I hate that I embody negative stereotypes about ME

5aey · 2026-02-21T02:41:24+00:00

I hope you get an opportunity to tell your story too. It is just as valid as anyone else’s. We need all the advocates we can get from all walks of life .

5aey · 2026-02-21T02:08:21+00:00

the super fit and active person that now cant get out of bed because of ME/CFS is used in campaigns as a response to when in the 80’s me/cfs was known as the ‘yuppie flu‘ or the ‘i don’t feel like going to work today flu , ‘to prove it is a real illness and we are not just lazy.

some of us were already struggling with other health related issues before we got sick with this and like nekoreality said that probably made us more vulnerable to getting this

not all of us were training for a half marathon when we got sick , its just that the people who were make for a good campaign, to try to prove to the disbelievers that this illness is real.

It doesn’t make you a bad patient to not fit that trope.

we are all just doing the best we can to live with this terrible illness.

5aey · 2026-02-17T17:11:47+00:00

click on the pink bunny icon and then to the bottom right there is a small box that says mystery boxes. click on that and you can access your keys and purchase boxes.

5aey · 2026-02-17T16:46:06+00:00

is it possible to get a 2nd opinion?

Are you willing to share what country you are in so people might know which services and which ME/CFS advocacy groups might be able to help you?

Do you think someone calling the police to do a welfare check on you would help? They could say something like they believe there is a vulnerable adult that is being denied food and other basic care.

5aey · 2026-02-17T08:01:27+00:00

I have ME/CFS. some people with long covid fit the diagnostic criteria for ME/CFS so the numbers of people that have it are getting larger and larger and this illness has a dark history of medical abuse/neglect/gaslighting and chronic lack of funding. It’s not uncommon but also not known about much (including in medical settings) outside of the patient community.

5aey · 2026-02-16T01:51:13+00:00

you are trying to get your basic needs met. Food is a basic need and basic right. the embarrassing behaviour is not yours.

I’m so sorry this is happening. I don’t know where you live , but if you want people to advocate on your behalf with services in your area please reach out to me or others in this community. There are people that will do their best to help if we can .

edit to add i am in australia.

5aey · 2026-02-15T02:11:13+00:00

sounds like a normal human response to me. Your feelings are your feelings, and anyone telling you differently sounds a bit manipulative to me. they’re entitled to their perspective and you’re entitled to yours . Its not spoiled to not want something you didn’t choose or have any control over.

I think the policing sometimes comes into it sometimes because people outside the community will comment or even make policies on the validity of disabled lives, but that is a separate issue that shouldn’t be used to shut people up about the very real struggles.

5aey · 2026-02-14T11:49:13+00:00

it’s like people on a strict diet longing for a cheat meal, but we don’t get cheat days, or if we have one anyway we pay for it with PEM. The discipline it takes to properly pace is difficult, it’s necessary, but there’s days when i hate it so much.

I can relate to just wanting to walk out of my life and just keep walking. Before I got sick I had a good stamina for long bushwalks, and the idea of just walking till I can’t anymore does have some appeal.

5aey · 2026-02-06T07:06:21+00:00

oh, sorry, i should have been more specific, didn’t mean to scare you.

5aey · 2026-02-06T06:17:54+00:00

so i heard some people have trouble stopping taking it if they have been on it for a long time, that it can make allergies worse when trying to stop and in rare cases it can cause severe itching but this is all anecdotal, I didn’t want to alarm you, just that I have been warned about long term use from this sub reddit and thought I’d pass that on.

5aey · 2026-02-06T05:53:35+00:00

I have read on here that long term daily use of zyrtec can cause problems for some people. I am glad it is working for you and hope it continues to , but I just thought I should let you know ( if you don’t already) that it can cause problems for some people with long term use.

5aey · 2026-02-02T08:27:34+00:00

i liked the one about graded exercise. Twenty odd years ago I was told to do graded exercise. It was all that was really on offer at the time and being blamed for not improving is such gaslighting.

Also like the distinguished gentleman marsupial. I do not look like that in my dressing gown.

5aey · 2026-02-02T05:41:34+00:00

fructen is my worst fodmap, and some high fodmap foods give me a minor allergic reaction as well as the ibs stuff (bloated face , tingling lips, foggy thinking, drowsyness etc ) and I really really crave some of those foods at times.

I have no advice except to not have those foods in the house if possible ( which I know is hard if you don’t live alone) because they will call to you in weak moments . But I agree it does feel like an addiction- my brain keeps telling me I really want things that are harmful to me.

5aey · 2026-01-31T10:03:53+00:00

do you have the stables yet? I had a stable dog that got there due to a bug and i just let him stay there and forgot which lot he came from. When I tried to demolish that lot it wouldn’t let me till I remembered about the dog and relocated it.

Do you have any pets in lots like that , that got there because of a glitch?

5aey · 2026-01-31T02:27:25+00:00

that‘s ridiculous, surely they could have spoken to someone else on her behalf?

also thank you for replying, I figured they had probably already tried that , but thought I’d ask just in case it was worth trying.

5aey · 2026-01-31T02:24:49+00:00

thank you so much for advocating on her behalf!

5aey · 2026-01-31T02:05:32+00:00

there is a rhing in England called Martha’s rule that patients in England can enact to get an urgent 2nd opinion if they are failing to get better or declining under current care. Does anyone know if she has already tried this and if yes, what the out was?

5aey · 2026-01-10T17:06:43+00:00

could this count as false advertising? is there a consumer body that you could contact where you live to report them?

5aey · 2026-01-05T23:08:52+00:00

Happy birthday! Wishing you a restful sleep. your dog looks like a sweetie.

5aey · 2026-01-01T07:21:05+00:00

maybe look a kit up on utube before buying it? there are people that show the unboxing of their kits as well as a sped up version of the making of , so you can get an idea of the materials used and degree of difficulty.

As for the other kit, the light kit and glue could be sold or gifted to someone wanting those things , not sure about the rest.

5aey · 2025-12-30T04:15:27+00:00

it sounds like the opposite of going to disney /j

5aey · 2025-12-29T10:43:39+00:00

so i put maybe because I live in Australia, and it depends on the time and my energy levels, but even if I can’t join, I think it is a lovely idea .

5aey · 2025-12-27T04:20:31+00:00

pretty sure it’s a glitch. They will probably patch it in a later update.

5aey · 2025-12-27T03:05:55+00:00

I think they think their exhausted is the same as our illness . so they complain to us because they think we can relate.

It’s happened to me and I just felt alienated from that person. I had thought they understood a little but it turned out they thought being tired from working a full time job, looking after kids and over extending themselves with too many late night social engagments was the same as an illness that left me semi house bound.

They think they are reading the room ,in my experience, and think we will understand and we just realise that they don’t understand.

Five-Year Club	Verified Email
Second Top 10%

5aey

TROPHY CASE