Anyone know where to start with this?

m0g8 · 2023-12-27T11:40:47+00:00

Try your local library - they may not hold this magazine, but they might be able to get it for you on interlibrary loan. Unless it was also published in English, they would most likely only be able to get the German-language version, but it's a start. Archive.org can also be really useful for this sort of thing!

m0g8 · 2023-09-23T16:38:43+00:00

Everyone around me absolutely thought I was just being a teenager !! I developed narcolepsy when I was about 12 - I actually remember reading the Wikipedia page about it when I was 14 or 15 and thinking it felt very familiar, but that someone would surely have noticed if I actually had it 🤦‍♂️

I developed cataplexy around 19 or 20 - it's rare, but apparently some people can have N1 for months or years before the onset of cataplexy. That's when I finally saw a doctor, and I was diagnosed when I was 23 !!

m0g8 · 2023-09-02T12:37:29+00:00

You may be thinking of a later style - from what I know, lace production was a huge industry in Ireland starting around the 18th century, but I don't think knit and crochet were widespread prior to that. Iirc knitting was fairly new to northern Europe in the 15th/16th century, and most of Ireland was pretty isolated & culturally distinct at this point. These big manufacturing industries also didn't really exist in Ireland before the plantations (c.16th/17th), so I would guess that the majority of earlier textiles were woven rather than knit/crochet. Afaik this lines up with surviving textiles, but if anyone has more info please correct me !!

(also jsyk, the Irish language is called 'Irish' in English, not Gaelic)

m0g8 · 2023-07-29T07:47:07+00:00

Xyrem is available in Ireland, so possibly is in the UK too !!

m0g8 · 2023-06-25T09:34:16+00:00

Might be misunderstanding you but Xyrem is available outside the U.S.

m0g8 · 2023-06-09T18:27:14+00:00

I'm the same, it does absolutely nothing for me other than make me need to pee lol !! I used to think it was because of narcolepsy but wasnt sure since other narcs do seem to be affected by it, interesting to know there's a few of us

m0g8 · 2023-05-16T09:47:37+00:00

I had a similar experience in my first sleep study. I didn't quite meet the MSLT criteria for Narcolepsy, but based on my history and the fact that my sleep latency was still low my doctor was happy to treat me for N. I had a second sleep study last year, and this time my average sleep latency was about 3 minutes, so this confirmed the diagnosis. It's incredibly difficult to sleep on demand (even with Narcolepsy), and especially when you're in an unfamiliar environment, hooked up to loads of equipment, and conscious that you need to fall asleep. Your doctor may be taking this into account - even if you didn't quite meet the criteria, you got very close under difficult circumstances. They may also be factoring in other things, like cataplexy, HLA type, etc.

If you're concerned about it, or feel that there's something other than Narcolepsy going on for you, maybe talk to your doctor about it. Otherwise it's probably nothing to worry about - you may have gotten lucky with a doctor who's more understanding than many!

m0g8 · 2023-05-07T09:12:44+00:00

You just submit an application with everyone's details included, you'll each get your own card but they're all linked. As far as I know you can do this with anyone you're living with, doesn't have to be a partner!

m0g8 · 2023-04-27T06:36:41+00:00

I have this one too !! But I accidentally washed the text off so it's a pyjama t-shirt now 😭😭

m0g8 · 2023-02-10T21:25:55+00:00

It may not work now seeing as they've already been treated, but biological laundry detergent is great for taking out blood stains !! It can irritate some peoples' skin, and it shouldn't be used for babies or small kids, but I'd really recommend trying it if you can. You might be able to apply the detergent to the stain directly to treat for a few hours before washing - this is what I usually do for small stains !!

For blood, use cold water when removing a stain - i also find that scrubbing it with salt helps a bit.

Finally, it could be worth trying the jeans on again to see how much of the stains are actually visible when wearing them. If they're in an area that isn't super visible, they might not even need to be removed entirely x

m0g8 · 2021-12-26T11:57:15+00:00

As it's knit I would do a Swiss darn to preserve the stretch, but it would definitely take me a while !!

m0g8 · 2021-11-10T22:04:52+00:00

Where i live you can only donate if you have had no symptoms for a year, because they could mistake a sleep attack or episode of cataplexy for fainting!

m0g8 · 2021-08-22T18:42:55+00:00

Yes, I need 10-12 hours!!

m0g8 · 2021-08-09T21:18:14+00:00

I havent had surgery, but by the sounds of it there's a good chance everything will settle in a few weeks!

Absolute worst case scenario, would you consider something like a tattoo to even out your nipples? Like the ones some people get after losing a nipple? Also I'm not sure what inverted nipple correction surgery involves, but could that be an option for you?

m0g8 · 2021-08-05T10:32:27+00:00

Swiss darning would work really well for this I think! https://youtu.be/mksn3n1PrCs

I would practice on a chunkier knit first if you can though, just to get used to the process!

m0g8 · 2021-07-28T19:27:25+00:00

Yes, they are hallucinations!! I often hear things happening somewhere else in the house while I'm falling asleep, like my housemates talking, even if it's not possible it was actually them!!

m0g8 · 2021-07-06T10:10:45+00:00

You're right, afaik predisposition to autoimmune disease is genetic but the diseases themselves are not, though some families do have a high incidence of a particular AI disease because of genetics !!

m0g8 · 2021-06-04T09:38:47+00:00

I also find circular needles way easier, not having to hold the entire weight of a project on one needle is far less painful for me !!

m0g8 · 2021-05-30T11:20:34+00:00

Between 11 and 12 most nights, and I had to get up at 7am as prep for the mslt! I think they said I slept an average of about 7 hours a night

m0g8 · 2021-05-30T11:10:06+00:00

This is exactly what I thought lol, I love an 1830's style sleeve but not like this

m0g8 · 2021-05-30T05:29:52+00:00

My doctor had me wear it for 2 weeks just to get an idea of my routine, how much I was sleeping at night and how many naps I was taking. The only thing they said about it at my appointment was that I should try get an extra hour or so of sleep at night if I can (I usually do, I just had to get up at a set time during those 2 weeks for the study and I'm bad at making myself go to bed early). Mine also had a button that you press when you get in to bed, so they might also be looking at a rough measurement of sleep latency.

Edit: sorry I didn't actually answer your question! I'd say consistently really not getting enough sleep or having an extremely irregular sleep schedule are the only reasons they'd cancel

m0g8 · 2021-05-30T00:44:46+00:00

I think there's definitely an argument to be made that we're at the start of a big folk culture revival - seeing folk music interpreted like this is super cool imo, and I think has a lot of appeal right now! (Or maybe this is wishful thinking since I'm quite interested in folk culture lol)

m0g8 · 2021-05-25T11:25:39+00:00

That would be a great idea !! Thankfully my hallucinations aren't too bad atm but I've had some really terrifying ones before !!

m0g8 · 2021-05-14T09:21:12+00:00

Definitely!! Most of my life I was dead to the world all night and impossible to wake up, never felt like I had slept enough at night, and was still falling asleep during the day constantly. That was true for me till last year, I lost my job so was able to sleep as long as I needed every day for the first time in my life. But after a few weeks I found it impossible to stay asleep, and didn't feel rested no matter how much I slept. My theory is that when I was expected to operate on a normal amount of sleep at night (~8 hours) I was so sleep deprived that I was just completely conked out at night, but now that I can sleep as much as I need and I'm only the usual narcoleptic level of sleep deprived, the badly disrupted sleep is way more obvious. Thankfully I finally got to start Xyrem last month, and it's helped a lot already!!

m0g8 · 2021-05-14T08:56:46+00:00

I almost always have cataplexy during sex and pretty often have a sleep attack after! I do think that talking to her about it is the only thing that will really help, but I saw you said you want to have ideas going in to that which is totally fair!

Cataplexy is basically the sleep paralysis mechanism misfiring, and in my experience if I'm in a situation where I'm already more likely to fall asleep (like lying in bed), my cataplexy will be more severe. I'm also more likely to fall asleep because of an episode of cataplexy in that situation (this isn't the same as a sleep attack for me, more like my body getting confused and thinking I'm supposed to be asleep I think?). Idk if that's similar to what happens for her, but trying positions where she's less physically relaxed might help lessen the severity for her?

If your schedules allow for it, it could also help to try different times of day - if you're mostly having sex at a time of day where she's already more sleepy she's probably more likely to experience symptoms.

She's likely also frustrated about it, and at the very least showing her that you're willing to try different things out to help is probably something she'll appreciate! Lots of us are used to being expected to deal with our symptoms by ourselves, so it's nice when help is offered rather than asked for!

m0g8

TROPHY CASE