@Frieke72@mastodon.social
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Frieke72

@Frieke72@mastodon.social

Dutch Worldcitizen | music | walking | reading | cooking&wining&dining | eco is important | my guy @Antofields

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maegul, to longcovid
@maegul@hachyderm.io avatar

I'm slowly realising that I probably have some mild

Since having covid (now had it twice since 2022): iron deficiencies, breathing problems, constant asthma, and now a sudden allergy to some foods apparently.

My partner and I have been careful throughout the pandemic but clearly not careful enough at times (twice each) since "opening up".

And though it could be far far worse, I feel pretty violated right now TBH.

@coronavirus
@longcovid

Frieke72,
@Frieke72@mastodon.social avatar

@maegul you might want to look at some of the presentation from when they get published on youtube next weeks. There's lots of info that might help you recognise and give info to take to your doctors
@coronavirus @longcovid

Frieke72, to mecfs Dutch
@Frieke72@mastodon.social avatar

Had just enough energy to listen in on 3 of the 20minute webinars today. https://unitetofight2024.world/program/
Gives a bit of hope for all patients who are suffering from post acute infection diseases. Really love to see the science growing.๐Ÿ™

It goes on for another 2hours and tomorrow. You can still join. I think presentations will be available later too
(See birdsite for loads of tweets. The LC/MEcfs community is big there)

#LongCovid #PostCovid #mecfs #uniteToFight2024
@longcovid @LongcovidNieuws

ReneDamkot, to random Dutch
@ReneDamkot@mastodon.social avatar

Markuszower vertrouw ik sowieso niet verder dan ik 'm kan gooien. Onbegrijpelijk dat blijkbaar de hele NLe pers hier intrapt (en zich zo laat misbruiken).

Frieke72,
@Frieke72@mastodon.social avatar

@vosje62 @ReneDamkot lui, heel luie makkelijke clicks scoren. Zo de pest aan dit soort 'journalistiek'

Frieke72, to me Dutch
@Frieke72@mastodon.social avatar

Goed initiatief! PAIS op naar Den Haag
"met dertien organisaties op het gebied van PAIS samen naar politiek Den Haag. We nodigen bij elkaar 100 mensen met PAIS persoonlijk uit. Jij bent van harte welkom om de livestream te volgen. Die kun je ook op een later moment terugzien."
Inschrijven en details over 2 uur durende programma:
https://www.lymefonds.nl/pais-op-naar-den-haag


@longcovid @LongcovidNieuws

Frieke72, to me Dutch
@Frieke72@mastodon.social avatar

Goed initiatief! PAIS op naar Den Haag
"met dertien organisaties op het gebied van PAIS samen naar politiek Den Haag. We nodigen bij elkaar 100 mensen met PAIS persoonlijk uit. Jij bent van harte welkom om de livestream te volgen. Die kun je ook op een later moment terugzien."
Inschrijven en details over 2 uur durende programma:
https://www.lymefonds.nl/pais-op-naar-den-haag


@longcovid @LongcovidNieuws

patrickworld, to gardening
@patrickworld@mastodon.online avatar

This mthrfkr #Weeds #Gardening #Summer

Frieke72,
@Frieke72@mastodon.social avatar

@patrickworld look at that pretty flower, growing against all violence human has thrown at it ๐Ÿ’š๐Ÿ‘Œ

Frieke72,
@Frieke72@mastodon.social avatar

@patrickworld perspective ๐Ÿ˜‰
And as I can't do gardening these days, I've come around to 'team natural'. Let's see what nature brings in my garden ๐Ÿค“

Frieke72,
@Frieke72@mastodon.social avatar

@patrickworld embrace the wilderness. Less sweat, more fun (and did you know even these tiny plants and moss help to cool garden when sunny and are haven for creepy crawlies?). This is my backyard today after a few days of sun and rain. I'll pull back the creeping wild strawberries and sedum, cause they tend to overcrowd, but the rest I'll just leave. Only a broom when I can get my partner to help out ๐Ÿ˜‰

Frieke72, to me
@Frieke72@mastodon.social avatar

Yesterday's big scientific news concerns the interaction of brain, vagus nerve and inflammation which is a big part of the Longcovid puzzle. This thread explains it in layman's terms.

@longcovid @LongcovidNieuws
https://threadreaderapp.com/thread/1786349605619405280.html

Rome_and_stuff, to philosophy
@Rome_and_stuff@mastodon.social avatar

The multicoloured #mosaic and opus sectile #marble floors of the two #ancient #roman houses underneath palazzo Valentini in #rome. #archaeology #ancienthistory #ancientrome #romanhistory #ancientart #architecturalhistory #palazzovalentini

image/png
image/png

Frieke72,
@Frieke72@mastodon.social avatar

@Rome_and_stuff love this color scheme ๐Ÿ’›

Frieke72, to mecfs
@Frieke72@mastodon.social avatar

15&16 May: Free online conference on LongCovid and MEcfs! Big names of cutting edge scientists joining patients and carers.
"A mix of expert insights, personal stories, and cutting-edge research blending in with modern patient engagement approaches and grassroots movements"

Program and registration: https://unitetofight2024.world/

Boost = ๐Ÿ‘

@longcovid @LongcovidNieuws

Frieke72,
@Frieke72@mastodon.social avatar

@crow as fas as I can tell it's mostly online โ˜บ๏ธ @longcovid @LongcovidNieuws

Frieke72, to random Dutch
@Frieke72@mastodon.social avatar

Het gaat nu dan toch echt beginnen ๐Ÿ‘๐Ÿผ UMC's gaan poliklinieken opzetten
Morgen Kassa kijken
https://www.bnnvara.nl/kassa/artikelen/post-covid-klinieken-eindelijk-een-feit-minister-pia-dijkstra-geeft-groen-licht
@LongcovidNieuws

ErikJonker, to random Dutch
@ErikJonker@mastodon.social avatar

Wilders slaat wel wild om zich heen nu

Frieke72,
@Frieke72@mastodon.social avatar

@ErikJonker goed voor de internationale betrekkingen ๐Ÿ‘๐Ÿซฃ

voorstad, to privacy Dutch
@voorstad@mastodon.nl avatar

En Insta?
En Whatsapp?
En eXTwitter?
En....?

https://nos.nl/artikel/2517373-rijksoverheid-stopt-mogelijk-met-facebook-na-advies-toezichthouder

Frieke72,
@Frieke72@mastodon.social avatar

@ErikJonker heb jij whatsapp gebruikers/groepen on Signal inmiddels? Moet me daar nog in verdiepen, maar zou het graag overzetten mits het goed werkt en niet te complex is voor mijn traag LongCovid brein
@harld @voorstad

Frieke72,
@Frieke72@mastodon.social avatar

@harld @ErikJonker @voorstad ik heb al Signal en heel tevreden mee. Doelde op de berichten dat je via Signal je whatsapp contacten zou moeten kunnen bereiken die geen signal (willen) gebruiken

xs4me2, to random
@xs4me2@mastodon.social avatar

Wolf kruipt door smalle dassenpijp: 'Unieke beelden' https://nos.nl/l/2515986

Frieke72,
@Frieke72@mastodon.social avatar

@xs4me2 geweldige beelden!

notes, to longcovid
@notes@social.coop avatar

I got COVID-19 back in mid-February for the first time. I'm feeling a lot better, but I have strange lingering symptoms. It's April 7th. Tired and loss of focus by 2pm, and ever since I got infected, I've been smelling weird odors and having similar aftertastes. Not consistent at all. Has anyone else experienced these symptoms?
@longcovid

Frieke72,
@Frieke72@mastodon.social avatar

@notes sone symptoms I recognise. My LongCovid developed after 'mild' case of 'mild' Omikron a year ago. (There is no Mild in covid19 sadly). To help you prevent developing LC as much as possible, you can look at the YouTube channel in added toot.
If you want to know something specifically, feel free to reply/ask.

My best advice: Rest, rest and more rest. If you feel worsening when being active, immediately stop what you're doing and rest.

https://mastodon.social/@Frieke72/111544819016978847
@longcovid

Frieke72,
@Frieke72@mastodon.social avatar

@notes YW.
Its more burned out than tired, what you're feeling I think? i try not to use the word tired, cause people think of the feeling after a workout, short night sleep or a long workday.
But it's more like in your bones, muscles, achy feeling. Continuous more or lesser exhaustion where sleep.doesnt help
@longcovid

Frieke72,
@Frieke72@mastodon.social avatar

@notes the "can't
focus" is part of it. You're probably overexerted and your brain can't process anymore. If you can get yourself to compartimentalize more: 1,5 hours active, 20 min lying eyes closed no sound, 1,5 active again. You might make it further along the day. As my occupational therapist said: recovering fro. lC is hard work itself and takes discipline. Mostly no fun for me
@longcovid

Frieke72,
@Frieke72@mastodon.social avatar

@Rhube rest is boring and boring is good for me-mantra ๐Ÿ™‹
Limit social media a bit (though lifeline for support, help and a fun as reallife social interactions are mostly too taxing)
@graviton @notes @longcovid

Frieke72,
@Frieke72@mastodon.social avatar

@notes again my therapist: hardest thing is to stop while you're still feeling ok or good. LC tricks the body as you react later. This is the hardest thing to get your head around and where all of us struggle. Stopping. That's why the alarm function on mobile helps. Audio sign to stop, rest, check in and choose again (do I have enough energy for other things planned, and if yes what: Low or Hi impact)
@longcovid

Frieke72, to random Dutch
@Frieke72@mastodon.social avatar

Zojuist #LongCovid in nieuws bij #EenVandaag: (eindelijk) start Nederlands onderzoek... particulier gefinancierd ๐Ÿ‘๐ŸผAanvulling: het zijn niet alleen 90.000 bedlegerigen. Daarnaast vele 100.000-en die in meer of mindere mate beperkt zijn in hun leven.

Hieronder mijn situatie die ik (pre-masto) bij de buren postte:
>Vanaf #corona infectie- eerste 4 maanden https://threadreaderapp.com/thread/1632281552792027136.html
>Na 6 maanden https://threadreaderapp.com/thread/1709237577633415481.html
>Draadje onderzoeksnieuws #PostCovid
https://threadreaderapp.com/thread/1711737922091676097.html

Zal hier aanvullen

Frieke72,
@Frieke72@mastodon.social avatar

Lung doctor with an interest in LongCovid makes explanatory videos
Really usefull
https://www.youtube.com/live/TK-z-D91TIc?si=8v8YjYs1gDarLp28

Engelse longarts met interesse in LongCovid maakt uitgebreide leerzame films met uitleg


@longcovid @LongcovidNieuws @LongCovidPharmD

Frieke72,
@Frieke72@mastodon.social avatar

This thread!!! On why and exercise for a large cohort of patients don't work and why it's missed by revalidation doctors / physiotherapists
https://threadreaderapp.com/thread/1784172400159928574.html

@longcovid

Frieke72,
@Frieke72@mastodon.social avatar

My story:
Did muscle exercises (see figure middle column) from July 23 - Feb24. My physio didn't consider it wise to do endurance (my luck!)
Stopped in march due to growing muscle aches in arms. I did good while HBOT and build up strength, but this went away quickly after end (in 4weeks).

I liked the feeling of blood flow and endorfines while doing exercises. And mentally it gave me the feeling of 'doing something to get better'
Now I think I did a lot on adrenaline

@longcovid

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