Yesterday’s video

[AgedCrone]

I just read a post saying somebody couldn’t find the NRAS video.

Now … can’t find that post and I can’t find the video either.

It looks as if the link might have been taken down…..

Or my nonexistent technical skills have let me down?,

[Deeb1764]

it’s still there RA awareness week

[AgedCrone in reply to Deeb1764]

But is the ink to the video there?

[KittyJ]

Here you go AC healthunlocked.com/nras/pos...

[AgedCrone in reply to KittyJ]

Thank you….I hope whoever was looking for it finds it…I don’t want to watch it again.I find it so disappointing that such a distressing life changing disease was glossed over the way it was. It is an amazing opportunity missed….to really get the truth about RA across.

[KittyJ in reply to AgedCrone]

I nearly didn’t watch it before sharing, so glad I did as this won’t tell anyone anything 😔

[MW07 in reply to AgedCrone]

Totally agree with you. I have just posted a reply to Anita saying this.

[Hidden]

I am sorry this year's NRAS' RA Awareness Week video has not resonated with you. The young woman in the video is someone living with RA herself and this is her experience. Everyone's experience is of course different and the overwhelming fatigue is something that many who contact our helpline talk about as being completely misunderstood by colleagues and families. Hence that was why we focused on this particular symptom this year. Previous campaigns have focused on impacts on life of having RA.

We were very restricted on funds this year so this was produced in house as best we could. We fully take on board all your comments and feedback and this will be considered when deciding the theme for next year's RAAW.

[AgedCrone in reply to Hidden]

I’m sure if you had aproached some of the very willing med students studying to be rheumatologists they would have been happy to help describing their experiences…..of flares in particular ….or let’s face it we have some very knowledgeable people on this site….who I’m sure would have given of their experiences & knowledge willingly….even a spoken illustration ….say from a mother with young children trying to get through a flare.

Being diagnosed after retirement as I was …..I cannot even imagine the horror of being responsible for a baby I couldn’t pick up.

RA doesn’t respect age…..it ruined my & many, many other older people’s retirements…..a NRAS video really should make clear to the public that when a GP fobs off their aches & pains in their 50’s….they should ask firmly for RA tests….to attempt to arrest this horrid disease early…..(that of course applies for younger people too.)

[bpeal1 in reply to Hidden]

Focusing on fatigue is a great idea. Unfortunately when I watched the video I didn’t even realise that was the issue being highlighted. Maybe a voiceover or some captions might have helped.

[Hezekiah]

Is this the video, ? Or is it the one of Anita preparing at home, feeding cat,etc?youtu.be/F9YKPFR9Pa0?si=W37...(Not working as expected?)

Ooooops - this one clearly has 2022 on it, and it is the cat feeding one that you were referring to.

I guess there is a problem here, in respect of showing pain. Pain may be like floods - it doesn't video in a dramatic way.

That said, the 2022 video seemed to be saying more that the 2023 version.

[AgedCrone in reply to Hezekiah]

No..I hadn’t seen this video….it would seem OK to show it to people who already have RA and hope to progress as she does , but …as those of us who do have RA know, this doesn’t happen all the time, therefore it really just perpetuates the myth the general public believe . “Oh that’s great, everyone with RA gets better?”

I meant ..one where a woman was brushing her hair & another one with someone using a laptop.

[Hisue]

The 2023 RA video post we all commented on was deleted (taken down). It is very disappointing that the opinions of those of us who suffer terribly with RA were dismissed.

[Hisue in reply to Hisue]

I found the post again, with help of a kind member. Don’t know why I keep getting the message, “This post has been deleted”, when I click on replies.🤔 Is there a computer wiz available?

[Ryka]

I had missed the post where this was already discussed. Snd I just saw the video. Indeed very disappointing. Fatigue is one of the hardest things to across to others. I opened it hoping to find something which I can share with people to help them understand better. But this just makes it look like someone who is a bit "under the weather" like pretty much everyone is nowadays.

I heard that the lady herself has RA and its great that she is doing well. But on a day with fatigue flare starts in bed before even waking up fully. Its struggling to push the blanket and get up. Standing up feels like you are climbing the everest. Sitting on the toilet and wondering how long you can rest without worrying people. On such days, make up goes on cakey and the colour of the foundation doesnt match because your skin is ashen. Your scalp hurts, so combing is tough. Your fingers dont have the strength to pull the hairband to tie a bun.

And bending from the knees to put out cat feed?!?! If i did that i wouldnt be able to come back up again. Not because of inflamed knees but simply because of the bone deep exhaustion.

I know everyone's disease is different. And its different at different phases of life. Currently, fatigue leaves me like death warmed up.