Back to our normal summer weather again, rain and bit cooler which is perfect for me. That intense heatwaves we had is tough on everyone particularly at night when my pillows are too hot to lay on
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I confess I have never used one, but a Chillow Pillow might be the answer to your problem. About £10 on Amazon.
totally we had a lot of fun back then, now its way over regulated i still talk to people i met on here but NOT ON THE FORUM, we have been friends for years on line and email.
everytime i come on here its mainly old stuff. they ruined the best forum we had. its over WOKE can i say that.
we need a place to be able to vent and discuss life.
how are you i am 25 years now with PPMS which believe it or not has become ACTIVE like an old volcanoe lol. i am about stage 8 now. being well looked after by the NHS i have to say that see my MS nurse every 3 months she comes to the house, but boy i miss this forum.
why fix something that simply wasnt broke they even made it harder to navigate.
have a great summer, stay cool.
xxxx crazy chick.
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yes i have joined a humour group on facebook its a laugh.
the trouble is now without this forum so much misinformation about MS is discussed on facebook it is so frustrating. miss the old days.
You’re right about the misinformation!
MSS and MST are still the go-to’s for definitive info about MS. After years of misdiagnosis, I was only diagnosed 4 1/2 years ago and part of my coping strategy was to devour anything written about MS and the more technical the better. I guess I’ve now “caught up” with latest initiatives and even participate in a clinical trial.
My go-to, then as now, is Prof G. £100 pa to subscribe but he lifts the lid not only on research but on NHS processes and performance of people working within it. From our man on the inside, he has covered gaslighting and attitudes of different consultants to treatment methods. Such knowledge arms us to get the best out of our own respective teams.
Might sound holier-than-thou, but having invested so much time and effort doing my own research, it annoys me to come on here and read endless “do you think I might have MS?” and similar threads. They clog up the forum, which is why I’ve advocated some sort of partitioning to direct newbies onto the MSS main pages to get answers, at least at first.
And yes, a good forum should be a community first and foremost. For sure, there needs to be the formal and technical stuff, but it could/ should be a meeting place, particularly for people who struggle to get out!
I am a member of a good local MSS group but there’s a complete disconnect between the local group and this forum. Why? Makes no sense.
Graeme
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Ms trust and here are the only sites I use. Professor g is only doing the selfie site which I sometimes have a look at. Never anything new to excite me, it’s kinda the same stuff over and over. Ms society near me was great to meet people but I don’t see any of the old crew I knew in there anymore. Alot of new people on the Facebook forums but most using anonymous names. I just don’t like Facebook, but too Americanised for me.
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I have my MS NURSE visit me every 3 months as she is coming next wednesday 27th august. so i talk to her about things. I have acute activity so on the urgent need list.
this was a great group at one time and we really enjoyed it, until they CHANGED it.
glad your still going though. xxxx