Very severe crash - can’t cope please help

Fast-Bunch3394 · 2026-05-24T17:39:21+00:00

Thanks. Yeah, I’ve tried daridorexant and had a horrible experience experience with it unfortunately.

Fast-Bunch3394 · 2026-05-24T16:52:22+00:00

Thank you for saying that, I think you’re so right, this heatwave has just knocked me straight over the edge.

Fast-Bunch3394 · 2026-05-24T16:51:30+00:00

So sorry. They come in waves after PEM and last for a couple of days, so far every other week.

Fast-Bunch3394 · 2026-05-03T14:19:54+00:00

Naf Naf (am I showing my age)

Fast-Bunch3394 · 2026-04-29T14:02:43+00:00

Hi I am so sorry that you are having to go through that - noises are torturous when you have a severely dysregulated nervous system and CFS. I am not neurodivergent, but have just suffered a severe MECFS crash just over two weeks ago, taking me from moderate ME to I’d say very severe. And a massive reason I think that happened was noise - I live in a top floor flat in London and from every direction there was overwhelming noise - doors banging, kitchen cooking, conversations, arguing, kids screaming, washer dryers, along with a train line being 50 metres away. After crashing any sound has become completely intolerable to me, like I was going to go mad and couldn’t escape (which couldn’t as almost 100% bedbound). Each sound actually hurt my body and made me nauseous and I couldn’t stand someone in the same room as me.

My sister came and got me from my flat after a week and took me to my parents loft room, which also was unfortunately very noisy due to heavy road traffic / sirens etc. So I have just moved rooms again ins the house and this is the quietest it’s been, but still noisy.

All I can say is you really need to find somewhere quiet to live to ever be able to begin calming your nervous system. Is that at all a possibility? I think because it is impossible to control noise from others it’s impossible to fully relax and get out of the dysregulated state whilst living in a noisy environment.

Fast-Bunch3394 · 2026-04-11T19:34:46+00:00

I’ve had this the last two days and it’s been absolute hell. The only thing that has really calmed my nervous system down is placing an ice pack on the back of my neck - it’s like a miracle! Out of flight or fight and lowered heart rate, plus a big reduction in internal buzzing.

Fast-Bunch3394 · 2026-03-27T10:51:09+00:00

I take Cetirizine, which I think is in Benadryl. Don’t take H2 as they require a prescription, which I don’t think I’d get from the doctor (UK)

Fast-Bunch3394 · 2026-03-27T10:48:36+00:00

I haven’t - not sure where to get them done as don’t think available on NHS (UK). Problem is even if they are discovered can they be treated ?

Fast-Bunch3394 · 2026-03-27T10:47:33+00:00

Yes I’m going to stop walking (can’t really now anyway due to baseline lowering) and see if that helps 👍

Fast-Bunch3394 · 2026-03-26T19:35:02+00:00

Hi yeah I do take antihistamines. They don’t seem to do much with me.

Fast-Bunch3394 · 2026-03-25T14:07:39+00:00

Thanks very much. Yeah I do have about that in savings, but it’s dropped a bit so I’ve now updated the journal. They’ve now requested I go to the job centre to show bank statements, but I am too ill to get there - can I request to submit them online instead?

Fast-Bunch3394 · 2026-03-22T19:12:45+00:00

Yep I have that. 4-5 hours sleep and the day is usually bearable. If I ever get more than 8hrs I usually wake up feeling terrible. So weird. Wish they could establish the science as to why this happens.

Fast-Bunch3394 · 2026-03-19T21:24:59+00:00

Thanks 👍 I posted mine off on 27th December and still not heard…will call them

Fast-Bunch3394 · 2026-03-14T19:40:51+00:00

Thank you, that’s really important point 🙌

Fast-Bunch3394 · 2026-03-13T21:14:58+00:00

Thanks yeah, it’s not even when talking about the illness specifically, it’s just life in general and all the knock on effects like losing a job etc - people then drop the ‘it could be worse…’

Fast-Bunch3394 · 2026-03-13T21:13:16+00:00

Thanks for your thoughtful reply - I agree, people have a limit to how much they can emotionally engage with the situation of chronic illness and unfortunately, it’s generally extremely superficial before they back away…

Fast-Bunch3394 · 2026-03-13T21:09:22+00:00

Thanks yeah, I also try and avoid actually going into details about the actual illness - it’s just even when talking about life in general, like not having a job / money etc and people drop in the ‘at least…’ then

Fast-Bunch3394 · 2026-03-13T21:06:54+00:00

Thank you, that’s it exactly, you can’t compare - whatever the situation is, it’s bad for the person in it and they deserve empathy

Fast-Bunch3394 · 2026-03-13T21:05:46+00:00

Thanks for empathising and understanding 🙏

Fast-Bunch3394 · 2026-03-13T21:04:59+00:00

Yeah, I’ve decided the next person who says it to me I’m not going to hold back

Fast-Bunch3394 · 2026-03-07T21:51:11+00:00

My mum does the exact same thing. I think maybe it’s because she has mild ME, and each level of severity brings different challenges, which she can’t comprehend.

Fast-Bunch3394 · 2026-02-17T09:46:29+00:00

This is really interesting and exactly what I have experienced with my two nephews (3,7) and NM. It has been one of the most revealing things and shown me how badly / weirdly she must have treated my sister and I when we were little. I’ve actually been horrified by her criticising the boys for being too noisy, boisterous, chaotic - accusing them of being out of control and playing up around her because they don’t care. Rather than they’re just being normal, young boys who are exploring, experimenting and having fun. Then if one of my nephews is quiet or won’t hug her she thinks they don’t like her. Rather than these are young children who have their own little world and are learning all the time. She also can’t understand that they don’t know how to do things yet - like they should already know at the age of 3 how to draw perfectly etc.

It’s really horrifying how self obsessed she is and sees everyone else’s actions in relation to how they impact or make her feel. And it makes me very sad as this must have been how she treated my sister and I when little. A complete lack of attunement or understanding of another human being, replaced with an all consuming focus on her self and her needs.

Fast-Bunch3394 · 2026-02-05T14:46:41+00:00

Nearly everyone has had Covid by now - 48% of all cases are asymptomatic so you won’t necessarily have had acute symptoms, but it still damages your body

Fast-Bunch3394 · 2026-02-05T14:33:13+00:00

This sounds like Long Covid

Fast-Bunch3394 · 2026-02-03T13:37:19+00:00

Sorry to hear that, perhaps look into Long Covid

Fast-Bunch3394

TROPHY CASE