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It is also the old “silo” problem. Everyone does their particular part, and if they can’t help they pass you on to some other part. In reality, no part can help you.

It’s ok, nobody is doing care plans or following the guidelines.

Exactly, it’s dependent on what’s available in any local area which a local charity or group has set up. The chances are that a social prescription for a pwME is a lot of talking to and reading through offers we can’t access - various local community gardening, crochet and crafts and chair yoga...

Social prescribing is another myth - housebound people cant really join arts club, physical exercise or whatever. Connecting you to community groups - Ive only ever had negative experiences of self-organised patient type initiatives, I’m afraid. MLM, black market drugs, illegal drugs, stalkerish...

They’re only guidelines where the illness is of unknown eitology and there’s no diagnostic test or treatment, that’s for sure. Probably a bit different for your Cancer etc.

Quite.

There is no care. You can’t access something which doesn’t exist. Social services assessed I can have one visit per day for 15 minutes, the carer will microwave food and pass it to me. Any other domestic assistance I need to pay for myself. Adult services assessed my home as adequate, no aids...

It’s a horrible process, yes. I had to go to appeal to get basic level. But in order to actually “pace” I need higher level. I’m not sure that “well yes I can do x, y, z but I shouldn’t” will wash.

I guess there will be a new health minister. It’s so disappointing because Gwynne had experienced Long Covid there was hope he’d be a good ally.

I agree with this approach. On moving here, I was met with thick grease. I applied the cleaning product and I bought cheap shower exfoliation gloves which I put on over rubber gloves, and just squished my hands in the filth, with a bowl of warm water for rinsing! Gloves only survived one job...

I bought one of these for £28 in the sale. Cheapo versions are available on Amazon, eBay etc. It is brilliant for cleaning the bath, and also the wooden floor if I have spilled something. You do have to have some arm strength to control it, but no bending or scrubbing pressure needed! In fact...

Andrew Gwynne Health Secretary Sacked over offensive comments https://news.sky.com/story/andrew-gwynne-sacked-as-health-minister-over-comments-posted-on-internal-whatsapp-group-13305272

I dare you to reply “because”

A different type of frailty called PEM perhaps? Which isn’t actually frailty.

I feel like Sonya promised a review of all docs in light of the last letter?

That’s nice. Or you can just ask visible for their data, they have monthly FUNCAP 27 as well as daily exertion, heart rate etc.

I think the “feel like…” is corporate speak. It is useful in a 1-1 or personal situation to acknowledge someone’s sense of a situation and/or their feelings. It is passive-aggressive in a corporate/formal situation to minimise someone’s complaint as a “feeling”. It recognises that point of...

I was recently in severe pain (same as most months) I looked on the internet. I’d rate my pain at 8 on the 1-10 pain scale. If I didn’t know it was period pain, I’d call an ambulance. Apparently it’s not a concern to have such pain for up to 3 days during menstruation. Intense pain, limiting...

I got eczema and hay fever for the first times in the 2 years before I became unwell (which is now the “start” of my ME) recently become allergic to my cat, also have the micropor tape irritation, can’t bear it!

This just reminded. I read “something” on the internet about sleep apnoea. It said one of the signs can be “controlling” behaviour. It was clearly referring to men. I thought that was interesting as it is traditionally a “male” problem (although it affects plenty of women) If you are having un...