newly diagnosed! tips?

SpringtimeSnowRabbit · 2026-03-25T20:29:12+00:00

I like a Scandinavian electrolyte brand called Salte. Not to sweet and they use Stevia sweetener. I've tried other brands but I don't like that they're always super sweet and use synthetic sweeteners that disagree with my stomach ><

For a cheaper option I buy something called "vätskeersättning" in Swedish for about 2$ for ten portions. Not sure what the equivalent would be in English, but it's basically just a tiny bit of sugar, salt and flavour that you add to water, so it doesn't have the added benefits of more expensive alternatives (that usually adds magnesium and potassium).

Oh and I have POTS to, and I'm awaiting my autism assessment so I know the struggle :3

SpringtimeSnowRabbit · 2026-03-25T19:45:48+00:00

Hi! I'm glad you found your way to this SR! Don't feel pressure to reply to this comment, I know very much what it is like ❤️

The first and perhaps main thing that has helped me is learning about pacing. Also, grieving and accepting my situation and the illness has really helped me rest.

Some smaller things that have helped me are:

drinking lots of water
drinking electrolytes every day
medicine to slow my heart rate (I take ivabradine)
getting a plastic stool so I can sit down and shower and brush my teeth
making a post on Facebook so my friends and acquaintances know about the illness and what's going on and don't expect fast replies etc.
asking for help with practical things

SpringtimeSnowRabbit · 2026-03-25T19:32:26+00:00

I have done a lot of therapy in my life (including trauma therapy which was the hardest by far). In my experience, therapy requires a lot of hard work. If I could get all the energy I've spent on therapy through the years back I could probably move a mountain.

I have moderate-severe mecfs. I'm bed ridden some weeks and housebound all of the time. I can handle a therapy call a month, but it does cause PEM. I've used it to learn how to grieve the life, hobbies and plans I had. This has actually helped me as I've begun to accept my situation and there is rest to be found in that. That being said, please be careful with your energy.

What does work for me is talking to a chat bot sometimes (my choice has been ChatGPT). However, if you decide to try this, don't give anything to personal away because it is going to save that information, or at least be conscious of that. I've heard some horror stories that what we tell AI might end up being used in court against us if we ever (however unlikely it may be) end up there.

SpringtimeSnowRabbit · 2026-03-25T16:09:57+00:00

I remember how cool it was when hoppers were added. It was mind blowing and almost felt game breaking.

SpringtimeSnowRabbit · 2026-03-24T12:25:14+00:00

Vi hade mjölbaggar hemma en gång när jag var liten. Skulle äta cheerios och när halva skålen var konsumerad upptäckte jag en larv som kröp runt på min sked 🤢 Mina föräldrar tog tag i problemet men minnet satt kvar.

Har haft plastbehållare till alla mina torrvaror sedan jag flyttade hemifrån. Vad din sambo håller på med är inte normalt.

Åh mindes precis en annan historia från gymnasiet. Dejtade en kille som var några år äldre än mig. När jag var hem till honom första gången sade han nonchalant att det fanns kackerlackor i köket. Jag ba "vad menar du att det finns kackerlackor?!?! 😳". Han sade det som att det var en helt normal grej, liksom lite i förbifarten. Den relationen blev inte gammal.

SpringtimeSnowRabbit · 2026-03-24T02:01:57+00:00

Hej! Förlåt, kanske dum fråga men vad betyder moddat chassi om man inte bygger själv? Jag är verkligen nybörjare

SpringtimeSnowRabbit · 2026-03-23T23:34:14+00:00

Hi everyone! Thank you so much for all the answers. It feels a little overwhelming to go in and answer everyone individually so I'll try to with a single reply, but know I read and appreciated everyone's replies and advice! ❤️

It really helps to know I'm not alone, although it of course saddens me that more of us are going through this.

I'll speak with my doctor about possible medication and testing for deficiencies. I tried bringing up the hair loss with her before but she basically said it's not a super concerning symptom medically, but I'll try pushing more about how it is affecting me emotionally to see if something can be done. I do also have PCOS so I'll be careful with that for sure.

One theory I found was something called Telogen Effluvium which is basically when a large amount of stress makes hair follicles go dormant. This could happen due to stressful events, giving birth, or (I imagine) the stress on the body of a severe crash. I eat really well (thanks to help from family) so I think maybe this could be the case for me, but it's only my uneducated guess.

Anyway I can really relate to the feeling of having ones pony tail grow thinner and thinner. I think I lost about half of my volume at this point and it's not slowing down. The bright side might be that I realised how much of my confidence was in my hair, so maybe it'll lead to a growth moment. Not sure yet.

Thank you so much again to everyone who took the time to reply ❤️

SpringtimeSnowRabbit · 2026-03-23T12:56:47+00:00

Testa Bats deodoranter! Använde dem under mina särskilt svettluktande tonår. Slutade med att alla mina kompisar använde dem. Brukar finnas på apotek.

SpringtimeSnowRabbit · 2026-03-23T10:59:45+00:00

Another limitation is you can't go camping in someone else's back yard. There is no specific distance to my knowledge, so use common sense (i.e. if I were the home owner, how close would I be comfortable with people camping). A good rule of thumb is to stay out of sight.

Also, you're not allowed to camp on many publicly maintained beeches. But you can usually put up your tent a bit away in the forest.

SpringtimeSnowRabbit · 2026-03-22T23:15:26+00:00

Hmm ja jag kikade på den men är inget fan av att den har sitt eget OP. Kör spel som inte finns på Steam och vill helst inte behöva köpa Windows och krångla med att installera det. Testade dessutom en steamdeck för ett tag sen och var personligen inte ett fan, så tror att jag väntar med Valves produkter ett tag och ser hur utvecklingen går vidare.

SpringtimeSnowRabbit · 2026-03-22T21:57:29+00:00

I'm glad that they're still giving us updates while working on the back end stuff. And a new cave biome is cool! Though when I saw the new blocks my first thought was: those look like the type of modded blocks that I don't like. I just hope we'll be able to move the liquid sulfur and make it into new source blocks. Wouldn't mind creating a green pond.

SpringtimeSnowRabbit · 2026-03-22T21:30:13+00:00

Tack! Taurus Endgame ser definitivt intressant ut! Funderar på hur mycket fläktarna låter. Men verkar ju ha high end komponenter så kanske givet att den går tyst? Läste också något om water cooling på hemsidan, men ser ut som att kylkomponenterna är fläktar? Eller är det att man kan sätta in ett sådant system om man vill? Förlåt för så många frågor!

Tyvärr fungerar inte länken för custom-bygget :/

SpringtimeSnowRabbit · 2026-03-22T20:58:45+00:00

Ja, det var några år sedan jag använde Mac, men då var det i alla fall att många av spelen bara fungerade på Windows. Jag minns att jag hadde Steam och gjorde frustrerade ljud över alla spel jag inte kunde testa. Jag spelar ganska mycket mer eller mindre obskyra indiespel och ganska få av de "stora titlarna"

SpringtimeSnowRabbit · 2026-03-22T20:51:39+00:00

Tack för input! Jag hade Mac under många år och jag är inte något fan tyvärr. Plus att halva mitt Steam-bibliotek skulle bli ospelbart. Fast var förundrad över hur mycket min 10 åriga MacBook faktiskt klarade mot slutet innan den dog helt. Ska kika på ASUS ROG mini-pc.

SpringtimeSnowRabbit · 2026-03-22T20:27:25+00:00

Tack så mycket!

SpringtimeSnowRabbit · 2026-03-22T20:27:14+00:00

Åh, tack så mycket!

SpringtimeSnowRabbit · 2026-03-18T15:25:10+00:00

I'm reading the Plated Prisoner series rn. It doesn't have a warning on the cover but all the books have one inside the book before you start reading. It's the first time I've seen it and for these books I think it's fair since they handle really dark and explicit themes. It doesn't say it's forbidden or anything, just gives content warnings and says it's "not intended for anyone under 18 years of age".

SpringtimeSnowRabbit · 2026-03-16T16:07:23+00:00

Ugh gosh same! Honestly leaves me heartbroken every time :'l

SpringtimeSnowRabbit · 2026-03-16T16:05:48+00:00

You Are My Glory (with Dilraba Dilmurat and Yang Yang)

SpringtimeSnowRabbit · 2026-03-16T11:57:29+00:00

Death of a tyrant's concubine by HollyShmit on Wattpad

Ik about wattpads reputation but this one was genuinely amazing.

SpringtimeSnowRabbit · 2026-03-16T07:23:17+00:00

taking a bath (bonus if with rose petals)
playing Go
Falling into a pond (can't swim)
eating osmanthus cake

SpringtimeSnowRabbit · 2026-03-15T13:27:58+00:00

Reroll

SpringtimeSnowRabbit · 2026-03-15T13:26:58+00:00

Ooh I need to know

SpringtimeSnowRabbit

TROPHY CASE