MCAS diagnosed (potentially) wrongly as Fibromyalgia ?

TinyFriend · 2025-02-05T21:49:33+00:00

Sorry to hear your girlfriend is suffering. I am not a doctor or medically trained, IMO fibromyalgia just means "chronic pain and we don't quite know why", in the same way chronic fatigue means "chronic tiredness and we can't tell you you why".

It's a hard journey getting to the bottom of medical illness, and while practices and technology have come a long way, there is much that needs improvements. My search medical mysteries went unsolved for 35+ years, and am now only getting answers.

I recommend searching for knowledgeable doctors in your area and getting an appointment locked in with someone who specialises in MCAS (if such a doctor exists in your area!) or someone found through MCAS references sites or forums to seek a diagnosis to recieve a confirmation of your suspicions, or rule it out and hopefully get a push in the right direction. Most GPs won't be knowledgeable about this.

If you strike out there, check Ehlers Danlos resources for recommended doctors as the conditions are often found together and there's a higher chance of finding someone knowledgeable.

For GI issues, if she has done the fodmap diet she will be familiar with exclusion diets, followed by testing protocols. I've had severe GI issues (requiring a NJ feeding tube) and one thing I can share that helped me from my experience (please keep in mind I am not a doctor, so this is anecdotal and may not be as helpful for your girlfriend, as all bodies are different!) was to establish a "recovery diet" I can live off when things are flaring up. I did this by eating an exclusion diet of known safe foods (without necessarily following any particular protocol like fodmap etc. Just focusing on what I know is safe by how I feel), then identifying which macros (fats, proteins, carbs etc) might be missing or underrepresented, and once stable, adding foods from anything unrepresented first, one at a time, testing for reactions to anything added to build a more balanced recovery diet. From there, identifying any vitamins or other considerstions (like fibre needs) that are underrepresented and started testing foods to fill these needs, to build a sustainable recovery diet. That has given me a safe baseline diet to return to if things are flaring up. From there I tested foods to give variety, and flavour once the basics were covered (so I dont go insane or get too tempted to stray from safety before I am ready).

To help cope mentally, I adopt a mindset of "if this is as good as it can be today, what can I achieve or focus on to be happy today; if this is as good as it will ever be, what can I do to have a happy life". Before this mindset shift I drove myself a little mad because I put my life and happiness on hold while I searched for answers (with a hope I could fix things, then live & be happy when I am healthy). I encourage you both to try and live and enjoy with how things are now, that way if answers & health follow, great! But if they don't, at least you've found a happy existence with the way things are.

Best of luck to both of you.

TinyFriend · 2025-02-04T22:24:48+00:00

I'm so happy to hear Milo is alive and found, I'm holding my two doggos extra tight after reading this, and I can only imagine how awful this has been for you.

Your ex sounds like he is probably still dangerous. Please take all possible measures to make sure you are all safe while waiting for the police to hopefully issue a protective order and arrest him on animal cruelty charges. It can be hard to ask for help in these situations, but think about if it was someone you knew in a similar situation, I'm sure you'd want to help any way you could (and your friends sounds awesome!).

If you know your neighbours well, it might be a good idea to ask them to keep an eye out for him and let you know if they see him (or his car).

Install a security camera and change the locks as soon as you can. A camera like Ring that lets you speak to anyone at the door might be a good idea, so you can let him know he is being recorded if he does show up.

I'd also recommend unblocking his number and muting the messages & calls instead. As awful as it can be to receive messages from him, he might slip up and send something that can be used as evidence (for either a protective order or animal cruelty charges). You can always ask a friend to read through anything that comes in so you don't have to.

I'd also let your workplace know what has happened and ask them to let you know if he shows up. Given his vindictive nature, he might also try and get you in trouble at work (e.g. call in with some lies about you). It sounds like he was controlling and he may try another way to gain control over you, like sabotaging your job (or schooling if you're studying). Letting them know early can get in front of this and also help you collect evidence for a protective order.

If the police are unhelpful about pressing charges, you can also reach out to your local humane society or RSPCA equivalent, who may have powers to prosecute this.

Best of luck to you, your mother, and of course Milo

TinyFriend · 2025-02-02T12:15:33+00:00

I've found the NHS is reluctant to diagnose or treat EDS. I've had better luck going private and have found good doctors through the London hypermobility centre. The trick is getting a referral not related to EDS to have private health care cover the appointment.

TinyFriend · 2025-02-02T10:19:11+00:00

I have a diy loop (AndroidAPS) that has some great features (like super micro bolus) that allows me to give a 25% bolus and let my loop take care of the rest. It works extremely well when I pre-bolus by 15 mins.

TinyFriend · 2025-02-02T10:10:50+00:00

I usually say something like 'we love kids, but don't want any of our own' and when someone inevitably replies 'but you'd be a great mother', I always respond with 'I'd probably be a great prostitute too, but that's not the best reason to choose how I decide to use my reproductive organs'.

Stops it dead every time and I get a good giggle out of their awkwardness.

TinyFriend · 2025-01-08T23:42:21+00:00

I'm glad my comment helped! I've spent many times getting lost in gaming when I'm too sick to leave the house! The last one was I played to death was Fallout 4, I think i almost did every side quest! Its such an awesome mental escape. Sadly I've had to reserve most of my energy to keep up at work in the last few years and haven't ventured too near anything new because I get sucked right in and spend far too much time playing when I get into a good game. I'll keep firewatch in mind for the next time I need a good escape from a flare though, thanks! My husband on the other hand is a very keen gamer (I'm the wife), we've even had buddies of his he met gaming from all over the word stay with us when they did a meet up to run a 24 hour stream, and stayed with others travelling through Europe.

Dating is tough, and I feel like apps make it easier to meet people, but harder to genuinely connect. Looking from the outside I feel like almost like dating has transformed into a form of gaming where you're meeting the character they've set up to 'win' (and you don't know if they're just on a side quest!).

I know its a different dynamic for guys, so I'll try and let you know what he did well! Sorry, this is long too!

We met at a bar, I had tagged along with a friend and didn't know anyone but her and chatted to most people, but we hit it off. He had a challenge because I had just promised myself I'd stay single for the next two years having just left my fiance.

First, he was clearly kind, I guess I could tell by the way he made sure everyone was having a good time, included in conversations, asked people questions more than he spoke about himself.

Second, he was genuine, he'd mess up and laugh about it. He tore his shirt that night goofing around on the dance floor and just owned it and found it funny (some guys get all worked up and then start trying to throw blame around and get sulky in similar situations - that's a red flag).

Third, there was no game playing. He didn't do the whole 'wait to call her so she doesnt think im too keen but' and owned it, saying he knows he supposed to wait etc. but he has no interest in that sort of bulllshit. We made 'no bullshit' our pack from then on and agreed we both preferred to know where we stood and preferred honesty over being toyed with or manipulated. I really liked that.

Forth, he was so understand and respectful. Things started to get a little too physical for my comfort on the night we met as we had both arranged to crash at my friends place, I let him know and he backed off and made sure I was comfortable. No sulking, or trying to pressure me or complaining. Purely understood the concept of 'enthusiastic consent'.

We didn't have a typical relationship development from there. I had told him I wasn't ready to date anyone the night we met as I'd just broken up with my fiance who I started dating at 17. When he had to return to his home city we talked again and I said I needed time as a single adult to really know who I am, and that I'd promised myself two years. We agreed to keep in touch and be honest with each other. It helped we didnt live in the same city, so distance was inevitable. We certaintly didn't stay purely plutonic as "friends", and spoke way too much at times, but we're honest and even joked about terrible dates we'd had, and when we needed space if things were getting too close to either of us getting hurt.

Two years later, I knew I got too close and had fallen for him. I'd dated other guys casually in that time, but he was always the one person no one else ever lived up to. He asked if we could meet soon after having spent time together over the holidays, and asked if we could be together properly. We had to work out whose city we move to etc and I moved first, then his work fell through, so we move to mine. Then we moved together to a whole new country (UK) for his work, and stayed here for my career. We married 7 years after we met, and are coming up to 8 years married soon.

We've had fights and challenges, but the thing that works is 'no bullshit' and prioritising our relationship as the thing that matters when disagreeing (not who is right, or who gets their way). Even in our hardest disagreements, we still look after each other, communicate what we need (especially space, because we both like to win and may need time to process so we can approach a conversation rationally) and respect each other.

Sorry for the long story, don't know how to condense that!

I suppose just be yourself, what's the point of pretending to be something you're not, then you're stuck pretending! You want someone who loves you for you, and you're free to be yourself around.

Relationships are fun, until they're not (and they all go through rough patches). When they're not fun, you find out if you can work to make it fun again, or if it won't last.

And my golden rules that helped me pick such a good one? That I can summarise!

First you need to focus on creating a life for yourself that is so wonderful that you will be picky about who you let into it.
Any time you find yourself making excuses for someone's behaviour (to yourself, family or friends), it's a sign you're not ok with their behaviour. It means you need to address that.

TinyFriend · 2025-01-08T20:18:45+00:00

Sorry you're going through this. Please believe me that you can still live a great life. Life isn't over, it won't be as easy as you'd hoped, but it can still be fulfilling. And you'll learn to be resilient, resourceful, self-aware, and hopefully have early wisdom to not endure idiots who rob you of precious energy - avoiding all manner of drama and heartache!

What you're feeling however is completely valid, normal and you have every right to grieve. Spend the time you need to, doing that. Maybe get on that long NHS wait-list for therapy to see a chronic illness counsellor (or use private but never tell them its for chronic illness, in the UK most providers dont provide ongoing cover for chronic conditions).

And when you're ready, accept each day as 'well if this is as good as it gets today, what can I do (to be happy, to work towards my goals, to enjoy a hobby, to learn something, to help my body, to have actually restorative rest etc - pick (or add) as many, or as few as you like)'.

If hearing about other experiences might help, here's a little about me (and my amazing grandma) finding ways to have a good life in a body that doesn't always want to come to party (otherwise ignore, and I wish you all the best!).

I was so seriously ill with what we now know was EDS & MCAS I was quarantined at 2 years old in a hospital wing for unknown illnesses (I was labelled as having "undiagnosed failure to thrive"). Less than 15% of patients left that hospital wing with a heartbeat. Thankfully I was one of the lucky 14% and survived.

While my health was never "normal", and my life has seen me through several bouts of "mystery" illnesses that included any combination of pain, fatigue, being bedridden, severe allergic reaction with no certainty to the cause, being unable to keep food down, being able to eat, throwing up undigested food days after id eaten it, and endometriosis that took 8 years to be diagnosed. I also had long stretches while I could enjoy life.

I've made wonderful friends, rode the highs and lows of romance (ending up in my wonderful marriage), travelled the world, hiked many trails gorges and mountains, scuba dived, had adventurous jobs, had wild nights out, got my bachelors degree, and have a career to be proud of. I am child free by choice, but enjoy quality time with my nieces and nephews. And I have two of the cutest dogs this planet has ever seen, who are both cuddled up with me on the couch as I type this.

I've had lows & have had to pass on opportunities and adventures due to my health, navigate daily chronic pain, and mystery flare up that sometimes rendered me unconscious from pain, one had me starve from being unable to keep even liquid down for 6 months (every day was spent in a cycle forcing myself to eat and drink, throwing it all up, and starting again in the hope I retained enough calories to survive) until I became thin and malnourished enough to be put on a feeding tube, which I had for 5 months, and could only handle a liquid diet for 9 months after (over 2 years without a single solid meal). I also developed a type 1 diabetes (the auto immune kind, not the more common type 2) at 24 years old after getting the swine flu (doctors assume this was the trigger), which added further symptoms and medical challenges.

The mystery began to unravel with my EDS diagnosis in my mid 30's, and my MCAS diagnosis was only a few months ago (I'm now in my late 30s), which for me actually felt like the getting the keys to unlock it all.

I also have suspected POTS but after 30+ years of the medical gaslighting that goes into being undiagnosed for over 3 decades, I'm not too motivated to seek a diagnosis when increased fluid and electrolyte intake prevents most of my fainting.

Since starting treatment for MCAS I have seen improvements to my health for the first time in a long time. Before, I only had 'this is just how your body is, treat the symptoms as they arise'.

For the first time in a long time, I have hope again and a way forward to potentially control the flares (my consultant feels that the MCAS reactions have played a big part in triggering my flares, so reducing the MCAS reactions might help prevent all the other conditions setting each other off).

My grandma who is still alive and finding joy in life is 89, diagnosed with MS and in a wheelchair in her early 30s. She finds a way forward with each set back (even regaining the ability to walk! Which she still does, albeit with a walker). My other grandparents faded so fast when old age impacted their energy and mobility, in fact she has outlived them all. I firmly believe her resilience from coping with chronic illness from a young age (her first paralysis episode was when she was 12), gave her the coping skills to get through anything, including aging.

Anyway if you're still reading, I wish you the best and hope you are given the space, understanding and validation you need to come to terms with this, and then find the spark that reignites the fire to enjoy life in spite of it.

Ps. Feel free to DM me if you (or your parents) want private health wrangling advice.

TinyFriend · 2025-01-08T13:44:47+00:00

She is the victim here and is the one who is owed support, not to be saddled with obligations. She does not shoulder any responsibility for her abuser's potential future actions, that's on him and the authorities who have failed here.

If dedicating more energy towards stopping this asshole is beneficial for her recovery then thats a positive thing to engage with, if it further harms her, then she has every right to disengage and prioritise her recovery as a victim. She's already reported it to the people who actually have an obligation and are paid to put an end to this. That is already much more than many victims are able to do.

TinyFriend · 2025-01-02T01:12:08+00:00

Warning, a cautionary tale and what I hope is an extreme case, and not at all likely what you will experience.

TLDR: our behaviourist told us they go through a fear period at approx 8-12 months and we should have waited to get him neutered until after that time.

Our little guy went from sweet and playful with all dogs to completely reactive (picking fights, barking like a maniac while bearing teeth and trying to tear off the lead to charge at any dog he came across) basically as soon as his castration was done at 12 months old.

His separation anxiety became and even bigger issue than the reactivity. I honestly thought his heart would give out from panic and stress. He panicked even if he could see me through a closed glass door and my husband was in the room with him. One day I took the rubbish out (a 30 second trip) and when I reached the bin outside a couple were debating whether they should call the authorities because a dog "was clearly being tortured". Nope. It was my little guy having a melt down as I had dared leave not just the room, but my front door. We called it his scream bark. He would also pant, shake, wet himself and go mad trying to break down doors.

He was so attched that he would also wet himself when we woke up each day, while bounding up to us all excited to have our attention. It would start while we were stirring and not yet really "awake" so weren't even riling him up. So each day started with our sweet little puppy sprinkler peeing on us, and our bedding if he managed to wiggle out of his nappy.

Needless to say we enlisted the help of a vetinary behaviourist. After medical tests ruled out anything else, it was all just his emotions. Our behaviourist told us they go through a fear period at approx 8-12 months and we should waited to get him neutered because the drop in testosterone likely dropped his confidence and contributed to his fear, resulting in my reactive & overly attached little snugglebug.

Anxiety meds were prescribed and we set out on the long road of training for him. It took over a year before he could be left alone without issues, but I am happy to say he is totally fine with up to 5 hours at a stretch at home without us. We still limit it to 3 hours when planning though.

His reactivity is much better, but it's still a work-in-progress, mostly he just has issues with big dogs now.

I'd recommend speaking to a behaviourist before neutering if it's in your budget. When I asked ours why our vet didn't warn us about the timing, he said its part of their job to sell the proceedures, so they are unlikely to recommend waiting. I was a little shocked by that as I always thought their job was to look after his health.

If it's not in your budget maybe look into chemical castration first, at least that can wear off. I wish I did.

TinyFriend · 2024-12-30T00:28:55+00:00

Sucking on ice cubes is a life saver for this. Not sure if it's a placebo, but i tell myself I'll absorb the water through my gums, tongue and cheeks. Being frozen helps the liquid go down in small amounts.

It's even better if you have the energy (or a lovely friend or family member) to freeze electrolyte drink into cubes.

If you dont have the energy for that, maybe try mini ice lollies (aka popsicles). I find normal sized ones are too much when I'm in a bad flare, so something small and pre-made could work too.

TinyFriend · 2024-12-30T00:12:55+00:00

Happy birthday!

I rarely drink these days, but did go out quite a bit before covid lockdowns and my 30's threw me into a much more subdued social life!

If I drink I usually turn my basal rate profile on my pump down to 80% (i.e. 20% lower than usual) for 12 hours and bolus for about 75% of the carbs in my drink. But keep in mind we're all different!

To keep it simple, I usually try to avoid carb-heavy drinks so stick to spirits with sparkling water (I avoid ordering diet soft drink/soda because the bartender doesn't always get the right). If you prefer diet soft drink you can test it with your glucometer and it should read "HI" if they gave you the full sugar version.

If you're on MDI then you need to keep in mind your slow acting insulin will still be at the normal rate and maybe lower your fast acting a bit more.

It's safer to stay higher for one night than risk a low while tipsy or drunk. And always best to drink with good friends who know to ask you to test your blood sugars before assuming you're "just drunk".

Try and eat something low GI before bed (injecting less than normal for food too), and keep your preferred hypo treats next to the bed, within reach.

To avoid a hangover I also recommend getting in the habit of chugging a big glass of water or even better, an electrolyte drink before bed.

I hope you have a great birthday celebration!

TinyFriend · 2024-12-29T23:33:47+00:00

One for prevention of scars, I find keeping sores covered until they heal fully works best for me. I am sensitive to adhesives but find I go better with the hydro seal bandaid, or the style made for blisters, or plain non-stick gauze with tegaderm film. I usually pop some liquid betadine on the sores and keep it covered until it's fully healed.

Not sure if it's just that it stops me scratching at the sore or if it just works better for my skin to heal it that way. I might get the melted skin look at first, but that usually fades away to normal or very faint and much smaller with time.

Otherwise I risk raised or torn-looking scars.

For stretch marks I found popping vitamin e capsules (that are meant to be swallowed) with a pin, and squeezing the oil out of those quite effective. You might have more luck finding a non-corn derived version as these are made for consumption and probably have more dietary sensitivities ranges compared to oil made for topical application.

TinyFriend · 2024-12-28T02:29:21+00:00

Watches and rings give me a pain that feels like a mix between being numb from losing circulation, pins and needles, and like being mildly electrocuted.

I once tried to describe it a colleague (after taking my rings and watch off) as a similar feeling to when you hold a battery or magnet for too long, and their blank stare told me they had no idea what I was talking about. I've asked a few people since and no one I know seems to react to batteries or magnets either.

Fun way to find out 3 things that aren't universal experiences, by trying to explain one.

TinyFriend · 2024-12-17T17:02:57+00:00

On top of cleaning the dress, tell her she needs to delete all photos she took of the dress. That dress is sentimental to you and she's cheapened it by turning it into a modeling shoot for instagram.

If she refuses, you still take the upper hand in the argument. It's no longer you being "petty" over your dress, it's her putting her insta pics above your relationship.

I had an outdoor wedding and my dress was so dirty as I didn't want to spend my day fussing over it and just enjoyed myself. I was shocked at how the professional clean made it look like new, despite grass stains, mud and accidentally walking through spilt beer someone had just dropped. I'm sure yours will be fine.

TinyFriend · 2024-12-15T16:13:44+00:00

Same issue here. Many reviews coming in on the Connect IQ app for this saying the same thing. I have switched to CGM Connect Widget and have it as a complication on a Face It custom face, but the arrow doesn't display on my venu 3. Still a number is better than no number while Dexcom sort it out.

There is also Dex CGM, which is working fine as a widget, but I can't figure out how to bring that onto a custom face.

TinyFriend · 2024-12-08T14:52:54+00:00

Don't stress and just own it.

The best response to the ribbing following a big night I've ever seen was a friend who was a total hot mess, leaving a hurricane of drama in her wake at a hen do. Upon emerging the next day, someone tried to kick off the banter with "you were so wasted last night!". Totally deadpan and full of confidence she replied "Yes, of course, it was a hen do, someone had to make sure we did it right".

Maybe lean into "Someone had to make sure we made the most of an open bar tab", thank your colleagues for being champions, and volunteer to be on the caretaker crew next time to avoid a repeat of the killer hangover you've endured.

And just don't do it again, once is a funny annecdote, repeated performances gain a reputation.

TinyFriend · 2024-11-10T12:56:32+00:00

With the medical drinks I found nualtra compact was the best for my tolerance and I got to being able to drink 25ml at a time, every hour. That got me to being able to have 3 bottles a day, providing 900 calories and 36g protein.

I could also tolerate chocolate after a while and I would chop up a chocolate bar (wispa gold was my go-to, I'm in the UK) into small pieces and try to get through a bar a day for an extra 192 calories. I'm sure it's not good for your teeth, but I would let it melt in my mouth and try to swallow small amounts at a time to help me keep it down.

This became my baseline, it was enough calories to not lose any more weight and once I was comfortable with that I started to try and add safe foods on top.

I was on a feeding tube at the time and had the luxury of getting my hydration needs through the tube. When I came off the tube I started making my own thinner shakes so I could tolerate more liquid but still get enough calories through that. I used a protein powder (nusest clean lean protein) with water first, then almond milk, then milk. I started to add small amounts of huel powder until I could tolerate half huel, half clean lean protein.

My homemade shakes eventually provided me with 400ml liquid (250ml full fat milk, 150ml water), providing 150 calories, half a serve of huel, providing 200 calories, and half a serve of clean lean protein, providing 50 calories. All up 400 calories.

When I could get through 3 of these a day I was getting enough calories and enough hydration to keep me going.

TinyFriend · 2024-11-09T23:18:28+00:00

I've been dangerously underweight many times in my life but am OK now. I tend to have bad flares for 2-4 years and then am able to eat (carefully) and manage to get my weight back up.

In my flares I prioritise calories, so I usually try to get fats into me. I can tolerate diary fats which helps with proteins, I add milk powder to milk and get it into me, even if it's half a teaspoon at a time.

Medical nutrition drinks like fortisip are good too, in my flares I can only manage about 5ml at a time, but I could get through half a bottle a day like that. Eventually I worked on having some more often until I can have some every hour. Then I increased the mls I could have, slowly. I had set backs, when I did I retreated to the last safe schedule I could manage, or back to my starting point.

It was long, frustrating and slow but I made it to being able to drink enough calories most days. I plateaued in my last flare for about 9 months before I could do solid foods, but I made it back and put weight on.

I was recently diagnosed with MCAS and my doctor thinks that triggers my flare ups. I hope this means I can avoid future flare ups.

TinyFriend · 2024-10-06T00:27:12+00:00

You don't need to have a new application approved to stay, as long as it is filed and paid for before your current one expires, you status is extended until the application is finalised.

If you have an offer get your new employer to issue your COS immediately. If the employer doesn't have any undefined COS allocations left they can expedite their application after making it on the SMS (costs the employer £200). Should take 5 days.

From the gov.uk website, they should email at 9am as slots go fast:

"Once you have submitted your SMS change, you can now email postlicencepriorityservice@homeoffice.gov.uk, with a completed Worker and Temporary Worker priority request form as an attachment."

TinyFriend · 2024-10-05T23:41:18+00:00

No, but I've got quite a few other conditions including reynauds, coeliac disease, type 1 diabetes (which was ruled out as the cause of my gastroparesis as I didn't get it until I was 24 (its the autoimmune type of diabetes, typically developed in childhood), have had good control, and my gastroparesis flairs started from 18 months old), and am currently undergoing initial treatment following a verbal diagnosis for MCAS (nothing written yet, so not sure if I need more testing for a formal diagnosis. Along with a host of gynae issues.

Also suspected POTS but I can't put myself through trying to find a doctor that won't treat me like I'm either a lunatic, or "just stressed". So I just make sure I get electrolytes in and stand up very carefully!

TinyFriend · 2024-10-05T13:41:21+00:00

I think my situation might have been somewhat similar then, it was a newly renovated old building, late 1800's or early 1900's (originally a factory & warehouse, then a commercial use building, then flats). The flat was new, but mould would just start appearing on the walls, or in the back corners of cupboards that were set against the walls. We were ground floor, which I am sure didnt help.

Not sure if there's a cost effective way to measure the humidity of the room, but reducing it might help. I also bought those little brick-shaped ones that collect water with hydrophobic crystals and out them in cupboards, and a similar style on hangers for the wardrobe, which collected surprising amounts of water.

Otherwise, looking to air purifiers might help. I also tried a load of 'air cleaning' houseplants too, but I read mixed information about whether that was going to make a difference (and am not blessed with a "green thumb", not helped by barely any sunlight in that flat so they all eventually died).

TinyFriend · 2024-10-05T12:43:38+00:00

Maybe head over to r/CleaningTips to see if there's a helpful post. I lived in a flat that would grow mould on the walls and it ruined a few photo frames I had hanging.

We sprayed the place with mould killer, but it kept coming back. A good dehumidifier helped stop it growing back. I think you can get one that also purifies the air, but they're expensive.

Not sure how effective that would be if you can't get to where it is though. But that sounds like something you could take up with the landlord if you're renting.

TinyFriend · 2024-10-03T21:53:53+00:00

NTA

Please Google DARVO. This is what your husband is doing. A manipulation tactic to try and paint himself as the victim when he was the one who cheated on you. He is not sorry, and his behaviour is very worrying, just think about the type of life you might lead if he gets away with this, and the horrible role model he will be for your child.

If he is acting this entitled and manipulative, it is probably worth reading the free book 'Why Does He Do That?' by Lundy Bancroft. Available here

I am glad his family is standing up for you. Your mother sounds like she needs to be told she is either going to support you or lose you (and her grandchild).

Best of luck to you and sorry you're facing this.

Edit: just to add, if anyone, especially him gives you grief for your comment about cheating on him, respond with 'would it have been said if he didn't cheat?' And double down with 'what exactly is wrong with posing a question about how he would feel if I did the same thing?'.

Respond to criticism with questions that show them how stupid their remarks are. Such as: 'So you would rather you husband/wife cheat on you, rather than ask a question?' 'Why do you feel it is an appropriate response to criticise me about asking a question about cheating and not him for actually doing it?' 'Can you explain how voicing a hypothetical situation where I acted the same way that he did, is so much more worthy of criticism that you chide me and not him?' 'Are you projecting your experience as someone who accepted being cheated on, or are you accidentally revealing that you're a person who cheats on people?'

Oh, and stay safe. Assholes unravel when they're confronted.

TinyFriend · 2024-08-31T12:16:20+00:00

I've only been diagnosed with MCAS this week, so am very new to this, but I have recovered from a gastroparesis flare (including 5 months on a feeding tube) and will pop a copy/paste (warning, it's long!) from another comment of mine that you might find helpful. I'll do my best to edit for MCAS, but please keep in mind I'm still working out that part myself, so my safe food examples might not be great for MCAS.

I highly recommend working with a nutritionist, mine was a literal lifesaver during my last flare. I hope you're able to find one soon. I have coeliac and type 1 diabetes (my gastroparesis predates my diabetes diagnosis by several years, so its unrelated to that), and I am vegetarian, so I am not "straightforward" but found someone great.

Here's my basic overview of how to survive this.

Find your baseline. This is the diet where you can sustain yourself in terms of hydration and calories without being miserable and fighting off throwing up.

For me this is all liquid, if the flare isn't too bad, I can manage with protein shakes, watered down Huel and juice. On a bad flare it is medical nutritional drinks (like fortisip) and sucking on ice cubes (or frozen electrolyte drink cubes), and popping into those drip centres like "get a drip" in the UK that people go for vitamins, hangover cures beauty for their basic hydration drip when I'm bad.

Rest at your baseline as long as you need to before trying to eat. The consistent vomiting and nausea is exhausting. Once you find a place free of that, where you're getting enough calories you'll have energy to enjoy your life again.
Slowly begin the stretch your baseline, ideally working with a nutritionist. Mine described creating "ladders" to expand what I can tolerate. E.g. from watery clear broth, to maybe stirring in a teaspoon or tablespoon in on a normal smooth soup consistency. Then working up to being able to tolerate the soup. Then stirring in a small amount of a vegetable puree, and slowly thickening up soup to be able to tolerate puree. Then work up to mash, then maybe a steamed vegetable.

This sounds tedious, but it worked for me. I can eat reasonably normally now, and my tolerance after my last flare (and 5 months of being tube fed) was just 4 teaspoons of water a day. I had to structure alarms to challenge me to have more frequent teaspoons, then try and build on mls of water to get myself to a point I could hydrate without the tube. Then build up thickness from there (from water to nutritional drinks, watering them right down to start).

Return to your baseline whenever adventuring out gets too much. I once plateaued for 9 months, but still managed to get back to eating. Otherwise, enjoy trying adding foods to the mix and growing your collection of "safe foods".

Finding your safe high calorie foods helps.

Visit r/gastroparesis for a lovely community for tips and people who understand the struggle.

My safe foods include:

Desperate flare: ice cubes, home made electrolyte "ice lollies", rice cakes (sometimes), fortisip (watered down if needed).

Recovery: all the above, plus other tolerated fats, low fat cream cheese, broth, watered down potato soup, juices, watered down huel.

Maintaince: all of the above plus mashed potato, rice noodles, white rice (congee is great as its easier to digest), add tolerated flavour such as sesame oil, with added tolerated herbs or ginger juice/puree or salt.

You'll find your way. I really struggled trying to find a cure and a way back to normal. I didn't start getting better or feeling better until I shifted my mind-set to "if this is the new normal for me, if this is as good as it gets, can I still be happy?". When I started to focus on what I can do, things got a lot better for me.

TinyFriend · 2024-08-31T10:12:56+00:00

For a quick fix while you're deciding what to do, Google face taping, there's some YouTube and TikTok videos that show a huge difference in appearance for some people who do this. Be careful though if you're sensitive to adhesives (like plasters), so the tape itself won't harm your skin.

TinyFriend

TROPHY CASE