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They mean well

So a bit of a rant here but is it just me or does anybody else get ‘advice’ from people ie friends etc that just winds u up. I had 1 glass of wine after work the other week and my friend text me to remind me that that sort of thing won’t help my MS and I need to look after myself better! I find it so frustrating! I knoe they mean well but come on! This happens so often now! X

I think it goes with the territory, having an unusual condition people will want to show they care by giving advice or an opinion. It doesn’t wind me up at all, I can be selective. Either listen or ignore but either way, do it with a smile.

A relative who is older than me has recently taken up running and is now having knee pain so last night on the phone I gave the benefit of my non existent medical knowledge by suggesting they stop running and maybe take up swimming or something less stressful on the joints. Didn’t I do the very thing that winds you up?

People will always do this, it’s harmless generally. You and your medics know what is best for you, let the rest go.

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It’s just how it makes me feel, it’s like having a glass of wine is the only thing they think brings on a symptom or relapse. It’s how it comes across but like I said I know they mean well. I get told so often that I need to focus on my health which I do and half the people who tell me this eat junk 24/7 and don’t exercise. I do let it go as I have bigger things to worry about but I feel as if I have to justify myself that’s all!

Hi Emma

If a glass of wine is ‘not going to help your MS’ then you’d better not stick your head into the Brain Fog thread. We’re all turning into a rabid mob of dipsomaniacs. (Ie the kind of people that membership of AA might help - the kind with the 12 steps, not Roadside Recovery!)

Yes, we do get well meaning but ultimately useless advice from people who know nothing about MS. And the response to someone who suggests a glass of wine won’t help is to say: ‘well it won’t do much for you either’, or ‘yes it will, it will improve my mood and that in turn will help me come to terms with having MS’, or alternatively, ‘how do you know?’

But eventually, they’ll give up, because you will know what does or does not help you. And if they don’t, then you’ll have to figure out how to say, ‘when did you get your medical degree’ in a nice way.

Or just ignore it.

But do feel free to rant to us here, we’ve all been there. And sometimes people who think they ‘know’ just need a gentle nudge to remind them that you’re the one with MS.

And Val, how could you avoid making that suggestion? It kind of seems self evident that taking up running coupled with knee pain could be connected. MD or not.

Sue

Thank you Sue! It’s so hard to explain how things make you feel but you got it :slight_smile: the funny thing is the friends who say this are the ones who want to have a boozy night out with me lol which I do not do as often now as the next day it makes me feel rubbish, but they don’t worry that a bottle of wine on a sat night won’t help my MS! I guess you have to laugh really don’t you?! Xx

Like the friend who kept tagging me on a post about how green tea would cure ms. Have to admit after 2 glasses of wine i didn’t hold back with my response. E.g if my neuro who is a professor doesnt know how to cure my disease, then im sure as hell a pixy green tea won’t!! She apologised and has stopped tagging me in such things again… It really winds me up too!!!

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I know Sue, and I laughed at myself for saying it! But then whenever someone tells me they have a cold or flu, I always find myself advising rest/fluids/paracetamol… Maybe it’s just a ‘Mum thing’!

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Lol I have been advised by them to drink green tea too, green tea is rank wine is not haha il stick to the occasional glass of wine Thanks!

Oh yes, well meaning friends giving advice. Mind they do offer help which is gratefully received.

Some ask if I can still drink. I say my meds say, don’t take with alcohol. I take that literally and take them with water

then have some wine. I’m on muscle relaxants and wine is just another form of medicine!

Jen

The best one I’ve had is about being a meat eater and if I give it all up and become a vegan my body will heal itself and the ms will go… This made me me choke on my beer and spurt it all over the place… But to top it a weak later the same person turned up with a book of how not to kill your body with some wacky ideas about food… I’m afraid the books on the shelf I eat meat and enjoy a beer, ms isn’t making me give up my life…

hiya ah yes! drinking alcohol is bad for you. chocolate is bad for you. eating bananas are bad for you. breathing is bad for you. where there is a study to ‘prove’ something is good for you then there will be another one conducted by someone else to ‘prove’ it isnt! i find that telling folk that ms is contagious if within 6ft of me soon shuts them up! yes-i know its bad of me but if you cant beat them them join them eh?! naughty ellie

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Ellie your wicked lol Pete

db

yes when the mood takes me!

ellie

ps booked the low access bus today for my drumming session on sat-looking forward to it!

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Cool, let me know how you go, it’s the best instrument in the world and brilliant for depression. Xx

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I’ve always found that the bottle of wine on the weekend doesn’t help my MS at all, however, the second bottle well that’s a different story.

Either bottle of wine also helps me to ingest and process the wealth of information well meaning people have about how I should treat my MS and what drugs I should be on. The latest has been a long argument or maybe I mean discussion about how I should get all my prescriptions for free because MS qualifies you for this.

Ultimately deep down I know it’s because they love me and care about me that they just want to find something to try and help and it’s their way of trying to not feel so helpless for us.

I generally just smile and move on these days, it’s not worth the hassle of explaining again and again. The only exception to this is my managers at work as no matter how many information sheets I give them and links to websites I provide they just don’t understand it, or maybe they just don’t want to understand it.

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It bloody should be on the nonsensical list of conditions for free prescriptions. Or free wine in lieu of prescriptions!!

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People do love to direct towards others (human or otherwise) the advice they should be taking themselves, but don’t. Like the booze-hounds who observe, apparently oblivious to the irony, that those of us with MS should make our bodies a temple. Another version is the fat git who shovels in the pies while while piously keeping his pet on a strict reducing diet, assuring the poor creature that he knows what is best for it!

Ah well. I’m sure we all do it too, in our way.

Alison

some folk still, after several years, inform me of the latest MS cure that might help me.

I tell `em, I havent got MS (anymore)

they apologise for forgetting…

and these are folk who shouldnt be having Brian Fog officially!

pollsx

i totally agree with sue about free wine on prescription but could we have gin and cognac too.

since i stocked up on my own bar i have no need for anti depressants!

and dark chocolate should be on prescription as well.

carole x

ps also cheese

great to see the inclusion of cheese, keep on rockin’ the various threads in the forum

M