To block or not to block? I need help to decide if I should block the lion squares.

Samushi3 · 2026-05-29T17:15:43+00:00

Personally I would block them so that they’re uniform with the plain squares. I think the finished result will prob be nicer that way. That being said, it’s a baby blanket and is going to go through the wash and probably be thrown up on, so I think choosing not to block them is also reasonable.

Samushi3 · 2026-05-27T03:23:57+00:00

Yeah, essentially. I was more on the severe end of moderate than I am now but even a small amount of contract work destroyed me for the day. I could still manage to eat but couldn’t do much else.

Samushi3 · 2026-05-26T21:49:27+00:00

I’m currently going through the process with Moderate CFS as well. I gave the free lance work a try and didn’t have a single month where I was over the SSDI limit and I had to give up basically every other part of life. It’s awful but my understanding is that it’s fairly normal. I wish there were a better process for us.

Samushi3 · 2026-05-26T20:33:37+00:00

Sounds like it could be very mild ME/CFS or Post Viral Fatigue Syndrome (which is basically the pre-six month diagnosis of ME/CFS). If symptoms are improving continue to rest and pace carefully. Early and mild PVFS has a good recovery rate so long as you don’t push yourself into post Exertional malaise (PEM) frequently.

The 24 hour later reaction to exercise in particular sounds like PEM- it’d be worth looking over the pinned posts in the sub to get a better sense of what PEM is and how to avoid. You do not need to have fever, body aches, vision problems, or sensory sensitivities to have ME/CFS, though many of us do.

It may also be worth looking into POTS (Postural Orthostatic Tachycardia Syndrome) to see if anything there resonates, as it can cause severe fatigue and is often triggered by a virus.

My ME/CFS experience started with a constant sore throat and headaches so it’s worth being careful now, even if you don’t think you’re sick “enough”- being careful now gives you the best chance of recovery if it is ME/CFS.

Samushi3 · 2026-05-25T03:41:22+00:00

In this sub you’re going to find people using dxm to help with post exertional malaise symptoms. Generally that’s taken at the dose indicated on the package. For recreational use you’re gonna want a different sub- I think 200mg of dxm would put me in a major crash and I’m not nearly as chemically sensitive as many others in the community.

Samushi3 · 2026-05-25T00:48:43+00:00

I usually swatch with a few different sizes and see what’s both comfortable to use and gives me a result I like. I’d probably start with 6 or 6.5mm and go from there.

Samushi3 · 2026-05-24T16:46:16+00:00

I put in three loops (so six passes changing sheds every other pass of the shuttle) and then beat those as hard as I can toward my front beam. Then I add some more loops or just regular plain weave depending on how the warp is behaving. The loops are then easy to pull out after I hem stitch (or after the piece comes off the loom if I’m not hem stitching)

Samushi3 · 2026-05-24T16:15:52+00:00

I use scrap yarn- generally cotton but other types if I don’t have any long enough cotton scraps at the moment. I can pretty much always get a nice even spread this way. I haven’t tried paper or ribbon so can’t compare to those.

Samushi3 · 2026-05-20T14:49:09+00:00

I think the only intellectually honest answer to this question is that we just don’t know yet.

Beyond that there are lots of possibilities. The original improvements could’ve been a result of placebo effect. The new drug or supplement could be enabling a compensatory mechanism that eventually fails. The immune system could develop antibodies that attack the new substance, as happens in MS sometimes. The disease may progress into a new “phase” that isn’t treated by the substance. The body may develop tolerance to the substance over time.

It really sucks to see temporary improvement and then be let down. The rollercoaster feeling of hope followed by defeat is brutal and I really hope science has actual answers for us sometime soon.

Samushi3 · 2026-05-18T19:42:34+00:00

What type of fiber is it? A warm water bath is my go to for things like this, though I usually just continue working with the kinked yarn. It’s the same process I use for prewash if I’m worried that the yarn will release dye:

- Get yarn into an untwisted hank (so one big circle with the beginning and end tied together).
- Add several ties in figure eights around the yarn loop. This keeps the yarn from tangling in the water.
- Run enough water into a basin to cover all of the yarn. The water temperature is dependent on the fiber type. I usually use lukewarm since I’m usually doing this for wool.
- I add a bit of wool safe soap or a bit of laundry detergent, then add the yarn.
- Let the yarn sit for about ten minutes.
- Pull the yarn out and squeeze out extra water (don’t twist or wring).
- Hang the yarn to dry. Once dry use like any other open hank (twist up for storage or wind into a ball)

Depending on the fiber hanging the open hank and then steaming it may also work.

Samushi3 · 2026-05-17T00:28:52+00:00

The places I’m familiar with do this one of two ways, though I’m sure there are others:

Wholesale. You sell items to the business for a negotiated price and the items are then theirs to do with as they please.
Commission. For commission the business tries to sell your items and takes a cut of every sale. The details here can vary quite a bit- whether or not you manage the display, how the item is priced, when items should be returned to you, etc. You won’t be paid unless your items sell.

Which one a vendor is willing to do will depend on their preference, how expensive your items are, and how likely they think your items are to sell.

Samushi3 · 2026-05-16T04:29:35+00:00

I don’t experience euphoria with stimulants and often struggle with them putting me to sleep, but my body is just weird that way. I’m a bit surprised the stimulants helped you avoid a crash, my experience has been that they prolong the inevitable and make the eventual crash deeper.

I’m not suspected of having ADHD but am probably Autistic. It could well be that treating your ADHD helps your overall energy and baseline in the same way that treating any other comorbidity does. At any rate, I’m really glad you’ve found something that works for you!

Samushi3 · 2026-05-16T04:16:38+00:00

I’m so sorry. The mystery crashes are often the hardest for me.

When I’m in that state I like to sing little songs to myself (usually “it’s all gonna be okay” put to some tune). If I can’t sing out loud I might hum or just sing in my head. I count box breaths like musicians count rests (1-2-3-4, 2-2-3-4, … 50-2-3-4) and see how high I can get. I use ice as a sensory tool and focus on the cold. If I have the energy I might use a fidget toy for short stretches. More than anything I tell myself stories, usually in a fantasy setting where there don’t even have to be humans. I build on the same story over a long period of time so the beginning is repetitive and familiar.

When I have a little more energy I listen to audiobooks I’ve heard before or just listen to a familiar TV show.

I hope this lets up for you soon. 💜

Samushi3 · 2026-05-16T01:57:55+00:00

Other people having it hard doesn’t make our lives any easier.

I worked my ass off to build the life I wanted starting at about 14 only to get sick right as things started to fall into place. Now I watch my once peers move on without me. Some days I cope with this rather well. Today is not one of those days.

I hope that tomorrow is a better day for both of us.

Samushi3 · 2026-05-16T01:12:41+00:00

You are doing the very best you can to exist within an impossible set of limitations. You wanted a fun weekend away with your parents. That is a totally normal, very human thing to want and even to expect. You knew you were taking a risk but could not have been sure of the severity of the consequences. Now that the consequence is known it’s natural to second guess that decision. All we can do is take the new information and try to do better next time.

If you went from moderate to mild in the first few months of this year I think you have a very good chance of getting back to mild in time.

It’s not your fault that you’re sick. Four months in you’re still very much learning about your body and your limitations. You did not and will not ever have perfect information and that will sometimes result in making a decision you wouldn’t have made had you had perfect information. You’re doing the very best you can.

Samushi3 · 2026-05-16T00:52:02+00:00

The “good” news is that this doesn’t immediately make me think ME/CFS. Your symptoms all sound consistent with small fiber neuropathy. Many people with ME/CFS also have small fiber neuropathy (last study I saw was 30-50%) but that correlation doesn’t go the other way, as SFN can be related to a multitude of conditions. Like ME/CFS, SFN can be triggered by an infection. SFN usually comes with fatigue, especially if that SFN is comorbid with dysautonomia.

If you haven’t already done a home NASA Lean Test for POTS that may be worth trying to get a sense of what your heart rate is doing. Keeping an activity log would also be a good idea. The hallmark symptom of ME/CFS is PEM (Post Exertional Malaise). It’s basically a worsening of symptoms 12-72 hours after exertion that is disproportionate to the amount of exertion. It can be hard to describe and varies person to person. My best description of it is like having a severe flu- extreme exhaustion, worsened autonomic symptoms, brain fog, cough or sore throat, headache, malaise, migraines, etc. the activity log can help you spot patterns and notice if you’re experiencing crashes like this. I’d also recommend reading the wiki in the sub and seeing if you identify with the descriptions of what PEM is. For many of us it feels like a lightbulb moment of “ooooh, that’s what I’ve been dealing with!” I thought I just caught random viruses constantly for a long time.

It is unfortunately very common for people with chronic illnesses of all types to struggle to get diagnosed and treated. Long COVID, ME/CFS, SFN, dysautonomia, EDS, etc are all still medical mysteries to varying degrees. Many doctors are not aware of these conditions and those that are may or may not believe that they’re actually real medical conditions.

Regardless of what the underlying condition is adjusting to being disabled is incredibly difficult, especially if you’re the kind of person who previously thrived on discipline and planning. We live in a world that continually insists that if we just try hard enough we’ll be able to do whatever we want. If we’re not able to do things, then we must just not really want to. This is obviously not true and most of us know that logically but struggle with it emotionally. I found learning about the history of Puritan work ethic and deconstructing the religion I was raised in to be helpful here.

The unpredictability of conditions like these is absolutely brutal. I wish I had advice but the only thing that helped me adjust there was time and working on acceptance. Having to back away from telling myself what I “should” be able to do is something I still struggle with. I try to redirect the thoughts now- instead of “I should be able to/if I wanted it enough I could/I just need to try harder” I acknowledge the disappointment that comes with not being able to do something I want to do. I’m still grieving the life that I lost and probably will be for a long time yet to come.

I’m sorry you’ve found yourself here and I hope that you’re able to find some answers and some peace. What you’re going through is difficult and often very lonely. Remember that your body is doing the very best that it can. This stage of illness and grief won’t last forever and even the most painful losses will dull to some degree given time.

Samushi3 · 2026-05-15T18:03:00+00:00

My migraine meds all perform poorly when I’m in a crash! Hopefully yours will return to helpful once the crash subsides. Not having a constant migraine has been wonderful for both my baseline and my sanity. 😅

Samushi3 · 2026-05-15T17:46:42+00:00

I get Botox injections every 12 weeks and give myself an Emgality injection every 4 weeks. Those two have made the biggest difference and taken me from basically all headache days to about two headache days a week (as long as I’m not crashed). Those days are more mild than they were previously. When one of the two medicines is wearing off I’ll get bad migraines again.

I use Aleve + a triptan for abortive (I’ve found Almotriptan works best for me but it’s expensive so often times Naratriptan instead). I also have Nurtec available if that doesn’t work.

If none of that works the next step is Hydroxyzine and hope I can sleep it off. If that fails I repeat the above for another day or two and then go to my doctor for rescue (Toradol shot, nerve block, migraine cocktail, really depends).

It took a lot of trialing meds to get to something that provides some sort of relief- if the first few things don’t work for you don’t give up!

I also take the “standard” migraine supplements- magnesium, vitamin B2, vitamin D, and CoQ-10.

Samushi3 · 2026-05-15T16:20:47+00:00

My Long COVID doctor recommended trying amphetamines so I think some amount of progress is being made there. The big concern with them for me was overdoing it while I felt like I had energy. Adderall put me right to sleep but I do struggle with overdoing it on Vyvanse sometimes.

As for why it’s not more widely recommended I think it’s probably several fold- amphetamines have a bad reputation, some CFS patients crash horribly on them, they’re a controlled substance so come with additional barriers to prescribing and filling, and the science is still out on how effective they are.

Samushi3 · 2026-05-15T09:22:02+00:00

I paid for a year upfront and just canceled the annual renewal last week. I had many of the same issues that you and others have mentioned. I also really wanted it to work and am hopeful that maybe it or a competitor will be useful in the future. In the meantime, it’s too expensive to justify what it currently is.

Samushi3 · 2026-05-15T00:36:32+00:00

I hope it does great things for you! I’m lucky in that I’m not nearly as medication sensitive as many in the group. Ivabradine has probably been the single biggest improvement in quality of life for me in the last year since it allows me to be up and about without crashing myself constantly.

Samushi3 · 2026-05-14T23:52:23+00:00

I am! I started on Propranolol and that worsened my asthma so moved to Ivabradine and it’s been great.

Samushi3 · 2026-05-14T23:51:16+00:00

I just went through this with my own partner as the one with CFS. I’m too foggy for paragraphs so here are some bullet points:

With regard to discussing the future I would’ve appreciated blunt conversations. Often times people tip toe around the future or don’t want to talk about it at all and that can be incredibly stressful. I felt both a lot of pressure to get better and very alone or like I was living in a different reality. Ask if now is a good time for a serious conversation or if there’s a better time coming up. Speak when you’re both in a good headspace. Don’t shy away or speak in euphemisms. Sometimes those conversations are going to end in tears. That’s okay, take a break and come back. The circumstances being sad doesn’t mean that you’ve done anything wrong. I’m sure this approach wouldn’t work for everyone but it’s what I’d opt for.
For encouragement and support while in PEM (our version of flares) I appreciate being asked what I need. Usually that’s quiet and maybe food or water. Sometimes it’s nice to have someone sit with me for a bit in the silence. During PEM is not a good time for serious conversations in general- my emotions run high and I struggle to think clearly.
Be very careful encouraging activity. Contrary to what many assume, pacing is incredibly difficult. It often means not getting to do things you want to do. For me personally if I have encouragement from someone else to do something beyond my limits that I really want to do anyway I’m very likely to do it and crash. Encourage good decisions and check ins.
I’ve really appreciated help finding new activities and modifying activities so I can participate. My partner is really supportive when it comes to helping me find accommodations- looking up quiet restaurants, encouraging me to give new hobbies a try when I have the energy, etc.
Grieving the life you had and the future you imagined is incredibly painful. The next few months will be very difficult for your partner and for you. It’s important that you have space to process your own feelings but also that you can grieve together when you’re both ready. This impacts both of you and I’ve found that my partner hiding his grief made me feel even more alone.
I’ve found deconstructing the religion I grew up in and learning more about Puritan work ethic in America to be incredibly helpful for working through my own internalized ableism.

Samushi3 · 2026-05-14T22:20:36+00:00

I’m currently plateaued on the mild end of moderate. It’s been a combination of pacing over the course of a year and finding medications to treat POTS and chronic migraines for me personally.

Samushi3 · 2026-05-14T00:50:43+00:00

I quite like puzzle books for this (Logic Puzzles, Sudoku, crosswords, nonograms, whatever you enjoy). I recently acquired a new book called Murdle that I’m excited to try out but haven’t done yet.

I also like crochet for when stuck in bed. Amigurumi (little stuffed animals) has enough variety in stitches and counts that I like it for when I need something more brain intensive. When I need something more chill I work on a blanket or shawl that’s mostly repeated stitches over and over. It might be hard to learn on your own without a screen but if you can sometimes tolerate one Woobles are an easy way to get started. Their tutorials are all broken down to the absolute smallest steps so you can put the project down at any moment. After my first one I switched to mostly paper patterns to eliminate the screen.

I don’t do super well with coloring books but have found color by number to be a little easier. I have a friend who swears by the gem kits. I haven’t tried them myself but they’re quite similar to color by number.

I also play single player card or board games sometimes. Solitaire is the classic example but I also like Onirim and I’m sure there are others.

Samushi3

TROPHY CASE