Margo

It's like what ME researchers have been saying all along, it's a biological condition that needs real treatment options. 🤬 Why did they waste research funds on this? At least they did accurately report the outcome unlike PACE.

Don't use Easy Bathrooms if you're disabled. Faulty products, no after sales support, and apparently also don't listen to and appropriately consider needs so they seem to be helpful but aren't.

Much progress on bathroom today though.

Mrrr. We had to pick the sink from a catalogue as they didn't have many wall hung ones in the show room and they didn't warn us how deep it is (and I have no ability to translate numbers into size in my mind, never have). We went with wall hung so I could wheel under it and they knew this.

I love when there's an occasion to cook good food. Husband helped me prep potatoes for scalloped potatoes, which I decided truffle cheddar sounded like the perfect topping (no gruyere in the shop). Smells delicious in our house and I hope he feels loved even though he has to cook most of dinner.

They also put down a surface that is difficult to push a manual wheelchair onto. I'm unsure if they did audio descriptions of the images, they had a video playing separately.

love when mainstream media finally mentions the hemp ban 2 weeks after it happens.

Hand controls assessment went well enough (the car had issues, but they agreed it was the right adaptation), need the thing that goes on top of the wheel vs the push pull, so now I get to go car shopping and sign up for training with it. 🎉🎉

No clear aims. No asks that tie into how health services are actually funded. Just more of the asking MP's to "give us a pathway, please" and continuing to do so for each individual condition. They wouldn't even release what they are asking MP's to do in their drop in session.

If you're going into health support groups and asking people to write their MP's as part of a campaign by an organisation - be honest about who you are representing from the get go. I had doubts about the new Overlapping Illness Alliance and their first campaign confirmed it's just more of the same.

New Classification Criteria for Haemochromatosis Arthropathy On November 4th the European Alliance Of Associations for Rheumatology (EULAR) 2025 Classification Criteria for Haemochromatosis Arthropathy were published in the Annals of the Rheumatic Diseases.

Haemochromatosis UK doing great work on researching the arthritis that goes with it. For years doctors have said it causes no joint issues, but severe joint pain and arthritis is a debilitating symptom for many people. www.haemochromatosis.org.uk/news/new-cla...

Different needs than I have. I'd be looking at second hand vehicles if I reached that point because of how expensive motability is with their advanced payments.

Yeah, those are a different class than what I'm looking at because I wouldn't be able to manage the size of a van and they cost way too much upfront. Thankfully with a lift in the boot I'll be able to get the chair in and out without help. 🙂

Does she have a WAV? Those are the only ones still granted 5 yrs upfront. New rules go in from Dec 16 - there might be conditions where they will extend on cars, but sounds like they will be rare. www.motability.co.uk/get-support/...

So they're allowed to just directly mail you without you opting in? That's fucked up. This was addressed mail, not just a flyer dropped through the slot.

Would love to know how Reform got our mailing address? No one in our house has our address publicly listed on the voters register, I'm not a member of any party and my husband definitely isn't interested in them. Yet I just got a letter titled "Wales Needs Reform". It 100% does not need them!

Apparently today was the day to catch up on all the missed sleep from the workmen not showing up during the week, even with a few pain and cat interruptions. Definitely needed it! Sad to have missed the Wrexham women's goal fest though.

I ended up having to turn it off. Between the background noise and the ground level out of focus/shaky camera it was making me sick. 😢 I give them a lot of credit for working in such conditions, but when you have a vestibular disability it just doesn't work as a fan.

Crowd is as loud as the comms too. 😢

Was Bluetooth playing up - didn't work on 2 sets of headphones - but the main audio is okay. I usually have the headphones on because they cut out background noise here and my husband is working on music in his office.

Apparently my Bluetooth headphones aren't playing nice with it but the audio is working, will try to fix it at the half. 🙂 The amount of background noise means I am not sure I can cope with it. I can barely hear the co-comms.

Managed to get the women's match up on my TV today with the silk browser, but there's no sound. Is it just me? #AskWxm

Nice to see Keren with the captains band again, and it'll be good to see some of the younger squad members getting a chance - including Ryan Barnett's sister.

This needs urgent reporting to the councils environmental health department. I'm so sorry. They should be moved to safe shelter in a hotel while this is repaired!

I have to plan days out of the house in advance but it would be great to see you! 🙂

Arthur was the highest scoring championship goalie for Fantasy Football yesterday, he really kept us in it. I chose him knowing his form has picked up with the defense, but only 0.3% of people did!

It is annoying, but the hand I was dealt. Not much can be done about it even in places with functional health systems so you just deal the best you can (right now that's with kitty cuddles and pain meds). 🐱

I thought I'd clicked back to Lens main post, sorry for commenting on your reply!

I woke up from pain just in time to catch the pens. Congratulations! What a match for you to see live. 🔥🔥

It would be really nice if there was a unified way to access it all, I never thought I'd miss cable. 😂 Without fotmob I'd be lost for when matches start. I couldn't afford the cable sports packages so there is that... NowTV is much more reasonable.

Champions league is on Prime/TNT sports here (and occasionally BBC). Disney has the women's champions league now but not the men's, so this is interesting competition. I don't think there's any football on P+ in the UK right now.

You've gotta hit up bank st social too. Award winning coffee! It is genuinely so good and they use local roasters.