To not do the ice bucket challenge

[Morethanalittlebitconfused]

I've not been nominated so it's a moot point really but if I were nominated I point blank wouldn't do it

DH thinks I'm being unreasonable on this, am I?

Thank you both.

I was a little sad I never got nominated for a no-makeup selfie (although I hardly ever wear makeup so it would just have been a normal selfie lol). I do get irate over the 'secret cancer campaigns' such as the hearts, bra colours etc as they are secret from so many people! Hearts (to me) didn't remind people to check their boobs in the way the selfies did.

DH doesnt want transactions done over the internet or phone. why, are you on the run? You can't expect a statement like that not to get picked up on mumsnet Darkest!

Sorry, TM, I meant to add best wishes for your recovery but I hit send too soon. xxx

I don't understand this whole importance of 'raising awareness'. Why is it so important to raise awareness? Surely everyone already knew what mnd was on a basic level but never cared to donate. When my mum told me of her diagnosis six months ago she said 'I've got mnd. You know, like Stephen Hawking.'

Why do people need to know more than that if you don't have it or know anyone that does? I need to know because I will be my mother's carer. I truly don't give a fuck about anyone else's 'awareness'. Maybe at the moment there are a lot of donations but the fad will pass and there will be something new to post on Facebook, the donations will dry up, there still won't be a cure for Mnd and my mum will still be dying.

I know I sound bitter and miserable. That's because I really truly am.

Iggi999

Sorry about your mum, hamdangle. Hopefully the extra 45 odd million £££ raised for MND will go some small way to preventing you or any of your descendants going through what your mum is now.

And thank you too, cheep xx

Ham, sorry to hear your mum is unwell

I do genuinely think that people who knew little about it before would maybe stop and think about donating next time. So that's why raising awareness will benefit the charity. And the funds they have raised will hopefully contribute towards more research on the condition.

I am not being financially abused but i easily could have been Im incredibly disappointed with the reponses on this thread to my comment.

Mner Mignonette wrote some brilliant posts on how she was warned by certain circles not to trust internet banking or trust doing cash transactions over the net on one of the threads about the NatWest RBS debacle but i cant find them now.

Ive been nothing but supportive on here towards women who are being financially abused and i dont think its a joking matter. Im feeling incredibly disappointed at the moment tbh.

Q- Why do people do all sorts of stuff? Charity coffee mornings, sponsored walks, non-school uniform days etc?
A- because it raises money for charities, raises awareness and all whilst HAVING FUN!
Jeez- if you don't want to do it then don't, but don't say it's because you don't think some people aren't donating- it makes you sound petulant. And how would you know? You are against posturing and showy donating, but distrustful if people don't state they are donating.
You don't see the point and think it's faddy but you are discussing the charity/Illness here thus proving that awareness has been made.
Some people just need to lighten up. A bit of online community spirit is a good thing. IMO

Hamdangle, I am so sorry to hear about your mum.

It is important to raise awareness because otherwise people don't donate. If there is no money, then there can be no research for a cure. No MND nurses. No support or advice given to families. No equipment like hoists, light-writers, ramps, night nurses or carers, PEG tubes, Ventilators, Yannikers, foam tubes to stop hands curling and thus nails digging into the skin. Some of this will come from the NHS, but there are not enough specialists to help with adequate care.

If you are going to become your Mum's carer then you are going to be like an intensive care nurse. But you will work a lot moire than 40-odd hours a week.

I'm so sorry because my next sentence may make me sound like a complete bitch but it is actually said with love and experience. You are only 6 months down the line. Stephen Hawking the exception to MND, not the rule. He is also a very rich man with the ability to afford the best possible care. Come back in 6, 12, 18 months and tell me that you don't give a fuck about anyone elses awareness.

The craze will stop eventually. But once that knowledge is in someone's head, it will always be there somewhere. And now the MNDA, MND Scotland, ALS org have a shit-load more money that they could even have hoped for. And that is A Good Thing. MND Scotland have had £6500 this week alone from donations. That is enough to give 6 people care for a whole year. They wouldn't have had that before.

I wish you and your mum and family all the very best and will alwasy be happy to listen if you ever need it.

Darkesteyes, you have been very upset on this thread, I think you need a real life hug. Try to get an early night in if you can, start again tomorrow.

Don't worry about what people say on FB about the icebucketchallenge or on this thread about internet banking. None of this is about those things, it is about you feeling you have to justify your behaviour/life to others. I have seen this done to you before with the red fence. You don't need to justify yourself or put yourself through people having a go at you.

My FB friends are people I like, why on earth would you have former bullies as friends?
You can simply decline. There is no big deal here. Just like when someone asks you to buy raffle tickets at an event, you just say no thank you. I don't understand why anyone considers that difficult.

I do think raising awareness is important, because it helps people support the carers. I did not know how bad it was until I saw that video of the young man in the US. It means when people say they are caring for someone with ALS/MND, then they don't need to explain much more. I know how horrific it is. I can't cure them (obviously) but I might be able to offer some kind of support.

Personally, I was pointing out the fact that it was your dh who didn't want you doing that. Otherwise, you'd just have said 'I don't want to do financial transactions over phone/net'. And iggi's comment was humorous, but like she said, you can't expect a statement like that not to be picked up on mumsnet. Neither of these posts were 'bullying' posts, why the disappointment?

Thanks LF. Thats very kind. Truth is i have never even had a credit card.

Its true DH doesnt like it either. And considering the reaction i got when i said i didnt want to do the challenge.................

I really think this is all brining up something else for you Darkesteyes, it isn't really about internet banking and the icebucket.

I hope you get it sorted, it can't be easy for you going through life feeling as you are.

OP yanbu, do what you want. The clogging up of fb will be over soon and it IS tedious. But then a lot of Facebook is tedious. And I agree a lot of charity stuff can be tedious crapola cringe nonsense. But it raises money. (And is a bit of fun for those who participate)

www.dailymail.co.uk/news/article-2733198/Is-CRUELEST-ice-bucket-challenge-Thug-dunks-PUPPY-freezing-water-sick-twist-charity-phenomenon.html

darkest you've clearly got something else going on and I hope you get that sorted.

This is by no means the first time I have seen you hijack a thread and there is a huge irony in moaning about attention seekers whilst making it all about you.

YANBU at all. I have no issue with raising awareness, it is shocking that funding has been cut to research because it's not considered "worth it" in financial payback (but that's the nature of the beast in the commercial world) and will be donating but no one is getting me to dump ice water on my head.

I'd like to thank cheepskram for linking to video of that poor young man who has just been diagnosed - I have shared his video on FB, along with some explanation of what ALS is. I'd also like to point out that it is only one type of MND, not all patients with MND have ALS. I'm so sorry that you live in fear of this disease as well, that must be immensely difficult.

I'm disgusted with MacMillan for hijacking the fundraising challenge as well, that's appalling. Perhaps they too, like the pharmaceutical companies, don't think that people with ALS are worth trying to save. :(

I watched that video too - there's a longer version that shows him writhing around for ages in pink hot pants washing a car. I almost didn't get to the important bit at the end. It really rammed it home for me, how much ALS/MND were gaining from this challenge.

The problem I have is that a few of my friends have either said they're doing the challenge for Macmillan or some other random charity of their choosing. I would like to bring up the fact that it should actually be for ALS, but I don't want to criticise what they're doing, when their hearts are obviously in the right place (even if they've got it a bit wrong ).

TM - perhaps you could link them to that video then? Without actually saying anything - I think he says it all for you.
That link does have the ice challenge as well, it's just set to start just after it, but you can rewind to the beginning. :)

Just realised that my post seems to be pointing out to cheepskram the "difference" between ALS and MND. That was very much not my intention as I'm quite sure that cheepskram knows that!

I think I'll do that, just put the link on my fb page. Although I wonder if they will make the connection that to donate to other charities is, essentially, taking away from ALS. Hopefully it will spark some realisation for them. Im generally not backward about coming forward, but on this occasion, it just wouldn't sit right with me to pull them on it. Bit sure why really.

I don't think cheep will think you were trying to educate her