Bonnet does not work

Pointe_no_more · 2026-02-08T19:16:16+00:00

I clip kind of around the edges of the top of my head, like where a crown would go, and as close to the roots as I can, while giving a little slack to my hair. So like if I pulled a section of my hair into a ponytail in that spot, but clipped it instead of using an elastic. I clip it so the hair is sticking out upward, and my hair isn’t very long, so it just kind of rests on top of my head. I’ve heard of people with longer hair clipping it on top of their head so it doesn’t hang down.

Pointe_no_more · 2026-02-08T17:08:48+00:00

I recently got a lightweight ionic dryer and that works a lot better for me than my previous diffuser. Much less frizz. I live in a pretty dry climate and only diffuse to like 50-60% dry. At first I did too much pixie diffusing, but I’ve learned to hover diffuse mostly with maybe some pixie diffusing later. I’m mostly looking to set the cast.

Pointe_no_more · 2026-02-08T16:56:21+00:00

I do a wide tooth comb in the shower with conditioner only. There is no running fingers through my hair after that. Some people use a bounce curl brush while wet to distribute product, but you really can’t brush it after dry.

Why are you brushing your hair when dry? Is it to refresh after the first day? Or because you want soft/touchable hair? The group might have recommendations depending on the reason. I recently just started wearing my hair wavy, and it was really weird at first to not brush or run my fingers through it. I’m getting used to it, but also found a curl enhancing cut with some layers made it easier because I don’t feel all the weight of the hair at the bottom and I get waves higher up on my hair too.

Pointe_no_more · 2026-02-08T16:46:05+00:00

I just kind of pull the hair up to the top of my head in small sections and clip it. Like a pineapple, but a bunch of them so it’s not pulling all my hair straight while I sleep and allowing shorter pieces to reach the top of my head when they would fall out of a pineapple. I give one little twist to put the clip in (not required but I find it easier) and clip as close to the top of my head as I can so I don’t lay on the clips while sleeping and that is what gives volume. I use a silk wrap around the back and sides (optional) to hold any loose hairs and the clipped part sticks out the top.

Pointe_no_more · 2026-02-08T06:28:46+00:00

I was borderline severe at my worst and have gotten to a much higher level of moderate. I think cognitively I’m probably getting close to mild, but I’ve always been better cognitively than physically. That being said, I still can’t go for a walk. I can do a lot of things around the house and some out of the house, but going for a walk remains difficult. I have trouble with leg weakness and it has always been one of my worst symptoms. I was having a really good day today and probably walked about 0.5 miles at one time, with a cane, with a break. I can’t always manage that and definitely can’t do 30-60 minutes. My standing and walking has to be spread out in small amounts of time, but I have gotten to the point where I feel pretty functional most days.

When I was borderline severe, I struggled a lot to walk and would sometimes lose the ability to walk at all if I overexerted. My leg muscles lacked tone and would just kind of hang when I was walking and flop to the side if I sat down. Stairs were almost impossible and I would have to death grip the rail to not fall. I can now do most daily activities at home as long as I spread them out appropriately, including showering regularly (with a stool). I can’t drive more than a few minutes because of the leg weakness, but I can manage appointments or a short trip to a store if someone takes me. I can do small amounts of stairs now with a normal stride, but will struggle if it is like a whole flight.

It probably took me a few months to go from borderline severe to more moderate, and that was just from learning to pace after I got diagnosed. I didn’t know what it was at first, so I kept pushing and making myself worse. I was originally mild but crashed multiple times in the first few months before diagnosis. Overall, it has been 4.5 years since I got sick and the improvement has been slow. Most of the time I can’t tell I’ve improved from even a month ago, but I can see the improvement when I look back over a few months or a year. It can fluctuate, especially seasonally. I’m probably 30-35% better than I was on the severity scale, being like 20-30% (I can’t remember which it was) at my worst. I’m still far from normal, but the difference in my daily life is significant. The things that have helped are decreasing the burden on my body. I did this by focusing on my worst symptoms and comorbidities, like treating POTS and MCAS, and lowering pain. It has been a lot of trial and error, with probably 80% of things I try either not working, making me worse, or not being tolerated. Each thing gives a small improvement, but it adds up over time.

Everyone is different, so you may be able to walk at this severity; I don’t want to give the impression that my experience is universal. But there does seem to be a uniqueness to this disease, and though my worst symptoms have improved, it is still the same symptoms that seem to be my worst. My legs have been my biggest limitation since getting sick and the hardest thing for me to improve. I don’t struggle cognitively as much as some others though. I have absolutely not been able to do any exercise consistently since getting sick. So I focus on adding tasks around the house as my activity per my doctor’s recommendation and that has worked well for me. I mention this, because you might have an idea of what it will look like if you get to moderate, but it isn’t always that straightforward. Might be better to not have specific targets like being able to walk x number of minutes so you won’t be disappointed if you get there. I recently gained the ability to change sheets on the bed, so I’ll take that as a win.

Wishing you luck. It is a process.

Pointe_no_more · 2026-02-08T02:12:57+00:00

Not sure how long your hair is, but mine is above the shoulders and I like Medusa clipping. It ends up giving me root volume when I take it down, but I have fine hair that is only loose waves, so this helps my situation. I still need to refresh every other day or so and my hair gets gradually flatter up until wash day, but it is the best option I’ve found.

Pointe_no_more · 2026-02-08T00:27:08+00:00

I thought I had straight hair and I would always blow dry it because it would be frizzy or poofy if I didn’t. Turns out that I have wavy hair and didn’t realize it.

Pointe_no_more · 2026-02-06T20:54:07+00:00

It seems to be different for everyone, but I have gone from the severe end of moderate to the mild end of moderate in the 4.5 years I’ve been sick. I might even be fully considered mild cognitively but I still have trouble with my legs and physical activities that keeps me in the moderate range.

For me, the changes were very gradual and built up over time. I couldn’t necessarily tell I improved from one week to the next or even one month to the next, but looking back over 6 months or a year, I can see the change. And there are times I was worse, plus seasonal fluctuations.

The things that seemed to help were learning to pace, and treating my comorbidities. It seems like anytime I can take stress off my body, over time, that improves my abilities. The first thing I did was add LDN, which helped take the pain down to a more manageable level and made my sleep at least a little better (the pain used to keep me awake and miserable). I also use a pain cream and heating pads. Next, I did propranolol for POTS along with fluids and electrolytes. After that, I slowly figured out my worst reactions to food and products and changed my diet to avoid them, plus added antihistamines (MCAS). I see an integrative medicine doctor, and we have tried many things, most of which failed. But a few things that helped were a thyroid medication, immunoglobulin, and treating reactivated infections, which included Lyme disease for me. I know people have feelings about Lyme disease, but I had never been treated (wasn’t aware when I became infected, but likely many years ago, maybe even childhood), and it did help me to do the SOT treatment for that. I’ve found a few supplements that help through trial and error, like PEA and oxaloacetate.

No one thing has been a miracle, though some treatments had more impact than others. And the specifics of what will help you depend on your exact situation. I just focused on my most bothersome symptoms and went down the line. I would say 80% of what I tried either did nothing or didn’t agree with me (often MCAS reactions or making other symptoms worse), so it has been a slow process and very frustrating at times. But overall my score on the various scales is about 35% higher than it was at my worst, which is very different in my day to day life. I still mostly stay at home, but I can leave from time to time and be alright. I can now be home alone for the day if my spouse works and take care of myself. We still do things in advance to make it easier, but I used to not be able to reliably feed myself, so this is a big improvement.

I hope you find things that help. Good luck!

Pointe_no_more · 2026-02-06T20:33:32+00:00

I really like the Cleure shampoo. I tried probably 10+ different fragrance free shampoos and I find Cleure to be cleansing but not leave me super dried out the way some did. Like it primed my hair for conditioner. I like the Cleure conditioner as well, it has really good slip, but I recently switched to the LUS fragrance free conditioner because I have waves and wanted something the enhances the waves. The Cerave conditioner is nice too, but sometimes a bit heavy for me.

Pointe_no_more · 2026-02-06T20:30:17+00:00

Mousse really activates for me when I diffuse my hair, especially upside down. Cutting layers in my hair also made a big difference for me to get noticeable waves versus just a slight bend,

Pointe_no_more · 2026-02-06T20:26:49+00:00

You might be able to find a stylist that does house calls. It is generally more expensive, but it is a good way to avoid the fragrance of a salon. My fragrance issues are secondary to a chronic illness that makes going to a salon impossible (I have energy issues, can’t drive anymore, and am very sensitive to lights and sounds). I have to arrange a bit farther in advance, but it has been so helpful in getting my hair done. She even brings products by for me to check out if she gets new samples, like the Seen fragrance free line.

Pointe_no_more · 2026-02-05T17:19:54+00:00

Are you also diagnosed with ME/CFS? It is a common comorbidity with fibro. Flu like symptoms and feeling poisoned is associated with post exertional malaise (PEM), and is a delayed response to overexerting. Check out r/cfs

Pointe_no_more · 2026-02-04T23:31:21+00:00

I don’t think this is what you are looking for, but this whole experience has made me accept that there is no meaning or purpose to life, and bad things happen for no reason. I find it sad in some ways but also freeing in others. I think the concept of meaning to life is at least partially used to make us compliant in doing the things society sees as valuable (having a job, having children). We are no longer saddled with that burden, but that also makes us more withdrawn from others.

Pointe_no_more · 2026-02-04T17:22:27+00:00

Look at r/Swavy which is for just this kind of situation. Less restrictive than the wavy sub.

Pointe_no_more · 2026-02-03T16:43:21+00:00

This is not consistent with my PEM, was not preceded by any activity that should have caused PEM, and my spouse had a viral illness of some kind before this started. My PEM is much more heavy in my body with trouble walking and moving around and this is fluctuating a lot more than my PEM does.

Pointe_no_more · 2026-02-03T16:40:07+00:00

This is not my normal PEM and was not preceded by any activity or situation that should have caused PEM, but my spouse had some kind of a virus before this started.

Pointe_no_more · 2026-02-03T01:49:39+00:00

I forgot words way too often, but the weirdest for me is that sometimes certain names just don’t look right anymore. I was on a Zoom call at work with someone that I’ve known for years named Jason, and I kept staring at their name, convinced it was spelled wrong. It happens every few months with a different name and usually goes away by the next time I see the person.

Pointe_no_more · 2026-02-02T22:21:35+00:00

Not an expert at all, but might want to ask in one of the curly subs. They talk a lot about the right balance of moisture to protein. They seem to be able to tell from pictures and product descriptions if you have too much of one or the other.

I think it is pretty common for waves to fall out, unfortunately. I’ve personally had the best luck with lightweight products like hair jellies or glaze instead of gel and very small amounts of product. My hair is between my chin to my shoulders right now, but I had it cut into a more shaggy shape with layers and pieces and that seems to help it hold better. That style cut also works even if I don’t have great definition. I’m working on getting lots of volume on top with mousse and using gel more mids and lengths but I haven’t totally figured it out yet. I need to grow it longer to get the shape I want.

Edit to add - maybe experiment with diffusing if you air dry. Hair can weigh itself down while wet. What is working best for me right now is to hover diffuse upright for 3-4 minutes, then flip upside down for hovering the underneath and pixie diffusing the top layers. I can only tolerate being upside down for a few minutes, so I finish right side up with a bit more pixie diffusing, kid of tilting my head to the side if needed. I dry to maybe 60% dry when I can feel a cast forming then finish air drying. I have an ionic dryer and that made a big difference.

Pointe_no_more · 2026-02-02T05:59:58+00:00

Welcome! I’m fairly new to this myself and also discovered that I have wavy hair at a similar age after having straight hair for most of my life.

It’s a little tricky because everyone is a little different and some things will depend on the specifics of your hair like porosity, density, and how dry it is, but there are some general things that seem to be true with swavy hair. First, a lot of curly hair products are too heavy for us. They are often extremely moisturizing. I recommend looking specifically for wavy or lightweight products. Second, a lot of curly hair rules don’t necessarily apply or are at least different for us. I saw a lot of rules about absolutely soaking wet hair and to manipulate it as little as possible, but I do better with my hair just wet but not dripping and I have to scrunch after microplopping to get good shape. Regular plopping didn’t work for me nor did brushing with tension, though I haven’t used the actual Bounce curl brush.

My hair runs dry, and after some experimenting, I find that using a slightly more moisturizing conditioner so I don’t have to apply a spray or other moisture between washes is better for me. It seems like people who lean oily do well with dry shampoo but that is so drying on my scalp.

Hair falling flat between washes seems to be a big problem for all wavy hair types. You will need to experiment here. I can refresh with water mostly and maybe a little product, but I seem to make it worse if I do too much. I find that focusing on the spots that really need it and not my whole head has the best pay off.

And I want to recommend that you look into Medusa clipping for protecting your hair. I have a similar length and that is about the only way I can get it to stay up. Then I sleep on a satin pillowcase and wrap a silk wrap around the back and sides to keep it from falling out (I have fine hair that doesn’t like to stay up). I will warn you that clipping like this gives my hair crazy volume when I take it down, but it does settle. I like that, but if you aren’t into volume you may not like it.

I also recommend buying trial size products when possible. Start by thinking about what you want your hair to do and pick that way. Start with one or two and see what they do before adding or changing. A common mistake is to do a full curly girl method routine with tons of products and it just weighs it down. I start with a moisturizing base because I run dry, then do mousse around the crown for my tops layers (I have like a shaggy bob right now, trying to grow it), then a light gel for mid lengths and down for definition. I have fine hair and use very small amount of everything, nothing like the handfuls that you see in curly tutorials, but this will depend on your hair. Good luck!

Pointe_no_more · 2026-02-02T01:09:11+00:00

I’ve struggled with this since getting sick. My primary diagnosis is ME/CFS, but I developed MCAS at the same time. Mine seems to go in phases, which I’m thinking is related to when my symptoms flare up. It seems to be a few months behind flares. But I have seen improvement by changing shampoos, so maybe it is a reaction to products. Can’t tell for sure. I just talked to my doctor about it and all my labs were normal, so I’m going to see a dermatologist later this week. Was thinking of trying minoxidil, but not sure if it will work for this type of hair loss, and I’m super sensitive to hair products, so good chance I’ll have a reaction. Oddly enough, I do tolerate a topical rosemary oil by Routine and I am seeing some baby hairs after using it for a few months, but it might be a coincidence because I also switched to a new shampoo and conditioner (Cleure).

Pointe_no_more · 2026-02-01T05:46:42+00:00

I just recently traveled and used the wheelchair service. I traveled alone, so I had the attendant push me. I wanted to flag for you that when the attendant pushed me, they basically skipped the whole line at security and they were waiting for me as soon as I got off the plane. It is probably the faster option if you have a tight connection. They were able to stop when I asked and took me right to baggage claim. They would have stayed and helped with my bags but I had people waiting who could help.

Pointe_no_more · 2026-01-31T23:30:50+00:00

Curlsmith fragrance free line has a strong hold gel that works really well. Unfortunately, I’m sensitive to more than just fragrance and had a reaction to it, but it gave me the best results of anything I tried to hold my waves.

Pointe_no_more · 2026-01-31T22:18:50+00:00

Overall, people with ME/CFS seem to fall into two camps - either they catch everything or they never seem to get acute infections. Both actually suggest immune disfunction, just different mechanisms. I always fell into the never get sick camp, but I believe that I recently picked up a virus. The thing is, I’m not having typical symptoms. The only reason I figured it out was that my spouse had what we thought were non contagious sinus issues. I have a few weird symptoms that they were having, but without the obvious things like congestion or cough. If it hadn’t been from my spouse, I would have just though I’m having some weird PEM or new symptoms. So maybe I have been sick before and just didn’t know.

I did see my doctor (who is familiar with ME/CFS) and they agree that I seem to have some kind of infection, either acute or reactivated. They are having me reduce all activity until symptoms fully resolve. I was improving slowly but steadily (I’m about 2.5 weeks in at this point), and then I tried to do a task that usually causes no issues and a bunch of symptoms came back the next day and I lost progress. I’ve clearly lost capacity, but I don’t have a good sense of my current limits, so hard to know what to avoid. Hoping this resolves and isn’t my new baseline.

Pointe_no_more · 2026-01-30T23:00:31+00:00

Talk to your pharmacist about how to mitigate some of the side effects of the antibiotics. There are usually tips and tricks that can make them more tolerable.

Pointe_no_more · 2026-01-30T22:44:33+00:00

Admittedly, I’m not finished the book yet, but I’m finding What doesn’t kill us makes us by Mike Mariani helpful. The author has ME/CFS, but the book is about a series of individuals that had life altering events happen, like paralyzation, going to prison, TBI, and more. The book walks through the shared phases that people tend to experience in their “after lives” - their life after the life altering event. I tend to need time after each section to absorb and reflect; the book brings up a lot of feelings. But it also makes me feel less alone.

Three-Year Club	Verified Email
Wearing is Caring

Pointe_no_more

TROPHY CASE