OK - so there I was in Southbourne, hot, bpothered and stumbling.
A lady asked me if I was ok and we got to talking about MS.
DO YOU KNOW WHAT SHE SAID!!! (Its laughable)
She mentioned Jack Osbourne’s recent diagnosis and (having ALREADY TOLD ME SHE DIDN’T KNOW ANYONE WITH MS) said that she had read that ‘drinking a glass of milk each morning helps him’ and therefore ‘I should do that and I’d feel a lot better.’
What?
I have cereal almost every morning. What do I pour on that? Water? Coffee?..what’s that you say??..oh yes, MILK!! Do you know - wish I’d had a GLASS of it instead of on CEREAL cause then I’d feel cured!!! (Told you its laughable)
I have absolutely nothing against Mr. Osbourne and wish him the best and wouldn’t want this disease for anyone. But what is it about a ‘celebrity’ coming out in the media that gives the common person the right to think they know everything about a disease when previously they didn’t???!!!
Gee.
Breathe.
Soul purified.
Rant over!!!
Thanks!!
Nic xx (who’s going of to drink a glass of SHUT THE HELL UP!!)
It’s dissapointing what perception a lot of people have about ms. We’ve moved home recently and I met a new neigbour and we got chatting, we talked about how big my new garden was and how I wished I could work on it like I used to be able to do with my other garden but now couldn’t because my ms wouldn’t let me.
It was purely a casual remark by me but to my astonishment she got really rude and said " you musn’t complain, there are lots of people far worse off than you, ms is not so bad."
I wasn’t complaining, it was just part of a casual exchange. Needless to say I might try to avoid her in the future.
I never go around looking for sympathy and I certainly wasn’t feeling sorry for myself that day but it just seems to be the norm that people think we msers are whingers just because we’re not visibly dying!!!
Sadly it never fails to shock or amaze me at just how insensitive people can be.
I turned to one one of my then best friends when I first received my diagnosis and his words to me were “Well I dont know what you’re worrying about, ms won’t affect you or change your life in any way”…this coming from a man who thinks the world’s come to an end if he breaks a fingernail…grhhh. They say that ignorance is bliss but maybe not for him, 'cos after 20 odd years of me propping him up he now has to cope on his own…
The news of Jack Osbourne’s dx of ms is very sad yes. Celebrities have a lot of ‘power’ and can do a lot of good. As Mr Osbourne has made the decision to tell the world he has ms let us hope that he uses his ‘power’ in the right way and help dispel some of the myths about the condition…without a glass of milk in his hand!
I agree Drakie, I find it difficult to bite my tongue when people with no knowledge feel compelled to offer ‘helpful’ advice.
Following my dx a couple of weeks ago I was sent several ‘links’ to sites by well-meaning friends, including one about a woman who cured her severe MS by changing her diet and another for the Lightning Process (they charge you lots of money to help you cure your illnesses by a type of ‘positive thinking’ approach). It’s difficult to thank people when you feel like screaming!
Like you Rubina, I had a friend who I supported for years through his constant negativity and all he did was bring me down (in hindsight, I now realise that all the negative comments to me “you look like crap”, “you’ll never manage when Kai (my son) leaves home” etc. were his way of making himself feel better). It’s far better to have one less ‘friend’ than to keep one who makes you feel miserable.
OK, but at the end of the day she was trying to be helpful. Not deliberately mean or spiteful. While people with Ms have to confront this every day it is probable she has never come across it before. Best just to smile and say thanks!
My personal bug is people who say how well my husband is looking - happened on Friday when we had friends over in the evening. All day he had been so ill that I was thinking of cancelling. You def. get more empathy if you have a broken leg or a black eye!
Well, reading this has made me laugh - I cant stand milk!!
With me, I am desperate to find people in my world.
A few years ago, I was ‘walking’ past a cafe in town when a man sitting with his wife and 2 friends shouted out ‘retard’ to me.
Mmmm - bless him!!!
I decided to walk into the cafe, order a drink and sit as close to him as possible.
Why? I dont know but I wanted to try and understand his physcology.
As i sat there and heard him commenting on most people passing by, I thought how sad it is that people are judged by the way that you look.
On Friday, spoke to my MS nurse with regards to the horrific time that I had been having on a drug that I was prescribed. I commented on what people on this forum had said about the drug (as I had put on a post) and he said.
'Yes but people on these type of forums, are angry and like to moan.
Blimey - I was so glad that we were not face to face!!!
I said - these are real people, who deal with MS every day and provide advice and support to other’s. Not you and your lot who are doing their best but can only work within certain budget guide lines.
I would like to say - Thank you to everyone on this forum. Its not sooo lonely having people around who understand.
Good luck with your milk, would you like me to send you some Angel Delight - hee hee
People are so ignorant - do are gp’s. When first diagnosed I was in a state of shock, depressed and feeling absolutely dreadful due to the ongoing ON and fatigue, plus weakness on my right side, and of course had to go see him. He wasnt my usual doctor by the way, he just said when I told him I was shocked at my diagnosis: YOUR HARDLY A SPRING CHICKEN ARE YOU!!! Needless to say I didnt see him again. I think regardless of age, (and I was only 49) insensitivity can cause more harm than good and surely doctors get this sort of training when people are in shock.
Also an ex good friend kept telling me it was all in my head, even after diagnosis. She insisted if I thought positively I would snap out of it. She had heard that people can go blind if they have psychological problems! I didnt see her for long either.
Now when i say I cannot do something I mean it, yet Im still convincing people that if I try steps Im fatigued for a couple of weeks, if I walk too far, Im useless because Im in pain, suffer spasms and no good to anyone. Im told to pace, yet others think Im being lazy.
Now Im under investigation for another fatiguing disease on top of ms. Wonder what will be said then: oh your looking for excuses?
People never fail to shock those already suffering do they.
HI, Where do some people come from? Its shocking the way someone can say" get on with it" or " pull yourself together, and keep busy". Keep busy? I would love 2, just kills me to do simple tasks at home.