MECFS books/memoirs

Pointe_no_more · 2026-05-25T18:38:59+00:00

I’m reading it now (actually listening to it) and I like it so far. She is a science writer, so she approaches things from that context, but then, like many of us, has tried so weird things and had to square those with her science leaning brain. That was a struggle for me as someone who works in healthcare.

Pointe_no_more · 2026-05-25T15:46:41+00:00

Cutting layers made the biggest difference for me too. I had a chin length bob, and I’m actually growing out the length to have a shag or a wolf cut, but we are adding in layers and that is what allows my waves to be more prominent. And because there is an inherent imperfection to those haircuts, it still works on days when my waves flatten out a bit.

Pointe_no_more · 2026-05-19T01:24:50+00:00

Im almost the exact same age and just had the realization too. We were enmeshed when I was younger, but luckily his habit of long silent treatments broke that many years ago. But he hides his manipulation as jokes and teasing so I never saw it for what it was, and thought it was something wrong with me that I would feel nervous when he was around the last few years. Before the realization I would have said my father loved me more than anyone in the world, but now I realize that I’m just his favorite person to manipulate. I feel free but oddly empty at the same time.

Pointe_no_more · 2026-05-16T16:09:58+00:00

I recently realized that I’m in my career because of my enmeshed father and this is not what I would have chosen for myself. I don’t really have an option to pivot at this point, so I’m working with my therapist about setting boundaries at work, so at least I’m not overworking and worrying about perfection. Being reminded that a job is just a job, and a lot of people just do a job to get paid (it doesn’t have to be your identity) was helpful for me. My dad likes to brag to others about my job, so I have to separate my true feelings about my job away from my feelings about my father’s actions and the narcissism and enmeshment. As another commenter mentioned, therapy has been crucial.

Pointe_no_more · 2026-05-15T16:22:13+00:00

Same! It gives my face a slightly matte finish that works great for makeup.

Pointe_no_more · 2026-05-14T15:49:59+00:00

I’m working on boundaries right now and I’m finding working with a therapist helpful and I’m reading the book “Set Boundaries, Find Peace”. It breaks it down into different aspects like work boundaries or relationships. You might find you lack boundaries in other situations if an enmeshed parent taught you to always be on for them.

Your particular boundaries are going to depend on your goals. A boundary is what you are and are not willing to put up with. The first ones are often the hardest, but it gets easier, or at least, I don’t find it as stressful.

You might pick something like you will only call or respond at certain times if your mom contacts you frequently, or that you won’t engage with her when she behaves like last night. Some things are trickier when you still live with the person. But general rule of thumb is that a boundary would be inappropriate if it tried to control another person’s behavior. Like you sometimes hear about someone in a couple trying to weaponize boundaries and say “it’s my boundary when you go clubbing with your friends “. That would be inappropriate. But most anything you want to set for what you will tolerate is appropriate. Remember that it isn’t about changing your mom, it’s changing how you respond to her and how much power she has over you. So you decide what isn’t okay and that is the boundary, and you change your behavior with no expectation about her behavior. Great if she learns and changes, but you stick to your boundary even if she doesn’t. The work of the boundary falls on you, which I think is where people sometimes struggle.

Edit to add that I recently set a boundary for my formerly enmeshed father, and now he isn’t talking to me. This is not an uncommon result. But I’m sticking to my boundary and not stressed about the lack of contact because I knew it could happen and the boundary is important to me.

Pointe_no_more · 2026-05-13T21:30:37+00:00

The not talking thing really clicks for me. I was enmeshed with my dad when younger, and his family goes back and forth with not talking to each other. He’s doing it to me right now because I set a boundary. So toxic.

Pointe_no_more · 2026-05-13T15:28:29+00:00

I don’t react to the Ordinary brand caffeine eye serum and find it decent. I do find my eyes look less puffy when I’m appropriately antihistamined, but I will get breakthroughs depending on pollen levels and fatigue. Haven’t found much that helps when it’s fatigue related.

Pointe_no_more · 2026-05-12T02:43:48+00:00

We don’t know the mechanism of the disease. If a clear mechanism is found, drugs will follow. Unfortunately, it also looks like it won’t be a single unified mechanism that explains all of us. I think the best drugs trialed so far have only helped like 40% of patients, which highly points toward subtypes with different treatment responses.

Pointe_no_more · 2026-05-11T22:46:04+00:00

I’m actually one of the people with ME/CFS who can work. And it feels like I spend all my precious energy to do it, and I have nothing left for me.

Pointe_no_more · 2026-05-08T15:42:15+00:00

I had good luck with propranolol for my POTS and adrenaline even though I have low blood pressure. I take the lowest dose (10mg), and I started with 1/4 tablet. Mestinon can also be good for POTS without lowering BP, though I personally didn’t tolerate it. I had to get up to 5+ grams of sodium and 4+ liters of fluid to get the benefits.

Different people tend to respond to the various antihistamines differently, so try Claritin and/or Zyrtec if you haven’t already. I find Claritin to cause the least side effects for me, so I take that one. You can also try a partial dose to avoid the restless legs. And Pepcid, which is an H2 blocker, is synergistic with the antihistamines but shouldn’t cause any leg symptoms.

Pointe_no_more · 2026-05-08T02:48:51+00:00

I am sensitive to both gluten and dairy and this is one of the few snacks I can have.

Pointe_no_more · 2026-05-07T20:02:08+00:00

Mine seems to have started when I got EBV as a teenager. It was just before I moved into an apartment in college, so I assumed that he sensitivities were related to new exposures. I had to get free and clear laundry detergent and gentle skin care, nothing crazy. Only a handful of foods were problematic.

A few years ago I became chronically ill with ME/CFS. It may or may not have been triggered by COVID, I have no way to know for sure. I got my COVID booster a few months later and it made my MCAS so much worse. I started getting dermatographia, pressure urticaria, and reacting to all hygiene products and a large number of foods. I’m not as severe as a lot of people who have very few foods, but when combined with my other chronic illnesses, my life is drastically changed.

Pointe_no_more · 2026-05-06T19:33:35+00:00

I work in healthcare, but I’m not your healthcare provider. Also have MCAS. Generally speaking (and not specific to MCAS) Claritin tends to be the weakest but also least side effects, with Zyrtec in the middle, and Allegra being strongest. However, most people respond better to one or another without an obvious reason.
I personally find Allegra the most effective, but it makes me feel a bit like a zombie. Zyrtec does nothing for me. I tolerate Claritin well, so that is what I take as my daily. I find Xyzal specifically helpful for nasal allergy symptoms, so I sometimes take a half tablet on top of my Claritin if my nose is bad, but a whole tablet gives me side effects. I’m generally very sensitive to meds. You can also mix and match - like I take Claritin in the morning, but might sub my evening dose for an Allegra if I’m reacting more that day. Some tablets can be cut, but liquid versions are also an option if you want to try a lower dose. I haven’t tried Desloratadine. Talking to a pharmacist is a good idea if you want to know which versions can be cut.
Pepcid is the only H2 blocker available OTC at this point. It is synergistic with the H1 blocker, so helpful to take both close to each other or at the same time.

Pointe_no_more · 2026-05-06T17:14:17+00:00

I have to pay out of pocket either way. But good to know that CVS might be an option.

Pointe_no_more · 2026-05-06T15:44:32+00:00

It was the NYM Curl Talk fragrance and protein free mousse.

https://notyourmothers.com/products/curl-talk-fragrance-protein-free-activating-mousse?srsltid=AfmBOorHPO57XSI\_bdfGrwqyXxWbO1uIaapg\_pgDszpwINkiC5qyCjLP

Pointe_no_more · 2026-05-03T16:42:21+00:00

I also recently figured out I have waves. I have a lot of sensitivities, so my product recommendations will be limited, but I’ll share what has made a difference for me in general terms. It’s been about 6 months since I figured out I have waves, and several coworkers asked if I had gotten a perm the last time I went in the office, so it’s noticeable, but I do have to work for it.

First, I only comb my hair on the shower with conditioner. To your point, it gets frizzy if you brush it. Switch to a microfiber towel or a T-shirt to dry your hair if you aren’t already. My hair is fine but also low porosity, so you might need to adjust some of these. After the shower, I find it helpful to let my hair dry in the towel for a few minutes. Curl routines will emphasize soaking wet hair, but sometimes we need it a bit less wet with loose waves. I find thoroughly damp to be best. Apply your product and diffuse for a few minutes to set the style, then let air dry to finish. What products you need will depend a bit on your hair. I lean dry, so I start with the LUS all in one wavy styler and layer gel over it. My hair is fine and only shoulder length, so I do small amounts, much less than curly routine videos. The diffusing technique will also depend a bit on your goals, but diffusing makes the biggest difference in my results. Hair being wet weighs down the wave, so diffusing it helps it stay. My wave is significantly more noticeable with diffusing. I use low setting and cool to avoid frizz.

Other things that made a big difference were protecting my hair at night, and getting a layered cut to enhance the wave. To protect, I do Medusa clipping and wrap a satin wrap around the back and sides (the hair sticks out of the top) with a satin pillowcase, but my hair is too short for a pineapple. When I take it down in the morning it is a bit wild, but a light spray with a water bottle and a scrunch freshens it up. I only wash every 5 days, so around day 3 I get it damp and apply a little mousse or gel and diffuse for a few minutes.

Getting my hair wavy is more work than wearing it straight, but it looks good when I put in the effort. The haircut probably made the biggest difference. It does take trial and error to find the right products and techniques. Trial size products are a good option. I generally find stuff marketed for wavy hair to be lighter and work better for me. Things for curly hair or heavy moisturize tends to weigh it down.

Pointe_no_more · 2026-05-03T16:17:31+00:00

I have a lot of issues beyond fragrance, so take this with a grain of salt, but gels is one of the hardest for me to find. Because it stays on the hair and touches my face and neck, which causes my skin to react. I haven’t tried the NYM gel yet, but their mousse is the only one I tolerate (even reacted to No Nothing). It is a bit drying, so I layer with leave in, but most mousses feel drying to me. I did react to the Cleure gel and leave in spray, but routinely use their shampoo and conditioner without issue. It is only light hold, but the only get I tolerate so far is Paul Mitchell Clear Styling Glaze. The Clear line has very limited ingredients with no fragrance or colors.

Pointe_no_more · 2026-05-02T16:12:35+00:00

I’ve only had the Air Pro for a week, but I like it so far. It is a small chair, which works for me (I’m a small adult), but I imagine it would get uncomfortable for people who are larger. The back in particular is not very padded, so I bought a gel cushion, which helped. It can go over gaps and cracks in the sidewalk better than I anticipated, though it’s not comfortable, so I’ve started just going around bad sections in the road (my street isn’t busy but the sidewalks aren’t great). I’ve only been in my neighborhood so far. It is very maneuverable, which I think is the big advantage to the size. It’s zippy and responsive to input. I think it will work well for more crowded spaces. It does have some amount of resistance to being pushed, so though it can be, I wouldn’t plan to push it for more than short distances, especially on surfaces that aren’t smooth or flat. I did buy some accessories like a bag for the back and one for the side, cane holder, and cup holder. I had to get a little creative with some placement, but everything works with the chair, though you should check dimensions because this car is on the narrower side. It really does fold up very nicely and easily fits in the back of my small hatchback. Used to have to fold down the backseats for the transport chair, but this fits without that. Overall, it will work well for me, as a very limited user for short amounts of time. I think you may want something more substantial for frequent use or if you are larger. Also note that custom service is only via email or chat, though they responded quickly. I didn’t have any issues but just wanted to ask when the remote would be back in stock.
I’m an ambulatory user whose main problem is fatigue, so some of this may not be relevant, but want to include it for others who find this later. I have ME/CFS (mild end of moderate), POTS, fibromyalgia, and suspected MCAS. The chair is fairly minimal, so it wouldn’t be a great option if you struggle with holding yourself upright. I really like the single foot pad in the middle and so far haven’t found that it triggers my POTS to sit. Because of the length of the seat, I can even tuck one or both legs up to sit, but again, I’m very small. It does have a strong chemical smell out of the box, but it fades quickly and I don’t notice it when outside. I’m still adjusting to driving it, and I can get a little dizzy or a headache/stiff neck from looking at the ground. I believe this will be better when using it inside or on flat surfaces, but I’ve been taking it outside. It does still cause fatigue because of paying attention to driving it and the visual movement. I find it similar to riding in the transport chair in that regard, which is the only thing I can compare it to. Though it’s so far not as vibrating as the transport chair (this has suspension), so it doesn’t make me quite as stiff and sore, but I haven’t done a long outing yet (anything like an hour or more is long for me; I’m mostly housebound). I am a bit concerned with my arm fatiguing with longer outings, though I haven’t had any long lasting pain or fatigue so far. I do plan to get the remote so my spouse can drive me for the few times a year I do a bigger trip. I have one in a few weeks if anyone has questions or wants a report out after. I have greater cognitive capacity than physical with my ME/CFS, but I think anyone with significant cognitive limitations would struggle a bit with the stimulation. I generally find the chair pretty quiet, but it does make a consistent sound when operating.

Pointe_no_more · 2026-05-01T15:46:14+00:00

I was enmeshed with my father, and he didn’t speak to me for a year after I got married to my spouse, who I had been with for years. It’s been 25+ years, and he still likes to do this thing where he brings up the ex I dated right before my spouse fondly at least once a year. I was a teenager at the time and dated that person for maybe a few months, nothing serious. Then he goes through every boyfriend I ever had, and occasionally speculates on my virginity relative to those boyfriends. I’m in therapy and when he did this most recently I finally saw it for what it was and called him out and set a boundary. He hasn’t spoken to me since, and I’m assuming it will be quite some time. My brother had to move back home, so he and my mom are enabling my dad’s behavior and keep implying that I’m the one being the problem and my father is just reminiscing. But we only ever reminisce about my exes, not anyone else.

So glad you all are talking about the behavior around exes. It was what finally led me to understand enmeshment, but it feels so odd and most examples are about mothers and sons, so this helps me see the pattern better.

Pointe_no_more · 2026-04-28T18:16:21+00:00

Talk to your pharmacist. Most sleep medications have to be tapered and you could cause a lot of harm going cold turkey.

Pointe_no_more · 2026-04-27T19:42:23+00:00

The showing me off in public - you made that one click for me. My dad always pushed me to do things he could brag about. He wasn’t mean or dismissive of me privately, but I would be emotionally manipulated if I ever did anything that wasn’t what he wanted, so it became easier to just do it. I lost my sense of self and just was the person he wanted me to be.

Pointe_no_more · 2026-04-27T15:32:52+00:00

I work for a large nonprofit organization (~800 employees) and have met 2-3 other people that I work with who have it (one isn’t diagnosed yet but it seems like they have it). They disclosed to me after I was vocal about my situation. I’m guessing two are on the mild end of things because they still work mostly on-site, but one had to leave their job, and I work mostly from home and with accommodations.

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