LUPUS UK
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Sainsbury's Thumbs UP

Hello everyone

Just thought I'd share this with you all. Have been shopping at my local Sainsbury's this morning and needed the loo. I went to the disabled toilet and noticed they've put a new sign on the door!. 'Please Be Aware that a lot of disabilities are Invisible 'it said. I thought this was a fantastic acknowledgement and hope it's in all their stores. I'm sure you agree.

Hope your having as good a weekend as possible.

MistyX

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Hi misty

That is brilliant that Sainsburys have done that. Not sure of the Sainsburys here has done this. It is a bit out of the way to get to for me. The amount of ‘looks’ I have had for being in a toilet for the disabled or sitting in the front seats on the bus. Great that they are making people aware of invisable illness. Nice of more places do the same.

GE. Xx

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I have had sign makeup for my car with reference to people don’t see pain and misjudge you when leaving or getting to your car

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Hi GE how are you?. Thanks for your reply. I was most impressed when I saw what they'd done!. I do hope we see it elsewhere and in their other branches!. We'll have to keep a look out. Xx

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Hi misty.

I’m as well as I can be. Struggling a little with the weather. Rain, rain and more rain! Knee ultrasound is on Tuesday, after being postponed thanks to snow, so hopefully I will get some answers that help with the knees.

Colchicine is working wonders with ulcers! Only had a couple of mouth ulcers this last month. None anywhere else. Used to have almost constant, painful ulcers. These mouth ulcers are smaller too and not nearly so painful. Have an appointment with my rheumy on 23rd April so fingers crossed I may, after 23 years, get a diagnosis. I think just having a name for what is wrong caould help. Xx

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Hi GE

Good luck for your knees ultrasound on Tuesday. Sorry the bad weather delayed it. I was so lucky to get my injections on time last week.

I'm so glad too that colchicine is helping your ulcers and specially mouth ones. It looks like you've got Behchets doesn't it?. It will be a funny feeling to get a definitive diagnosis after 23 years!. That's a long time of wondering and fighting etc!, and then to reach the end of the road!. Not too long to wait for Rheumy appt in April and what about those Cardiology tests?. Xx

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Hi misty

I’ve not heard anything about the heart monitor being fitted or the nerve conduction tests. Mentioned it to my 🌟 GP when I saw him last week and he said that there are long waiting lists for both.

Rheumy appointment is 6 weeks tomorrow. Not long at all now. Seems even less if you break it down to Easter and school holidays in 3 weeks, then rheumy 3 weeks after that. Fingers crossed I get a diagnosis. So long I have wondered what is wrong and just told ‘it’s an autoimmune illness’ or ‘it’s a connective tissue disease’ without being given a name. I think it will be easier for me having a name for what is wrong. Xx

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It's tough waiting for tests when in need isn't it GE!. I so agree it will be much easier when you have a named diagnosis!. Easy too dealing with different doctors as well. Fingers tightly crossed for you for Tuesday. X

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It’s great isn’t it? The one in Tescos here has the same - just to keep things even! X

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That’s brilliant. Haven’t been in a big Tesco recently either. Was in Asda on Thursday and didn’t notice if they had such a notice or not. I wasn’t however looking. Will do next time I’m in any larger store. Xx

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I mean the one near the station. But I guess if one has it they all will? X

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Tesco Riverside. There isn’t a bus goes to that one so it’s usually Tesco Kingsway I manage to. Xx

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I only go into supermarkets to use toilets and cafe to warm up if it’s too cold in the car. That’s how I know!

My hubby does our shopping as I drive him nuts by having to keep on moving and rushing him along. I still don’t know why I can’t stand still but must keep moving forward - but it makes supermarket impossible! X

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My wife has the same problem with me.

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Yep --- Asda have those signs too 😊

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That's great Jackie, the main supermarkets having them!. Asda too are very community minded!. Thanks for replyingX

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Tescos twitchy are very community minded so I'm pleased to see this!. X

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I must check my local ! Im on a crutch still l and some people are more helpful as things are obvious . Then there are other people who nearly knock you over as i cant manoeuvre well and km slow . Im thinking of getting a horn ! Ive never thought of putting a note in the car , im not a blue badge holder but i need nore room to get out of the car ☹️

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Then apply for a blue badge - they can only say no. Nothing ventured...

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I don’t think im eligible , I should be having disc surgery in next couple of weeks and if all goes to plan I will be more mobile after a recovery period .

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It entirely depends on your local authority. Some would say no to a one legged man - others are more reasonable. Doesn't hurt to ask...

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Hi weathervane, thanks for your reply. We could do a survey of our local stores. I'm like you needing a stick and so I find people more than happy to help and I never get funny looks when I use disabled Loos!. Makes such a difference not to be abused. I think it's awful that people are judged so. Good luck for your disc surgery. Do hope it helps you. Keep us posted how you get on. X

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Very true misty! Unless your condition is outwardly visible it is assumed you are fit and healthy. I just want to get the surgery over and done with an obviously i hope it works as well 😀. Keep up the good work with your surveys as the info will be very useful xx

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Would be great weathervane if other forum members could see if similar signage was in their local store. All the best for your surgery. X

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I will check my local store 👍

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Im wild stubborn, it would be of benefit at times , it takes so long to get one that im hoping that I will have recovered and not need one - just yet 😏

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Me too I have my trusty seat stick always for my balance rather than arthritis. It really helps, especially when I’m wearing my presription shades! X

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Hi twitchy

Thank you for your great reply, glad your local Tesco has a similar sign!. It's good to see this happening more to help us be as independent as possible!. I've got a stick seat too and it's invaluable for extra sits!. Wouldn't be without it and it must be such a help to you with this awful dizziness!.

I hope your feeling better with the antibiotics for your wee infection!. I did read your post about wonder GP no 2 and it was interesting what he said about you seeing the Sjogren's expert privately!. Thank goodness he was ok about it just about because they can be funny but it's not their life!. I so agree with him about sticking to this specialist and Rheumy who you get on with and who understands it all much better!. It's important to have the right team of doctors round you who you get on with and they like you!. I'm sure they'll find a better neuro for you. You'll go far and by sticking to these two good gps .a good relationship with them is vital as they are our first port of call and have access to so much that we need!.

When is your pip tribunal?. Do hope that goes well. Hope your being spoilt today. X

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Ugh I’m having a massive Raynaud’s flare just now so will keep brief - agree with you about Tesco and everything else. Pip are total 🤬 because they’ve given me new date of tribunal as 29th of this month - knowing full well that my meeting with welfare rights is scheduled for 30th! Xxxx

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Oh twitchy, it's never ending isn't it?. Hope the Raynauds settles and you can talk some sense into the DWP. They really are the limit but I think they did it on purpose!. X

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Well I have a wonder GP apt an hour ago a half earlier and my big funding deadline all same day so it’s pretty nuts but I am telling myself if I don’t get any of it then I’ve nothing to lose at least. The two things are completely incompatible of course because I have to sell myself as a clever person with the energy and commitment to undertake a part time PhD and for PIP I have to be honest and say I’m really not!! Xx

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Wow!. Twitchy what a day that will be for you!. You'll have to remember which bit is best to say to which appt between PhD and DWP!. I'm sure you'll do well and get the right results. Fingers tightly crossed for you. X

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YAAAAAAY 👍👍👍👍👍👏👏👏👏👏😘🍀😘🍀

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Good for Sainsbury’s! I must say my local Sainsbury’s staff are amazing. One of the staff has lupus and as we’ve chatted about it a lot (over my almost daily shops for 3 hungry boys 🙄 😂) she has told her colleagues to watch out for me on bad days and they’re great. Just yesterday I had to sit down (on the floor!) twice and they came and helped and rushed me through. Ok the disease is more ‘visible’ at the moment as I have a black eye and bruised face from falling which helps understanding but they are really good anyway and always help people with a variety of problems 🙂

X

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Hi melba, thanks for your great reply. Sorry your struggling with lupus problems at the moment. It's wonderful hearing about your local store because mine the staff are very pleasant and well trained to help!. Makes such a difference to our independence doesn't it?.

You've got the added bonus of knowing a staff member with lupus and I'm just wondering if you've ever asked them about fundraising for your local lupus group?. There great too about raising money for local charities, you probably have done this already! Take careX

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Good point! I hadn’t thought about that but I will now!

X

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That's great melba, good luck and keep us posted. X

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Wow, that is quite wonderful!!

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It’s great I just wish the blue badge for parking said something like that instead of having the wheelchair logo as it’s really not appropriate for all disabilities!

I’ve seen this somewhere too about the disabled toilets can’t remember where maybe Morrison’s?? Or hospital can’t remember!

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Thanks Sara for your reply. Do agree with you about blue badge logo. Would be great if we could lobby to get it changed. Hope your doing better. X

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Hi, Misty.

The Sainsburys around Bristol have those signs, too. The first time I saw it, I was so delighted that I let out a loud whoop! of glee and got some very odd looks. Maybe they thought my disability was akin to Tourette's Syndrome...

Fingers crossed for your PIP tribunal. I'll be thinking of you.

Tess

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That's interesting skylark as I live further down from Bristol in deepest south west and I must admit I wanted to whoop too when I saw the sign!. These things just make such a difference. Hope your as well as possible and luckily it's not my pip tribunal but Twitchy's but thanks for the good wishes. I'm sure she'll see it. X

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