u/Free_Avocados

From what I've read, ear defenders, including noise canceling headphones, are best at blocking low, constant sounds.

I live near a busy street with sirens going by often, a neighbour with a loud, high-pitched laugh, seagulls (I love them but their calls are difficult with noise sensitivity). I cannot move.

I'm looking for over-ear solutions because I'm unable to clean my ears well enough for continuous in-ear protection, and I had issues with them even when I was mild and cleaning my ears well, but I'm open to all suggestions.

I'm wondering if there is research on the brains of people who had ME in Canada, and if so, how to go about planning for future brain donation for this specific cause.

TLDR; Can't tolerate LDN, LDA helps but with side effects. Which other meds do you like best for severe ME?

I'm on LDA, and while it is helping (less severe PEM, less muscle pain, internal trembling mostly gone – these good effects have reduced my suffering a lot), I'm also having side effects. Twitching, which I'm going to ask my doctor to prescribe benzatropine for to see if that works, and insomnia after 2 weeks. I keep having to stop taking it for a bit after 2 weeks and start again. I've lowered the dose 3-4 times from 0.25mg down to 0.01mg every 3x a week, and lowering the dose has not made a difference in side effects. The twitching is actually getting worse.

I'm thinking about metformin because I also have high insulin now, but I'm afraid of the lactic acid buildup because I already have issues with that.

So far I've tried LDN, which I couldn't tolerate, and LDA, with the mentioned side effects.

I know I need to pace but I don't have the privilege of being able to while also doing the basic functions I need to do for survival. I'm poor without a caregiver.

I wish people would take into account that not everyone has their privilege when they tell others to pace and stabilize. I'm getting worse quickly and this is not my fault, it's a systemic issue to not have care if you don't have money or friends/family to take care of you 24/7.

It feels very much like blaming the victim to tell people to pace as if everyone has the choice. I'm trying so hard to help myself but can only do so much in this healthcare hellscape.

Which properties should be avoided, and which are the better ones? Lowest prices are key, but not at the cost of terrible management. All of Greater Victoria. I'm looking at different places but don't know which ones to trust or which ones are owned by slumlords. Thanks in advance.

Presentation is nothing when you are a void 🌑

I keep feeling weird because, due to chronic illness, I'm presenting "femme" against my will. I have longish boring hair (easier to keep it tied up and brush it once a week than to maintain a shorter style because I'm too sick to go to a hairdresser – I don't get people who say to buzz it because that's so much work/maintenance!), and often wear long skirts (breezy and airy, which is good when you only get bed baths once a week).

Noticing that I'm currently dressed pretty "masc."

But presentation becomes kind of meaningless when you have a disease that forces you to look a certain way.

I'm agender and I'm saying f*ck presentation. I'm not femme or masc, I'm beyond gender. Death to gender roles or presentations (for me). I am who I am, no matter what others see me as.

If no, booo.

I feel like I'm in some Monty Python skit where I'm on the ground bleeding to death and people are walking by saying, Stop exaggerating, I don't see anything wrong with you!

Will someone with the energy (hah) and comic prowess please expand on this?

I know there are none quite like ME, but to help them understand the seriousness with a disease that everyone knows about.

Edit: *mostly bedbound other than survival things. I read that fully bedbound is *bedridden* but I don't want to misrepresent myself as fully bedbound.

Basically I wish I had friends who were more like me, people who have had everything taken away from them by this disease, live in poverty, and don't have full-time care. For transparency, I'm middle-aged.

Being able to relate to another person is beautiful and needed.

Strong values of care and community, "leftist" but not the ableist kind, believe in Land Back and not talking to cops.

Many severe people are able to craft but I'm unable to do that anymore, which saddens me as a former artist and artisan. What's left is being able to watch non-violent/scary/dramatic shows while eating and chat a bit online.

Does this resonate with anyone?

I've read horror stories about air coolers destroying laptops.

A well-meaning family member bought me an air cooler for my small room because it gets really hot in the summer. The climate in summer is dry.

If I turn off my laptop and phone while using the cooler, will they be safe? From what I've read, it's the heat from the devices that causes condensation and then damage. My laptop can get pretty hot.

My room is small with a window that only opens a bit. I live with roommates so I usually keep the door closed. I could open the door to try to let the humidity out after turning off the cooler. But there's not much ventilation so I'm not sure how long it would take for the humidity to leave the air.

I've read horror stories about air coolers destroying laptops.

A well-meaning family member bought me an air cooler for my small room because it gets really hot in the summer. The climate in summer is dry.

If I turn off my laptop and phone while using the cooler, will they be safe? From what I've read, it's the heat from the devices that causes condensation and then damage. My laptop can get pretty hot.

My room is small with a window that only opens a bit. I live with roommates so I usually keep the door closed. I could open the door to try to let the humidity out after turning off the cooler. But there's not much ventilation so I'm not sure how long it would take for the humidity to leave the air.

Do not try to talk me out of my decision.

Obviously I can't do things with them as if I were healthy, but I'm thinking spaced-out cozy naps on a blanket in my yard.

I don't know if talking about death months before it possibly happens (if approved, but it's looking as if I might be) would be a good idea. Some of them know, but one family member in particular doesn't want to believe that I could die due to this illness and our conversations are strained when I say I might not live long. I seem to be pushing them away from the mere mention of a possibility of death because it's too painful for them to conceive of.

I feel so terribly guilty, but my suffering every day is too great, and I've been consistently getting worse for the many years I've had this disease. I'd rather die peacefully than continue to suffer medical neglect until I die.

So far it looks like an angry red area, skin is not broken, sensitive to touch especially pressure. I want to do something before it becomes dangerous because it is slowly getting worse.

My GP is not in the same city as me and it's too far to travel :( Can't get another GP quickly in my town in Canada. It takes more than 6 years. I'm on the wait list.

Because this only works for me temporarily before the symptoms return, *I DON'T RECOMMEND ANYONE TRY THIS* because it'll only feed the addiction.

However, I wonder why this works to completely eliminate symptoms before they appear.

I'm not sure I've ever had a full-blown episode. I've had SEVERE gut pain many many times bad enough to send me to the ER and used to throw up every day, especially in the morning. Maybe my CHS manifested more "back end" symptoms than "front end." Because it definitely wasn't mild when I had it severely.

I took digestive enzymes years ago and they worked temporarily for maybe a month or more to completely eliminate symptoms (before that I had symptoms 24/7 for a long time because I didn't know it was CHS), then suddenly the enzymes totally stopped working and the symptoms came back as bad as before.

Several years later, I'm doing it again and it's working again, but I know it's only a matter of time before it doesn't anymore. This time I'm smoking much smaller amounts, only once per day, and not every day, to make it last longer.

I'm just wondering about the science behind why digestive enzymes would eliminate symptoms and why the effect is only temporary.

Any scientifically minded people want to try to explain?

Has anyone else done this with same or different reaction?

Ingredients in Webber Naturals digestive enzymes:
- Alpha-Amylase (Aspergillus flavus var. oryzae) (whole) 50 mg (250 FCC DU)
- Betaine Hydrochloride (Beta vulgaris) (root) 50 mg
- Bromelain (Ananas comosus var. comosus) (stem) 50 mg (750 000 FCC PU)
- Papain (Carica papaya) (fruit) 25 mg (150 000 FCC PU)
- Papaya (Carica papaya) (fruit) 6.5 mg
- FCC: Food Chemical Codex; DU: Dextrinizing Unit; PU: Papain Unit

Non-Medicinal Ingredients:
Cellulose, dicalcium phosphate dihydrate, croscarmellose sodium, vegetable grade magnesium stearate (lubricant)

I know I'm supposed to water haworthiopsis limifolia when the leaves become thin and curl in. But what if some leaves are doing that, and other leaves are still fat and full of water?

I'm planning on creating a will soon and I'm wondering how to divide funds. I'm in Canada.

Can I say that I'd like to first use whatever money necessary for my funeral and surrounding expenses?

And can I say that I would like the remainder to be divided by, for example, 20% to one person, 40% to another, etc.? Or does it have to be specific dollar amounts?

I'd like to be prepared before meeting with the notary public. Any additional information is appreciated, as I don't know what to expect or how to plan for the meeting.

Thanks for your help.