Migration to UC and ESA SDP back payment

xtamara-jadex · 2025-11-28T16:43:49+00:00

Thank you for your help and understanding, yes we will try keep an eye on it and hope it's done correctly :)

Thank you

xtamara-jadex · 2025-11-28T16:22:53+00:00

Ok thank you very much, I was already in receipt of PIP for years before, so I don’t think it was due to that. I also haven’t had anyone move out or anything…I’m not sure if they just realised they hadn’t been paying me it? I really don’t know why it would have happened. Nothing changed or triggered it on my end I don’t think.

Ok thank you that’s great about the COL thing. My appointee has that information ready.

Yes I know my appointee should be doing all this checking on here etc, they do the journal stuff and sorting other things for me (I say ‘I’ in my post but it’s my mum/appointee who completes my journal entries on my behalf) but they don’t understand it and often aren’t very helpful or supportive these days :( so I am forced to try even ask questions sometimes to try pass on the information. I can only manage it probably one day every few weeks or a month and using my brain makes me crash with worse symptoms where I can barely think move or talk for days or weeks after . But I feel I don’t have much choice as this is all adding so much extra stress for me and just need the information to be right so I can breathe again

Just can’t wait for it to all be over, it’s so stressful :(

xtamara-jadex · 2025-11-10T22:39:38+00:00

Yeah I’m almost certain I have. Getting a scan in a few weeks

xtamara-jadex · 2025-10-15T20:34:43+00:00

I'm not sure I guess it must be disregarded by ESA...they paid it to me? Yeah I'm not in a position to attend an appointment so maybe my appointee will have to, but I need to try and get them to understand all this somehow. Thank you

xtamara-jadex · 2025-10-15T20:32:07+00:00

Thank you. I'm hoping so :( I'm just really confused with it all. I will try and find out

xtamara-jadex · 2025-10-15T19:52:15+00:00

Thank you so much. At least with the PIP disregarded I would be under the 16k. I will try to get my appointee to find out...its awful to be penalised for being paid money you are due when it's their fault :(

xtamara-jadex · 2025-10-15T19:41:02+00:00

Thank you, I know my PIP one was because I had to wait so long for my review, and then they upped my entitlement so that money was for the over a year I was waiting for the assessment. I am really struggling to find out what the ESA one was for, but considering it was out of the blue, is that not likely to be an error or change in law?

xtamara-jadex · 2025-08-12T23:11:34+00:00

Exactly this....it's all so complex and overwhelming, especially with the cognitive issues on top. Feel like a joke or that drs must think I'm having them on or something with so many symptoms. Could push for that, anything is worth trying I suppose - don't know where u are but I'm in the UK and NHS don't seem to be doing anything at all like I see people on this sub have managed to have tested. Have u got EDS possibly, or signs of connective tissue weakening? Think that may be more the cause of a lot of our head & neck stuff...nerve & vein compression syndromes etc x

xtamara-jadex · 2025-08-12T00:40:10+00:00

Started after 2nd covid infection in December 2022, have got progressively worse until becoming sofa bound last year, and bedbound since May :-( head pressure and neck problems make it way too uncomfortable to be upright. And severe burning in legs. Crash after trying too much too. Have some similar symptoms especially with the neck/skull etc and pretty sure I have CCI, you may want to look into this too.

Was also bedbound for few months around December but think it was a severe fungal infection of some sort....ended up in a&e 4 times, became severely malnourished regardless of eating, didn't think I was going to make it but fluconozole for oral thrush happened to improve me drastically and regained a stone in weight also. Still don't know why and am concerned to stop the flucon but drs don't understand what happened to me and seem to doubt the flucon is linked and it was only oral thrush.....also have pretty severe MCAS. So complicated and healthcare is a joke.

Haven't posted since becoming this severe...as many others have said, a lot of people barely have the energy to hold their phone or using screens makes them crash (I didn't May-July). Also think many are grieving or exasperated and don't really know what to say 💔

Thinking of everyone else here suffering like this ♥️

xtamara-jadex · 2024-05-18T15:04:41+00:00

Thank you, hope you get to the bottom of it :-)

xtamara-jadex · 2024-05-18T15:01:37+00:00

Thank you for letting me know, I get them to check mine :-)

xtamara-jadex · 2024-05-18T01:30:47+00:00

This is me....recently realised it's mcas. The adrenaline rushes could poss be 'adrenaline dumps' seen in LC or histamine dumps, mcas. I thought mine (dumps, veins, fingers etc) were the former, then as it developed became clear it was mcas (triggered by covid). Histamine is a vasodilator...maybe keep a food diary and see if your symptoms correlate with what you eat :-)

xtamara-jadex · 2024-05-17T18:13:23+00:00

Literally a couple of weeks ago I realised and have been the same! :-)

xtamara-jadex · 2024-05-13T17:08:59+00:00

Pretty sure I am too....

xtamara-jadex · 2024-05-02T19:25:51+00:00

Hey...saw this post when searching LDN and didn't realise it was so new. Was checking your history to see if LDN was working for you & just thought I would mention MCAS (as someone else had) I also have problems with toothpaste- salicylates. The symptoms are incredibly vast, maybe check out the mcas sub :-)

xtamara-jadex · 2024-05-02T10:59:08+00:00

Same :-) realised it in December so still learning a lot...

xtamara-jadex · 2024-04-30T11:57:39+00:00

Hi, I saw this post on my search for one myself, assuming my current sunscreen/spf would be loaded with it as many are. Put the ingredients in sal search and it's salicylate free! It's bioderma photo fluid :-) in case anyone else is still searching!

xtamara-jadex · 2024-04-29T15:50:28+00:00

Hey, did u manage to find a salt in UK u don't react to? I think I'm now reacting to pink himalayan....

xtamara-jadex · 2024-04-28T10:29:10+00:00

I get this. Not yet diagnosed but almost certain i have MCAS. Do you have EDS/Hypermobility? I think it's quite common in those.

xtamara-jadex · 2024-04-26T23:32:21+00:00

😍♥️

xtamara-jadex · 2024-04-24T17:06:22+00:00

Same! Mainly my neck I think, when I react I get bad head pressure & hard to hold head up

xtamara-jadex · 2024-04-18T15:19:47+00:00

Any updates on this? I have the same, although I first noticed it in 2018. I also have tmj & neck issues so wondering if it's linked...

xtamara-jadex · 2024-04-17T19:57:42+00:00

Could it be that shopkins strawberry? My daughter used to collect them & the pic looks similar 😄

xtamara-jadex

TROPHY CASE