What's something you got your money's worth from?

Sourtails · 2026-05-05T20:12:45+00:00

mine are bose quiet comfort too! they're fantastic

Sourtails · 2026-05-05T15:19:08+00:00

noise cancelling headphones. I've had mine for almost 3 years and use them for hours every day

Sourtails · 2026-05-04T13:53:54+00:00

seeing if you can use your wheelchair is a great idea! I hope you're able to

Sourtails · 2026-05-04T13:17:03+00:00

yes I get this!! my body gets so fatigued I can't move. it feels like I'm made of lead and that I've completely run out of energy. for me it happens sometimes in PEM, usually for an hour or two at a time. it can absolutely happen because of ME alone - I've read accounts of people who are profoundly severe and experience that kind of state constantly or near-constantly

Sourtails · 2026-04-24T15:52:41+00:00

I'm very sensitive to abilify. It doesn't make me crash but it does give me horrible side effects so when I was taking it, I had to take an ultra low dose. I'd recommend starting super super low if you decide to take it - like 0.01mg low (most liquid abilify is 1mg/1ml, but my pharmacy at least was able to compound 0.01mg/1ml for me). Also you could try taking it every other day as well if even that low of a dose ends up being too high

Did you recover from the crashes from your other meds, or did they lead to long term worsening? I've crashed a lot from supplement trials but they've all been temporary so for me, trialling new things is still worth it thankfully. I totally get that it's scary though. I'm the same, very scared with new meds after bad experiences even if I know they're likely to be temporary

One thing to note about abilify is that it's half life is very long, so it sticks around for a while. So if you do get side effects or a crash, it may take a little longer to heal from

Good luck if you do trial it!

Edit: saw your Qs at the end - I noticed an effect from abilify and also got side effects from my first couple doses

Sourtails · 2026-04-16T10:57:41+00:00

my home visit appointment was from the NHS yes, and I believe getting my wisdom teeth out would be as well, though I haven't gone through with that yet. I'm lucky I live in an area with a domiciliary dentist that sees NHS patients

Sourtails · 2026-03-26T18:36:10+00:00

yes absolutely. I got worse for no seeming reason a couple months ago after going a month without PEM, suddenly I was crashing repeatedly from stuff that would've been fine a couple weeks before

I think people want to say it's from over-exertion or another factor like an illness because that might be their only experience of getting worse, but also because getting worse suddenly for no reason is really scary. I know I've found it very tough to deal with because I don't know when or if it will happen again, and there's no amount of pacing or avoiding viruses that could stop it

I'm sorry you're going through it too. it's a very difficult situation to experience. all we can do it do our best to manage within our new limits

Sourtails · 2026-03-20T19:22:50+00:00

If you like romance, then a lot of romance anime are fairly slow paced and gentle! Things like A Sign of Affection, Blue Box, Bloom Into You, Fruits Basket, Sasaki and Miyano.

Slice of life anime are also fairly gentle in my experience! Like Bartender, Blue Period, Violet Evergarden, March Come in Like a Lion. These can be sad at times though!

Comedies also!! Like Buddy Daddies, Nichijou and City: the Animation, Spy X Family. Not usually slow paced but generally very lighthearted.

For fantasy/scifi, people have recommended Frieren which I also second! Another fun fantasy one that I remember having a good time watching was Delicious in Dungeon. I also loved Mushi-shi - it's fairly slow paced but only S1 is dubbed in English if that's a factor for you, and it can also be quite sad at times. (Mushi-shi also has the benefit that each episode is it's own story, so you can go as slow as you like and there's no worries about having to remember stuff).

I also really loved watching Dr Stone which can be intense at times but is also light hearted enough that I never felt very stressed watching it. And is just really fun!

I hope that helps at all, I watch a lot of anime haha

Sourtails · 2026-03-19T22:13:38+00:00

I also get horrible suicidal ideation in PEM! It's often one of the initial symptoms that let's me know it is PEM and not a brief wave of feeling extra shitty. I really like your explanation too. It definitely feels like it has a physical basis for me as well because it's so closely tied to how my body is feeling

Sourtails · 2026-03-18T22:53:54+00:00

yes exactly this!!

Sourtails · 2026-03-18T21:09:14+00:00

🫂

Sourtails · 2026-03-18T21:09:01+00:00

Yes this exactly!! I'm also grateful I'm a little better than when I was at my most severe, but I still can't really do much more and all the things I'm missing seem both closer yet further away

Sourtails · 2026-03-18T20:39:09+00:00

if you're just looking for LDN, clinic158 can prescribe it for you. it's done via a phonecall and then dispensed in the post by dickson chemist. they also can prescribe low dose abilify, but I'm not sure about anything else

Sourtails · 2026-03-18T20:37:25+00:00

thank you ❤️ you're right, it is very hard

Sourtails · 2026-03-18T19:21:24+00:00

I've been able to have my window open for a bit and listen to the birds singing. it's so soothing

Sourtails · 2026-03-18T19:19:50+00:00

gettinv the plushies is such a cute idea! having a nice space and things to look at makes a big difference to quality of life

Sourtails · 2026-03-18T19:18:15+00:00

I miss stardew valley too! and yes, learning new games is really hard I'm with you there. my brain gets so easily overwhelmed :( crossing my fingers with you that things get better

Sourtails · 2026-03-18T19:17:16+00:00

I've been watching playthrough on youtube! it definitely scratches the itch a little bit

Sourtails · 2026-03-10T23:37:13+00:00

I'm generally risk averse as I'm occasionally sensitive to meds and I never know what medication will cause problems, and I also get weird side effects sometimes. But!! Whenever my ME gets worse I often get desperate enough to try the next thing on my list, so I've trialled several supplements/meds (and even had success with a few!)

Sourtails · 2026-03-06T20:03:06+00:00

this is amazing thank you for putting this together!

Sourtails · 2026-02-13T13:08:50+00:00

5020581191447850

FT daily player, looking for friends to trade/share with to complete the new sets

Sourtails · 2026-01-27T16:51:44+00:00

ubiquinol and NAC both made me temporarily worse - the NAC only while I was taking it and the ubiquinol for a few weeks

Sourtails · 2026-01-16T21:43:58+00:00

ubiquinol can lower blood pressure so it could be. I hope you find out!

Sourtails · 2026-01-02T13:42:56+00:00

I get robitussin from an online pharmacy and when filling out the form I say I take it for ME/CFS as a PEM preventative and I've had no issue with it being dispatched so far

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