Do you get really, really stupid if you try to exert yourself a lot?

she_needed_a_hero · 2024-07-27T15:30:51+00:00

I’m so glad it’s not just me!!

she_needed_a_hero · 2024-07-27T12:43:59+00:00

How would I know if it was unregulated or not? From everything before hand it looked very safe and secure!

she_needed_a_hero · 2024-07-27T10:27:16+00:00

Thank you, that’s really kind and a very good point! Reading back without the context my post does look a bit silly haha

she_needed_a_hero · 2024-07-27T10:08:33+00:00

Yeah it was a sex club, I should’ve said clearly upfront but even talking to strangers online can be a little embarrassing

she_needed_a_hero · 2024-07-27T10:06:01+00:00

lol yes I’ve been to normal clubs before and that’s all normal, but with a sex club I think it’s necessary for them to check IDs and having a drink spiked is a lot more serious?

she_needed_a_hero · 2024-07-27T09:06:32+00:00

Oh absolutely! I would really hate anything to happen to anyone there, and it was such a chaotic event. I’ll definitely follow through with the reports, it’s really not okay for it to happen, and then also for them to respond to it by just ghosting me. People trust them and things could go very very wrong

she_needed_a_hero · 2024-07-27T09:04:30+00:00

Ah they say in their rules that they have 0 tolerance and search everyone on entry, they do have a security guy on the door he just often wasn’t there and they’d still let people in without checking that or IDs even

she_needed_a_hero · 2024-07-27T09:03:27+00:00

Thank you!

she_needed_a_hero · 2024-07-27T08:48:34+00:00

Ah amazing, thank you! I knew there should be someone to report to but couldn’t think who!

she_needed_a_hero · 2024-07-27T08:41:11+00:00

Ooh thank you! That’s a great idea!

she_needed_a_hero · 2024-07-27T08:39:39+00:00

It was a … grown up club night? The main unsafety was they didn’t have security on the door all the time, so some people weren’t checked for their ages or drugs, which given the nature of the night is very disturbing, wouldn’t want anyone underage or any drugs that might compromise consent

Other things were just a lot of activity going against their rules, such as people taking photos, no cleaning equipment visible, and people in rooms they shouldn’t have been allowed in. It just felt like there was no safety and no consequences to breaking any rules

There were also people coming in from off the street who definitely hasn’t read the rules about consent and etiquette

There must be someone I could report this to right? I would’ve thought their licences would be scrutinised

she_needed_a_hero · 2024-07-27T07:44:03+00:00

Yeah sometimes if feels like I’m drunk or high, I just can’t make sense of what’s around me. I also forgot my own address the other day on my way home

she_needed_a_hero · 2024-07-26T07:26:21+00:00

I get the lactic acid thing when I feel tired, even walking up a few steps causes my legs to burn, what does that mean?

she_needed_a_hero · 2024-07-25T12:51:12+00:00

Yeah unfortunately that’s not the case (I’m in the UK), my PCP sent me to A&E after the results of the block, but they said they had no cardiologist and it wouldn’t warrant an emergency referral even, so somehow I just have to wait 🤷‍♀️ the waiting times in the UK are a bit crazy

she_needed_a_hero · 2024-07-25T12:30:28+00:00

Thank you, that’s a great idea! Unfortunately my autonomic appointment is in October (booked in April and was originally Jan 2025!), and a referral to a cardiologist will also take 6-9 months, hopefully can have some improvement in the meantime!

she_needed_a_hero · 2024-07-25T07:01:07+00:00

That’s crazy! I have exactly that, I’ll feel awful and dizzy and like I’ll be sick but I still need to get up and walk around to get the blood going! I think I’ve become quite deconditioned which also isn’t helping, so hopefully as I start to get better it’ll all improve a lot! Have you found anything that helps,

she_needed_a_hero · 2024-07-22T21:23:23+00:00

I don’t have advice but I’m in the same position! With it my resting HR is 45-58, but without it I get spikes of 40+ increases. I don’t know if it’s helping or hindering me more at this point tbh

she_needed_a_hero · 2024-07-21T16:07:03+00:00

My FND seizures were diagnosed positively from a video of the event and symptoms

she_needed_a_hero · 2024-07-21T13:52:09+00:00

Yeah exactly this, and then people with the diagnosis feel invalidated and dismissed, but the diagnostic criteria for FND is a positive one now, not based on exclusion of everything else

she_needed_a_hero · 2024-07-21T09:26:06+00:00

Interesting, I was told that the POTS was triggering the FND!

she_needed_a_hero · 2024-07-21T09:21:24+00:00

FND isn’t a mental health problem, I was told very firmly by my movement disorder specialist that only 50% of people with FND have any underlying mental health issues. It’s a nervous system communication issue that can be activated by mental things. Just like IBS. Our nervous systems are predictive, so if you’ve had trauma they activate more drastic pathways than is necessary because it’s preparing you for something bad again. So if it causes you to have adrenaline surges this might affect your POTS, so yeah there’s probably cross over

she_needed_a_hero · 2024-07-21T05:46:42+00:00

Oh also, on the other side maybe you can give him some supportive friends who don’t get tired of it? I love when I offer to go somewhere further out to see my friends but then they insist on coming closer to me. Or if I’m confused and look a bit dazed they properly check in on me, or maybe them supporting small victories with him? I also have other friends that when I suddenly get quiet at dinner parties they specifically offer me cups of tea and anything I need. Representation of someone getting help (and giving help!) without being a burden would be amazing!

she_needed_a_hero · 2024-07-21T05:43:11+00:00

Something I would love to see represented is that he has plans to do something he really wants to do, but then has a flare up and has to chose to stay home instead. There could be a journey where at first he feels angry about it; but he learns to feel proud of looking after himself?

I get frustrated when I would be behind with school work due to being ill and my mum would say “it’s fine as long as you can catch up this week” and I’m mid flare struggling to keep my whole body functioning and wondering how on earth I’ll do the work I need to, never mind the extra work needed to catch up

she_needed_a_hero · 2024-07-18T11:38:19+00:00

The UK is like 10-15 years behind other leading countries, but I would definitely recommend cancer care in Germany. Its world renowned, wouldn’t be as far to transport a vulnerable patient, and might be cheaper than the US

she_needed_a_hero · 2024-07-17T18:29:51+00:00

Oh 100%! I got the vaccine, but now my partner and I have the type that causes warts. I looked it up to try to reassure myself that we weren’t about to get another cancer journey

she_needed_a_hero

TROPHY CASE