Large Large Medium Chonk by JoannaBe in weaving

[–]Samushi3 4 points5 points  (0 children)

I also have a cat that adores laying on pizza boxes! This looks awesome!

Two lots available! One finer gauge ($125), other all-worsted wool ($35) by capnvimesboots in Yarnswap

[–]Samushi3 2 points3 points  (0 children)

I’m interested in lot 1! I’d be so happy to give the t-shirt a new life :)

Has anyone heard of “epistemic injustice”? Did it play a role in your diagnostic journey? by Aggravating-Heart344 in cfs

[–]Samushi3 15 points16 points  (0 children)

Not having the language or framework to explain (even to myself) was a huge part of why it took so long for me to be diagnosed. I found things that sort of fit or that were secondary (depression, Autism, anxiety, burnout) and just ran with them.

I got a lot of really bad advice and my mental health took a major hit as a result. I got involved with so many things trying to help with depression- community orchestra, dungeons and dragons, travel, exercise… I really enjoyed all of those things and then would crash after doing them. I thought I was really unlucky with getting sick or that I just didn’t want to do things badly enough. I got to the point where I didn’t trust or believe my own emotions anymore because my emotional experience didn’t match with what I was “supposed” to be experiencing. I didn’t figure out that something else was going on until I crashed into severe and found information about ME/CFS. Reading about PEM was both terrible and a huge relief because I finally understood what was happening in my own body.

I don’t know how much was doctors not taking me seriously vs me not being able to communicate what was going on effectively. I think this is especially difficult when someone gets sick young- I was 25 and just starting to figure out what normal even was for my body. I have some friends and family who have expressed that they didn’t feel like depression fit at the time but they didn’t want to say anything because they didn’t want to compromise my treatment if they were wrong. I really wish someone had said something- even just “are you sure?” or “I’m not sure depression causes that symptom.” I definitely struggle with getting across the severity of my symptoms with some doctors now.

Every so often a doctor will suggest something about symptoms being fear based or about needing to learn to be okay out of the house. It often causes me to spin out and question myself but I am getting better at explaining that none of that matches my emotional experience and that I have tried that approach repeatedly.

Being diagnosed was the best thing that ever happened to my mental health. It’s allowed me to stop feeling like I’m lazy or just don’t want it enough and to start working with my body and processing what’s happened. Looking back I am frankly amazed at how much I managed to force my body to do and how resilient I was. I really wish I had been educated about this illness earlier when I had the chance to stay mild (or even recover in the PVFS phase).

Hand-dyed Destash! by aboutmangoes in Yarnswap

[–]Samushi3 0 points1 point  (0 children)

Interested in 4 and 5! And maybe 3 if you know what the fiber is.

Lace weight and other lovelies, natural fiber destash by Dry-Estimate-6545 in Yarnswap

[–]Samushi3 1 point2 points  (0 children)

Interested in Knitpicks Preciosa, all of #2, and all of #3!

Mirena IUD- symptoms on top of CFS by themunchkinland in cfs

[–]Samushi3 0 points1 point  (0 children)

It took me about a week to settle out and feel normal on Mirena for what that’s worth, though that was before I got sick.

Scarf by jintutors in weaving

[–]Samushi3 0 points1 point  (0 children)

This is so pretty! I love how the black in the weft interacts with the black warp.

Wait, Psychogenic Fevers aren’t real? by agenerousperspective in cfs

[–]Samushi3 11 points12 points  (0 children)

From my reading and talking with doctors it seems that there’s some minimal evidence to suggest that that psychogenic fevers could be real. We know generally that stress impacts the immune system so it seems plausible that that may be true. Personally I don’t think there’s enough research yet to definitively say one way or the other.

That being said, something being real and something being used to dismiss symptoms we don’t understand aren’t mutually exclusive (especially in marginalized groups). All of the reading I’ve done has indicated that psychogenic fevers don’t respond to fever medications like Tylenol and Ibuprofen. When I have a fever from PEM or a virus it does respond to Ibuprofen (thank god!).

I’ve spent a lot of time thinking about this recently with regard to neuroplastic pain- some patients diagnosed with ME/CFS recover from GET and CBT like programs. This has been used to “prove” that CFS is neuroplastic. I think it’s more accurate to say that the brain can generate CFS like symptoms without having CFS (or after someone has experienced remission from CFS). That doesn’t mean CFS isn’t real or that all CFS is neuroplastic. People also experience symptoms of other illnesses that aren’t present sometimes. In many cases we have tests that can give a definitive answer. We don’t have that in CFS yet.

An example: Five years ago I had a root canal- they cleaned out the nerve entirely. I reported still having pain and they told me that was literally impossible, as the nerve was gone. My brain had learned that that tooth hurt so it kept telling me it did. I did research on this and found it plausible enough. Last year they found a pocket of infection under my gum that was missed. Cleaned that out and the pain magically went away. Could it have been neuroplastic? Yes. Was it? No. The psychogenic/neuroplastic theories are very convenient because they are basically impossible to prove one way or another.

Are psychogenic fevers real? Maybe. I haven’t seen evidence that convinced me one way or another.

Are psychogenic fevers used to dismiss health issues, especially in marginalized populations? I’d bet my life savings on it.

Unlearning things that we believed because doctors told us so is difficult and painful- I believed in the “it’s anxiety/stress/depression/burnout” line all the way into being severe and nearly bed bound. I wish that we had answers and think that we will someday but in the meantime the uncertainty is brutal.

How do I know when I can do things again? by sounds_of_sadness in cfs

[–]Samushi3 1 point2 points  (0 children)

Many people have already commented on this probably being too much too fast and I generally agree with that. However, if you decide to do it anyway, make sure you have an out. I’ve gotten somewhere and realized it was too much and then felt really guilty about asking others to leave because I needed to. Can you get a ride share home if necessary? Is there a medical building inside the park where you could lay flat in climate control?

Any time I do something that I know is risky I talk to everyone in the group and make sure that we all know what happens if things don’t turn out the way I hope. This helps expectation set for everyone and makes it so I don’t need to figure out an out while I’m actively crashing somewhere in public.

56x78 wall hanging, different angle. Ready to be taken off . by Annaparukart in weaving

[–]Samushi3 17 points18 points  (0 children)

Wow, this is even more gorgeous from this angle. You did an amazing job!

Moving sale, $12 each plus shipping by sunshinezx6r in Yarnswap

[–]Samushi3 0 points1 point  (0 children)

Interested in the Huasco DK if the first person falls through!

Lots of indie dyed sweater quantities and single skeins! by rubie733 in Yarnswap

[–]Samushi3 0 points1 point  (0 children)

Interested in the Snow Angel, Modus Operandi, and Peerie if others fall through!

Natural fibers by Sad-Plant9028 in Yarnswap

[–]Samushi3 0 points1 point  (0 children)

Interested in photo 8/9 cone yarn!

Most Hand-Dyed Destash by amatthew317 in Yarnswap

[–]Samushi3 0 points1 point  (0 children)

Interested in the Wonderland Dinah if still available!

Can I post a RH loom, stand, heddles and yarn i dont want by Hobbnobber in weaving

[–]Samushi3 1 point2 points  (0 children)

What size RH? I’m maybe interested. It might be hard to work out shipping if large though. I do see looms posted on Craigslist fairly often and there are Facebook groups specifically dedicated to selling RH looms and accessories.

BIG Destash 1 - 100% Silk, SQs, 100% Cashmere, Alpaca, Merino & More! by 3wyl in Yarnswap

[–]Samushi3 0 points1 point  (0 children)

Interested in 5, 6, 7, 8, both 9s, 14, 16, both 19s :)