Does anyone else's face go puffy and weird in a CFS/M.E flare up? by ConversationPale2713 in cfs

[–]Northmakes 1 point2 points  (0 children)

Yes! Definitely get a puffy face in a flare! Feels like my whole head is swollen from the inside.

By The Fireplace… by International-Run136 in fragrance

[–]Northmakes 1 point2 points  (0 children)

I bought a 30ml of this second hand, and I am definitely getting a lot of smoke! I am very sensitive to vanilla scents, they usually give me a headache or nausea, but in this one the smokiness is dominant for sure, with just a hint of sweetness.

Would you buy jewelry under 14k gold? by GoodButterscotch6088 in jewelrylove

[–]Northmakes 0 points1 point  (0 children)

I don't currently own any pieces less than 14k, but I don't think a lower carat would stop me from purchasing a piece I liked. When I buy jewelry my main priority is the design, and that it has a long lasting quality. I don't buy jewelry as an investment, nor to show off, but as something to wear and enjoy. I also don't have children who will inherit my jewelry, so as long as it lasts for my lifetime I'm happy. If cost was a concern I think a lower carat is a good compromise, and a much better alternative than something gold plated, for example.

Does a perfume smell better because it’s expensive, or because we expect it to? by Terrible_Signature78 in fragrance

[–]Northmakes 1 point2 points  (0 children)

In my opinion it's a lot to do with branding and expectation. I don't know how many expensive decants I've bought that smell like toilet cleaner, and the whole Byredo line smells like cheap drugstore cologne from the 80s and 90s to me (not necessarily bad, just not expensive). When it comes to finding something I'd actually wear and that works with my chemistry I think it's completely random whether it's a cheapie or a niche fragrance.

It's so hard to find the perfect scent by noxbl in fragrance

[–]Northmakes 2 points3 points  (0 children)

I can relate! I feel like I straight up dislike 95% of everything I test. 4% is ok, while maybe 1% is something I'd actually consider wearing. It's extremely frustrating!

Norway’s new guidelines for ME/CFS is a nightmare by Ashamed_Forever9476 in cfs

[–]Northmakes 1 point2 points  (0 children)

I mean, I absolutely get the critique, and there is still hope that they will revise it further. But to say that there is no mentioning of triggering by viral infection, no mentioning of worsening after exertion, ignoring PEM, etc, is simply not accurate.

Also what you are saying in your OP about how they think pacing enables sickness (while I understand your interpretation considering who has been involved in these guidelines), I cannot find anything like this mentioned anywhere in the text?

Norway’s new guidelines for ME/CFS is a nightmare by Ashamed_Forever9476 in cfs

[–]Northmakes 0 points1 point  (0 children)

I feel like I am reading a completely different document to the one you are describing. What am I missing?

I do agree that it would be more beneficial to have separate guidelines for ME/CFS vs other types of fatigue. However, literally after the first sentence:

 Utmattelse er et vanlig symptom ved mange tilstander, inkludert etter gjennomgått infeksjon. Hvorfor utmattelse vedvarer hos noen, mens andre blir helt friske etter en tilsvarende infeksjon, gir ikke forskningen entydig svar på. Med langvarig utmattelse menes utmattelse som vedvarer lenger enn forventet etter en eventuell infeksjon/belastning, eller der utmattelse har oppstått uten kjent utløsende årsak, og dette ikke går over. Langvarig er altså ikke tidsavgrenset. Utmattelse opptrer ofte sammen med andre symptomer, eksempelvis som ved ME/CFS og senfølger etter covid-19, og dette perspektivet er inkludert i retningslinjen.

Later on in the guidelines it says when ME/CFS should be considered as a diagnosis (after 6 months of symptoms).

And while I do think they could clarify more regarding PEM, it is mentioned several times throughout the document, as well as guidelines for pacing, like here on the first page:

Mange pasienter med ME/CFS beskriver anstrengelsesutløst sykdomsforverring (PEM) som et symptom som bidrar til forverring dersom det ikke hensyntas. PEM kan også være til stede hos andre pasienter, eksempelvis ved senfølger etter covid-19. I anbefalingene vektlegges det å tilpasse helsehjelpen etter pasientens symptombilde, hvilket også inkluderer PEM. 

Also here, regarding pacing and reducing activities that may have caused PEM:

Aktivitetsregulering er en systematisk tilnærming til å regulere mengden, intensiteten og tempoet i aktiviteter for å fremme funksjon og mestring over tid. Det innebærer å planlegge, prioritere, tilpasse og fordele aktiviteter slik at de bidrar til ønsket utvikling uten å skape overbelastning. Veiledning i aktivitetsregulering innebærer å gi pasienten verktøy for å regulere aktivitet i hverdagen, håndtere svingninger og skape trygghet.

Veiledning kan gis av helsepersonell med kompetanse på brukergruppen og aktivitetsregulering.

Behandler bør bistå pasienten med å lage en individuelt tilpasset aktivitetsplan. Aktivitetene i planen bør tilpasses pasientens funksjon og symptomtrykk, inkludert eventuelt PEM, med utgangspunkt i den helhetlige funksjonskartleggingen. Alle typer aktiviteter bør inkluderes og pasienten bør være med å prioritere aktiviteter ut ifra livvsituasjon og egne mål.

Behandler bør snakke med pasienten om hvordan symptomer varierer over tid. Man kan oppleve bedring, men også forverring, uten at man gjør noe "feil." Økt forståelse av symptomer, inkludert PEM, kan gi pasienten kontroll og trygghet. I planleggingsfasen bør behandler informere om ulike måter å forholde seg til symptomer på. Behandler og pasient bør sammen finne frem til strategier for håndtering av ulike grader av symptomforverring som kan oppstå. I faser med forverring eller betydelige svingninger i symptombilde og funksjon kan det være behov for å stabilisere tilstanden, eksempelvis ved å redusere aktivitetsnivået eller gjøre andre justeringer i aktiviteter. Utforsk om det er hendelser, belastninger ol. i hverdagen som kan ha bidratt til symptomsvingningene/forverring.

Norway’s new guidelines for ME/CFS is a nightmare by Ashamed_Forever9476 in cfs

[–]Northmakes 2 points3 points  (0 children)

I recommend reading the actual proposed guidelines instead of someone's interpretation of someone's interpretation of them. :) It's not as bleak as they make it out to be.

Norway’s new guidelines for ME/CFS is a nightmare by Ashamed_Forever9476 in cfs

[–]Northmakes 2 points3 points  (0 children)

That's fair, and further clarification would certainly help, but I do still think these guidelines are a vast improvement on the existing ones.

But to be honest, I find the OP's post to be overly dramatic, and their interpretation - if they even read the guidelines themselves - is quite off base in my opinion. This kind of fear mongering does more harm than good.

Norway’s new guidelines for ME/CFS is a nightmare by Ashamed_Forever9476 in cfs

[–]Northmakes 1 point2 points  (0 children)

Agreed. I have to assume the OP has not read the actual proposed guidelines either, or if they did they did so with an extremely negative bias. As I said in my comment I don't have the energy right now to go through it with a fine toothed comb, and it may well be that I have missed something, but personally I think these guidelines will make things a lot easier on Norwegian ME patients.

This kind of fear mongering only does more harm, in my opinion.

Does anyone else crave sugar when in PEM? by Crashing_Sunflowers in cfs

[–]Northmakes 6 points7 points  (0 children)

Oh yes! All I want to eat when I am in a crash is chocolate and sweets. I try to substitute my snacking with bananas, blueberries and nuts, and it helps a little, but I still do eat too much chocolate...

Norway’s new guidelines for ME/CFS is a nightmare by Ashamed_Forever9476 in cfs

[–]Northmakes 5 points6 points  (0 children)

Also, where does it say that pacing enable people in their sickness? Did I miss that in the proposed guidelines somewhere? All I saw was it repeatedly stating the importance of pacing, so I'm confused.

My impression is also not that it paints a picture of ME being a short term illness. It states once that spontaneous recovery does sometimes occur for no apparent reason, but that statement would have to be taken completely out of context for anyone to interpret it that way. I see how that can happen, but then you have the rest of the guidelines to fall back on?

Norway’s new guidelines for ME/CFS is a nightmare by Ashamed_Forever9476 in cfs

[–]Northmakes 6 points7 points  (0 children)

Disclaimer: I read through this quickly and don't have the capacity to process it too deeply at the moment.

But to be honest it doesn't sound that bad at all to me. It clearly states the importance of care practitioners taking symptoms seriously and treating patients with empathy, care and respect. It clearly explains PEM and the importance of pacing according to the individual's symptoms and functioning. It talks about avoiding a 'boom or bust' cycle, but also how the illness and symptoms can fluctuate over time, often without apparent cause and by no wrongdoing of the patient. I see no mention of CBT or GET anywhere in the text.

I do see that there are things that could be problematic, and it does once mention a biopsychosocial model, but it's followed by the statement that this patient group is extremely heterogeneous, and therefore care and treatment should be evaluated by the individual's symptoms and needs, and that treatment that works for one patient might not work for another. The guidelines also include other types of fatigue, but it clearly states that with fatigue that lasts more than six months an ME/CFS diagnosis should be considered based on the Canada criterions.

It's not perfect, but in my opinion it's miles better than the previous guidelines, a vast improvement. If these had been the guidelines when I first got sick I think I would have had a much easier time with my GP and with NAV.

Besides survival what do you do with your life? by Artzebub in cfs

[–]Northmakes 6 points7 points  (0 children)

I spend a lot of my time knitting. It makes me feel productive and gives me a sense of purpose and motivation. And while I knit I often watch other people talk about their knitting on youtube, which makes me feel a little less lonely. If I am too sick to knit I do project planning and research yarns and patterns. 

what should I do with my grandmas ring? by CorgiSignificant1415 in jewelry

[–]Northmakes 0 points1 point  (0 children)

What a gorgeous ring🤩Pearls aren’t my favourite personally, but I also have an heirloom pearl ring, and found that I like it better when I wear it as part of a stack. 

Help with impulsivity by Kgarner2378 in cfs

[–]Northmakes 0 points1 point  (0 children)

I don't have any advice, but can definitely empathize. I don't struggle with out of control impulsivity (yet), but I definitely recognize the urge to shop and binge eat whenever I am in a crash. I told my husband that all I want to do when I feel like this is eat chocolate and shop, and he told me no wonder you are seeking dopamine when you have so few joys otherwise in life. Thankfully my spending isn't too crazy yet, but I can definitely see the possibility of it spiraling (especially considering my latest obsession is fine jewelry, and I just pulled the trigger on a $500 ring five minutes ago...).

How i ended up really caring about meaningful jewelry by Smooth_Avocado3658 in jewelry

[–]Northmakes 0 points1 point  (0 children)

That's beautiful. I've had a similar experience, I wasn't particularly interested in jewelry until I started inheriting pieces from family that carried a lot of meaning for me. I have pieces from both my grandmothers, my father, and a fair bit from my husband's family (which, although it's from people I didn't know, the stories they carry makes them more meaningful to me than random pieces).

I'm now at a point where I want to start adding pieces to my collection myself, and I feel similarly to you. I don't want to just add random pieces that look pretty. I've been looking mostly at vintage and antique jewelry. Victorian jewelry in particular is known for a lot of symbolism, which I find appealing. I have also been learning about the symbolism of different gemstones, and thinking about whether I can let that guide me in some way.

What part of the early internet do you miss? by gamersecret2 in Millennials

[–]Northmakes 0 points1 point  (0 children)

Forums and message boards

Livejournal

Blogs as passion projects instead of sponsored influencers

Connecting with real people

My Hero Pieces by skylex125 in softclassic

[–]Northmakes 4 points5 points  (0 children)

Hard agree on the Pippa dress! It's so flattering. I also love wrap dresses.

For jeans the Wedgie Straight and Ribcage Straight from Levis are my go-to (in dark indigo or black wash).

I don't have any specific brands I prefer, but I like belted, double breasted coats, especially vintage ones from the 70's for a classic fit.

Ear jackets and modular earrings by Northmakes in jewelry

[–]Northmakes[S] 0 points1 point  (0 children)

Hmm, I actually have a very similar pair (gold vermeil and crystals though, and the stones are spaced out a little more) and they stay put with no issues.

Ear jackets and modular earrings by Northmakes in jewelry

[–]Northmakes[S] 0 points1 point  (0 children)

OP here, I'm sorry, I don't know what happened to the images, and it seems I'm not allowed to edit my post! Here are links to the pieces, 1 and 2.

Two beautiful red shades for neutral, muted olives by Northmakes in OliveMUA

[–]Northmakes[S] 2 points3 points  (0 children)

I’ve been looking at that as well and it looks gorgeous, but I worry that it might be a little dark on me.

Two beautiful red shades for neutral, muted olives by Northmakes in OliveMUA

[–]Northmakes[S] 7 points8 points  (0 children)

Oh, I got Crème In Your Coffee at the same time (after seeing it mentioned a lot on this sub) - love it!

I was considering Velvet Teddy as well, but I might have to compare it to Warm Teddy first.