loulou 12/02/12
Last reply 6 years ago
MS Matters Magazine

I Have just had my edition of MS Matters through the door from the MS society, just flicked through a couple of pages and one was about an article on “assisted dying” if you have MS on pge 5, the other pge 8 about two people losing close members of their family to MS, This has rather cont………

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loulou
6 years ago

upset me for the day! I know people do not like to bring this subject up but I worry about it so much, You do not have your life shortened because of MS I am told but I keep reading things like this! the magazine is on the side and I will probably bin it! any words of re-assurance greatly received, I am sorry to post this but it has quite upset me


GMG
6 years ago

Not surprised it’s upset you. All I can say is live your life how you want to and not in the fear of what may happen round the corner. I’ve heard just as many stories of people living well into their old age with MS and being relatively ok despite whatever symptoms they may have. One of the reasons why people use this website is to get away from depressing stories which often come in MS Matters and to get some positivity – I hope this may help you! Thanks for the heads up about it though – my copy came through in the post at the weekend too and I’ll make sure not to read them if I’m already having a ‘down’ day!! :-S


Gem
6 years ago

I always think that the thing to remember is that with pr without MS, none of us actually know what the future holds. Anyone could be hit by a bus tomorrow but nobody worries about that so why spend time worrying about what may never be with your MS. As GMG says, live life now and enjoy it. And if in doubt – maybe a spot of shoe/handbag shopping?! x


Gav
6 years ago

Nevermind getting hit by a bus, the earth is long everdue an asteroid strike. Seriously though, live life for the now, I try not to live my life anywhere else πŸ™‚


KateW
6 years ago

Lou-lou, I totally understand where you are coming from. I’ve just written to the MS Society to ask what on earth were they thinking publishing such articles! We have no idea what the future holds and I don’t intend to curl my toes up just yet because of MS. If anything there are many positives to having MS; I appreciate what I’ve got and waxing has never been so pain free! Ignore MS Matters, life is good :0)


loulou
6 years ago

Well done Kate I am so glad someone out there feels the same!!! I am going to write to them also, the assisted dying article was the first thing I set eyes on when I opened the mag, I will read with caution in future! if you get a response from them please do let me know, I will also x


Gav
6 years ago

I had a download of ms matters from that there ‘tinternet to see if I could read the bit that you two ladies have taken such umbridge with, because ultimatly is death is something we will all ahve to deal with one day, but hopefully not for quite some time. I can understand people wanting to die on their schedule if they feel they’ve lost control of everything else in their life.

But then I read this comment, and it REALLY fucks me off ‘Well said, Mary Hughes (MS Matters 98). Mary managed to sum up exactly how I, and no doubt many others, feel. I, too, have secondary progressive MS and also fi and many of the articles quite depressing, due to my own inability and frustration at no longer
being able to enjoy the things that I used to take for granted. It is wonderful to celebrate the achievements of people with a disability but letÒ€ℒs balance that, not only with the realism that Mary asks for, but also some sensitivity for those of us who, whilst struggling to keep going, often fall at the fi rst orsecond hurdle.’ what? You want some sympathy because you gave the fuck up? Life can be shit, it can be for anyone, but could you please piss off back into the whole of depression and negativity you appear to be wallowing in.

I’m sorry for my language, its just the one aspect of MS that really makes me irate, the people that get upset by the fact that something was taken from them, well bully for you, at least you had something to lose, I had the ability to run and the sport I loved playing taken away from me when I was just 23, five years ago, and I will be damned if I’ve given up hoping of playing again. Rant over πŸ™‚


Gem
6 years ago

Ooof. You tell ’em Gav. I think we should actually just be really glad we’re not them! Bunch of – as my mum would say – ‘moaning minnies’.

Right got to run. Big Fat Gipsy Wedding is on. BRILLIANT.

Keep smiling peeps!


T
6 years ago

Aww Gav – I love the eloquency (is that word?!) of ur comment! πŸ˜€


Gav
6 years ago

Gah, I used the wrong hole *embarrassed face* I do try to rant in a clinical manner, tugging at the heart strings at the appropriate times for maximum effect πŸ˜‰ I an normally such a happy, relaxed content chap πŸ˜€


Cariad
6 years ago

Gav-do you have a link to download this? I tried but the download I found was Sept/ Oct 11 and I couldn’t find a more recent one…


Gav
6 years ago

Was that the one with the thunder bird puppet on the front cover? I don’t think I downloaded the. Newest copy that this post it was commenting on, which just further exemplifies how out of touch the ms society is.


KateW
6 years ago

Lou-lou, I received a very polite response from the MS Society saying that they try to strike a balance between articles with more positive articles in MS Matters. Not entirely sold that this is the case from my own experience of receiving the magazine for the last two years. I suppose they can’t please everyone all of the time! :0) P.S. Gav, loved your rant!


loulou
6 years ago

Hardly striking a bloody balance are they!!! Anybody newly diagnosed seeks guidance as I did, I immediately logged on the MS Society for advice, the recent articles would scare the livin daylights out of people! I just think they should be a bit more sensitive! MS is not a death sentence just a possible and I say “possible” disability sentence and thats not the end of the world, anyway I believe MS is only given to “strong people!” We recently passed the MS centre HQ and I could not believe what a big flash building it is! is that where all the charity money goes to!!! All their research seems to be 15 bloomin years away!!
sorry, have had a glass of vino and letting it all out!!! Thanks for letting me know your reply Kate, and YES GAV you go for it, Luv ya!!!

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