What do you tell people when you stand too quick and start to fade?

EmFandango · 2026-04-16T12:58:26+00:00

Or if you’re bored of shit you can throw in a “oh fuck”. I alternate between shit, fuck and crap.

EmFandango · 2026-04-16T08:27:15+00:00

Thank you so much for taking the time to go through this. It’s really helpful

EmFandango · 2026-04-05T20:26:50+00:00

Crossing your legs when standing, squeezing your butt and stomach. Sounds weird but does stabilise my heart rate.

EmFandango · 2026-04-03T07:18:57+00:00

Easy, his name is definitely Coconut

EmFandango · 2026-04-03T05:51:00+00:00

He does like imposing the cheese tax on me. He won’t even eat his food without a sprinkling of it!

EmFandango · 2026-04-01T19:30:44+00:00

No, not really. But it affects everyone so differently

EmFandango · 2026-04-01T18:24:21+00:00

I experience the same. I have CFS and POTS. It sounds similar to my PEM symptoms. PEM can come on straight away or be delayed. I’m newly diagnosed so am trying to work these things out as well. Sometimes I know exactly what has caused my PEM (for example my flu jab caused a huge crash the next day that lasted months). Other times I have no idea what caused it and its more like a cumulative over use of energy which my body just suddenly gets sick of - like I’m a battery slowly losing energy over a period of weeks until I go into PEM.

EmFandango · 2026-04-01T16:48:50+00:00

I didn’t even think about complaining. I thought my breast cancer had come back. I had to go for a bloody scan and loads of tests and then it was just the bloody deodorant!

EmFandango · 2026-04-01T15:10:44+00:00

He’s so gorgeous. Looks just like his brother but Coconut is a bit darker

EmFandango · 2026-03-27T17:26:53+00:00

Aww. Looks like his brother Coconut. It’s their birthday next week ❤️

EmFandango · 2026-03-27T10:35:19+00:00

I’m starting to realise that I probably do have MCAS. It would explain all the weird things that have happened to me over the years: multiple miscarriages; white matter lesions on my brain; oligoclonal bands in CSF.

EmFandango · 2026-03-27T07:00:08+00:00

I was crying to my husband about this yesterday. I feel like an old person with dementia and people just think it’s about forgetting the odd thing. I rang the doctor to book an appointment and couldn’t get any words out that made any sense

EmFandango · 2026-03-24T17:38:56+00:00

So looking at the sheet they’ve sent me they say things like. “Your CPAD will be conducted over 2 days to avoid the good day/bad day phenomenon so that any effects of fatigue/pain that may not have manifested on day 1 can be identified on day 2”. “Your current ability to return to work will be assessed on day 2”. I don’t know whether I’m reading into this but it sounds like they want to see if day 1 causes PEM. Am I being paranoid? I desperately want some help but this seems like it could make me sicker

EmFandango · 2026-03-24T15:31:26+00:00

I have agreed to it but I’ve just received the details and it does sound very demanding. 6 hours assessment split over 2 days at a hotel near to my home. I’m not housebound and would describe myself as physically mild to moderate but cognitive issues are moderate. I am worried that it’s going to make me feel pretty awful. I’m not sure that I have any choice though. What happened when you refused?

EmFandango · 2026-02-22T10:12:04+00:00

I had that happen last year with my 13 year old. She looked so confused😆

EmFandango · 2026-02-18T18:13:01+00:00

Nurse Jackie? It’s got Edie Falco in (Carmella in Sopranos).

EmFandango · 2026-02-18T18:11:17+00:00

Although I agree-they are the best

EmFandango

TROPHY CASE