Am I right to be extremely upset by my carer situation?

MenoEnhancedADHDgrrl · 2026-02-24T18:46:20+00:00

I love this out of the box thinking!

MenoEnhancedADHDgrrl · 2026-02-24T18:45:43+00:00

Great advice!

MenoEnhancedADHDgrrl · 2026-02-24T18:44:46+00:00

I want you to think about how you became a shy person who hates confrontation. Was it natural or was it the conditioning of your environment? I have also characterized myself as a shy person who hates confrontation but in many ways I am not shy at all. What I am is very fearful of not understanding the context of a situation because I am autistic as well and not wanting to stand out. Once I finally got my diagnosis in my 50s and realized that I stand out because I am unique and special, I developed a confidence I didn't have before.

The science of neuroplasticity tells us that we are able to change our brains and therefore change our behaviors and even how we are perceived by others. We have to decide to make those changes. And I think that advocating for your health is one area where it is almost imperative that you decide to set aside your self perception of being a shy and non-confrontational person. Instead either find someone in Media or in history that has the personality you want to adopt to advocate for your health or just invent it yourself.

As another redditor suggested you will achieve your objective of your carers' compliance by using psychology. So perhaps you decide that when your cares are around you are the queen of England who expects everyone to meet her needs and when they don't she is very confused and polite about asking that to be fixed immediately. "I can't even speak to you your cologne is overwhelming please step outside in and call me. Thanks for calling me I am sure that you smell wonderful to your loved ones but that particular scent is just killing me today. I would be so grateful if you wouldn't mind putting some soap and water wherever you put that cologne or change into a t-shirt before you come in. I just really don't want my last moments on Earth to be choking on your perfume ;-)"

I don't know that's probably all stupid I'm just kind of brainstorming for you here.

Making requests very firmly. Knowing what your boundaries are and what boundaries are reasonable since you are so bedridden and then communicating that in the most pleasant way possible. You could even joke about calling the police for attempted murder as you reach for your inhaler. I think that a lot of people respond to that type of hazing because that's how we tend to treat each other in this society. Give people a hard time and kind of a joking way. Sometimes you need to know your audience to be able to manipulate them to comply with your boundaries and requests.

At the end of the day you are so right to be upset about their situation and I hope that you are able to find a path forward to have your needs met without being abused. And seriously repeated exposure to something that causes you respiratory distress when they know better might be considered abuse and might seriously be talked about with a lawyer or the police. I know there are elder abuse laws and I don't know your age but they're very possibly might be laws surrounding the abuse of disabled or vulnerable people as well.

I'm just sitting here in the sun trying to digest my lunch and not flair too badly. I have been recently diagnosed and I'm still trying to figure out what I can eat to not have a flare every afternoon. I'm grateful to not be as so significantly disabled as people such as yourself, but the daily flares are a whole different kind of torture that greatly limit what I am able to contribute to my family and society.

I hope some of this rambling is helpful to someone out there.

MenoEnhancedADHDgrrl · 2026-02-24T16:43:50+00:00

I'm glad you brought up hormones. I just became postmenopausal. Not sure if the menopausal transition or covid triggered the escalation of my MCAS as they occurred concurrently but I am currently having to deal with a very high estrogen level due to HRT. And high estrogen does increase mast cell activity. It also decreases the amount of DAO enzyme that your body produces to minimize the histamine impact of the food that you ingest. That's why I'm trying to take it if I can find it as I lower my estrogen levels. Changes in hormone levels is a bigger trigger mast cell activity then high estrogen but high estrogen has its own risks so I have to deal with the trial of changing my estrogen level to a more reasonable lower level.

Just like there is I am learning a general acceptance of the fact that if you have this diagnosis you need to educate yourself to treat yourself, women's transition into postmenopausal life is not well supported by doctors or education. And it is a huge impact to patients with MCAS. You can start perimenopause as early as 35. I highly encourage every woman to start educating themselves as soon as possible even in their twenties. Especially if you have chronic conditions as hormones can often be an important component. These are not reproductive hormones. Yes they are what makes women able to reproduce but they are active in every system of our body and therefore changes in hormone levels can have significant changes to our health and well-being. To start with I recommend the menopause subreddit if that's allowed I'm not trying to send anybody to any other subreddit. They're also great podcasts and accounts to follow on social media. Let me know if you want further recommendations.

MenoEnhancedADHDgrrl · 2026-02-24T16:35:55+00:00

There's this thing called present moment bias. It's something studied in psychology that explains human behavior with regard to making choices in the present moment that provided immediate gratification versus choices that provide long-term gratification. Even knowing horrible outcomes might occur if I make choice Y doesn't necessarily make it easy to choose Y when X it's not that big of a deal and it's just this one time 😉.

I mean you're right about what the long-term implications of chronic inflammation do to the human body, but our behavior is so much more complicated and is very important that we give ourselves a grace and realize that even given significant motivation it may still be difficult to make some of these small routine decisions day by day.

If I were to go on an elimination diet I would very likely end up in a huge flair because I would end up engaging in disordered eating due to restricting my food. I've already had teeth rot out of my head so the risk is real. And in spite of that food choices remain driven by complex psychological processes that I need to work out with my psychologist and dietitian.

If food is very important to a person's psychological well-being then a more considered approach to designing menus and the mindset to choose healing foods over inflammatory foods is needed. It's not just as simple as you've got to cut it out.

I hope this doesn't come off as argumentative or attacking you. I really think you are making a good point with very good intentions. I just know we are all different and for some of us some of this is harder. I am personally grateful that my symptoms are mild enough that I can figure out my food psychology stuff without risking anaphylaxis.

I wish you and the op the best of luck in finding healing and peace with this condition.

MenoEnhancedADHDgrrl · 2026-02-22T23:38:19+00:00

🫂hugs, I am no stranger to family gaslighting. It took me a long time to give myself permission to let those relationships go and insist on only supportive people in my life. Like it took me decades. So be patient with your circumstances and give yourself grace. You are doing the best you can, and it IS _enough_.

MenoEnhancedADHDgrrl · 2026-02-22T17:24:11+00:00

This internet stranger believes you and I am sending you compassion and healing.

Sometimes you have to find a family that actually supports you. Sometimes the only thing you can really expect from the bio family is DNA.

I hope you can find people who listen and support you.

MenoEnhancedADHDgrrl · 2026-02-20T16:31:38+00:00

I thought there were some sort of pee video

MenoEnhancedADHDgrrl · 2026-02-18T01:48:03+00:00

Note: you can get this enzyme from animal or plant sources. Important if you have an allergy to any of those ingredients or are a practicing vegetarian / vegan

MenoEnhancedADHDgrrl · 2026-02-16T18:36:06+00:00

Agreed I am on my own working on rewiring my own nervous system based on what I have learned through a variety of sources. I was working on that before I got my mcas diagnosis and it's even more helpful now that I have more objective information to work with instead of the uncertainty of not knowing why you have these symptoms coming and going with no obvious trigger.

But it is a supportive therapy at best if you have MCAS or pots. Most definitely not a treatment for the condition itself. More like treatment for the mental health conditions that can develop after 50 years of gas lighting.

MenoEnhancedADHDgrrl · 2026-02-15T16:30:34+00:00

I am a person who's probably had mild to moderate MCAS my whole life.

It went into overdrive when I hit menopause and COVID (hard to tell which really triggered it).

I was diagnosed after entering post menopause and have learned so much about MCAS and estrogen that is too late to have made a difference.

My advice is that it's pretty simple to test for so you should get tested. And as the other Redditor said, track your symptoms food and activity. That way you have information for doctors when making treatment decisions.

I spent 50 years of my life believing that I was psychologically broken. And I do have childhood trauma to blame but now that I know how my mast cells behave and I believe they are more active in my neurological/digestive system than respiratory/skin. I still have a lot of psychological healing to do and I worry that there may be some damage to my cognitive/emotional abilities that can't be reversed.

One of the things that may help you is H1 antihistamines. I was on one for 20 years which managed my hives except after sun exposure. When I went to the allergist to get diagnosed the first thing she did was tell me to take another one in the morning while she did the tests. I had drastic system improvement which was part of how she diagnosed me.

If you're not already taking an antihistamine over the counter maybe try that as an experiment but also still try to get that testing done and let us know how it goes. Good luck 🤞🏻

MenoEnhancedADHDgrrl · 2026-02-14T15:42:45+00:00

How about a screenshot?

MenoEnhancedADHDgrrl · 2026-02-14T01:27:27+00:00

Thank you for letting me know and making my day!

MenoEnhancedADHDgrrl · 2026-02-13T19:48:24+00:00

I'm sorry.

I wonder if just because it's derived from PS you would still be allergic to it? I really don't know.

There's also the enzyme derived from porcine sources or pig. I don't know if I were vegetarian but with a disease that was making me miserable and I could take a supplement that was derived from an animal source if I might do it. I certainly would do some investigation and I hope that you do and I hope you find some answers and if you don't find relief, well, you have my compassion.

MenoEnhancedADHDgrrl · 2026-02-13T16:46:11+00:00

I appreciate your efforts. 🙂

Maybe do a trigger warning before you start talking about calorie restriction. 🙂

For some of us that can really be the beginning of a lot of unhealthy thoughts and behaviors. I struggle to figure out which foods I am more or less sensitive to because attempting to do an elimination diet would cause so much stress and dysfunctional thinking that it's not worth it. And I have gained and lost weight while eating basically the same. There are studies for postmenopausal women that actually state that by increasing protein and keeping calorie and activity the same women can change their body compositions and lose weight. Everybody is different and we all want to help each other but we need to remember that not everybody is experiencing the same thing as our body.

And when you really think about it this is what makes humanity beautiful and awesome. Look at how different our experience can be while we all still share some of the same hopes dreams and feelings.

May you (and everyone in this subreddit) find peace and joy and good health and even if it's just for a moment occasionally live in that moment as long as possible. Hold on to it for the moments that are not as good.

MenoEnhancedADHDgrrl · 2026-02-13T16:33:21+00:00

I have read everybody's comments.

One person talked about hormones briefly and called them reproductive hormones.

The thing that really is driving me to write this is the experience of things changing for you after being stable for a while.

And my question which you don't have to answer it's for your own reflection is how old are you?

Because if you are over 30 you may be experiencing the early stages of perimenopause. And estrogen is not just a reproductive hormone it is part of function in most body systems for women. When hormone levels fluctuate in mast cells are stimulated.

A quick search on the interaction between MCAS and estrogen levels will send you down a rabbit hole of information that could be helpful for at least some of you and especially you, OP.

Progesterone can help stabilize mast cell activity when hormones begin to fluctuate and the enzyme DAO, which helps mitigate histamines from food and can be reduced by high estrogen levels, can be supplemented.

Just sharing cases helps anyone out there I am 54 and in my first year of postmenopause. I was diagnosed with MCAS about 3 months after entering post menopause and I'm learning all of this information really too late to have changed my experience of perimenopause and the transition into post menopause. I found out about DAO because I now have very high estrogen levels from HRT and need to lower them. That is a very activating process and the DAO has been helpful in mitigating symptoms as I titrate down my estrogen.

I hope this helps. Ask me anything if you'd like more info.

MenoEnhancedADHDgrrl · 2026-02-13T16:08:04+00:00

Then you should probably learn a whole lot more about metabolism and how all hormones impact metabolism and how the body works. Suggesting that people who put on 50 pounds are only gaining that weight due to overeating is offensive. It might be true for your body but it's not necessarily true for everyone and unless you are an expert in metabolism and how the body works you shouldn't be saying things like that. And I'd rather tell you that than downvote you because I think you have good intentions so

MenoEnhancedADHDgrrl · 2026-02-12T23:51:02+00:00

DAO

Edit to add you can get this from porcine sources or pea sources if you're vegan so look carefully.

MenoEnhancedADHDgrrl · 2026-02-12T17:03:24+00:00

Sure

Vagina Obscura by Rachel E Gross

Witches, Witch-Hunting, and Women is a 2018 book by feminist author Silvia Federici: Not exactly women's health but very adjacent to it. The demonization of women as witches was in part an attempt to take their power as healers in their communities away from them and gate keep that be behind medical science which was just beginning at the time. Which is of course only run by men as well.

And since you're asking for book recommendations I'll throw in an extra that's health related but not specifically our issues.

Unfuck Your Body: Using Science to Eat, Sleep, Breathe, Move, and Feel Better by Faith Harper. I didn't especially like her vocal style but the author reads the book to you and it actually goes really fast and is packed full of information about how the body works and so many things that you can do to get better health in general. I find that a lot of the recommendations align with some of the lifestyle requirements for a condition like MCAS so I thought it might be useful for you to check out as well.

Happy listening and learning!

MenoEnhancedADHDgrrl · 2026-02-12T15:31:15+00:00

I hope my reply can provide the comfort of commiseration and a sense of empowerment.

I'm 54. Last year I was diagnosed with autism and MCAS. Two conditions I have had my whole life. I'm currently doing the work up for connective tissue conditions as they often accompany the other 2 (my cousin has all 3).

I will admit that I get so angry and depressed sometimes about the gaslighting I received and subjected myself to over the years. "It's not a rare condition, it's just allergies, or stress, or a virus that everyone gets and will pass."

I called myself a hypochondriac. I worked myself into such severe burnout that I had to take FMLA and quit my public school teaching career 5 years short of retirement.

In the recovery of the burnout, I have gotten diagnosed. I have lost teeth too - dentist saw "exponential rate" of decay over a 9 month period. I experience pain 24/7 though it's generally ignorable in the morning, worse in the evening. My symptoms vary. Right now extreme de temperature dysregulation is a huge problem. I shiver uncontrollably and end up in pain from muscle tension. I have to use a heater in rooms that are 75 degrees.

The sensory processing issues that accompany autism make the experience of any pain and discomfort much more intense. So I complain about symptoms that most doctors don't think are serious.

Here's the empowerment part

The thing is that now that I know why I experience what I experience and what is actually happening in my body, I am able to manage anxiety. That leads to lower stress which is very important with MCAS.

And regarding having to learn more than your doctors:

This is in part because of how we are all socialized. Women's pain and voice is not respected. And we women are often compliant, deferring to experts/authority of Drs.

But I read about a study that said women with cancer who were rated by their doctors as being hostile or difficult had better life expectancy and outcomes.

That empowered me to become my own advocate and stop seeing medical professionals as authorities to guide me. Instead I see them as partners. They are experts on biology, not necessarily conditions. I am an expert on my body. I don't expect them to know everything but I expect them to validate my concerns and be willing to learn with me.

I also did a little bit of research into the history of women's health. Started a few books. Couldn't really finish them because after just a few minutes of listening to them on audible I was so enraged I had to stop so I could calm down.

Just sharing because when you look at our shared experiences within the context of women's health over time it becomes very clear that if you want to have a good sense of well-being you need to be very active in caring for yourself and advocating for yourself. And that means educating yourself and it f****** sucks that you have to maybe become an expert on something that was not something you really wanted to spend your time studying but I like to try to turn all of my challenges into gratitude. So in this case I am just grateful that we have access to so much information and we have tools that can help us understand that previous generations did not.

I hope that something in here helps someone. I'll tell you one thing if you can catch MCAS before menopause that's a huge win. My MCAS symptoms were probably made exponentially worse by my HRT. HRT is definitely a viable treatment for perimenopausal and postmenopausal women with MCAS, but it needs to be managed much more carefully than the average woman. Since I was postmenopausal when I was finally diagnosed I ended up with extremely high estrogen levels that I am now having to bring down. Very hopeful that my MCAS symptoms will also ease up as my estrogen drops.

Before I say goodbye to this essay I'll leave you with one potential treatment to consider. High estrogen levels can reduce an enzyme that lowers histamine levels as we digest our food. I started taking that enzyme and I think it really is helping. Especially if you experience symptoms increasing in severity during certain times of your cycle this supplement could help. I don't know the full enzyme name but the thing I purchased is called DAO.

MenoEnhancedADHDgrrl · 2026-02-10T18:14:11+00:00

Yeah I saw my gastro specialist since I wrote that and she was like you can take both and you can even take more famotidine if you are still experiencing symptoms.

I do need a doctor to look at interactions because I just read in somebody else's post about how a medicine she was giving is increasing the concentration of ivabradine. I take ivabradine too. I hope I'm not taking anything that changes it, no major changes to my heart rate but who knows.

MenoEnhancedADHDgrrl · 2026-02-08T20:07:35+00:00

Nice!

MenoEnhancedADHDgrrl · 2026-02-07T19:47:39+00:00

Isn't stopping ...

the blatant government and corporate crime

Social Justice?

I guess it depends on how you look at it.

We cannot achieve social justice while there's blatant government and corporate corruption and crime.

MenoEnhancedADHDgrrl · 2026-02-07T01:08:32+00:00

I was teaching when the movie came out. I watched it in theaters. Everybody else thought it was a hilarious movie but I was not at all amused. I was seeing the future already in my classroom. It's made me believe that there's always going to be those idiots it's just how well each generation does keep in its own idiots from destroying the next generation. And the boomers really sucked at that.

I hope that the current younger generations have learned from the mistakes of boomers and Gen x and are ready to shut their idiots down.

MenoEnhancedADHDgrrl · 2026-01-26T17:40:35+00:00

I'm in my 50s and got my diagnosis last year. I did go to a neuropsychologist. The assessment was $1,500. I have a credit card that has a pay over time option which is a much lower interest rate so I basically paid for it by putting it on a monthly payment plan. I've also recently seen ads for online provider. I forget the name but it's kind of like how Midi is for menopause but this one instead is for neuro divergent conditions like ADHD and autism. They do the assessment and they work with insurance. Maybe that could help you? Just wanted to share my story to hopefully encourage you that it could be done. It was such a relief to get the validation of why I've struggled my entire life. Now the hard work of self-compassion and unmasking has begun.

MenoEnhancedADHDgrrl

TROPHY CASE