like the shadow ships from Babylon 5

That part me smile 🙂
March 31, 2025 at 3:05 PM
Reposted by Robert
Link doesn't work in the UK.

But the article is archived here for posterity.
archive.ph/WFZ6C
archive.ph
March 26, 2025 at 1:50 PM
Top!
March 26, 2025 at 6:02 PM
I read your thread, all of it. I feel for you. Doing the best you can, and it is not enough for him and to much for you.

The only advice I dare give you is this. You can't do it alone (anymore). Seek help, friends family and above all professional help. In the US prof help could be to expensive 😔
March 20, 2025 at 5:29 AM
When there is a cure (of some sorts) I personally don't think it will come in time for us long haulers (4 years for me). There is to much damage done to the body for any medicine to fix.

Perhaps they will find something to make some symptoms less worse.
March 14, 2025 at 5:06 AM
Yes

Sadly, it is difficult to understand (and feel) what we are going through.
March 14, 2025 at 5:01 AM
* typefout en mag niet corrigeren.

Ik bedoelde te zeggen. Haal de kleine dingen uit het leven wat nog wel kan om verder te gaan
March 13, 2025 at 9:34 AM
...je hebt het wel nodig om verder te gaan.

Niemand zegt dat het makkelijk is, het heeft mij ook bijna een jaar gekost om te zijn waar ik nu ben (en ik ben er ook nog steeds niet)
March 13, 2025 at 9:33 AM
Wat voor mij werkt en wat ik van mijn psycholoog heb geleerd is het volgende

Hoop leid tot verwachting en (bijna) altijd tot teleurstelling. Hoop niet, neem wat je hebt en haal de dingen uit die je nodig hebt om verder te gaan.

Acceptatie betekent niet dat je tevreden moet zijn, maar...
March 13, 2025 at 9:33 AM
Yes, this.

I still can not probably describe it. It really is an off/on feeling. It is suddenly there, and then I know that if I don't stop what I am doing I am in trouble. I hate it when it happens when I am in a store and I need to get home very quickly
March 12, 2025 at 9:52 PM
Thank you.
March 12, 2025 at 5:28 AM
Succes deze ochtend. Kleine stapjes zorgen er ook voor dat je er komt
March 11, 2025 at 6:34 AM
In Dutch we sometimes say "sterkte" to a person which roughly translates as "I wish you strength".
March 9, 2025 at 7:36 PM