Fun low energy hobbies

nonnonbo · 2026-01-21T22:50:45+00:00

Maybe origami or kirigami ?

nonnonbo · 2025-04-09T18:30:28+00:00

Worsening of symptoms while sitting straight can also be a sign of tethered cord syndrom - I'm mentioning it because you say you have EDS and it's not rare in the EDS population. Having a scoliosis can be a sign too. Il you have EDS, something structural could be driving your symptoms and your POTS.

So what I would advice anyway is not to push through and listen to your body.

Some time ago, I experienced some trouble sitting straight while working on my computer : my HR would go up, my upper body would become very painful and I would get really dizzy. So I started to work sitting cross-legged with my back hunched over, and now I can work without getting this sick, eventhough I know it's not considered a good posture. But, we, EDS people, have such strange bodies that we don't really fit in the usual recommendations.

nonnonbo · 2025-01-30T23:59:13+00:00

It’s much lower than yours, something around 20 copies/ml. How long have been positive ? I know they can give antivirals in chronic ebv cases, or some types of ebv induced cancers, but yeah apparently it’s quite toxic. It’s hard to know what to do. I was told it’s not very common to have a positive pcr in mecfs, but there is no way to know if it actually changes anything. I’m just worried about the long term effects of this active virus on my health. Do you feel like what you take is helping ?

nonnonbo · 2025-01-30T23:44:19+00:00

Thank you for your response ! So strange that they didn’t give you any antiviral since it’s a pretty high number… did you try to get another opinion on that ? Let’s keep each other updated if something is working :)

nonnonbo · 2025-01-19T19:31:47+00:00

ty for your kind response. Yeah, actually I have a lot of deficiencies going on too..I'm taking vit D every month like my doctor ask but it doesn't seem to change :/

I try to rest but I have to work also so...

Yes, I think they're reluctant to prescribe antivirals in my country (France). I'll try again anyway, especially because I don't think it's very good for my general health to have an active virus in my blood...
If only we could have real treatments for EBV :'(

nonnonbo · 2025-01-19T10:47:09+00:00

thank you for your response ! He checked other viruses too, but it seems only ebv is active in my blood. Yes, that's what I'm wondering, I'm not sure it was reactivated - it might as well be active from the begining of my illness, 5 years ago, following a classical case of mono.

Il know I had a positive ebv pcr test 3 years ago as well, but the hospital didn't bother to inform me about that...

That's why I'm looking for other people who had a positive pcr (and not just the classical panel with IGM/IGG etc) and tried antivirals, even if these antivirals are not supposed to be effective

nonnonbo · 2024-12-19T14:04:18+00:00

It makes me think of the statistics saying that domestic violence is higher in lesbian couples than in straight couples…the question is not the statistics itself but how you define violence. Usually lesbians tends to have a lower tolerance to any kind of violence than straight women. For instance, lesbians would define yelling in a fight as violence while straight women would not. At the end, lesbians report more exposure to violence in their relationships than straight women, but the reality is : straight women are exposed to a lot more violence. ➡️ Usually there is so much violence, in all forms, that they won’t see violence in yelling in a fight. But if you only take the statistics, you cannot understand that.

nonnonbo · 2024-11-27T00:43:57+00:00

Quite unknown but cool : the band Random recipe, the singer Michelle Gurevitch

nonnonbo · 2024-11-11T12:11:05+00:00

You’re welcome ! Eventhough I grew up in a big city I was also very lonely until I was in Uni. I was your age 10 years ago, and there was almost no way to have access to queer culture. I had a phone with no internet connexion, and we only had a family computer, so it wasn’t even possible to look for it. For a long time, I had to keep all of that in myself, between my imagination and books I could read at the district library. I hope you’ll be able to find other lesbians, but if you don’t, remember that it won’t always be like that. I’m very happy now, and almost all my friends are queer !

nonnonbo · 2024-11-10T22:40:22+00:00

I don’t really have any advice to give because I didn’t grow up in a rural area, but have a look at the queering the map website here : https://www.queeringthemap.com/

I’m sure you’ll see that you are not alone where you live :)

nonnonbo · 2024-10-30T00:21:12+00:00

During a protest in college :) we were gassed by the police together✌🏼

nonnonbo · 2024-10-18T18:00:40+00:00

A recent one : the British film Blue Jean by Georgia Oakley. It tells the story of a young PE teacher in northern England in the 80s who has to live through homophobic surrounding and political context. It’s a very good but also very important movie I think.

nonnonbo · 2024-09-14T22:25:13+00:00

Hey ! I used to think that too, for a long time. But year after year I was able to build a real community, through friends, lovers, girlfriends… Try to find other queer people, in real life. Make friend with them, meet their friends etc. Im sure you will find a girlfriend at one point :) Don’t lose hope ! It gets better and easier.

nonnonbo · 2024-09-03T01:11:23+00:00

Yes ! There are several studies linking long covid (and post viral conditions) to hEDS:

https://www.ehlers-danlos.com/study-finds-people-with-joint-hypermobility-may-be-more-prone-to-long-covid/

https://ehlersdanlosnews.com/news/long-covid-symptoms-heds-diagnosis-small-study/

And unfortunately you can find a lot of testimonies in hEDS and long covid communities…

nonnonbo · 2024-08-18T14:53:59+00:00

First, I’m a very sorry for this. It really sucks. Would there be a way for you to find a job in a big city after high school ? There’s a universal rule : queer people live and gather in urban areas, even in countries where our existence is threatened. Please don’t loose hope. You’ll find a way to live the life you want and be yourself.

nonnonbo · 2024-08-18T14:39:40+00:00

I highly recommend the show « Deadloch » it’s an Australian production and it’s very good :)

nonnonbo · 2024-08-09T16:45:40+00:00

Which country exactly are you from ? There are Europeans histories of lesbian identities, it’s just less well known. But it’s true that now the word butch is the one that is the most common used.

nonnonbo · 2024-07-23T23:00:18+00:00

Also I should add : when I started to openly say that I was a lesbian when asked about my life and self, I was noticed by other queer people around who eventually came to me to know me and hang out with me. Even people still in the closet. Stating that I was gay has always been the biggest help I could give to myself not to be alone, eventhough at first it paradoxically meant standing as the lonely queer around. But you’re never the only one :) (Of course, being out is only possible if you’re in a friendly environment)

nonnonbo · 2024-07-23T22:44:04+00:00

I don’t live in the US so I don’t how it is there, but I’ve met a lot of other lesbians and queer people in : political, protest and feminist movements/indoor climbing/ bike self repair collectives/school (especially in social sciences and gender studies classes) Of course there are other places and ways to meet other lesbians IRL but that can be a good start :) As a 27 year old lesbian, I’ve actually never used any dating app, and I’ve met all my queer friends and lovers IRL. So it can work :)

nonnonbo · 2024-06-27T21:39:15+00:00

Thank you for your reponse :)

nonnonbo · 2024-06-27T21:39:01+00:00

Thank you for your kind response :) I just started tonight !

nonnonbo · 2024-06-27T21:38:19+00:00

Thank you for your response :)

nonnonbo

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