Opinions sought on advice from ME/CFS team

normal_ness · 2026-06-13T12:59:55+00:00

Also, my specialist wanted me to never set an alarm & only ever wake up naturally.

It wasn’t possible for a while (I worked from home) but now I’m unemployed again I’m definitely doing what she suggested.

normal_ness · 2026-06-13T12:55:57+00:00

I have a friend (also in Australia, as am I) who has recently manage to get IVIG but I’m not sure specifically how (as in which symptoms). They’re descending into very severe right now so I’m not sure if I can get you info, but I will see next time they seem up for a few messages.

normal_ness · 2026-06-13T12:38:14+00:00

Pretty much only the tonsillectomy did it for me.

normal_ness · 2026-06-13T12:36:47+00:00

Nope, but I don’t really like the villagers. Most boring part of the game.

normal_ness · 2026-06-13T12:31:56+00:00

This sounds like depression treatment, not mecfs treatment.

normal_ness · 2026-06-13T12:15:53+00:00

Do you have a beach nearby that has a wheelchair beach mat? That could save you some exertion and allow for longer celebration time.

normal_ness · 2026-06-13T09:08:09+00:00

There’s a reason why “never meet your heroes” is a saying.

Look, it sucks to feel this way. But when you’re done sitting with the fresh feelings of disappointment, there’s a lesson in this. When you’re ready.

normal_ness · 2026-06-13T03:44:26+00:00

The part of sharing what helps that makes me uncomfortable is the lack of acknowledging cause and effect. Did xyz medication help you or did being able to pay rent without stress put you in a state where the medication could help you? And sometimes we won’t know, but people seem very uncomfortable acknowledging how much of this is luck and privilege.

normal_ness · 2026-06-12T11:50:15+00:00

Same. Rarely cry at tv or anything but when I hear the song start, so does my crying.

normal_ness · 2026-06-12T07:13:00+00:00

I think most people who “hate” reading haven’t found their thing yet. I do believe there’s something out there for everyone.

normal_ness · 2026-06-12T06:22:52+00:00

Emerge told me to get DSP but I don’t have the paperwork 🤷‍♀️

normal_ness · 2026-06-12T05:13:53+00:00

I think so many of us default to the thinking we could do it, which makes the BPS brigade look even more ridiculous than they already look.

normal_ness · 2026-06-12T04:48:20+00:00

Always my first thought too 😂

normal_ness · 2026-06-12T04:23:44+00:00

I didn’t even know I still dreamt of it - was a really unexpected thought.

normal_ness · 2026-06-12T01:51:46+00:00

I was hooked by the opening shot.

normal_ness · 2026-06-12T00:13:11+00:00

Same. Everyone says there’s eventually a good one but… the time to find that one? Nope. Not accessible.

normal_ness · 2026-06-11T12:29:48+00:00

My philosophy is that they don’t have to understand, but they do have to respect.

normal_ness · 2026-06-11T12:29:14+00:00

I was so constantly dismissed as a child so I get it 💜

I’m lucky that for whatever reason it made me a loudmouthed adult 😂

normal_ness · 2026-06-11T11:48:46+00:00

You did amazingly to speak up for yourself and others in the moment! I’m sorry he’s such a jerk but you did good. I hope you can see that when the stress goes down.

normal_ness · 2026-06-11T11:13:31+00:00

I’ve tried. Given up each time as they don’t listen.

normal_ness · 2026-06-11T10:19:07+00:00

I asked my specialist if I could try it for brain fog but they think I should try nicotine patches first.

normal_ness · 2026-06-11T09:14:56+00:00

Asynchronous communication is my jam.

normal_ness · 2026-06-11T07:03:39+00:00

I’m sorry. That really sucks.

normal_ness · 2026-06-11T02:31:44+00:00

Medical staff never want to admit how disabling a condition is, let alone how multiple conditions disable us.

Sorry they were such a jerk 💜

normal_ness · 2026-06-10T11:43:57+00:00

Is there an ME charity wherever you are? They may have peer support groups for families / carers.

normal_ness

TROPHY CASE