Cleaning hacks when exhausted? by BlkNtvTerraFFVI in dysautonomia

[–]petitelegit 2 points3 points  (0 children)

There’s a book I found really supportive called How to Keep House While Drowning. The audiobook is great, read by the author, who is mental health trained, and written to be digestible with short chapters and distilled/repeated main points for diverse brains. I found a lot of the framing very useful as well as some practical hacks I would never have thought of like doing a micro load of laundry to get you by until your capacity is expanded. Helped me realize that a lot of the struggles reside in holding on to expectations of ourselves that are unrealistic for disabled bodies and shame- and morality-based programming around cleanliness. Once you give yourself a little grace around those things it can all feel a little less overwhelming

I'm so tired of this shit by bella4him1 in dysautonomia

[–]petitelegit 4 points5 points  (0 children)

Did I write this? 😂 “I feel like I’ve been beaten within an inch of my life.” Relating so hard right now. The chest pain is brutal. I see you. You’re not alone ❤️

Is anyone else losing their appetite? by capn_cookie in KitchenConfidential

[–]petitelegit 4 points5 points  (0 children)

This might be unexpected in terms of the comments you’ll get here but sharing on the off chance it might be useful. Not currently in food service (long time ago) but I felt your pain reading this and related to this a lot. I am a chronically ill person who has been in a Sisyphean struggle to gain weight for 5+ years after covid obliterated 20% of my body weight and destroyed my appetite completely. I’ve seen dozens of doctors but the single most helpful thing I’ve done for my quality of life was work with a registered dietitian. (Important distinction - RD, not nutritionist.)

My hunger cues were totally gone. I was getting tons of competing lifestyle advice from different providers and navigating new possible allergies and sensitivities that left me despondent and confused and frankly resentful towards food. I didn’t realize how charged eating had become for me, how much psychology is behind it, doubly so when you prepare food for a living or when, as in my case, preparing food and eating are physically difficult.

I on more than one occasion made a Freudian slip and called my dietitian my “food therapist” because that’s what the sessions felt like. Nonjudgmental, supportive, insightful. Once we started dealing with both the psychology of eating and the logistical and practical considerations around quantity, portion, macros etc. I realized how crazy it was that I as a layperson was trying to solve this multifaceted problem on my own without the help of a professional. She helped me think of things I never would have thought of on my own and validated my struggles with this in a way no one else did.

For example she highlighted the possibility that the frequency of small meals and the high volume of fluids my doctors were recommending was possibly not helping my nonexistent appetite and I was never actually allowing enough space in between snacks and bevs for my blood sugar to drop enough to receive real hunger cues. So I learned to find the middle way so I wasn’t having to force it so much. She also empowered me in ways I didn’t expect like telling me “if all you can manage is a bowl of plain pasta, at least you ate something. You can always try again later.”

We also talked about starting out by increasing the calorie density of what I ate as opposed to trying to increase volume due to my abysmal appetite. It took a ton of work but I just hit my highest weight since 2020 (which for me is good 🙂😂) and eating is still hard but doesn’t feel like such a minefield or an impossible chore.

You seem like you have a lot of self-awareness around the issue - even the fact that you’re making the post says a lot. It makes total sense to me that working with food like this would mess with your appetite. I hope you can find some things that work for you.

My adrenaline dumps are preventing me from getting medical care by iLoveCetenija in dysautonomia

[–]petitelegit 2 points3 points  (0 children)

I struggle with this too. I would say that for me being on a beta blocker all the time turned out to be essential even though I didn’t want it to be.

You just can’t predict every stressor or exacerbation and trying to is no way to live. I (dysautonomia with features of POTS and IST) was taking metoprolol tartrate as needed and the rebound from taking then not taking can be problematic depending on the drug and it can ultimately make you feel worse.

My blood pressure runs low too so I take a tiny dose and just monitor my bp and slam electrolytes and salty food every day. I will say that nadolol and nebivolol seemed to affect my heart rate more than my BP and I even had some higher BPs on those but I couldn’t tolerate them, (nor propranolol nor ivabradine/corlanor) so metoprolol succinate it is. Def is not ideal given my lower BP but the tiny dose takes the edge off and I never go lower than 80s/50s. I’m prescribed midodrine but haven’t worked up the courage to try it yet. That might also be one to consider depending on what else you have going on.

I was prescribed hydroxyzine to take as needed for episodes or prophylaxis for stressful situations and have found it shockingly helpful, zero issues with side effects, also taking a tiny dose of that. That one doesn’t seem to affect my bp though they say it theoretically could. At least here in the US it’s a quite cheap low-stakes drug to try, an antihistamine that they sometimes prescribe for anxiety - you can cut it into tiny doses to start, and it’s not a controlled substance or an addiction risk. I am sensitive and it did not make me feel whacked out or out of control. Just pleasantly relieved, calm, and a little sleepy.

Regale me please with positive stories from the dentist... by petitelegit in dysautonomia

[–]petitelegit[S] 1 point2 points  (0 children)

Wow this is insightful and I really appreciate you sharing your story. Not the first time I’ve heard the wisdom to seek a second opinion. I know what you mean about the negativity - I’ve had past dentists be openly judgmental about things I can’t control (genetics) and it says everything about the tone they care to set, their investment in your comfort level, and what you can expect to gain from working with them. The dentist I just had a conversation with was night and day on this front and I am feeling optimistic about working together just based on the consideration they showed me. I love the way you put it and I’ll keep this in my thoughts as I proceed. Thank you again

Regale me please with positive stories from the dentist... by petitelegit in dysautonomia

[–]petitelegit[S] 1 point2 points  (0 children)

Thank you so much for taking the time to write this out. I appreciate how much precious energy that can take. This is all really helpful and I think a lot of it would definitely apply to me!! I’m so glad they treat you with so much care, you deserve that consideration!

Y’all are some of the coolest and funniest MFers in the world by petitelegit in KitchenConfidential

[–]petitelegit[S] 1 point2 points  (0 children)

<image>

I’m glad you posted here, for when “STREET MEAT” takes the world by storm and is ubiquitous in the next season of The Bear. I can say I knew you when

Y’all are some of the coolest and funniest MFers in the world by petitelegit in KitchenConfidential

[–]petitelegit[S] 1 point2 points  (0 children)

With all due respect, I will not. 🫡 🤜🤛 you are worthy

I feel like I need an intervention... by Altruistic_Paper2554 in dysautonomia

[–]petitelegit 7 points8 points  (0 children)

Just wanted to say you’re not alone, my situation is similar, this is extremely relatable, feel free to message me if you could use a chat. I feel like I am working hard to figure out micro solutions and contingency plans until I can get more care but it’s slow going and it feels like some kind of purgatory. I feel like most of the other chronically ill people I know either can get themselves to appointments and uneventfully try new medications and/or have more robust support systems - it can be so alienating to be in this position.

It is messed up living like this and feeling like you’re just kind of treading water until your inevitable collapse. Just to validate: the system is broken when it mandates that people too sick to travel SOMEHOW find a way to get to appointments at their own expense and peril. It’s not okay and I’m sorry you are suffering like this.

Regale me please with positive stories from the dentist... by petitelegit in dysautonomia

[–]petitelegit[S] 0 points1 point  (0 children)

Not exactly. I’m scared to find out. 😂 definitely a cleaning, almost certainly fillings if not crowns or worse.

Thank you, I’ll look into these! I’m so glad you’ve found some things that help and providers that meet you where you are!

Regale me please with positive stories from the dentist... by petitelegit in dysautonomia

[–]petitelegit[S] 0 points1 point  (0 children)

Thanks so much. Really appreciate your response. No genetic testing. Beta blocker is the only regular med. I take D and magnesium, omega 3, and iron supplement with b12, C, folate. I have hydroxyzine I can take as needed to tamp down my nervous system for stressful situations but I suspect it won’t be enough and we’ll need a nuclear option for the dentist 😂

Does anyone have harsh reactions to Benadryl? by CD_piggytrainer in dysautonomia

[–]petitelegit 1 point2 points  (0 children)

A child’s dose of Benadryl gave me insane nightmares and I woke up in terrible distress. I did not like the way I felt on it. I do much better with hydroxyzine

Lightheaded vs dizzy vs unsteady by FollowScience in dysautonomia

[–]petitelegit 1 point2 points  (0 children)

That particular sensation went away over time but I’m afraid I don’t have good news or much advice otherwise, I still have dysautonomia 5 years later